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Patrice,
Did Corrina have her cath this week? How did it go, if you do not mind
me asking.
I was going to try to look you up, but I had a hectic day on the 29th.
I spent much of the day off the floor with a child who was having a
procedure done at the adult hospital. There are some types of equipment
that we do not have at the children's hospital. If a child goes for a
test or procedure where they are not sedated and is on a cardiac
monitor then a nurse has to go with them to watch the monitor.( If they
are sedated for the procedure, then the sedation team has nurses that
can watch the monitors.) So I was at the adult hospital most of the
afternoon.
When I came back to the floor I wound up transferring another of my
patients to ICU, so I didn't get a chance to look you up.
You have been very much in my thoughts. I hope Corrina is doing well.
Jennifer

YOU BRIGHTEN MY DAY!

[INLINE]
The days of cloud or sunshine,
The moments that we share,
The timely word, the thoughtful line,
The note that says "I care"...
[INLINE]
Mean more to me than I can say,
So it's time, I think, you knew,
How much it brightens up my day
To have a friend like you!
[INLINE]
What brightens all my memories
Is the great times that we've shared...
You're one of those special people
'Cause you take the time to care!
[INLINE]
When I feel a little blue and sad,
The easiest thing for me to do,
Is remember that things can't be that bad
When I have wonderful friends like you!

Love You All,

Ray & Liz

[INLINE]

Hi Celeste-

Sean has to go up on his Tracleer before his PH doc will even think about letting him go down on the Flolan, we have been thru this before with the doctor (TWO TIMES ALREADY) and she seems to think he will do fine at 125mg 2x day- but I believe in 2 to 3 months his liver enzymes will start the upward heave... so we will be fighting a new battle with the doctor. Sean saw her on Thursday and he wasn't a happy camper when he got home. Guess I will have to go next month and raise some "Momma Caine"-Sean so badly wants the PICC line out of his life if even for a short while.... He wants to try the Revatio, but this doc is stubborn as an ox.... Flolan has to be below 20ngs/kg, and the Tracleer is to be at therapeutic level (125mg 2/x day). We're in for an upward battle but if it means switching doctors then so be it....

Has the cardiologist thought of adding Revatio to Noel's meds? So many people are doing so much better withthis drug as a part of their PH therapy. I would ask. I mean why not? Is Noel on Coumadin/warfarin? I am concerned about the knots in her legs....

Gotta run, trying to figure out how to get to Minnesota for my uncle's funeral. It is on July 5th and there is no way I can afford to pay a thousand dollars for a round-trip ticket.

Much love to you & sorry Ihave been such a slouch at writing- too much drama going on here to spend a lot of time writing, but I do read and pray for you my friend-as well as everyone on the lists I am on.

HUGEST HUGS!

Love You,

Evan

Hugs and Hope,
Evan White (pronounced Eve-anne)
Mom to Sean, now 22! DX 10/18/02, IPAH
Flolan, Tracleer, plus many more

Peace to everyone who reads these words
Help find a cure to this silent killer!
It is as hard to see one's self as to look backwards without turning around. - Thoreau

just wanted to share my story, i was in a car accident in aug 2001, they
diagnosed tos about a year later, not that i didnt have it from the start but
the doctors weren't sure what was wrong with me, so they do the usual physical
therapy thing and give you pain meds ; after years of swimming, yoga stretches ,
walking alot , and various exercises to relax the upper extremities i have seen
more improvement the last year than the last 4 years previous, the symptoms
while still present and painful at times have gone down; i have returned to
work, can lift a little more, feel stronger, and have learned to cope with this
condition and manage it rather than letting it ruin my life...
yes, its been over 5 years now, and i know everyone responds different, i can
tell you the surgeries usually dont help and can result in scar tissue that can
result in the symptoms then coming back again..i dont know if it would work for
your daughter but i do reccommend swimming , daily, not vigorous but steady and
slowly, yoga exercises with gently stretching and see if this may help her; i
have come a long way from where i was a couple of years ago so keep the faith,
it can get better..."the body eventually heals itself." remember that...
tinamathews2003 tinamathews2003@... wrote:
Hello everyone. I just joined this group because my daughter has been
diagnosed with thoracic outlet syndrome by a specialist in Louisville.
He discussed a surgical option, scalenectomy(spelling?), which is
removal of muscle tissue from her neck to relieve the compression. We
are not happy with the thought of this. I was wondering if anyone on
this site has any experience with conservative management of this
problem. I have watched my daughter suffer so much with this, it is
very painful. We have gone from one doctor to another to finally find
out what is wrong. There has to be a better option that surgery. If
anyone has any thoughts on this please let me know. Thank you!

http://www.fibroandfatigue.com

Nikhil,
I have both TOS and Fibromylgia as well. My TOS was diagnosed just a few years
ago then my neurologist discover I have developed Fibro from my TOS because of
the tissue and nerve damage is on both sides of my vascular system which really
causes alt of problems for me pain wise. I am a member of this site. I also
receive their news letter which I find very useful. Also I get the Fibromyalgia
Newsletter in the mail which really has wonderful articles and tons of vitamin
mineral products to look into. I am focusing more now on the fibro by doing
some research on it more then the TOS because I know alot about TOS already and
it seems to the toughest although I read that fibromyalgia causes me many more
symptoms then I ever knew, even stomach problems and chronic fatigue. Just to
let everyone know I am very happy that my neuroligist put me on Avinza.
Rmm

Hi,
I am having pain and tingling sensation in my both arms, and left leg
for last two years. I am 23 yrs old.
Two doctors diagnosed me with different ailments. One told me that I am
having TOS and other told me I am having Fibromylagia.
My XRay shows some degenarative changes but MRI scan of C-Spine shows
everything normal except "Lordotic Curve straightened".
I am confused and dont know which doctors's advice to follow.
Please help.
Nikhil

Cashina,
I had TOS surgery almost a year ago and I am so glad I did. They removed my
first rib and a scalene muscle.
Just to let you know up front...the healing process from the surgery takes
time. The doctor told me nine months to a year and he was exactly right.
I am pretty much 75% cured. I do have some issues with some atrophy I
developed in the shoulder due to not using the arm, but all in all I am so much
better.
I know how you feel with the sleepness nights and pain. I was on sleeping
pills for over two years. The pain was the worst at night.
There will always be some things I stay away from, like lifting anything
heavy, doing too much over my head. If I do, I usually pay for it the next day,
so I watch what I do. The doctor said that will probably always be the case. I
do from time to time have to take a muscle relaxant to calm things just a bit.
My life is back pretty much so.
Good luck. Remember, just go slow. It's important. Be patient with the
healing.
Peggy
cashina34 <cashina34@...
Hi all, I am really glad I found this group... I have been dealing
with pain and numbness and tingling hands and sleepless nights,for
almost 5 years now. Finally last year they diagonosed me with TOS...
and in a few weeks I will be having my surgery. I would like to hear
from anyone who has had the surgery to let me know about the healing
process and your feelings on surgery, has it helped.
I am a 36 year old womman, who was injured in a car accident and
this is how they say I have the TOS. I am a bit scared but also
looking forward to hold my arm up again. It has been a long time
since I could use a hair dryer or a curling iron. I can't put my arm
over my head it goes limp and numb in just a few seconds, and the
pain in my shoulder and neck is not worth doing my hair..
My surgeon has told me I will be in hospital about 2 days, and that
I won't be driving for a while.. but he didn't say how long a while
would be.
Any information would be great, and just talking to someone who
knows about TOS would be nice. Friends and family are good but they
don't understand how someone could hurt everyday and everynight. It
is exhausting to be in pain all day, and even worst when you dont
get a good sleep.
Thanks
Cashin

Hi Dustin-

Read your email and wanted to wish you a very happy birthday.

