[JennyHurts]

I haven't been on these boards in years, and I'm shocked at the number of you who are now having surgery to correct TOS... and QUICKLY after being diagnosed! It's incredible!

I want to know what kind of insurance you have, and how on EARTH you've convinced doctors that there is something wrong with you, gotten an actual diagnosis in a timely fashion, AND gotten scheduled for surgery with actual people who know what to do for you... And it seems like most of you have done that within a year?? That's INCREDIBLE.

Blows my mind. AND it ****** me off. 10 years ago when UCLA diagnosed me, I'm convinced that had they surgically removed my problem THEN, I would have been WAAAAAAAY better off NOW. Instead, I've suffered, and suffered, and suffered through 10 WASTED years of my young adult life, afraid to have children, broke from all the money I spend on chiropractors, osteopaths, massage, etc., and here I am, ten years later, thinking what a stupid waste of a life this has been, all because nobody was willing to do anything to fix this when they actually had a good chance to fix it. Now I'm so incredibly screwed up, they could probably never fix it, and I'm just going to die a slow TOS death for the rest of my life... and I'm only 32 years old!! Seriously, people!!

HOW ARE YOU PEOPLE GETTING THIS DONE?

I had a neck sprain TOS flare up so bad 3 months ago I was nearly paralyzed again, and I can't even get a damn MRI of my neck. AND I can't get rid of it. They just let me suffer, suffer, suffer... Health insurance was SO much better 10 years ago when I had my bp mri - I can't even imagine EVER getting that scan approved again... so HOW ARE YOU PEOPLE GETTING SURGERY? It seems IMPOSSIBLE to me.

At this point, I'm ready to perform a self-inflicted rib resection. At least a self-inflicted scalene block - that just takes a needle and some lidocaine, right? How about a home-made catheter that just keeps lidocaine constantly pumping into my scalenes??? I could probably honestly manage doing that to myself. Anything is better than thinking about living with this for another 10 years, and it just getting worse, and worse, and nobody being willing to do anything about it. My current insurance doctors are a bunch of CLOWNS who won't even acknowledge the fact that I have a serious problem.

My advice: If you have the chance to get this surgically corrected, don't even hesitate. I'd rather have a surgery-gone-bad and suffer immediately, than die a slow, slow TOS death like I have. Honestly, DO IT. Or 10 years from now, you'll remember reading this post from me, and you'll be regretting not listening to me. And if your surgery does have complications, just remember that it wouldn't be any better if you waited or decided NOT to have surgery. Your life would just suck slowly, over time, anyway. But AT LEAST you've had the opportunity to TRY to fix it.

My long-time friends who haven't had surgery - is anyone with me on this? Are any of you ******, too?

I used to be the positive one, right? I'm SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO OOOOOOdone with this now!

ARGH!

~ Jenny

[boytos]

Please if you have nerve issue try heparin injection OR :

Progesterone injection

OR

EPO injection


See here :


http://www.doctorellis.com/Lecture.html
http://www.doctorellis.com/TOS_neurogenic.html
http://thejns.org/doi/pdf/10.3171/SPI/2008/8/4/347


And maybe here :


http://neurotalk.psychcentral.com/thread136033.html

[astern]

Hi Jenny! Glad to see you back on the Forum

Just a thought... Maybe there are enough of us now 'out there' talking up the same symptoms, referring to the same surgeons, getting (finally) the same diagnosis...

...maybe we are making ripples thru the medical community?

We can only hope, right?
Anne

[Jomar]

Jenny , I'm so sorry things are looking so bad right now for you.

There's always a chance that something new will come into play in the future, so hang on to that thought.

All I can say it I hope that anyone reading this now - with even minor symptoms of RSIs or TOS like symptoms will see how bad it can get and take positive action for their own heath right away and make life /work changes before it becomes a forever condition.

No job or any amount of income is really worth messing your body up for the rest of your life.

