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THORACIC OUTLET SURVIVORS,
PLEASE ENJOY THIS MEDICAL WEBSITE. YOU WILL NEED TO
TYPE THORACIC OUTLET SYNDROME IN THE SEARCH BAR, THEN ADD TO
BOOKMARKS!!
www.neuroguide.com

WOW!!! What a beauitful and wonderful card, Howard.
Thank you.

Ray & Liz

=================================

Dear members and Moderator,
Please let me introduce to you a website that may have some real
value to it medically. Personally asking people questions here has
really helped me and I dont know what I would do without all the great
advice from members here. I dont suggest you all go jump off a bridge
if someone says itll cure TOS I'm just saying the advice I have
recieved has been very useful, and except for the porn cam junkie that
has drifted in this site, this is really a great site.
Most of all I need to point out that today when I went to my
Safeway PharmCY THEY WOULD NOT GIVE ME MY MEDS THAT HAVE BEEN PAID FOR
FOR 4 YEARS NOW by workers compensation. It really took me by surprise
taken I am one of those "Well known" customers and they all know my
name. I called my attorney and she asked me if when my case settled
did I choose the lifetime paid medical? I answered yes, which I did,
then she said she would call me back.
By 7pm I still was unable to get my meds.......ugh! Well I started
wondering and well I asked for my prescription a few times days,
sometimes a week early for the past few months due to my once in a
while needing more due to the cold weather. Maybe my neurologists
deactivated my account because he thought I was misusing my meds which
I did tell him I was a few times by taking a few more that day then
allowed.
So my next thought was well arent neurologists supposed to know
how to deal with chronic pain patients?Like he could have called to
speak to me instead of thinking I'm a pill popper....good grief. I was
told and read by law that anyone diagnosed with chronic pain or has a
disability due to pain cannot be denied pain medication, by law says
the National Pain Foundation and its one of our rights.
So I finally accepted the fact that maybe my neuro is just trying
to give me the clue without jepardizing his Lisc. That makes
sence.Well I am going to bed tonight with only one of my pain meds. I
went to the Pharmacy and they let me have one of my pain meds, NORCO,
if I paid for it myself. How strange. Does this make sence? I could
have my medication, then get reinbursed but I have to pay?...well just
till they reactivate my account....so they think that someone with
chronic pain is going to stop taking a few extra now and then? WOW.
I guess I am going to contact the National Pain Foundation and
discuss Pain Managment with them. There is a protcol that Dr's must
follow if they think that theyre patients want more meds. I know many
of you will disagree though the NPF mentioned that overuse of OPIODS
for pain is a behavior problem and is not related to the ingredients
in the drug itself. Well that answers that. Yes I am an addictive
person. Both my parents were party animals and I was probly born
dependant. I can also have been more suseptible to
neurological problems because my dad used herioene.
I would love to be without meds but I realize that at 36, with two
children, and permanently disabled that taking Opiods to relieve
chronic pain from TOS will allow me to enjoy the things I could easily
do before like play with my kids, read to them, cook, and be much more
relaxed. As far as my liver and lungs...hell... I'll take
donations..hehe...please no smokers. Thanks for listening to my long
day...we cool like that.....PEACE. ramamama
http://www.ninds.nih.gov/disorders/thoracic/thoracic.htm

You have been sent a Jacquie Lawson card by Howard Thomas (howarddt@...).

Please click on the following link to see your card:
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All Jacquie Lawson cards use Macromedia Flash. If you cannot view the card, please click here to load the latest Flash player. If after this you still have problems viewing your card, please visit our Help pages for further assistance.

I haven't forgotten your email, Mary Ann. My daughter-in-law didn't come by this past weekend, cause I had a tremendous headache Sunday night and I took some of the pain meds doc gave me for those headaches and slept. She said she and my son Daniel will bring grandchildren by to visit sometime this week or weekend, so will get the info from here then. I sent an email but she hasn't written back yet.

But I promise I'll find out from her when she comes over and get back with you.

Ray & Liz
=================================================

I have TOS and don't have the extra rib. I was told it could be muscle,
tendons, etc. Not really a clear answer. This happens a lot with body
builders, baseball pitchers, and other who have repetitive action and/or muscle
buildup. I didn't really have any symptoms until I had my first subclavian DVT,
things went downhill from there. I had my second DVT on the other side 5 years
later (This past June).
I have felt a lot better since I started losing weight and breast size--so I
feel that had something to do with mine. I also wear sport bras--the type with
the zipper in the front that still give you a little form about yourself. I
also laid down the salt shaker which has helped too. I was so desperate I was
ready to have a breast reduction but decided to go a little less radical and
lose some weight. So far, so good. We'll see how it goes. Guess every little
bit helps
Regena
riddleandcompany@... wrote:
Thanks so much for your replies to my posts about my TOS and painfull
massage...I will talk to my massage therapist about the pain and he will comply.
I
know. Very understanding...I live in a small town near Troy, Missouri...so too
far from San Fransisco Bay area!!! Darn! Alos wonder if anyone has been
helped by Chiropractors??? IF I do not have a cervical (extra) rib what could
cause TOS??? Vicki

SPONSORED LINKS
Thoracic outlet syndrome Repetitive strain injury

Patrice, I'm Donna, Kari's Mom. Kari passed away on 5/27/03 at age 20. Her primary disease was lupus. She had secondary PH because the lupus had destroyed the blood vessels in her lungs. I just wanted to let you know who I am.

At one point, they were doing tests on Kari and one of the possibilities was the interstitial pneumonitis. Her rheumotologist indicated that lupus patients often contracted this. She did not have this however. I'm thinking at the time that they ruled this out after a spiral ct test but I could be confused about that.

I basically just wanted to let you know that I have heard about it but don't know much more.

I think it is a good sign that he is going to contact Johns Hopkins about their study. Also, in Kari's case, there wasn't much that could be done because the only thing that would save her would be a lung transplant but they couldn't do that because of the lupus, her body would reject the lungs too.

This would not affect your daughter though so I think it is encouraging to have a diagnosis, a plan, etc. I will keep you and her in my prayers. My reason for writing was not to give you a worse case scenario because Corrina doesn't have lupus and has treatment options. That is a very positive thing!

Last Sunday was the 3rd anniversary of Kari's passing. So much has been discovered in the field of PH and lupus since then. Not a moment goes by that I don't miss her. My family and I went out of town on the weekend and celebrated her life. My oldest daughter, Andrea, is getting married on June 10th. She is 29. It is a very wonderful celebration for our family that is also bittersweet. It would have been great to see Kari's reaction to the bridesmaids dresses, etc.

I'll go thru my paperwork and let you know if I find anything else helpful about this pneumonitis. With love from Donna.
Patrice Lozoya <ninasmom25@...

Hello Everyone,

I know it has been awhile since I have really posted anything on here. We have been really busy with Corrina going in and out of the hospital with respiratory distress. She developed a cough Sunday that has been getting increasingly worse since then. She is to the point that she can't cough with out gagging, and turning really blue. She even at times stops breathing.

Her PH is stable and that is great news. So we went to see her pulmonologist and after yet another chest x-ray, he told us that he feels that she has Interstitial Pneumonitis (inflamed tissues of lung/sufactant deficiency). Having looked at her extensive pulmonary history he feels she has this. Does anyone know anything about it? He couldn't tell me a lot becuase they have just started the research on it and are in the early stages. But he is so confident about diagnosing her with this that they have put a call in to the research clinic at the John Hopkins hospital to see if they will accept her. He believes that she is a prime candidate. He also mentioned that you very rarely find this in children, and mainly in adults. If I were to search on the internet he said I would find very little and it would all have to do with adults and this disease. He was right...I am scared, wondering what hope there is for her and if we can cure this or if it just something that is
"maintained". He started her on a medication that he "hopes" will help bring down the inflamation in her lungs.