[INLINE] I promise not to tell anyone how old you are, if you don't. (heehee).

Hope today was a great one for you and that tomorrow only gets better.

Have a good one, pal.

Ray & Liz

Of course not, Melissa, that's why I sent it to the ph parents group for anyone who wanted to, off topic. I thought she looked like a princess, too. Thanks. Love, Donna, Kari's Mom.
Melissa Brewer <brewerbus@...

Donna,

Just wanted to let you know that I took a peek at the wedding photos too! Your daughter looked like a princess.... Thanks for sharing (and I hope you didn't mind me looking too!)

Melissa

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

~Psalm 31:24~

Hello Everyone. I drove 600 miles to see a doctor in St. Louis regarding my
TOS. I have a very complex case when it comes to my bone and spine
abnormalities. The thoracic surgeon in Pittsburgh that I went to wanted me to go
to St.
Louis to see Dr. Mackinnon. He said that she specializes in TOS. I was so
impressed with her knowledge and the ability to answer all of my questions
regarding
my symptoms etc. For the first time, all of my symptoms have been confirmed
that they are TOS related. I only had one question that she couldn't answer.
So, she made me an appointment to see her husband which is a thoracic surgeon
and familiar with the vascular side of TOS. He was just as knowledgeable and was
able to answer the question that his wife couldn't. Our Pittsburgh hospitals
rank in the top 10 in the country. The Pittsburgh Dr.s I have gone to are a
joke compared to the St. Louis Dr.s.
Here is their info:
http://wuphysicians.wustl.edu/physician2.asp?PhysNum=744
http://wuphysicians.wustl.edu/physician2.asp?PhysNum=1074
Hope this info can help someone!
Take care,
Jill

Hi all, I am really glad I found this group... I have been dealing
with pain and numbness and tingling hands and sleepless nights,for
almost 5 years now. Finally last year they diagonosed me with TOS...
and in a few weeks I will be having my surgery. I would like to hear
from anyone who has had the surgery to let me know about the healing
process and your feelings on surgery, has it helped.
I am a 36 year old womman, who was injured in a car accident and
this is how they say I have the TOS. I am a bit scared but also
looking forward to hold my arm up again. It has been a long time
since I could use a hair dryer or a curling iron. I can't put my arm
over my head it goes limp and numb in just a few seconds, and the
pain in my shoulder and neck is not worth doing my hair..
My surgeon has told me I will be in hospital about 2 days, and that
I won't be driving for a while.. but he didn't say how long a while
would be.
Any information would be great, and just talking to someone who
knows about TOS would be nice. Friends and family are good but they
don't understand how someone could hurt everyday and everynight. It
is exhausting to be in pain all day, and even worst when you dont
get a good sleep.
Thanks
Cashin

Donna,

Thanks for letting me see the pictures. Andrea looks really happy, and lovely in her dress.

Pam
Donna Lain <lainxxdm@...

Note: forwarded message attached.
Donna Lain
P.O. Box 9368
Cedarpines Park, CA 92322
(909) 338-2538 - home
(909) 338-1779 - work
lainxxdm@... - e-mail

I posted on ph friends about this because of my curiosity...but didn't get any responses so maybe no-one has had any experience with this on there...so I will try here...

when I recently spoke to Noels card he did mention about possibly going up on tracleer....

I said I thought that 125 mg....twice daily was the highest dose and he made me feel like there were possibly doses higher.

when Noel first went on tracleer effects were immediate but the visable ones were short lived. although, it has done amazing things I have been told by the old card for things like cardiac output...

with remodulin....symptoms coming back...turn up the pump...that worked well for visible symptoms...

any information about this that anyone knows...please email me..thanks ...celeste

Hi Dustin, thanks for finding a massage therapist that Becky could go to if it's possible for her. Please do invite the one in So. Cal. to join our group. I know my daughter's back problems are benefiting from the massage she is having. It's helping her to live with the problem.

Happy Birthday to you. I will get your day entered in our birthday list so we'll be aware of it next time. The yoga is a great gift to give yourself. I'm sure you felt greatly relaxed from it too. Playing with the dog is good for that too. Can lower your blood pressure also. Playing with my pets always leaves me feeling good and much calmer. It improves my outlook on everything.

Thankyou for sharing your experience with massage and yoga. Glad you are feeling so well today.

Best wishes,

Betty
bbutterfly@...

Donna,

Just wanted to let you know that I took a peek at the wedding photos too! Your daughter looked like a princess.... Thanks for sharing (and I hope you didn't mind me looking too!)

Melissa

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

~Psalm 31:24~

[LINK]

Hello all,

I haven't heard from my instructor yet, but I did put out a message on a couple of bulletin boards (seeking therapist in Batesville to work with Sarcoid patient). I actually got a hit from a therapist located in Batesville who has been practicing since 1988.

[To Becky: I totally respect your privacy. I am going to call the therapist tomorrow and speak with her. All she knows is that I have a friend in Batesville who is suffering from Chronic Pain and is living with Sarcoidosis. I'll forward you her information after I speak with her.]

Funny thing is I also got a response from a therapist in So California. She says that she suffered from Sarc and thinks massage helped her go into total remission and she offered to lend an ear to Becky should she need one. I'll forward Becky the email and invite the therapist to join our group.

Massage really is more than just pampering yourself; it is a form of healthcare that's been around hundreds (if not thousands) of years longer than traditional Western medicine.

I think of massage in the same way I look at doing my laundry. Once a week keeps you looking good and running smooth, if you have to you can stretch it out another week; after a month, you're stinking. Should you have a stain or other trouble spot, you spend a little time working it out. Otherwise, you block out the time, leave all your worries at the door, and take care of the little things before they become BIG THINGS. (ok, I lost my thread about half way through)

---

In other news, today is my birthday! 32 was hardly a bump on the ole ego...

As a gift to myself, I have decided to resume my yoga practice. Today I just did 20 minutes worth of poses and 10 minutes of meditation and it felt wonderful. I felt straighter and lighter all day. These aren't hard poses either, just taking the time to focus on yourself and your body for a short time can have wondrous benefits.

As I was sitting in meditation, I thought to myself. When do we ever sit down and just breathe? I mean really breathe and pay attention to what we're doing. Big belly breaths, not worrying about what we look like or who's watching. In, out, in, out, maybe while listening to the birds or the wind outside.

Try it, you'll see...

Enough rambling, I'm going to play with my dog.

D.

---
Dustin Graham, CMT
Duluth, GA
678-467-7887
dgraham@...

This is just awesome guys! I finally got around to graduatin and I didn't even
have to turn up a single day this time around to get my final credit points. Now
I am fully qualified in a BA and on the hunt for a new job! I'll let you
guys know how I do, but just thought I'd mention this now since they helped me
out. If any of u interested in getting a BA or something similar without having
to go through all the hassle they put you through in US institutions give these
guys a call 1-801-697-0461 . They got me through in around a month.

Note: forwarded message attached.

Donna Lain

P.O. Box 9368

Cedarpines Park, CA 92322

(909) 338-2538 - home

(909) 338-1779 - work

lainxxdm@... - e-mail

http://neuro-
www.mgh.harvard.edu/neurowebforum/MovementDisordersArticles/tosp.t.ribr
esection.html

Thanks, yea he had all his affairs in order and I knopw that he is in a better place. My new nephew is darling. I also am expecting another one any day now. We had one born the end of May also. It's been a busy family. lol

Debbie m
Betty Thomas <bbutterfly@...

