Hi everyone, im new
 

been debating wether or not its a good idea to join up on a forum but i am really looking for support and people to talk to about tos, been in pain and seeking help since 2001, im at last resorts here and contemplating surgery (if im told it could help), i have a bunch of questions and would like to talk to people who have really been thru what i go thru.
long story short
currently on w/c and waiting for authorizaton to see surgeon for rexamination and to possibley have surgery, havent seen him since 2006.
first time he sent me home to have other tests to rule out some other things and have since had mri that shows narrow scalene triangle?? (unsure if this is relavant) but basically i have good and bad days. using my arms and hands gives me flare ups and so does rain and cold damp weather which gives me crazy burning pain in my neck down into chest, arms and hands,
i have a high sed rate, and the only things that help me are numbing myself in freezing cold water, ice packs and 800mg of motrin at least twice a day as many as 4 times a day
i am completely unable to work, drive, and have to limit myself in all sorts of activities.
i am married, no kids yet 28 years old and i just want my life back. or at least get enough help to be able to live with this and help out my husband. but most important, to the both of us is to be able to have children. on most days i cant even hold a baby for minute. nevermind do all the things that come with caring for an infant..would love to be able to do things without help if possible...

i understand i may not be able to but im not ready to throw in the towel yet

ive signed up on braintalks also, and was given a bunch of useful websites to check out, and id really love to chat with people i can relate to.

thanks for taking the time to read this, id love to hear from you!

welcome
 

Hi mrscalmplexus,
welcome to our little home! Sorry you are here but we are a great bunch of people always happy to help out others in our predicament! We can answer questions and give lots of support!!

I hope you find yourself welcome here and that you don't ever feel afraid to ask questions or any other thing you need. THERE ARE NO DUMB QUESTIONS EVER EVER EVER!!!!!! So ask away.

No as for your life back.......I can't speak for all but i injured myself at work (nurse) lifted a patient up from a toilet and wrecked my neck back and shoulder....TOS! So had surgery (also blessed with cervical ribs) on R side my effected side. I was doing really well after surgery which was hellish to say the least...pain wise...but it gradually calmed down and I was able to unload the diswasher water the plants and other such tasks I could not do with my right arm before! I was amazed....then I went to Physio and they RUINED ALL THAT THE SURGEON HAD DONE!!!!!!!

Be very careful who you choose to go to for surgery they MUST do more than a few tos surgeries a year and know everything about tos and not in the least make you feel uncomfortable. They must know it all!!!! You need to have lined up a great rehab team who specilize in tos and know what they are doing....mine didn't and had me lifting weights...HUGE NO NO and on the treadmill....VERY BAD IDEA!!!!! so do your research before you even consider having surgery.

there is a sticky at the top of our forum that will give you good surgeons in your area....I am in Canada so a little different up here.....I am on W/c and will be for the rest of my life.....I am less than functional!! I can't clean can't do much...have to have lots of rest less I flare up again.....breaks and timing things is key for me. (not that I do it all the time!!)

I don't think I'll ever work agian and even after my surgery when I was feeling great for the six months before physio my surgeon told me I'd never work again as a nurse.....so it is imprortant to know what your expectations going in are.....you may be able to lessen your pain.....but it depends on your type of tos....I had vascular and neuro...now mostly neurogenic tos!!!!!

Lots of pros and cons and some will say yes to it and some will say no....it depends on what you will want your outcome to be. and how good your surgeon is. and how good your PT is.

I hope you are in a good populated area where you have access to good doctors (not just the ones you go to with w/c as they tend to NOT be on YOUR side....money money money!!)

hope some of this helps!!! please feel free to ask questions and hopefully more of us will answer you and let you know what their own experiences are!

take care and welcome again!!!!

love and hugs,
Victoria
34 yr old nurse......on premenant disability.....injured at age 27!!!
getting married this year....kids....unlikely due to soooooo many medications and not likely to get off of them to have a child and then never mind the after care....my dog is a chore!!! but love him to bits!!

ttys!:hug::hug:

Hi,

Welcome to your community of good fellowship.

(My accident was in 2000)

We do understand. It's not easy being a TOSer. We didn't get a choice. You look okay but things don't work right. You still have responsibilities and nobody can read your mind and do it for you. It's a tough way of life.

Each person is different. I am just the opposite. I need warm/heat, fleece warm on my arms, even in the summertime. I look like a dork. I have to buy summer clothes with full length sleeves. I went to a T ball game with a sweater on, felt out of place when everyone else had T-shirts on... oh, well.

There's a lot of previous posts with helpful info. I'll grab a few for you, for starters.