If any one knows anything about this, please let me know. Thank you so much. And please know that even in our sad time we are still thinking of all of you and praying for you always!! God Bless.

Patrice

In Honor of Corrina

Thanks so much for your replies to my posts about my TOS and painfull
massage...I will talk to my massage therapist about the pain and he will comply.
I
know. Very understanding...I live in a small town near Troy, Missouri...so too
far from San Fransisco Bay area!!! Darn! Alos wonder if anyone has been
helped by Chiropractors??? IF I do not have a cervical (extra) rib what could
cause TOS??? Vicki

I waited a few days to answer your email, hoping I would have some info from today's tests, but the people running those breathin' tests gave me any info, and told me simply that I would get everything from my doc when I see him on Aug. 15th.
I did do some reading and studying and went to a lot of links reading about some of this since I'm so medically-challenged Smiley emoticon (That's why I send people to Betty, Carol, and Mary Ann........they know a lot and can give informative answers).
This is what I learnt about the tests I took:

The B & A, BD and total volume w/VC RV means Breaths & Aspirations, Breath Depth & total volume w/ Volume Control Respiration Volume. So, basically they are measuring how much air you are able to breathe in & out, how deep it goes into the lungs (how much of the lung(s) are still functioning) and the volume of air you can push out & hold in (the strength of the lung(s). Here also is why my doc got a sed rate (I got this off of www.webmd.com).

The sedimentation rate (sed rate) measures how quickly red blood cells (erythrocytes) settle in a test tube. The more red cells that fall to the bottom of a special test tube in one hour, the higher the sed rate

A sedimentation rate (sed rate) test is done to:
* Help determine whether a condition causing inflammation is present.
* Monitor the response to treatment of some conditions (such as infection or some autoimmune diseases).

Normal

Normal values may vary from lab to lab.

CAPTION: Sedimentation rate

Males younger than 50:

015 millimeters per hour (mm/hr)

Males 50 and older:

020 mm/hr

Females younger than 50:

025 mm/hr

Females 50 and older:

030 mm/hr
So I guess I'll learn how this all pertains to all my tests when I see him in August.............will let you and everyone know.

Ray & Liz

=========================================================

=========================================================

=========================================================

Hello Everyone,

I know it has been awhile since I have really posted anything on here. We have been really busy with Corrina going in and out of the hospital with respiratory distress. She developed a cough Sunday that has been getting increasingly worse since then. She is to the point that she can't cough with out gagging, and turning really blue. She even at times stops breathing.

Her PH is stable and that is great news. So we went to see her pulmonologist and after yet another chest x-ray, he told us that he feels that she has Interstitial Pneumonitis (inflamed tissues of lung/sufactant deficiency). Having looked at her extensive pulmonary history he feels she has this. Does anyone know anything about it? He couldn't tell me a lot becuase they have just started the research on it and are in the early stages. But he is so confident about diagnosing her with this that they have put a call in to the research clinic at the John Hopkins hospital to see if they will accept her. He believes that she is a prime candidate. He also mentioned that you very rarely find this in children, and mainly in adults. If I were to search on the internet he said I would find very little and it would all have to do with adults and this disease. He was right...I am scared, wondering what hope there is for her and if we can cure this or if it just something that is
"maintained". He started her on a medication that he "hopes" will help bring down the inflamation in her lungs.

If any one knows anything about this, please let me know. Thank you so much. And please know that even in our sad time we are still thinking of all of you and praying for you always!! God Bless.

Patrice

In Honor of Corrina

Response regarding massage and moderator:
I have been to a few massages. You can let the massues know that they are too
hard. Also each massues has a differant style and type. Shop around.
The moderator will seek to eliminate any annoyances if you email her.
She may have chosen to not screen emails before they get posted, some screen
all emails first. Since this site is a health site not a mentally ill site
preditors see this as a great outlet. Anyone can be a member...well yes, they
just change their name each time....just ignore it, dont repond and sooner or
later they will figure out that they can get the help they need at another
site....hopefully!
rmm

Hi Becky, when I first went on disability, they had my first check to me in less than 2 weeks. Maybe it wouldn't take as long as your husband thinks. I'll bet they could tell you how long it would be. Just something to consider.

Betty
bbutterfly@...

I'm glad you are up and running Kaiala. (Do you prefer that name to Darlene)? I don't have incredimail so I can't help you there. I'm really sorry you have lost your data and hope you will be able to build it back up soon. Good luck.

Hugs,
Betty
bbutterfly@...

Hi Vicki,
Here's my story and massage recommendation, although I don't know if it
pertains to your situation.
My short history: I was diagnosed with TOS last September 2004. Mine
was probably caused by posture in retrospect, instead of a first rib
interfering, since I've improved without surgery.
It took about 3 months of physical therapy before the acute pain was
reduced. Those 3 months I did the stretching exercises to correct my
posture (oh so painful), stayed off using my hands/arms, readjusted my
computer workstation, and just tried to make it through the day. My
muscles were so tight and nerves so sensitive that I would re-aggravate
my condition if I stretched too much. I really wanted to get better,
so I probably overdoing it. My advice really would be to be VERY
GENTLE on yourself and PATIENT (hard, but one of the great learning
experiences of this syndrome).
After 3 months, I had my pain more under control and decided to see a
massage therapist. I requested a type of massage called "myofascial
release". Basically, the massage is to let the myofascial tissue
around the muscles relax so your muscles can relax. The massage
involves consistent, gentle pressure until the myofascial releases on
its own.
I have to say that was the BEST thing I've done for my TOS. Maybe it
was the right time and I had a very good massage therapist, but
afterwards, I felt I could stretch without re-aggravating my TOS pain.
After 3 or 4 sessions, I felt somewhat normal after so many months.
(If you're in the San Francisco Bay Area, I can recommend you my
massage therapist).
Anyways, since I'm speaking from personal experience and don't know
your situation, however I can give you a few guidelines. If the
massage is overly painful, I don't think it's helping. The reason is
that pain makes your muscles contract even more, which defeats the
purpose. A good massage therapist may do several passes on an area: a
first pass to gently relax the muscle and then subsequent passes to
progressively release the tension. If the therapist just digs right in
and causes you "bad pain", I think you may be injuring yourself more.
The massage therapist might not be aware of how sensitive your muscles
are so you really need to communicate with them how much pressure you
want for that "good pain".
Hang in there, you'll definitely make it!
-Leslie

ATTENTION:

We need to go to www.pontiac.com/apprentice at 12pm est 11am cst today (May 30, 2006) and get PHA (Pulmonary Hypertension Association) a share of $500,000 and maybe qualify to win a car to auction off.

Do not forget!!!!!

Please do this for Bailey! If we get Pontiac to donate this much needed money to the PHA, it could possibly lead to a cure!

PLEASE, GO AND VOTE!!! (But you have to go to the website at 12 noon, not before!)

AND, send this to anyone you can think of so they can go and vote as well!

Thanks so much,

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

[LINK]

Vicki,
That is not normal but once in a while you get some weirdo that tries to
slip some perverse junk in here. I believe it is monitor because the first
time it happened I complained as did others and that one was gone.
Hang in there, there are some good people on this site. I don't come often
but they sure helped me out when I first found out I had this as I had never
heard of such a thing.
KathyP

Well there's good news and bad news......
I have Incredimail up and running.....
A few things were salvaged but most is lost in the cyber wastelands.
Everything that I had rec'd from four weekend wars is lost.
Everything that I rec'd for the day yesterday is lost.
Most everything in my stylebox is a loss. Blinkies everything......
I saved and had LOTS of Precious Moments, Big Cats, White Tigers, LOTR,
Fantasy, Fairies, Pagan/Wiccan, Wizards, Unicorns, Famous People Caricatures
Elvis, D/s, I could go on but I won't. I'm just sick about all the stuff I
lost.
I have set myself back to Individual Mail and things are slowly beginning to
come in.
If anyone has anything they might like to share to help build my reserves
back up please send it to.... kaiala@....
I appreciate everyone's patience in all this.....
huggles,
kaiala{T}

In Honor of Corrina
Patrice,
Jennifer is working today (Friday), Saturday, and
Monday. I forwarded your letter to her work E-mail, so
that she will know you are there if she checks her E
mail.
I hope every thing goes well. Dr. Fish is pretty
sharp, Joey once said " Dr. Fish is a King Fish, and
he should never be drawn ( Joey liked to draw) without a
crown.
Check out the Thomas the tank engine play table in
the 5th floor playroom, I built that as a memorial for
Joey, as the play table at the old hospital was poorly
designed and usually broken. Joey used to get mad at me
cause I didn't bring my tools to the hospital, and couldn't
fix it! I later rebuilt the old play table, with stronger
materials and a better design. It is on the second floor
in the sibling playroom.
Bill Nelson

HI everyone,

just want to let everyone know how much I appreciate their response to my question about me getting disability.it was of great help.