Hi Debbie, glad you liked the fireworks. I am so sorry to hear that your father passed. It was fortunate you were able to get there in time. I'm glad it was quick and hope he didn't suffer. Thankfully he is in a better place now.

Congratulations on the new little nephew. Our families just keep growing. My grandchildren just aren't cooperating though. None have married yet so no new ones. One of these days.

How are you doing with working? Is it very hard on you? I hope you are able to cope.

Thankyou for keeping us all in your prayers. I keep you in mine too. Take care of yourself.

Love,

Betty

Betty
bbutterfly@...

Does anyone have any avdice for me. I'm making an appoinment for a
First Rib Resection Removal with my vascular surgeon this week. It
wont be for months, right? I have TOS on both sides.
Girlymom

Donna,

If it's okay with you, I would very much like to see the pics of your daughters wedding flowers. If not, I completely understand.

Barbara (Amy's mom)
Donna Lain <lainxxdm@...

Celeste, I'm glad that Noel has an appt. next week. I wish for your sakes it was sooner. I think I know how upset and worried you are.

I didn't want to make you sad if you're talking about my daughter Andrea's wedding picture, if I'm the friend you're talking about. For Andrea and Tony's sake, I put my grief over Kari aside and celebrated their special day. But, knowing that Kari wasn't there in person and won't have those special times, breaks my heart even more than it broke when she passed away in my arms.

I know in my heart though that Kari was at the wedding. I'll have to forward you a picture of the bride's bouquet because it was white and red roses with purple delphiniums surrounding a sunflower (the sunflower was Kari's favorite and we always associate it with her). The table decorations was a mirror with a mint julep cup with a sunflower in it. The cake topping was sunflowers also. All of us, Andrea and Tony included are better people because of Kari. She valued life so much that it makes us want to live life to the fullest and be the best we can.

With Noel, please try to take it day to day, that's what I had to do with Kari. I'm not saying they will have the same outcome but it just hurts too much to try to predict the future.

As always, my love and prayers are with you. Keep us posted on the card. appt. and what is going on. Love, Donna, Kari's Mom.
I thought I would just write a quick note to say hi!
things here are going along....
when I spoke to the card he said Noel cannot go up with the remodulin again and he is very frightened of a major lung hemmorrage.
they sent us an appointment for the 7th of July. he is going to do an echo and some other tests..I am not sure what they are....hopefully he will have been able to come up with something that they could try by then.
with not going up on the remod. Noel is really getting back the ph symptoms. It seems to be a bit better now that her "face cleaner" action is almost over and her legs are somewhat softer...thank goodness. I get so afraid they are going to split right open and whenever I think about them...I think of that wood feeling....
I cannot wait until the card sees her legs..he hasn't ever seen her like this or seen her legs before, but I would like to hear what he has to say on this subject. she still has the lumps and one is getting quite big again...the one over the bend in her leg in the back. I guess they all must be hemmorrages because they are exactly the same as the original.
she is suppossed to go to the dentist today...haha..
i hope she goes because the dentist called me and spoke to me on the phone. there will be no more cleaning or pre meds or anything like that. from now on...he will just check them over ...himself ....and no one else will touch her.
he just wants to have some type of a plan in case he ever needs to do anything or if a tooth became absessed. I can't even imagine what that could be like..........
I was going to write a note earlier...but I was feeling terribly down.....I don't know about anyone else with young ladies and ph....but Noel gets very severe before she starts her period....this time I didn't know if she would make it...
someone on the list sent me some pics of their childs wedding....I just kept thinking of their child in the pic where this person was smiling.....it is different sometimes how one thing....when you are feeling like nothing will ever be right again...can change your whole mood and attitude...and you just keep thinking of that every time you are feeling your worst. seeing someone happy can really make you happy too and reinforce the feelings that whatever happens.....we will be okay.
thank you again for the person who sent me this most beautiful picture.
well.....I gotta run....i hope all is well and that everyone is surviving the heat.....
much love celeste

Know I won't be able to attend the conference this year, Charlie. But will be lookin' forward to all the great feedback that comes out of it.

I've had a great morning, reading all my emails....all of them bringing a smile or laugh or just a good feeling. Read yours and it made me feel good also, and happy to hear those 4 words "am now in remission". Fantastic!!!!!!!

Hopin' to read more about you Charlie and getting' to know you better....cause here (as Sister Sledge put it so eloquentally many years ago) .........WE ARE FAMILY !!!!

Ray & Liz

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

Hi Katy,
My chiropractor does soft tissue manipulation ... no cracking or anything
like that on me. I definitely feel a difference and am in less pain if I go to
him regularly. My Chiropractor says that he has quite a few patients with it and
does not recommend the surgery for my case. He thinks it should be avoided as
much as possible with me. I have lung, heart, spinal, vascular problems and
surgery is even more risky for me. I was actually mad that he didn't diagnose
me himself if he knows so much about it. I guess legally, he has to be careful
in what he says medically.
I haven't gone to a physical therapist yet. I have to wait until I see my
specialist in St. Louis. I am curious as to what they do. Please post regarding
your first appointment when you can!
Take care,
Jill

Hi all, with the coming conferences coming up, anyone attending, will you please send me any written material that would help all of us. I will then scan it and put it on the list. I'm hoping articles by doctors speaking at the conferences about sarc would be helpful to us. Anything you deem helpful to us all. Just email me privately and I will give you my mailing address. Thanks a bunch. Wish we could all attend.

Betty
bbutterfly@...

Celeste, I'm glad that Noel has an appt. next week. I wish for your sakes it was sooner. I think I know how upset and worried you are.

I didn't want to make you sad if you're talking about my daughter Andrea's wedding picture, if I'm the friend you're talking about. For Andrea and Tony's sake, I put my grief over Kari aside and celebrated their special day. But, knowing that Kari wasn't there in person and won't have those special times, breaks my heart even more than it broke when she passed away in my arms.

I know in my heart though that Kari was at the wedding. I'll have to forward you a picture of the bride's bouquet because it was white and red roses with purple delphiniums surrounding a sunflower (the sunflower was Kari's favorite and we always associate it with her). The table decorations was a mirror with a mint julep cup with a sunflower in it. The cake topping was sunflowers also. All of us, Andrea and Tony included are better people because of Kari. She valued life so much that it makes us want to live life to the fullest and be the best we can.

With Noel, please try to take it day to day, that's what I had to do with Kari. I'm not saying they will have the same outcome but it just hurts too much to try to predict the future.

As always, my love and prayers are with you. Keep us posted on the card. appt. and what is going on. Love, Donna, Kari's Mom.
I thought I would just write a quick note to say hi!
things here are going along....
when I spoke to the card he said Noel cannot go up with the remodulin again and he is very frightened of a major lung hemmorrage.
they sent us an appointment for the 7th of July. he is going to do an echo and some other tests..I am not sure what they are....hopefully he will have been able to come up with something that they could try by then.
with not going up on the remod. Noel is really getting back the ph symptoms. It seems to be a bit better now that her "face cleaner" action is almost over and her legs are somewhat softer...thank goodness. I get so afraid they are going to split right open and whenever I think about them...I think of that wood feeling....
I cannot wait until the card sees her legs..he hasn't ever seen her like this or seen her legs before, but I would like to hear what he has to say on this subject. she still has the lumps and one is getting quite big again...the one over the bend in her leg in the back. I guess they all must be hemmorrages because they are exactly the same as the original.
she is suppossed to go to the dentist today...haha..
i hope she goes because the dentist called me and spoke to me on the phone. there will be no more cleaning or pre meds or anything like that. from now on...he will just check them over ...himself ....and no one else will touch her.
he just wants to have some type of a plan in case he ever needs to do anything or if a tooth became absessed. I can't even imagine what that could be like..........
I was going to write a note earlier...but I was feeling terribly down.....I don't know about anyone else with young ladies and ph....but Noel gets very severe before she starts her period....this time I didn't know if she would make it...
someone on the list sent me some pics of their childs wedding....I just kept thinking of their child in the pic where this person was smiling.....it is different sometimes how one thing....when you are feeling like nothing will ever be right again...can change your whole mood and attitude...and you just keep thinking of that every time you are feeling your worst. seeing someone happy can really make you happy too and reinforce the feelings that whatever happens.....we will be okay.
thank you again for the person who sent me this most beautiful picture.
well.....I gotta run....i hope all is well and that everyone is surviving the heat.....
much love celeste