This was a thread started for "What makes you feel more comfortable." It's a 7 page thread. I copied all seven for you. some good tips in here. You can click on the first one and go from page to page, all 7 within the first page of the thread.

http://neurotalk.psychcentral.com/thread43297.html
http://neurotalk.psychcentral.com/thread43297-2.html
http://neurotalk.psychcentral.com/thread43297-3.html
http://neurotalk.psychcentral.com/thread43297-4.html
http://neurotalk.psychcentral.com/thread43297-5.html
http://neurotalk.psychcentral.com/thread43297-6.html
http://neurotalk.psychcentral.com/thread43297-6.html
http://neurotalk.psychcentral.com/thread43297-7.html

Here's another thread.

http://neurotalk.psychcentral.com/sh...225#post128225

You'll have to do some research before you can decide what's right for you. Unfortunately, we don't have good options. Nothing's guaranteed here. TOS is tricky. Hard to treat. I'm angry at a lot of my treaters. I'm working on that. I guess I shouldn't feel so hard toward them since TOS is so hard to treat but they didn't have to make me feel like... well, I cry a lot. So I don't know what all you've been through trying to get help, but it don't sound like you've had much luck, either.

I did not have surgery. I had other areas, neck, back, right leg that caused me additional pains and problems. My low back caused me to be really miserable. I've lived through 7 years of hell, literally. These last two haven't been so bad, '09 being pretty good, actually. I hold my breath and pray I continue to improve.

Hang in there. We'll try to help you figure things out. Just ask if you have trouble getting around on the forum.

We're here for you.

Welcome to our Group!

:Wave-Hello:
Anne

Wow, thanks you guys!!
 

:)
thank you all for the warm welcome i reallly appreciate it! its so refreshing
im sorry you all have to be here as well, its tricky business, this tos!!

its so great to know I have people with whom i can relate too. and talk about it,because as much as they try, or say they understand, the people around me really dont know..... like you say, they think i look fine, or look like im feeling fine just because im smiling or laughing.

i went thorough a rough period of like two years of really being depressed because i was missing out and couldnt convey to others what i was feeling physically, but im doing much better now, and really dont want to live that way because your right, "it is what it is" .............the only thing i can do is go it one bit at a time.
gosh thank you so much you guys, for the info, for sharing your experience and for the advice! and for the hugs!!!
i really believe im on the right track now.

God bless you all!:cool:

Cyber friends are great ! ! ! ! !
 

Here's another great link to go through

http://neurotalk.psychcentral.com/sh...140#post473140

It certainly helped me when I could understand whats and whys. I hope you find some relief. :hug:

Hi there!!
 

Hi there!! I have had a rib resect on both the right and left side back in 1989 and 1990 then a scalenotomy and they cleaned out the triangle again. I don't know where my life would be if I hadn't had the surgery!! I would go for it!! It can't get much worse and they are understanding the problem much better than when I had the surgery..i was just a teenager then!! My dad was a wonderful orthopedic surgeon and recommended I have it done..I couldn't enjoy anything anymore.I still have flare ups with weather and overuse but it's so much better! Let me know if you have any questions. I will say, the surgery is awful! Erika

Hi and welcome to the group.
:grouphug:

you guys are great! and thanks erika, that is super encouraging!
yeah im not looking forward to the pain from surgery
i had two surgeries already, with a hand surgeon, at first they though i had carpal tunnel, that one wasnt so bad but, when the symptoms didnt go away the same doc said may be ulnar nerve palsy, so i went in for nerve transpostiion and once he cut he said he didnt see a problem in there, but that was suuuuuuuuuuper painful. then he passed me on to thoracic surgeon, suggestin tos and i was in no hurry then to try another surgery especially when they were talkign removin body parts, lol, but now 6 yrs later i understand taht its a space issue,

ive been thinking about this surgery for 3 yrs and i think this is the right decision. i got my referal, and w.c is going to send my file over to the surgeon to see what he wants to do, and then we take it from there. not sure how long this all will take. but,

hey erika, how long after surgery were you able to function, fairly normally, like say do something like being a bridesmaid..i have to factor that into my decision making as to how far out to schedule it. my mom is getting married the end of october. im hoping i can wait until january so my hubby can come with me. and that will be after teh wedding..

Actual PD cure -- lost to the annals of science?
 

Hi Every One,
I've had Parkinsons 6 years and learned about the 1300 patients 1984-2002 receiving scalenotomy surgeries done by Dr. Fernandez Noda and his team in Hato Del Rey, Puerto Rico. With a 90.9% partial or complete success rate (96% when "bilateral"), it is both tragic and very upsetting to me in a deeply personal way that their work neither well known nor recognized by conventional wisdom.
If you or anyone out there can advise of who besides Dr. Castillo in Madrid does this procedure (Hato del Rey community hospital is closed now), please share this info with me, with all.
I've contacted the MJFox 2x and Muhammad Ali Fdn 1x with a detailed report on scalenotomies by Noda et al, with no reply at all. Please help.
Matthew Van Slyke
Chicagoland, USA