But,my husband thinks i should continue to work.saying that things will improve....and that we can't afford for me to quit work and wait to start getting my disability check......(hummmmm he did not't concerted this when it was me working 76-96 hours a week to make ends meet thought)

anyway, I try to get on line long enough to read the postings. before my shoulder and eyes start to bother me...which is not very long.

just remember your all in my heart and prayers.

get back when i can.

love ye all,

becky_sunlight1956

"did you stop to smell the rose's today" [INLINE] [INLINE] [INLINE]

&

may your angel be with you each day. [INLINE]

I am a new group member for a few days and have already gotten 2 spam emails
this group isnt moderated??? Please let me know if this is commonplace.
Hope not Vicki

Hey guys! Im getting married finally, cant believe this came true (thought it
would never happen). Thanks to this thing http://theplacetogo.info/ssqe managed
to meet a beautiful girl, who also has a bit of freak in her (just how i like it
;)). Wish me luck, I wish you all the same!

Oh my Patrice! I am so sorry to hear about Nina. And I am sorry too that I haven't been in touch. We have had a rough two weeks as well. But nothing like yours as I can imagine. I will keep this short because I know you are busy with everything going on. Just know that you are all in my thoughts.... And Happy Birthday to John yesterday! Hopefully by tomorrow you guys can celebrate with everyone home.

Please keep me posted on what's going on with little Nina. Know that I am praying for her wellness.

Love you all,

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

[LINK]

Hi Jennifer,

I was wondering if you might be at Vanderbilt Friday or Sat. Corrina was admitted for respiratory distress and then spiked a fever. She is still having problems with her breathing and O2 levels. They are monitoring her for now and last Dr. Fish said was that we were maybe looking at her coming home on Sat. morning. But if you are around maybe we can meet? Let me know or just drop by. We are in room 6532. I am home for the first time since she was admitted and am going to try and get some sleep. I will be back out there in the afternoon after my daughter gets out of school. Take care and we will talk to you later.

Patrice

In Honor of Corrina

check out this place guys, its great, my new homepage lol!
http://gettingaroundit.info/uwbb i only got on there about 2 hours ago, but
already loving the hell out of it. see ya's there

We'll be here when you get back Darlene. Good luck.
Betty
bbutterfly@...

Geez..forgot my subject line was about massage, I was so anxious to relate my
story! (by the way, thanks so much to the reply to go see a vascular
surgeon. I will look into doing that. I mention massage therapy because I had
gone, a while ago, to a good therapist and it did help a bit,,but man was it
painful... all those spots of pain. Wonder if this has helped anyone and if
there
is a more gentle way of massage that is used with success. Thanks Vicki

Sorry Betty, I'm having bad IM problems so I am going NO MAIL for a
bit to attempt to get it fixed. I will be back ASAP. I hope you
don't have to unsub me.
Thanks,
kaiala{T}

Go see a Vascular Surgeon. I was diagnosed with TOS by a Vascular surgeon
March 2005, went through physical therapy, but that did nothing. Sept 2005,
I had a rib resection. Today, I no longer suffer from TOS, I am pain free.

Well here's my first post..been in tears for few days realizing that
my TOS is full blown now..hand and arm weakness so painfull at night
it wakes me up..mostly my left arm (sometimes shoulder) and hand
especially painfull. have had varying degrees of TOS for about 5
years. Still dont know what type of doctor to go see...general ones
just assume carpal tunnel?? Need to ask many questions so here I
am...sad and hurting. Cant have an MRI because I have had 2 knees
replaced (lots of metal I guess) Vicki

Name?regarding fainting:
My daughter was recently brought to her Dr. because she fainted and was not
sick. Her Dr. said it was because not enough oxygen was flowing due to her nasal
infection. I never had this issue. When i was first diagnosed with TOS I
suffered severe anxiety attacks though, especially when the pain was really
bad..like in the morning and I would hyperventalate.. Also if you feel faint in
the morning you may need to get your blood checked out for anemia or low blood
pressure. Usually that is the reason. You could also have hypoglycemia when your
blood suger level is very low.
Rm

Hi Sunnie and Trey,

we don't use the ventavis pump but I thought what a clever idea. I think I will put a couple of water bottles in the truck for the summer...you never know what you might have to clean and warm water rocks....great idea...much love celeste

Hi All,
I've been reading some of your recent postings with great interest
as I am newly diagnosed with TOS. I have a question which I hope
somebody can answer. The predominant symptoms of my TOS are
Vascular, the worst being almost fainting the whole time when
holding my head in many various different positions.
Has anybody else had this or does anyone have advice on how this can
be alleviated?
Any responses would be much appreciated. I am an expat living in
the middle east and my doctor was honest enough to admit that the
did not have the experience to help treat my TOS and has told me
that there are not really any TOS specialists here and that i should
think about going back to the UK for a full review and treatment
plan.
Any ideas of a good TOS specialist in the UK?
Thanks for any feedback

I am sorry but I don't think this is the place for political statements, one
way or the other.
There are plenty of sites that you can go to get you message across and plug
the books etc. that you have written.
Good Luck

This message is about Human beings, Democracy, UNHCR, Refugees, The Iraqis,
Islam, Kurds, Human rights, Respect, Money, Donations, Angelina Jolie,
Pavarotti, Giorgio Armani, Donors, Peace, History, Campaigns and about you if
you care about these words.
Hi there,
I am SAM, an Iraqi refugee living in Lebanon at the moment; I have spent the
last 10 years of my life as a refugee registered with the UNHCR in Beirut. The
last 4 years, I have spent as an activist for peace and human rights (especially
refugees and asylum seekers) on the Internet; I'm also books author and ebooks
publisher. I have launched many campaigns to improve our situation as refugees
in Lebanon and hopefully bring more understanding to our problems worldwide. I
helped make many changes and improvements at the UNHCR office in Beirut; I used
the Internet as the field for my activities (you can read more about that in my
free ebook 'MY CAMPAIGNS'). All my ebooks are free and could be download from my
sites.
This is my newest campaign, it's about the illegal and humiliating actions of
the UNHCR, who using photos of refugees as banners and human-buttons to collect
money. This is an abuse of the dignity and humanity of the refugees and must
stop immediately and a clear public apology present by The United Nations High
Commissioner for Refugees. My friends, I am talking about the pictures you can
see here: http://www.aboutme.com/users/un4
Where you can read the rest of this message as web page.
Also you can read my new campaign 'Urgent, we need smile' here:
http://unhcrlebanon.kogaryu.com/smile.html
For more info about UNHCR and life of refugees you can read my free ebooks. I
invite you as fellow humans and members of the world community to support my
campaign by reading my article on my site and see the human-buttons. The
campaign is to support and improve the UNHCR http://www.unhcr.ch especially
after the last scandals in the UN and UNHCR, just for example: The refugees
allege that UNHCR staff is selling most of the food items they are supposed to
be supplied.
"They aren't supplying sufficient food to us because they sell most of the food
items," they allege: http://allafrica.com/stories/200503140214.html
Here is another example: Burmese Refugees Withdraw Protest Against UNHCR
http://www.mizzima.com/archives/news-in-2005/news-in-april/12-April05-22.htm
"We make demonstration and fast because the UNHCR office in Cairo did nothing
for our problem..." http://news.bbc.co.uk/2/hi/africa/4440730.stm
Together we will build better world.
You could reach me fast via this form:
http://www.net4free.org/Arts/unhcr-lebanon/email_me.htm
and if you like to know more about me, you can google for my name 'osam
altaee'.
Thanks
THE TRUTH WARRIOR
http://unhcrlebanon.dreamstation.com