Emergency rooms seems to be very wary of giving out pain meds. I went to one
when my TOS first started up (cause the pain was horrible - i thought i was
having a heart attack)...and all they gave me was a children's asprin and wrote
me a perscription for Motrin (which you can buy over the counter)...ooo big
help. They didn't even figure out what my problem was, my primary doctor did. So
if you have a primary doctor, i would talk to them about something to help until
your appointment. Good luck!!
Katy

Have any of you been to a chiropractor to help with your TOS? My friend talked
to a chiropractor about my 13th rib issue and the chiropractor talked like he
had seen that many times before and could help. I have my first physical therapy
appt scheduled for next wednesday. Just curious.
Katy

Dear Linda,

thank you for the kind words of caring and support.

I keep all of our kids and families in my prayers .

I think you are a special mom too....much love, celeste

Hi Charlie, and welcome to Sarcoidosis Support. I'm sorry you have Sarcoidosis but I am glad you found us. This is a group of wonderful caring people. If you need support, understanding and knowledge, you have found it here. "Understanding", because we all have this disease and know what you are going through, "support" because we all need it and "knowledge" because we are all so willing to share what we know with one another.
Please post us and introduce yourself and tell us a little bit about what is going on with you. We're looking forward to getting to know you and welcome you into our "family". I think you will enjoy getting to know us too.

Betty Thomas - List Mom
bbutterfly@...

i have had tos for about 4 years now just now found a dr that will
treat me i have called every one i finally found a vascular dr in
lexington kentucky that treats it. i am in a bunch of pain and dont
have anything for it. take over the counter med like candy and it dont
work at all. i am on bipolar and depression med. i cant go to that dr
til july 11 and now i have lost all the feeling in my left hand it my
pinkie and my ring finger does anyone have any suggestions does any
one thing going to the emergency room will help any til i go to the dr
on july 11. my head hurts very very very bad all the time do you think
they would give me any thing for that either
any advice will be helpful.
thanks elizabeth

Hi Katy,
Welcome to the group. I am a newbie too. You are lucky your doctor figured it
out right away. I have been dealing with severe arm pain off and on for 7
years! The past 2 years I started getting chest pain, numbness in my face and
arm
in addition to many more symptoms. I have been to Neurologists, Heart
Doctors, Lung Doctors, Orthopedic doctor, blood doctors, and many
hospitalizations
without finding anything. I finally took it upon myself to figure it out on my
own. I ended of finding stuff on the Internet and a thoracic surgeon in my
area. Without hesitation, he confirmed I did have TOS. The saddest thing is that
my primary care physician treated me as if I was a hypochondriac. My
neurologist actually said that my pain, numbness symptoms, etc., were to vague
and there
wasn't any reason for me to have pain in that area! UGH! I am headed to a
specialist for TOS in St. Louis on July 19th. At that time, we will decide what
my options are.
I hope this group gives you the answers you are looking for!
Take care,
Jill
Pittsburgh, pa

I thought I would just write a quick note to say hi!

things here are going along....

when I spoke to the card he said Noel cannot go up with the remodulin again and he is very frightened of a major lung hemmorrage.

they sent us an appointment for the 7th of July. he is going to do an echo and some other tests..I am not sure what they are....hopefully he will have been able to come up with something that they could try by then.

with not going up on the remod. Noel is really getting back the ph symptoms. It seems to be a bit better now that her "face cleaner" action is almost over and her legs are somewhat softer...thank goodness. I get so afraid they are going to split right open and whenever I think about them...I think of that wood feeling....

I cannot wait until the card sees her legs..he hasn't ever seen her like this or seen her legs before, but I would like to hear what he has to say on this subject. she still has the lumps and one is getting quite big again...the one over the bend in her leg in the back. I guess they all must be hemmorrages because they are exactly the same as the original.

she is suppossed to go to the dentist today...haha..

i hope she goes because the dentist called me and spoke to me on the phone. there will be no more cleaning or pre meds or anything like that. from now on...he will just check them over ...himself ....and no one else will touch her.

he just wants to have some type of a plan in case he ever needs to do anything or if a tooth became absessed. I can't even imagine what that could be like..........

I was going to write a note earlier...but I was feeling terribly down.....I don't know about anyone else with young ladies and ph....but Noel gets very severe before she starts her period....this time I didn't know if she would make it...

someone on the list sent me some pics of their childs wedding....I just kept thinking of their child in the pic where this person was smiling.....it is different sometimes how one thing....when you are feeling like nothing will ever be right again...can change your whole mood and attitude...and you just keep thinking of that every time you are feeling your worst. seeing someone happy can really make you happy too and reinforce the feelings that whatever happens.....we will be okay.

thank you again for the person who sent me this most beautiful picture.

well.....I gotta run....i hope all is well and that everyone is surviving the heat.....

much love celeste

Hi,
Just wanted to say "hello" to all of you. I was diagnoised with
Sarcoid several years ago and am now in remission.
I hope a lot of you are able to go to the conference later this
year. When I was first diagnoised I went to one in New Jersey. It
was great to be around so many people with my unknown and
misunderstood disease!!
Charlie

Hello all!
My name is Katy, i'm 26 years old, and i just found out a few weeks ago that i
have an extra rib (cervical rib). It was found when i started complaining of
excrutiating pain in my left arm and side. Funny, the emergency room did a chest
x-ray and chest catscan and didn't find it...but as soon as i went to my primary
doctor, he figured out the problem in 5 minutes. Took another chest x-ray to
confirm it and yup...there it was. And so while he's never said i have Thoracic
Outlet Syndrome outright, from my research on the web, that seems to be exactly
the name of the issue. We did a nerve test a week and a half ago and it also
confirmed that there is nerve compression on my left side.
He's had me taking naproxen (anti-inflammatory) 500mg a day since we discovered
it, but it hasn't done much of anything. I don't hurt constantly, but when i
do...boy does it hurt. So our next step is physical therapy. He thinks that
method may be able to relieve the pressure in that area. If not, the only other
options he's mentioned so far are anti-inflammatory injections (which i would
have to get once every 2 months) and surgery (to remove the rib - which actually
spans both sides).
Have any of you tried physical therapy? What was it like? Did it help? What
about the other two options...have any of you gone the injection route or
surgery route? Just trying to get some more info so i can know what to expect.
This has been interrupting my life long enough.
~Katy~

Dear Pam,

I had been watching for a post from you....whew...it sounds like you have had a lot going on.

I didn't know Becky was scheduled for scoliosis surgery. I was sorry to hear that because I know it is going to be very stressfull for you and for your family. I think it is good that Beckys doc wants her to go back on flolan during the surgery and after until she is well enough to resume the ventavis ...it shows he is thinking and covering all the bases. I do feel for Becky though ....she must be kind of discouraged about having to go back to the pump. but it is only for temporary....easy for me to say huh???.....I know Noel hates her pump and would love to get rid of it...if she did i don't think we could ever get her back on.

I was sorry to hear that you broke your foot and that your cars ac conked out. That must make things really hard not being able to drive.

I can imagine why you are having trouble sleeping at night. I can imagine that this upcoming surgery with Becky is really weighing on your mind...and even her going back on flolan.

I would be happy to keep Becky in my prayers....and your family...

hang in.....much love celeste...Noels mom

Hello everyone. I just joined this group because my daughter has been
diagnosed with thoracic outlet syndrome by a specialist in Louisville.
He discussed a surgical option, scalenectomy(spelling?), which is
removal of muscle tissue from her neck to relieve the compression. We
are not happy with the thought of this. I was wondering if anyone on
this site has any experience with conservative management of this
problem. I have watched my daughter suffer so much with this, it is
very painful. We have gone from one doctor to another to finally find
out what is wrong. There has to be a better option that surgery. If
anyone has any thoughts on this please let me know. Thank you!

Hello all,

I haven't posted much for awhile. Things at our house have been rather rocky, and seem to be going on the same path as far as I can see.

Becky is doing really well. Her medicine they gave her in May for the heart arrhythmia is working, and she finally adjusted to it.

However, now we are creeping up on the scoliosis surgery date, which is July 17. Unfortunately, for Becky, John (my husband) and I, Dr. Ivy is concerned about Becky's stability during the surgery, and wants her to go back on Flolan starting sometime next week with a temporary line, keeping it through the surgery and after the surgery until she is recovered enough to breathe deeply enough to use the Ventavis again. I asked lots of questions of both Dr. Ivy and Lori, his NP, and John and I discussed it several times. We finally concluded that if Dr. Ivy believed that this was best, then we couldn't afford to take a chance. He had stated that scoliosis surgery was a tough surgery for anyone, but especially for someone with PH.

Obviously, Becky is upset about going back to Flolan, and was in terms on Monday night when we told her about it. She has gone to visit her aunt for a couple of days and can go swimming in her apartment pool while she is there. Then on Monday (July 3), we're taking her to Splashtown here in Houston, where she wanted to go ever since she got on Ventavis. Hopefully, it won't rain.

In the meantime, we had a major car repair - $900, our a/c compressor burned out to the tune of $1,000, and I turned my foot jumping in our neighborhood swimming pool and fractured a bone. So now I have a blue cast and can't drive until it is off.

I find I don't sleep very well right now, at least not at night. I have a hard time getting to sleep at night.

I would appreciate prayers for our family and Becky for the surgery and for having the Flolan put back in that Becky will be able to deal with it for the short term.

Thanks.

Pam (mom to Becky - 17 - congenital heart disease, severe PH, scoliosis, reactive airway disease, etc.; Johnny - 14 - healthy; and Laura - 11 - healthy)

WOW I live near St Louis so I may be calling Dr McKinnon....seems funny to
me, tho that she is in "plastic surgery" and also a TOS Specialist...wonder how
that works? I wil give her a call...St Louis is where many fine state of the
art award winning hospitals are, so I am SURE if she was recommended she will
be awesome Vicki

I have the book, Joanie. Read it about 2-3 years ago. Also saw her on Oprah, Montel Williams, and other talk shows talking about her sarcoid. I bought my copy at Barnes & Nobles. If they don't have it in stock, they will order it for you. A great read.

I haven't heard of any other celebrity havin' sarcoid, however, awhile back I saw a movie with Lou Diamond Phillips, where he plays a writer (and he has the disease) yet in the movie it caused him to lose his mind and start killing people. Hollywood, huh??? Can't remember the name of the movie, but my son and I laughed at how stupid the movie was.

If I do hear of any more celbrities with sarc will let you know.

Hope you're having a pleasant and pain-free holiday and weekend.

Ray & Liz

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

LORI what led you to find a Dr to diagnose your disc problem..how do you
know where to find a Dr and in what speciality??? THAT is the hard part for
me... dont know where to turn for help. Vicki

Hello. I found out about thoracic outlet syndrome just by typing in my
symptoms in the search. I was convinced that I had it the minute I read about
it. I
got lucky and found a specialist in my area. I just went to my appointment and
he confirmed the diagnosis. I have NEVER been impressed with a Dr. Most Dr.s
made me feel that everything was all in my head. He was also the only Dr. that
was worried about my future and said he wants to see my live a quality life.
Since I have a really complex case. My spine is crushed and fused, my
scoliosis is really bad. Plus I have sprengels deformity and the list goes on.
He
wants me to see another specialist that deals with more complex bone
abnormalities. She is in St. Louis Missouri.
Any ways, I just wanted to make everyone aware of them. He is in Pittsburgh,
PA. He is actually head of Thoracic surgery at the Hillman cancer center. His
name is Rodney Landreneau.
http://findadoc.upmc.com/PhysicianBioQuery.aspx?ID=25003102&A=
The Dr. I will be seeing in Missouri is Dr. Susan MacKinnon. She is head of
the division on plastic reconstructive surgery and specializes in thoracic
outlet syndrome. Has anyone heard of her??
Can anyone give me an estimate on how long it takes to recoop after surgery??
Thanks! Jill
Pgh. PA

I was just reading a magazine article today and it said that actress Karen Duffy suffers from Sarcoidosis. I was just curious, does anyone know of any other celebrities or famous people who have been diagnosed with this?
Here's some info about Karen Duffy that I found on a website...
Model and actress Karen Duffy suffers from a rare form of sarcoidosis known as neurosarcoidosis. This effects her central nervous system and has her in constant, chronic pain. Duffy is best known as a former MTV VJ, Revlon model and Jim Carrey's co-star in the hit film Dumb and Dumber. Recently she chronicled her story in the book Model Patient: My Life As an Incurable Wiseass.
Has anyone read this book she wrote?
Joanie

Hi Jstme, I have some of the same symptoms as you have. In the lungs and
hilar lymph nodes, and I also have it in the skin. Mine was diagnosed by
lung biopsy and also from 3 skin biopsies.
I'm glad you've joined us and look forward to getting to know you. We'll
also try to answer your questions and concerns. Let us know about the rest
of your test results.
Hugs,
Betty
bbutterfly@...

Hello Celeste,

I am sorry that Noel has been having such a hard time lately. You have been through so much. Just wanted you to know that my family and friends are all thinking and praying for Noel and all of our kids. Good luck with the remodeling and hope for better news soon. You are a very special mother.

Much love,

Linda (Sam's Mom)

We have reports about conference from 7 people in the PH community up
on our website! Check them out on the homepage at
www.PHAssociation.org. We'd love to hear from you too! Send your
report to web@.... Pictures and materials from
conference will be posted shortly so stay tuned.
Diane Greenhalgh

This is a lovely patriotic site I thought you might want to check out.

http://lovethissite.com/4th/

Betty
bbutterfly@...

Hi all, I started with erythema nodosum on June 1, had cough, chest
xray showed bilateral hilar adenopathy, CT scan showed swollen lymph
nodes around chest cavity etc. Had bronchoscopy on Tuesday, they took
biopsies, OUCH, it hurt, still waiting for all results, but looks
like sarcoid. One month later, the EN has subsided, but bruise
looking areas. Just wanted to say hi and I'll be coming here
frequently to get info etc.

Thank you Bill your kind offering to help with directions or even a visit if my daughter ever had to stay in a Boston hospital was very nice.