Hi,
We went to an amusement park this weekend and we
experimented with a way to clean the ventavis parts. I
put water bottles, 20oz filled with distilled water on
the dash board. It was 90 degrees here and they heated
up quite well.When I needed to clean the pieces I
poured it into a ziplock bag and swosh...swosh .
dumped the water. At the end of the day I just threw
away the zip lock bag and empty water bottles. I guess
next time I will keep some in the car in case of a
cleaning emergency.
Just an idea. Who ever thought we could figure out
something to do with the hot water bottles the kids
leave in the car.
Sunnie and Trey

Ray, I had those breathing tests last week. My overall lung capacity
measured 64%. Just curious what yours will measure. Mine has been
between 50 and 65% for over 20 years. That's the range it fluctuates
in. Interested in hearing your results. Gail in Alabama

How awesome for you all especially Bailey!! I am so happy for all of you. It's been a while since we have had this much good news. How wionderful for you guys to have a plan of action and a doctor that you like and trust. Isn't it great to get good news for a change?! Glad to hear that Brianna didn't have that broken bone too...whew!

You will all continue to be in our prayers!

Terry
Melissa Brewer <brewerbus@...

Hello all! Just wanted to send out a quick update on the family....

We finally made it home from New York on Saturday. We were so tired!

Bailey's visit was very encouraging. We learned some new information and now, it seems as though we have a plan that we are going to follow. We ended up staying a few extra days than we had intended. Dr. Berman's main concern is that we need to be treating Bailey's PH a little more aggressive than it has been this far. Thus, the extended stay for a medicine adjustment. They switched her from Diltiazem to Nefiphedine (I don't know if you know those names or not!). This medicine has one drawback.... it comes in pill form because it is time released. Thank goodness Brian raised calves and knows how to get a pill down a throat! Needless to say, it can be a little interesting at our house around 7 in the morning. Good thing about this medicine... she only takes it once a day rather than four times a day with the Diltiazem. BUT right now, she takes TWO pills every morning. As the medicine gets increased, the number of pills increases as well. Starting next Monday, the 29th, we
will be increasing the other medicine she is still on (Sildenafil). And, she will only have to take it three times a day rather than four. Maybe we will just get to sleep through that 3 am medicine time from now on! Good news!.. In three months, we will see Dr. Stern in Charlotte to make yet another increase in the new medicine (which will increase that to THREE pills every morning). But, this is all very good. We feel much better about our "plan" and as you all know, we will do whatever it takes for Bailey to have as close to a normal life as possible. Dr. Berman was very encouraged that she responds to medicine the way she does. She even said that she could see a day when Bailey has NO symptoms but of course will still be on some type of medication. VERY GOOD NEWS !!!

So, as you can see, we were pleased. Pleased with the new doctor, pleased with our news, pleased with the outcome so far! We will be going back to New York in November (Happy Birthday to ME!) for her heart cath. That will require some hospital stay as well and maybe longer than just the cath for yet more medicine changes. We shall see!

So, now that we are back from New York, a little news from Brianna. On our (Brian, Bailey and my) way home from the airport, we got a call from Nanny and Pawpaw to find out that Brianna had fallen from their deck and may have broken her arm. So, off to another hospital we went on our way home. She did not break it, and they, as of today, didn't know if there was a fracture. If she still has pain on Wednesday or Thursday they will do more x-rays to see if they can see any healing. So, that was a little more excitement that we enjoyed over the busy weekend.

If you have any questions, please just call me or email and I will answer as best as I can!

Thanks for all of your love, support and prayers for our safe trip!

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

To:doraandfelisa
member:
First of all let me strongly advice that you contact you primary Dr. first and
make an appointment asap for his complaints you mentioned here,
Please, make sure Dr. refers your hubby to a Neurologist and no one else. Do a
check first to see how many thoracic outlet patients his referral has, has
treated and has referred for surgery and who is his vascular surgeon.. Is he
known? How many patients of his had successful surgeries. How do you find out?
Is he a member, was he..why not now.? Some Dr.s still practice stuff they had
they're lisc ripped for. You contact the American Neurological Association.Many
people get lost in the trap of" What do I do now? Let me let you know if your
family tells him "Its no big deal"...its wrong. This "Its all in your head"
thing never flew with me.
I am permanently disabled for life now, on too many meds, need surgery have to
put it off till someone can watch my baby. I'm the one who worked in pain,
afraid of telling anyone about my hand, arm shoulder pain, afraid of letting my
family down after moving, buying a first home and being a mom. Please let me
tell you that i had to get a divorce because my husband of 10 yrs refused to
believe my pain and with losing work we would loose everything. Now if he
believed my pain he would have each other still at least yet he refused to care
for me.
Now I dont think your all that bad a person to care so much for him. Just be
really sensitive to him, thorough, and prepared for anything that comes his way
regarding treatment.. He will need your support.
Please email me privately:
does his pain originate from anything in particular...work etc., be specific.
Did he have an accident ever..what kind..explain
Is he physically fit, couch potato, fitness guru?Please give me details of his
physical/behavior? Sometimes there are other conditions that mimic tos or visa
verse
TOS is one of the most difficult muscular neurological disorders that exists.
Most Dr.s who do not specialize in this rather have nothing to do with
it...smart!
Why? It took me 4 ys for my case to get settled in a workers comp case. Not
because they didn't believe me but because trail, testing, trails and more
waiting. Between exams they have to wait for 6 months to see if the meds are for
the condition or if the tests are this or that...
If your hubby works and is getting such pain as explained....he could just
have tendinitis...simple eh? NO. He could have to file a workers comp claim, get
ergonomic body-mechanics training, or if its from a previous accident he may
have to take time off for it to heal....what I see here is a man who has to deal
with this no matter what. Its really your choice and no one Else's here or
anywhere? good luck
RMM

Hello,
Yes, I myself have cervical ribs(37) and both my kids also were born
with them. At age 12, both my kids went through a growth spurt, and
started having TOS symptoms-arm pain down into the hand, tingling, etc.
Both out kids have had a rib resection (removal of 60% of first rib
and the cartilage off the end of the cervical rib to open up the space
for the brachial plexus/nerve bundle) done by a surgeon who treats
specially TOS patients. Our son had surgery at age 14, and two months
later he was in football training camp, he has had no problems since.
Our daughter just had a rib resection last june and she continues to
have arm pain. We have done physical therapy, neurologists, and now
are on our way to another physical medicine doctor to see what is the
cause of her continuing pain-she is only 13 and in good health.
I personally have had increasing TOS symptoms on mt left side over the
past 3 years since a car accident, but not often enough to consider
surgery.
Please feel free to ask any questions here. It sounds like you're
dealing with TOS, be sure to find a physician who is knowlegeable in
treating it, or you could wind up getting the run-around!
Take care,
~Robin

Hello,
My husband has known for a long time that he has cervical ribs from an xray when
he
was younger. He's had a lot of trouble with tingling in his arms. Recently, we
stumbled upon TOS on the internet and we suspect that is what he has. He's
always
saying that it feels like there's no circulation in his arms, especially the
last few
months. He's age 40.
Here are some questions I have:
Have any of you had cervical ribs removed surgically? If so, was it worth it?
Has anyone who still has cervical ribs found any other treatments that really
work?
Thanks,
CM

Hello all! Just wanted to send out a quick update on the family....

We finally made it home from New York on Saturday. We were so tired!

Bailey's visit was very encouraging. We learned some new information and now, it seems as though we have a plan that we are going to follow. We ended up staying a few extra days than we had intended. Dr. Berman's main concern is that we need to be treating Bailey's PH a little more aggressive than it has been this far. Thus, the extended stay for a medicine adjustment. They switched her from Diltiazem to Nefiphedine (I don't know if you know those names or not!). This medicine has one drawback.... it comes in pill form because it is time released. Thank goodness Brian raised calves and knows how to get a pill down a throat! Needless to say, it can be a little interesting at our house around 7 in the morning. Good thing about this medicine... she only takes it once a day rather than four times a day with the Diltiazem. BUT right now, she takes TWO pills every morning. As the medicine gets increased, the number of pills increases as well. Starting next Monday, the 29th, we
will be increasing the other medicine she is still on (Sildenafil). And, she will only have to take it three times a day rather than four. Maybe we will just get to sleep through that 3 am medicine time from now on! Good news!.. In three months, we will see Dr. Stern in Charlotte to make yet another increase in the new medicine (which will increase that to THREE pills every morning). But, this is all very good. We feel much better about our "plan" and as you all know, we will do whatever it takes for Bailey to have as close to a normal life as possible. Dr. Berman was very encouraged that she responds to medicine the way she does. She even said that she could see a day when Bailey has NO symptoms but of course will still be on some type of medication. VERY GOOD NEWS !!!

So, as you can see, we were pleased. Pleased with the new doctor, pleased with our news, pleased with the outcome so far! We will be going back to New York in November (Happy Birthday to ME!) for her heart cath. That will require some hospital stay as well and maybe longer than just the cath for yet more medicine changes. We shall see!

So, now that we are back from New York, a little news from Brianna. On our (Brian, Bailey and my) way home from the airport, we got a call from Nanny and Pawpaw to find out that Brianna had fallen from their deck and may have broken her arm. So, off to another hospital we went on our way home. She did not break it, and they, as of today, didn't know if there was a fracture. If she still has pain on Wednesday or Thursday they will do more x-rays to see if they can see any healing. So, that was a little more excitement that we enjoyed over the busy weekend.

If you have any questions, please just call me or email and I will answer as best as I can!

Thanks for all of your love, support and prayers for our safe trip!

Melissa

"Be of good courage, and He will strengthen your heart."

~Psalm 31:24~

[LINK]

Hi there ,
Please explain your leg issue . For a long time now when I get into a motor
car I need to lift one of my legs in . When I sit I cannot raise my left leg
from the sitting position . Now while sitting at work I have pins and
needles down my right leg from my hip . I have spoken to the physio about
it and they do not know what they can do.
Cheers
Jeff Osrin
Cape Town
South Africa
Please click on the following link to read the Old Mutual legal notice:
<http://www.oldmutual.co.za/e-mail_legal_notice
Alternatively, send a "blank" e-mail to <mailto:EmailLegalNotice@...

I AM SO PROUD OF MY SELF. For anyone here who cares to hear what I
have been through, maybe kind of a relief knowing your not the only
one out there suffering and struggling from thoracic outlet syndrome.
I still have not read this book I bought on Christopher Reeves Life
Story called, "Anythings Possible," However I manage to find the
way...its amazing what we are appreciative of as we see others live
normal lives. And poeple go around on the internet and play games and
we sit here just trying to find a way out not in...
So I am so proud of the fact that I over and above simply stopped
taking my pain meds since they were causing a severe addiction for me.
Yeh I know how you feel. They helped me too. Trust me I know pain. I
have TOS on both sides. Oh and now I am on stronger antidepressents,
more flexeral, and a leg relaxer for my Restless Leg Syndrome. Has
anyone here had this leg issue and if so, treated, did you take meds
to treat it?

Pam,

I am sorry to hear that Becky has run into difficulties. I will contiue my prayers for her and you. I understand how hard it is to handle having one child in the hospital and having other children at home that need to get to and from school. We just got Corrina home from the hospital Thursday after being there 2 weeks. It is a very frustrating thing to handle at times. Take and when you get the opportuntiy, try to relax.

Patrice
Pam Adams <pcadams_2000@...

Hello all,

Well, we have been having a jolly time (not) down here. Becky was admitted to Texas Childrens Hospital on Thursday night because she was having breathless episodes so close together and with her heart racing and had to be on oxygen all the time. After putting her on telemetry to monitor her heart, her cardiologist, Dr. Altman discovered that she sometimes has an abnormal heart rhythm, so they have put her on a medication for it. I don't remember the name - starts with an S.

In any case, she seems to be responding. When I was at the hospital today she wasn't having to use the oxygen. The cardiologist says she should be able to go home either tomorrow or Tuesday. Hopefully, tomorrow since coordinating having somebody at the hospital to stay with Becky and someone to take the other two back and forth to school and then getting everyone to work is getting to be a real challenge.

Pam (mom to Becky - 17 - severe PH, congenital heart disease, scoliosis, multiple spleens, ADD, etc; Johnny - 14; and Laura - 11)

keep this trash to yourself!
"brylee.stevens8827@..." <brylee.stevens8827@...
Yeah I know, I never thought this stuff would work either, but honestly I
stand corrected. This place http://www.webconnectionz.info/cmnr is actually
very awesome. I hooked mycam up and within no time I was talking to a few great
ladies over it. Anyway, I recommend it to everyone here!

Hello all,

Well, we have been having a jolly time (not) down here. Becky was admitted to Texas Childrens Hospital on Thursday night because she was having breathless episodes so close together and with her heart racing and had to be on oxygen all the time. After putting her on telemetry to monitor her heart, her cardiologist, Dr. Altman discovered that she sometimes has an abnormal heart rhythm, so they have put her on a medication for it. I don't remember the name - starts with an S.

In any case, she seems to be responding. When I was at the hospital today she wasn't having to use the oxygen. The cardiologist says she should be able to go home either tomorrow or Tuesday. Hopefully, tomorrow since coordinating having somebody at the hospital to stay with Becky and someone to take the other two back and forth to school and then getting everyone to work is getting to be a real challenge.

Pam (mom to Becky - 17 - severe PH, congenital heart disease, scoliosis, multiple spleens, ADD, etc; Johnny - 14; and Laura - 11)

Yeah I know, I never thought this stuff would work either, but honestly I
stand corrected. This place http://www.webconnectionz.info/cmnr is actually very
awesome. I hooked mycam up and within no time I was talking to a few great
ladies over it. Anyway, I recommend it to everyone here!

hi mary ann , thanks for the kind words . take care tim ,ct

Thanks for your concern... I have had TOS for about four years now..
and I was kind of concerned about the possibility of damaging the
nerves more and irritating that whole area. So last summer I went
to the Vascular Institute of the Rockies and they did a weeks full
of testing to test my nerves and to see if there was any more
damage. They compared it to the test i had when I was first
diagnosed and there was no more damage. I have talk to specialist
in pretty much every area, and they have told me as long as I can
handle pain I can continue to play. I am going back again to
Colorado next week, and so I am keeping a close watch on
everything. I have the extra rib; therefore at some point I
absolutely have to have the surgery. My doctors are going to keep a
close watch and if I get worse they will pull the plug on softball.
The other thing is I am just as bad when I am in season as when I am
taking a break. There is no correlation between softball and the
pain. I know that is hard to believe, but part of the reason for
that is because I am strictly a pitcher... so I do not do a lot of
overhand throwing which is worse for you, and I do not Hit at all...
hitting seems to make it flare up more than anything so I quit
hitting two years ago... once again thanks for your concern, Liz

I just wanted to say that I couldnt imagine playing baseball with the
intense shoulder pain you get with tos. Doesnt the scalene muscle get
irritated from throwing, hitting ect. Also the practice I used to be
a pitcher...never good though, I know your Docs must have reservations
about tos and baseball...arent you reinjuring it? I am on permanent
disability because at 36 cant handle the pain, cant work....I hope you
know you may be causing more damage to you tos then docs care to tell
you. Sorry if I sound harsh or too criticle its just that my situation
is rest rest, dont lift, push, pull ect...are you limited at all? Is
your doc a nuerologist or a vascular surgeon?