I know from being in the hospital in Vermont with her.....the stays can be lonely when you don't know anyone.

thank you again....celeste

Ok, I'll put my TOS experience out there.
I have had TOS for over 2 years. It took a year and a half to finally be
diagnosed. No, I did not wake up one morining in chronic pain. I first had
problems with my wrist and arm hurting when I lifted things. Then it got worse
with swelling and blueness in the hand. After about a year, I started also
having pain in my chest at night. I had to take sleeping pills to sleep. I was
not in chronic pain all the time. I had a good day here and there, but I sure
knew when I over did it.
I was finally diagnosed by a Vascular Surgeon in Sept.04. I had surgery 2
weeks later to remove the first rib and scalene muscle.
I am 75% better than I was before the surgery. The bottom line is though, I
will always have TOS. Surgery doesn't take it away, but relieve the discomfort.
I still have to be careful at what I do. I also know what I can't do or I pay
for it in flare ups.
I've talked to alot of people with TOS. We all seem to share alot of the same
symptoms, but no two people are exactly alike.
Good luck to all!
Iwish214@... wrote:
I am a little thrown back from the email from rdamram3663@....
You say that if you don't have chronic pain then you most likely don't have
TOS. Are you saying that you woke up one day and were in chronic pain? From
what I have read the symptoms slowly come about and that most testing is normal
at first. Without any explanations as to what is causing your problems. Is this
not true? I have also read that if you catch it fast enough their are
preventative therapies that can help you to keep most functions.
Would love to know other TOS sufferers opinions.
Thanks,
Jill
Pgh, PA

SPONSORED LINKS
Repetitive strain injury Food borne illness Terminal illness
Thoracic outlet syndrome

I am a little thrown back from the email from rdamram3663@....
You say that if you don't have chronic pain then you most likely don't have
TOS. Are you saying that you woke up one day and were in chronic pain? From
what I have read the symptoms slowly come about and that most testing is normal
at first. Without any explanations as to what is causing your problems. Is this
not true? I have also read that if you catch it fast enough their are
preventative therapies that can help you to keep most functions.
Would love to know other TOS sufferers opinions.
Thanks,
Jill
Pgh, PA

Definitely gave me a Saturday chuckle, Ray. Thanks. We do need laughter in our lives. Helps us to cope.

Betty
bbutterfly@...

Hi,
I was just diagnosed with TOS. This is the first time I heard about
it. My dr. suggested physical therapy and said surgery for this
condition is so intense, I guess it isn't an option. When I
described my symptoms to my dr, he acted like I was talking out of
the side of my neck.
Anybody got any more answers?-

Hello everyone,
I enjoyed meeting you and all of your children at the conference. It
was truly a good experience for us.
O.K. this is off topic, but I have to tell you what happened on the way
home. Some of you know that Bill and I are ice hockey (specifically
Nashville Predators) fans. Well guess who sat next to me on the flight
back to Nashville. Barry, Trotz, the head coach of the Nashville
Predators! He was flying back to Nashville after the NHL draft.
I told him (and this is true) that I keep pictures of various Predators
and I display them on my refrigerator door if they are playing well. If
I get mad at them because I don't like the way they are playing I take
their pictures down.
"Well, I do worse than that to them," he replied. We discussed some of
the players on my refrigerator door.
Anyway, I was in heaven. Joey's cardiologist will be jealous when he
hears this. He is a huge Nashville Predators fan.
Hope everyone made it home safely.
Much love,
Jennifer

This preacher was looking for a good used lawnmower one day. He found one
at a yard sale that Little Johnny happened to be manning.
"This mower work, son?" the preacher asked.

Little Johnny said, "Sure does -- just pull on the cord hard, though."

The preacher took the mower home and when he got ready to mow he yanked
and pulled and tugged on that cord. Nothing worked. It wouldn't start.
Thinking he'd been swindled, he took the mower back to Little Johnny's
house. "You said this would work if I pulled on the cord hard enough."

"Well," Johnny said, "you need to curse at it sometimes."

The preacher was aghast. "I've not done that in years!"

"Just keep yanking on that cord, Preacher. It'll come back to you." Smiley emoticon

Ray & Liz

Celeste,

I am glad you appreciated my sense of humor regarding the roads here in Boston. Dr. Landzberg works with my daughter's Cardiologist/PH specialist, Dr Mary Mullen, as part of The Boston Adult Cardiac Heart Service (BACH). We have met him non-professionally a couple of times and he seems very nice. If you or anyone else on the list are coming to Boston do not hesitate to contact me and I will do what I can to help, even if just would like a visitor. I know when my daughter has stayed more than a couple of days in the hospital we grew to appreciate others coming by to say hi. It is one of the reasons we count our blessing about being so close to Shannon's PH doctor. I should say since I live so close to the city I do not know anything about the hotels.

BillfromBoston

Jill...I am so sorry you are having to go thru this terrible set of things!!
I have had terrible TOS for about the past 2 years but have had some flare
ups for the past 6 years...recently I wake up in the middle of the night with
horrid pain in one or both arms and fingers...guess I slept on them wrong...the
closet thing I can come to decribing the pain is it feels like you hit your
"funny bone" REALLY hard and the pain is like a prolonged electrical "shock"
varying in intensity this is what I am in the middle of... sometimes it lasts
for hours....actually I can hardly type cause my hands are SOO asleep alot of
the time. Tingling terribly so Even tho I know I am not as extreme as
you in your pain...I thought I would write and let you know I am thinking about
you and hoping you soon will be in for more comfort! There are those of us
out there whpo DO understand...wish I could be of some help tho!!! Vicki

dustin and all'
thanks for the support. and Dustin:as for where I live: I live in
batesville,arkansas two of the major cities close by are Jonesboro
and little Rock. they are both about 90 miles away from where I live.
becky_sunlight1956
======================================================================

Hello Everyone. I just found your group. I started going through
posts, but I am in to much pain to find my answers. So, I am sorry if
I am asking questions that are already answered somewhere. I have a
long list of medical conditions. Klippel Fiel Syndrome (thoracic
spine is crushed and fused, Sprengels deformity (something to do with
ribs and other deformities on my left side, scoliosis. I was also
diagnosed with a DVT in my left jugular vein, signoid sinus and
another vein over 9 years ago. They have put me on long term Lovenox
injections which cause me a lot of joint pain. There was never any
discussion to go in to unblock it.
The past years have been horrible. I have been having severe
throbbing in my left arm and the last 3 fingers. I get a burning
sharp pain under my arm pit and lower inner arm. I having numbness,
tingling in my arm and fingers. Chest pressure. The numbness is
slowly moving into my jaw and now up my face on the left hand side.
My head falls asleep on the left side. Those are just a few symptoms
that I can think of. I can only sleep in about 2 positions.
I have been to every doctor imaginable. Vascular, neurological,
internal medicine, Auto immune disorders, Autonomic dysfunction's
etc..........I have had MRI's, MRA's (vascular MRI), Nerve conduction
test and emg? Many Doppler's looking for more blood clots because of
the sever throbbing and burning sensation. The only thing that shows
on a Doppler is that when I am lying down, the blood flow in my lower
jugular vein takes a lot of time to fill when compressed. But when
sitting up, the flow is faster. Every test (other than the left
jugular vein being blocked) has been normal.
At this point, my doctor is treating me as if I am a hypochondriac.
My big questions is, is it possible to have TOS even if all your
tests are normal? Do some DR's not believe in it? Or is it likely
that my Dr.'s know about it but do not think I have it?
I am so sorry for typing so much. Any help would be greatly
appreciated.
Thank you!
Jill from Pittsburgh, PA