Hi Betty,

Thanks for the link. It looks like it has all kinds of stuff to look up and the info should be very current.

Thanks again!

Mary Ann, OR

Hello! My doctor put me on Dantrolene. Me being young was an issue
to but this medicine has helped me a lot.. it has a lot of different
effects on a lot of people.. So it is just one of those things you
have to try.. for me there is no side effects... but some people get
drowsy and lightheaded when taking it... Liz

PHA'S 7^TH INTERNATIONAL PH CONFERENCE ~ IMPORTANT ANNOUNCEMENT ABOUT HOTEL ROOMS

THE GREAT NEWS: we are expecting a record-breaking turnout at PHA's 7^th International PH Conference.

THE BAD NEWS: our block of sleeping rooms at the host hotel, the Hilton Minneapolis Hotel, is virtually sold out.

THE GOOD NEWS: we have secured additional rooms at the Doubletree Guest Suites Minneapolis, located just 1½ blocks from the Hilton.

If you're planning to attend the conference but haven't made a hotel booking yet, we encourage you to do so as soon as possible.

While you may want to try the Hilton first, note that our room block expires Monday, May 23, and few rooms are currently available. To reach the Hilton, go to Hilton Minneapolis Hotel or call 800-HILTONS. When calling, be sure to mention that you are with the Pulmonary Hypertension Association to obtain the group rate.

If there's no room at the inn, please contact the Doubletree Guest Suites Minneapolis, located at 1101 LaSalle Avenue South, Minneapolis, 800-245-8011 or www.minneapolisdoubletree.com and be sure to use our group/convention code "PHG." Our room block is being held until June 10 or until all of the rooms are booked, whichever comes sooner.

As long as your room is booked at either hotel before the block closes, the Single/Double rate is $139 + taxes. Once the block closes, the hotels reserve the right to charge the prevailing room rate.

If you are a patient for whom it would be problematic to stay anywhere but the Hilton, we are maintaining a wait list and will do our best to secure a room for you at the Hilton. Based on the current situation, it is not highly likely that we will be able to do so, however, please put yourself on the wait list by contacting Kim Thompson at PHA kim@... or 301-565-3004, ext 106. Let her know what nights you'll be staying in Minneapolis and provide your contact information.

Thank you for your patience and understanding. We are looking forward to a blockbuster of a conference and hope that you will be in attendance.

Katherine Kroner

Advocacy and Awareness Associate

Pulmonary Hypertension Association

katherine@...

301-565-3004 X109

Hi Chris,

I was happy to read that you and Tara were able to have some fun on your trip to the doctors'.

I was happy to hear that her pressures are down..that has to be a good thing.

I was sorry to hear about the lung volume. I don't know anything about it because Noel has never had a pft and I have no idea what it is. Sorry. I hope they find out whatever is going on with this and that it doesn't cause too much concern.

glad all went well and that Tara was able to get some new goods....love celeste

Hi everyone

We are back from our three days away, seeing cardiologist, respritory spec. and PH/transplant Drs.

The best news was that Tara's echo measured her pressure at 53, it has never b4 been below 68, thanks be to God. Her cardiologist could not believe what he was seeing!!! He repeated the trace about six times and kept getting this number. We are very happy and thankful.

She also had to see a resp. Dr and for the first time had PFT's done. Her lung volume is 65% of what it should be. Not too good...They gave her a huge dose of ventolin (asthma med) and it made no difference to her lung volume. The Dr is convinced that she does NOT have asthma even tho she was diagnosed and been on asthma meds for four years. Its quite unexplainable why her lung volume is down, any information/knowledge from anyone here??? Do PH kids in general have a reduced lung volume, and is 65% quite significant?? any ideas most welcome to help me understand this.

We are both very tired from our trip, didn't do too much shopping or junk food parties. Tara managed to buy two pairs shoes, new handbag and wallet out of her money she had saved, so she was happy with that. I think she dragged me thru about a dozen shoe shops at least!! LOL no wonder i'm worn out. gotta get to bed now.

best wishes as always

chris

mum to Tara 7 years old

Hello Liz
Okay what was the treatment method on the
Vascular Instute of the Rockies ?
Regards: Hannu / Finland / Europe

Let us know what the results are of the biopsy. Glad it went ok for you.

Betty
bbutterfly@...

Hello Everyone!! I am new to the group and just thought I would say
HI and give some general information. I am ninteen years old, and
have had TOS since age 15. I am currently trying to go to college and
play softball there. I have been through a lot of different doctors
and a lot of different PT's, procedures, and medicine. I did not get
any relief until I went to the Vascular Institute of the Rockies.
There I got relief for about four and a half months.. I am scheduled
to go back in about a week. We will see if it helps again.. WEll
that is pretty much it... Feel free to ask me anything.. not
guaranteeing I can help any but I will try.. Sincerely, Liz

anyone out there use a dietary supplement called rutin . tim

hi , well i got my biopsy done . my pulmonoligist took four tissue samples .he told me i did a good job .what a day that was.i hope i dont have to go through that again. oh ya i like the idea of music ive been using it as a tool for years now .it helps with much things in life . take care people and remember it takes a foundation built on faith and trust so your wood wont rot and your nails wont rust . it takes more than a hammer and nails to make a house a home.with a whole lot of guidance from up above .show your neighbor what a friend is for .thanks and remember life is special no matter how hard it is .tim

That is a good question! I am in the recovery mode of having a left
rib-resection, and don't let anyone tell you it is nothing..I am not a wimp
as I have had a number of major surgeries, to include to major back fusions
and I still had problems. One of the Vascular Neurologist told me before my
surgery that they,meaning the world of Neurology, do not have a
true,complete test for TOS. I had all of the normal Doppler studies, to
include about 3 tests, and they rule out everything that it could be like MS
or a brain tumor then they have to go with the assumption that it is TOS.
This was news to me as the other two doctors concluded after all the studies
that it was TOS. I do not think that after an MRI they could tell if that
was the only test they did, but I am NOT a doctor. I also had a cervical
spine MRI and of course they found two more discs that were torn but they
did not feel that was the problem. So far I have to say that the awful
headaches I was getting are better, my hand feels better but not 100 percent
but I just had my surgery on the 7th..I was in the hospital from the 7 to
the 10th and that was only because I had other problems. If they main doctor
would have had his way he would have had me out the next day, on a plane to
go home to an empty house. My spine Doctor was also involved and he put the
kibosh to that. I still went home on a catheter and in a great deal of pain
as I was so swollen that my armpit was closed up, my glands from the top
incision were so swollen it was unreal. This is all part of the surgery I
guess. If they had put ice on me right away I think that it would have been
better. I have never met such a great bunch of nurses in my life though,
talk about compassionate and overworked...
That is probably more info than you wanted but thought I would give you the
entire rundown. The Vascular Nuero told me to go ahead and schedule my other
arm before I left and I just looked at him and laughed. I am going to wait
and see how this works out before I do the other arm, I am in no rush. I had
to deal with my normal back pain which is severe and then the pain from this
surgery all at once so it was tough but like I said ice is the answer.
God luck and God bless.
Kathy