Hello all.
I have an appointment scheduled with Dr. Ansel who is a neurologist in the East
Bay in a few weeks. Of course the w/c insurance is trying to show that there is
nothing wrong with me. He reviewed my films a few months ago and said just that
and they switched me to permanent and stationary disability. Of course this was
without even seeing me. So...I am finally going to see him.
I have MRI/MRA that shows the constriction of both arterial and nerve band in
the brachial plexus on both sides, the left side being worse even though I feel
more symptomatic on the right because I use it more often being right-handed.
My question is if anyone has seen this Dr and what they thought of him?
I've gone back and forth regarding how I feel about surgery but my arms are so
bad right now and I can hardly be on the computer, can't work, can hardly keep
up with any household stuff, etc, etc. as you all know too well. I know the
risks but it helps hearing others' experiences with surgery as well.
Thanks!
Nidia
--
Injured July,2002: 2 door size boxes weighing 120 pounds fell against my back.
Thoracic strain, lumbar strain, did PT and acupuncture, R arm began to hurt
1/03, switched Dr's, MRI April, 2003 showed tendonitis in R shoulder/rotator
cuff, slight bulge in neck, changed Dr.'s again after Dr couldn't offer any
treatment but meds, off work May/03, some relief from osteopathic manipulations,
I was feeling about the best that I had since the injury until Dr. got a crush
on me and had to seek new Dr., worker's comp took 4 months to authorize new Dr.,
got increasingly worse, Dr. McClure diagnosed TOS, had MRI/MRA Nov/04, cervical
epidural Nov/04, s/x on R shoulder 1/05, epidural 3/05, met with Dr. Avery 8/05
& he wanted me to rule out PT before doing surgery. PT very painful and not
helpful. Met w/ Dr. Avery again 3/06 and working on authorization for s/x,
struggling with severe migraines as well since injury.

Hi Jstmee, and welcome to Sarcoidosis Support. I'm sorry if you have Sarcoidosis but I am glad you found us. This is a group of wonderful caring people. If you need support, understanding and knowledge, you have found it here. "Understanding", because we all have this disease and know what you are going through, "support" because we all need it and "knowledge" because we are all so willing to share what we know with one another.
Please post us and introduce yourself and tell us a little bit about what is going on with you. We're looking forward to getting to know you and welcome you into our "family". I think you will enjoy getting to know us too.
Have a great 4th of July weekend.

Betty Thomas - List Mom
bbutterfly@...

Betty
bbutterfly@...

YOU ARE AWESOME!!!!

I am getting old......waaaaaaaaaaaaa.....51 years...LOL

much love celeste

Hello there,
I developed a problem with my left arm when I was a rower in college. I was told
it could be
TOS, but then got sent around to a couple of different doctors that sent me home
with no
answer. Does this sound right? My left arm swells drastically until I can't bend
it (mostly the
upper arm, but the lower arm swells also). My arm feels like someone tightened a
blood-
pressure meter too tight, but feels like a rubber tire to the touch. At it's
worst, it turns bright
purple and gets really cold. It definitely hurts. I also occasionally wake up to
a swollen,
painful arm in the middle of the night. After an incredibly painful experience
rowing at
Pac10's, I took a few years off of any sort of arm-involved exercise. I've
recently taken up
canoeing, and get moderate (alright, it's pretty bad) pain and swelling at each
practice. I can
live with that, because I love being on the water.
Besides quitting canoeing, what can I do to minimize swelling and pain?
Should ibuprofrin help?
What stretches should help?
Thanks.

Thank you Celeste.

She is such an incredible lady... this is her 3rd go round with oral cancer, and she has already gone through esophageal and skin cancers on her face 2 times. A real fighter, but the fight is gone from her now. This one would have required a very large neck dissection and removal of most of her lower jaw and left cheek. I just pray that however long she has left can be made comfortable and with some measure of joy and love surrounding her here at home.

Getting old is NOT easy!

Hugs, Heidi

Hi Becky, I'm so sorry to hear about all the problems you are having. All the stress it causes sure doesn't help. I hope what your doctor has planned for you will give you real relief. I will continue to pray for you and send you my love,

Betty
bbutterfly@...

hello all,
wishing everyone a happy 4th..

I seen my family Dr. yesterday due to the unbearable pain in my left hand all the way to the back of my left shoulder. He wanted me to have p.t. and injections in my neck.But, since I can't tolerate the traction. he wants me too have the injections done in my neck. say's that my problem is due to my upper spine area. and muscles also. and wants me to go too a pain clinic .
the only probable with that is the pain clinic here is leaving this area. and the closes two are 90 miles away.
he is making arrangements for me now.
also have to go back to the gyn Dr. next week my bladder surgery is going down hill. and if he can't help me. my family Dr. is sending me to a urologist.(?)
so now i just try to rest (when able have the 2-4-6-yrs old grand kids here) and wait.
my son's wife up and left again with the little girl (1 yr. old) and we haven't heard from her since last Sunday. and we don't know where she is at. her mother hasn't heard from her either. so just more stress going on.

But,your all in my heart and prayers each day.
becky_sunlight1956

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

&

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

Cathy,
Just wanted to tell ya that I really appreciate this group!
Girlymom
Cathy <cathyannee@...
Hello Group: I have not received any emails lately so I came in here
to check and see what is going on. A number of members seem to have
had their email bounced back. Therefore, I will delete some of these
people who seem to be have been totally gone for some time. If you
have not received any email lately you might recheck your email status
that you set upon joining. Any problems; email me.
SPONSORED LINKS
Thoracic outlet syndrome Repetitive strain injury

Hello Group: I have not received any emails lately so I came in here
to check and see what is going on. A number of members seem to have
had their email bounced back. Therefore, I will delete some of these
people who seem to be have been totally gone for some time. If you
have not received any email lately you might recheck your email status
that you set upon joining. Any problems; email me.

Bailey seems to have problems in the heat but the humidity really poses problems to her. Right now, here in our area in NC, there has been a little heat wave and the weather forcasters say that the air quality is unhealthy for those with breathing problems and chronic diseases. So, we have basically kept Bailey inside, in the air conditioning until later in the evening when it cools down a little.

When we have family gatherings outside in the heat, it usually wears Bailey out. Example being this past Father's Day. We had a celebration with my parents and my family on the Saturday night before Father's Day on Sunday. It was outside and it was hot and muggy. I have several nieces and a nephew that are all young and they ran all over the place, just playing. Bailey was right there with them, playing until at least dark. On Sunday, we had to wake her up for church and then she went back to sleep on the way home from church. We then had to wake her up at 5 pm for another family function (we skipped out on the one at lunch because she needed to rest). Then she fell asleep on the way home from that one as well. She slept a lot that day to catch up just from being out in the weather, running around, for about 3 hours the night before.

Basically, what I am saying is that yes, the heat does bother Bailey. When we do go to functions in the heat and humidity, we just watch for signs from her (she's two, so we watch the way she acts) that she is starting to tire or that the heat is getting to her. Then we leave and get her to a cooler place.

Hope this was helpful!

Melissa

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

~Psalm 31:24~

[LINK]

PEGGY I went to this site below...(your post below) and found NOTHING
about TOS Please tell me wht you found about Dr's..looking in Missouri
What you might try is to visit the TOS forum at www.braintalkcommunities.com
There is a section for people with TOS. They have a list of doctors in
there and there may be one for Kentucky.
It is a large forum and if you don't see anything on the list, you can post
the question in there and may get some help.
Good Luck. I know its hard.
Peggy

try this link instead:
http://brain.hastypastry.net/forums/forumdisplay.php?f=249

Dear Heidi,

I was very sorry to hear that your mother in law has oral cancer. My mom died of ovarian cancer many years ago and I also lost a dear friend to oral cancer. Hang in.....I will be keeping you and Sean and your family in my prayers... I know the extra stress cannot be easy for you.....

much love celeste

Hi Bill,

Have a great time at the conference. I wish we could have gotten to go to one of these but my daughters condition always prevents us from traveling.

Thank you for sharing the information about Boston. The Cardiologist my daughter see's in Burlington, Vermont is going to contact Dr. Micheal Landzburg.....I am not sure of the spelling....he is suppossed to be very good.

I liked the fact that you shared the info about Shannon's ph spec being willing to try trial drugs. This was just what Noel...our daughters'.....card was going to check into.

Your description of the roads down there was funny...I live in upstate NY and before we lived here we did have cows and lived on a farm. I will remember what you said and If we do have to come down maybe you could give me some information on how to get where we have to go...it usually helps to speak with someone who knows the area...

thanks for sharing and hope you all have a great time at the conference....celeste...Noels mom...22 years.

Tammy and Parker, Thank you for sharing Parker's great news. I am so happy for you. It is refreshing to read about your miracle guys improvements. With love from Donna, Kari's Mom.
I hope it is okay to post the results of Parker's latest echo here.
Parker is now 18 months old, weighs almost 16 pounds has severe OSA
with his trachea, and a broncial tube collapsing when he sleeps. His
lungs are underdeveloped and he has chronic lung disease. Parker was
born with an extra chromosome on his 21st pair as well. He is on 02
24/7 and a cpap at night.
He results were:
NO tricuspid leak. This leak was so bad that you could hear a clicking
noise when you were tying to listen to his heart. No leak what so
ever. nada.
His resting peak was 13....down from before, but normal is 3-4
His active peak was 40.......when he was in the hospital last winter
with a virus it was over 70. Normal is 25.
EKG - finally showed something good! It suggested that his right heart
is smaller and/or has less muscle making it easier to pump blood to his
lungs.
His BNP which at one time was over 1700 is now at 94 which is normal.
His heart is able to get the job done with a normal amount of effort
now.
Parker's card was just bursting at the seams with happiness. He feels
that as Parker matures and we get the cpap issues taken care of and his
airway and lung issues taken care of that we just might be able to get
his numbers to a point where it won't be so critical for him and
(praying here with all my heart) we might be able to have him with us
for a long time. But I know how tricky this disease can be. His
numbers need to get to a point where they are more stable.
Parker has TERRIBLE allergies, as do the rest of my clan and I. This
leads to chronic sinus infections. His is on singular, simply saline,
xeopenex, pulmicort, etc.
Now I know that Parker is NO where out of the woods. But this
continues the downward trend he was experienceing with his numbers
before the virus that almost killed him.
His ASD is still squirting blood, so this may need to be addressed one
day as well. They will make that decision when he is 3, unless it
starts acting up more.
He is constantly congested in his nose. This mucks with his sats. and
how well his cpap works. His cpap makes a WORLD of difference. He goes
in on July 5 for a head CT to see if his sinuses are impacted which
they think they are. They are thinking of tubing him because of having
to put him so totally under as a 'just to be safe' measure. Ah...yet
another valium moment for me. =:0
Parker is on viagra, 1/4 of a tablet of the lowest dose of tracleer a
day (has been on this for 4 months), lasix, digoxin. They are weaning
him off his aldactone and didn't raise any of his other meds even
though he had a two pound weight increase in the last few weeks. yea!
Anyway, we can't begin to tell you how thankful for even for just a
little good news.
Thanks!
Tammy and Parker
www.parkerhodson.blogspot.com

Has anyone had any problems with their PH kids when the weather gets
hot? We have a family reunion coming up Labor Day weekend and the
place where it's hosted at is Kerman, California...it's hot!!! So I
hear from my cousins that live in the Fresno area. We live in the Bay
Area, and our hot is not like their hot.
Barbara (Amy's mom)

Hi Kay, thanks for sending in the information on the Indiana conference. I sure wish I could go to it. I'm sure it will be wonderful and helpful to all. Please take notes and report back to us. Those of us who can't be there can share in it by reading what you have to say.

I checked out the web site and was pleased to see that my doctor wrote the description of what Sarc is. The web site is great. Someone has worked very hard on it. Did you do that Kay?

Thankyou for sharing all this with us and keep us informed on everything.

Hugs,

Betty
bbutterfly@...

I hope it is okay to post the results of Parker's latest echo here.
Parker is now 18 months old, weighs almost 16 pounds has severe OSA
with his trachea, and a broncial tube collapsing when he sleeps. His
lungs are underdeveloped and he has chronic lung disease. Parker was
born with an extra chromosome on his 21st pair as well. He is on 02
24/7 and a cpap at night.
He results were:
NO tricuspid leak. This leak was so bad that you could hear a clicking
noise when you were tying to listen to his heart. No leak what so
ever. nada.
His resting peak was 13....down from before, but normal is 3-4
His active peak was 40.......when he was in the hospital last winter
with a virus it was over 70. Normal is 25.
EKG - finally showed something good! It suggested that his right heart
is smaller and/or has less muscle making it easier to pump blood to his
lungs.
His BNP which at one time was over 1700 is now at 94 which is normal.
His heart is able to get the job done with a normal amount of effort
now.
Parker's card was just bursting at the seams with happiness. He feels
that as Parker matures and we get the cpap issues taken care of and his
airway and lung issues taken care of that we just might be able to get
his numbers to a point where it won't be so critical for him and
(praying here with all my heart) we might be able to have him with us
for a long time. But I know how tricky this disease can be. His
numbers need to get to a point where they are more stable.
Parker has TERRIBLE allergies, as do the rest of my clan and I. This
leads to chronic sinus infections. His is on singular, simply saline,
xeopenex, pulmicort, etc.
Now I know that Parker is NO where out of the woods. But this
continues the downward trend he was experienceing with his numbers
before the virus that almost killed him.
His ASD is still squirting blood, so this may need to be addressed one
day as well. They will make that decision when he is 3, unless it
starts acting up more.
He is constantly congested in his nose. This mucks with his sats. and
how well his cpap works. His cpap makes a WORLD of difference. He goes
in on July 5 for a head CT to see if his sinuses are impacted which
they think they are. They are thinking of tubing him because of having
to put him so totally under as a 'just to be safe' measure. Ah...yet
another valium moment for me. =:0
Parker is on viagra, 1/4 of a tablet of the lowest dose of tracleer a
day (has been on this for 4 months), lasix, digoxin. They are weaning
him off his aldactone and didn't raise any of his other meds even
though he had a two pound weight increase in the last few weeks. yea!
Anyway, we can't begin to tell you how thankful for even for just a
little good news.
Thanks!
Tammy and Parker
www.parkerhodson.blogspot.com

I was just checking my e-mail as we are packing to leave for the PH conference tomorrow morning. I did want to let people know that my daughter Shannon see the PH Specialist at Children's Hospital Boston. Her name is Mary Mullen. My daughter has received excellent care at Children's Hospital Boston and I would highly recommend her and the hospital to anyone. Since Dr. Mullen is a cardiologist and one of the areas Children's Hospital Boston is known worldwide for is cardiology she usually can make things happen if other specialties area needed for her patients. The only thing I would caution people on she does not believe in trying the latest (trial drugs) just to see if they will work. On the other hand she is very quick to change meds/therapies if the therapy her patient is on does not seem to be working.

Having lived in the Boston area all my life I will agree that traffic in Boston is terrible. This is especially true if you are trying to reach the Childrens when the Red Sox, Go Sox, are playing. Fenway Park is about a mile and a half from Children's. Heidi should you return to Boston just remember it is often stated that the ro