Happy mother's day to you as well, Celeste and everyone!
Celeste, don't let Noel get to you when she says you hates you for
having her this way. Emily used to do that with me, only she used to
tell me she hated me for having her brother the way he was and for
everything that put her through. We get along well now, but she really
knew how to press my buttons when she was living at home.
I am going to spend the rest of the day working on a presentation about
teenage suicide that I have to do tomorrow for one of my classes.
Sounds fun, huh. My eighteen year old laughed when he heard this and
told me he would help me celebrate mother's day by not committing
suicide.
He is actually working again as a bagboy at the grocery store he worked
at last summer. He is working 11 a.m. til 7 p.m. today, so I don't
think we'll do too much celebrating as a family. My mother and dad have
gone on a cruise with my older brother to Alaska. They invited us along
but I have classes this week. So here I am, stuck working on a
presentation about teenage suicide.
But my husband is fixing steaks for dinner tonight. I think we'll all
eat together when Forrester gets off from work. Forrester, by the way,
graduates from high school this Friday. So the real party will be next
weekend. He will be going to Miami University in Oxford, Ohio, this
fall. The boy who turned thirteen on the day his little brother had his
first cardiac cath has really grown up.
Love to everyone,
Jennifer

Hi,
I am new to this group.
My doctor has diagnosed me with TOS.
I also had MRI of cervical spine. The only problem was cervical
lordotic curve straightened.
Is it really TOS or something else?
Regards,
Nikhil

Hi Mark, I'm so glad you are seeing any improvement at all. To have more
vitality must feel wonderful to you. You sure deserve it. I hope you will
get even more help from the new things you are trying. I will keep you in
my prayers, Mark.
Betty
bbutterfly@...

Happy Mothers Day!

I want you to know that I admire each and every one of you so much. You have all helped me....taught me....been there for me...and carried me along during our time together on here.

I hate that we had to meet like this but I feel more connected with this group than any other I have ever been on. I feel like I have friends who understand here.....family.

I hope you all have a wonderful and event free day today. I know some of you will be sad today and it makes me teary eyed just thinking of what you will be going through....but please take some comfort in the wonderful life you have made for your family and how your friends love and admire you....

hang in and enjoy the day.....much love celeste

Please don't delete prior to reading,Important....

For the last 3 weeks I have been of of Methatrexate, I have been
taking DHEA, Plant Sterolin, and Blue/Green Algae (also
multi-vitimins), I can honestly say I have felt more vitality over the
last few days, Mind you I am still blind in one eye and breathing hard
but I feel less tired and achey.

I have found that (1) if you don't take the time to take care of yourself,
you will be in no position to take care of yourself or anyone else.(2) I
would insist on a referral or find a doctor that would, I can not understand
why your doctor would be resistant to you seeing another doctor since he is
not a Vascular Neurologist and hence not equipped to deal with your
issues.(3) You can be sure that your job will not be there to help you when
you get to the point of not being able to care for yourself. I write this
through experience believe me. I worked and traveled and worked some more
until my body shut down and I ended up with two major back fusions, one
which has left me in constant, critical pain and very little use of my right
leg on some days. I found out I had TOS through my Neurologist although I
had not paid much attention to my hands, just knew that I was losing the use
of them. He diagnosed me immediately, they ran all the necessary tests, and
I am trying to recover from my first left rib resection to fix the TOS on my
left arm. I am no longer able to work due to my back and a number of other
things so have been on disability for a couple of years and I hate what my
life has become...Maybe if I had skipped one of those meetings , or not
taken one of those consulting jobs and taken care of myself first I would
not be in this position.
No one can tell you what to do, I am just telling you my story in hopes that
it will help you take care of yourself first because believe me, all of
those people that need something from you all the time are not necessarily
there when things fall apart for you.
I can not say that I hate my life, I am grateful to be alive and each day
look for a piece of blue sky, try to lend a hand(little pun there) to those
in need as much as I can but it has its moments, but believe me, I do know
what is important now and I thank God for each day.
God bless and good luck in your decision making.
Kath

Hi all. The Mayo Clinic has an email newsletter that has a lot of current medical information. It covers a broard spectrum of topics. I really like reading it. If you are interested, it is free. Here is the link http://www.mayoclinic.com/

Betty
bbutterfly@...

Thank you all for your kind words and support, it is a godsend to me when things get a bit tough. Even tho I know you have and are going thru much worse.

Tara is on the mend and we are both feeling less stressed. We head off to the city in a couple of days for Tara's PH checkup. We get to have three days away together and are planning on lots of shopping and junk food parties..in between seeing Drs and having tests.LOL

On a serious side I am going to find out what her cardio. thinks the implications of this bacteria is??and any solution he has. Hopefully get some answers. I am also quite convinced that Tara's viagra doseage is not sustaining her like it used to. For a few months she as been very irritable, tired etc. around 3pm to 5 pm. She takes a dose at 11 am, then at 5pm and I have come to the conclusion that it needs altering. Maybe they will add bosentan, as they have talked about previously.

Will let you know how it all goes. Celeste I do hope and pray that Noel's leg problem is improving, even if very slowly. Donna and Jen, thanks for all the ongoing advice and support you so willingly give to all of us here. HAPPY MOTHER'S DAY.

best wishes

chris

mum to

tara

7 years old

I was in an mva in aug 2005 this was the 4th one in 14 years since
the latest one i have had symptoms of tos my chiropractor would like
me to see a specialist about it but my medical dr is hesitant to refer
me I am a food service manager I have been unable to go back to work
because I can't do the lifting required and when I try to pick things
up sometimes my hands just don't work right Any ideas about what i can
do i see a chiro 2x per week my doc wants me to go to physio but i
can't fit all of that into my schedule

Hello Pam,
I am glad that the tests came back okay, but I can see it must be
frustrating for you not to have an answer. I hope Becky is able to
breathe better and feel more energetic soon. Thanks for the update.
Jennifer

Hello to all,
I am wondering if you have room in your group for someone new?
I am newly dx'd with thoracic outlet syndrome...and am very
relieved/concerned/anxious about this.
Quick history: I have suffered whiplash 3 times, the last time was 9
years ago (1996) and I have had problems eversince.
I had Left Condolodomy surgery for TMJ in 1998.
I have seen numerous Doctors, Physical Therapists and even a past
life regression therapist...all in attempt to relieve my neck and
shoulder pain. In the last 9 months I have experienced severe pain
in my elbow, forearm, wrist and fingers...both arms. This led me to
yet another doctor looking for a carpel tunnel dx. Boy was I
suprised when that came back negative. She then sent me to a
Reumatologist who after loosing my pulse during the initial exam,
referred me to have a doppler study done. This is what led to my Dx
of TOS! Go figure! I never heard of such a condition.
Needless to say, I was very glad to see a support group for this. If
anyone has any helpful info to get me started in my recovery, I would
love to hear from you.
Thank you

Hello all,

I just thought I would tell you what we found out yesterday when Becky and I went for the echo.

There was some good news in terms of what isn't wrong - her lung pressures are the same, your echo looks about the same, the blood test for her heart being under stress came back negative, her lung volume looked o.k. - all this according to Dr. Mallory, our pulmonologist here.

While I am very grateful that all these things are so, I am still concerned and so is Becky because they basically don't know what is going on. By yesterday she was so tired that she mostly only wanted to lie around. She has been achy lately, tired, dizzy and then is short of breath.

Dr. Mallory suggested that perhaps she has some sort of as he says, "nonspecific illness", by which I assume he means a virus or something of that nature. Being rather agitated, I asked him if he thinks she is making up the shortness of breath. Luckily for me, he is a really calm, laidback, kind doctor and told me no, that he did not think she was making it up, that he believed it was real, but that he didn't have an explanation other than we needed to watch it.

I asked about the reactive airway drug they had used during the before and after PFT's, and if that could help. He said she only had a modest improvement after it was given, but if she kept having trouble, he would try it on her anyway.

I am planning to get in touch with Lori in Dr. Ivy's office, and see what his opinion is. He is always better at figuring these sorts of things out than the people at Texas Childrens Hospital are. I have been through a couple of other times where Becky had difficulties, had tests done there, and was hospitalized and they couldn't figure it out or didn't figure it out until a day or two after we got home. Seems rather strange for a hospital that is supposed to be a "premier" hospital.

My personal, unmedical opinion is that maybe she has a virus to make her tired, and then perhaps the shortness of breath comes from the scoliosis. I did call her regular orthopedist, whose nurse called back and told Becky (I wasn't home) that it would take a 90 degree curve to cause breathing problems. I don't believe that, especially not from what Dr. Ivy has told me before that he has seen Becky's increasing scoliosis curve affecting her lungs.

So I will try calling the nurse to the pediatric orthopedist, remind her that Becky has a lung disease and see if she can ask the surgeon if that could be the cause. Also we are supposed to see Dr. Altman, the Houston cardiologist next week. If the achiness and tiredness is still here on Monday, I will probably take her to our very thorough pediatrician and see if she can figure out if Becky has a virus or something else.

I am sorry to rattle on so, I am just pretty frustrated. It doesn't take me much to be tired of dealing with doctors. Thanks for listening if you got this far.

Pam (mom to Becky - 17 - severe PH, congenital heart disease, scoliosis, multiple spleens, ADD; Johnny - 14; and Laura - 11)

You're in my prayers, Ray. Take care of yourself. I'm not too up on Respiratory Function tests which is what those are that you mentioned. Not too many new moms need them [INLINE] . (I used to be work OB-GYN-Nursery). Good luck with all of them.

God bless,

Mary Ann,

Hi Melissa,

thank you for sharing....it did make me shed a few tears this am. I lost my mom quite a few years ago and this poem brought out some memories and made me think of myself as a mother also.

I pray all goes great in NY and Happy Mothers Day.

love celeste

TOS Survivors:
Recently I was going to conduct a poll or two...or three. I'm really curious
about other peoples experience with medication and TOS. I know in the past we
have gone over board with our discussions regarding whats not ok to discuss here
and I thought that discussing medication might not be ok since some people may
think it gives people the idea who dont take meds we are a bunch of druggies.
Well I have a better idea. You can personally email me your answer if you took
medication or used to. My first question is to people who have had TOS surgery,
all types, especially Rib Resection, only from a vascular surgeon.
Question is,"After the surgery for TOS what effects did the surgery have on your
medication use?"
For example: Did you lessen your meds? by how much? What meds? If your answer is
"No, my medication is the same after surgery," then please explain to me why and
what went wrong or what did the Dr. tell you was normal?
I will be having Rib Resection in a year or so and I have TOS on both sides. I
am Permanently disabled from it. I take only one Pain Med, Norco. I used to take
5 meds! By the way it is the best newest drug I've have used for TOS after being
diagnosed by a state board medical evaluator 4 yrs. ago. My neurologist who is
new started me on it a few months ago and even though it is an Opioid I have to
believe that it was made for me and I do not misuse it since it is more
effective.
Once again I am not implying here at all that people with TOS should take meds
and that I believe that people with TOS should also be aware of natural
remedies, physical therapy, massage, exercises, yoga and all the other
non-addicting approaches before using pain killer to make you feel better.
RMM

Liz,
Let me suggest a great website for support for TOS.
It is called Brain Talk Communities. Just scroll down
until you find TOS on the list and go into the forum.
Post your questions and the area you live in and you
will get some response to help you.
They started me on Neurotin also and it worked
alittle. I finally, 8 weeks ago had surgery. It helped
alot, but still have a few problems that I know I will
just have to learn to deal with.
It's not fun Liz. Just take one day at a time. I would
suggest getting to either a Vascular Surgeon or Neruro
Surgeon to discuss your proper medications. Family
doctors haven't a clue what your going thru and really
don't know how to treat TOS.
Hope to see ya in Brain Talk Communites!
Peggy Schatzberg

Everyone,

Ray is so good at creating/finding medical-related chuckles. I got this one today through another group and thought you might like it. I'm forwarding it, so I think you just open an attachment. I'm not to up on this type of communication. Hope it comes through.

Kay
Note: forwarded message attached.

On the first day God created the cow.
God said, "You must go to field with the farmer all day long and suffer under the sun, have calves and give milk to support the farmer.
I will give you a life span of sixty years."
The cow said, "That's a kind of a tough life you want me to live for sixty years. Let me have twenty years and I'll give back the other forty."
And God agreed.
On the second day, God created the dog.
God said, "Sit all day by the door of your house and bark at anyone who comes in or walks past. I will give you a life span of twenty years."
The dog said, "That's too long to be barking. Give me ten years and I'll give back the other ten."
So God agreed (sigh).
On the third day God created the monkey.
God said, "Entertain people, do monkey tricks, make them laugh. I'll give you a twenty year life span."
Monkey said, "How boring, monkey tricks for twenty years? I don't think so. Dog gave you back ten, so that's what I'll do too, okay?"
And God agreed again.
On the fourth day God created man.
God said, "Eat, sleep, play, have fun and,enjoy life.. Do nothing, just enjoy, enjoy. I'll give you twenty years."
Man said, "What? Only twenty years? No way man. Tell you what, I'll take my twenty, and the forty cow gave back, and the ten dog gave back and the ten monkey gave back. That makes eighty, okay?"
"Okay," said God. "You've got a deal."
So that is why for the first twenty years we eat, sleep, play, enjoy life, and have fun; for the next forty years we slave in the sun to support our family; for the next ten years we do monkey tricks to entertain our grandchildren; and for the last ten years we sit in front of the house and bark at everybody.
Life has now been explained

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I posted a letter the other day and didnt get any responses. I have
alot of pain with my tos. I was wondering what other people doctors
were giving them for tos. I have taken neurotin for a pretty good while
and it doesnt help at all so now I am back to taking nothing. I am 32
years old and my family doctor will not give me anything for pain
because he said I was to young and didnt want me to get addicted to
pain medicine. I live in Kentucky and was wondering if there were any
doctors around here that deals with tos.
Thanks, Liz

The new family in the neighborhood overslept, and their six-
year-old daughter missed her school bus.
The father, though late for work, had to drive her if she'd
direct him to the school.
They rode several blocks before she told him to turn the
first time, several more before she indicated another turn.
This went on for 20 minutes - but when they finally reached
the school, it proved to be only a short distance from their
home.
The father, much annoyed, asked his daughter why she'd led
him around in such a circle.
The child explained, "That's the way the school bus goes,
Daddy. It's the only way I know." Smiley emoticon

Ray & Liz

Hey Dustin,

I think you are 150% correct! We can't let this disease rule our lives anymore than it does. Do your best to deal w/the flare-ups, bad times, etc. But don't let it control our lives. The "what-ifs" will destroy our lives more so than disease will and a whole lot faster.

Thanks for sharing your thoughts.

God bless always,

Mary Ann, OR

Hi Melissa,

I will be happy to keep you all in my prayers for your upcomming trip and appointment.

I hope you all have a good time of it....keep us informed on how everything goes...celeste

HAPPY MOTHER'S DAY!

*******************************

For those who are lucky to still be blessed with your Mom this is
beautiful. For those who aren't, this is even more beautiful....

The young mother set her foot on the path of life. "Is this the long
way?" she asked.

And the guide said "Yes, and the way is hard. And you will be old before
you reach the end of it. But the end will be better than the beginning."

But the young mother was happy, and she would not believe that anything
could be better than these years.

So she played with her children, she fed them and bathed them, and
taught them how to tie their shoes and ride a bike and reminded them to
feed the dog, and do their homework and brush their teeth.

The sun shone on them, and the young Mother cried, "Nothing will ever be
lovelier than this."

Then the nights came, and the storms, and the path was sometimes dark,
and the children shook with fear and cold, and the mother drew them
close and covered them with her arms, and the children said, "Mother, we
are not afraid, for you are near, and no harm can come."

And the morning came, and there was a hill ahead, and the children
climbed and grew weary, and the mother was weary. But at all times she
said to the children, A little patience and we are there."

So the children climbed, and as they climbed they learned to weather the
storms. And wi