[tied]

Jen if I was convinced I have TOS I would definitely consider surgery. I don't think I will ever get enough diagnostics to know for sure. But I am doing great considering my injuries. Many more than just the possible TOS. What I don't get is how people have enough time to run through the doctor gerbil wheel. I have a life outside of all these injuries and it includes a job I love, overtime, education, pets, yards, banjo, yoga, and time for my 90 year old dad. In a new job I have to be almost dead to take time off before 6 month probation. (I have issues about job abandonment).

It is good to hear from you. I may come to regret my conservative approach but I was not exactly young when this started like you are. I am still a great believer in yoga with appropriate modifications. I did some PT for a hip fracture they missed 10 years ago and thought the PT was worthless compared to yoga. I also love to swim a modified crawl where my arms never come out of the water. The cool water in the pool does wonders for my whole body.

My insurance is really bad now too. I am on something called an HSA and my copays run from $100 to $300 lately. When I hit my out of pocket it will get better but in January it runs back to zero again. My suffering will probably come when I am jobless or forced into retirement and have no money for medical. If only there were icefloes in the Bay of Galveston when that day comes.

[TOS Gerl]

Hi Jenny,

Sorry to hear about your horror story! I'm almost 2 years in, (having surgery week of Nov 15 not sure what day yet) For me it was mt shoulder surgeon, after two should surgery's and my torn ligaments fixed, he referred me to a TOS doctor to have a work up as he thought that I had the symptoms..
Its been HELL getting work comp to pay for it, however its approved.

I know how you feel, I have had weeks and weeks of wanting to cut my won arm off, and wanting to dig my own rib out. I'm the same age as you and can completely understand.... I failed all non surgical treatment for a year..

Reading your story and other some how I feel blessed, that it only took 2 years. 1 year to diagnose.

Maybe it is the area you live? maybe they do not know much? I could not even imagine battling this with my private insurance.

I did have my rib and C2 adjusted by a Ciro and that took my symptoms away for a few days... im sure you have tried everything, and I hear you on the scalene muscles.... I want to do the same to mine. I had kids before I had TOS, however If I had TOS first, I understand, as I would NOT have had children. Wish you the nest of luck. Do they really just don't want to listen to you or you tell them what is wrong with you?

[OzKira]

Originally Posted by JennyHurts

I haven't been on these boards in years, and I'm shocked at the number of you who are now having surgery to correct TOS... and QUICKLY after being diagnosed! It's incredible!

I want to know what kind of insurance you have, and how on EARTH you've convinced doctors that there is something wrong with you, gotten an actual diagnosis in a timely fashion, AND gotten scheduled for surgery with actual people who know what to do for you... And it seems like most of you have done that within a year?? That's INCREDIBLE.

Blows my mind. AND it ****** me off. 10 years ago when UCLA diagnosed me, I'm convinced that had they surgically removed my problem THEN, I would have been WAAAAAAAY better off NOW. Instead, I've suffered, and suffered, and suffered through 10 WASTED years of my young adult life, afraid to have children, broke from all the money I spend on chiropractors, osteopaths, massage, etc., and here I am, ten years later, thinking what a stupid waste of a life this has been, all because nobody was willing to do anything to fix this when they actually had a good chance to fix it. Now I'm so incredibly screwed up, they could probably never fix it, and I'm just going to die a slow TOS death for the rest of my life... and I'm only 32 years old!! Seriously, people!!

HOW ARE YOU PEOPLE GETTING THIS DONE?

I had a neck sprain TOS flare up so bad 3 months ago I was nearly paralyzed again, and I can't even get a damn MRI of my neck. AND I can't get rid of it. They just let me suffer, suffer, suffer... Health insurance was SO much better 10 years ago when I had my bp mri - I can't even imagine EVER getting that scan approved again... so HOW ARE YOU PEOPLE GETTING SURGERY? It seems IMPOSSIBLE to me.

At this point, I'm ready to perform a self-inflicted rib resection. At least a self-inflicted scalene block - that just takes a needle and some lidocaine, right? How about a home-made catheter that just keeps lidocaine constantly pumping into my scalenes??? I could probably honestly manage doing that to myself. Anything is better than thinking about living with this for another 10 years, and it just getting worse, and worse, and nobody being willing to do anything about it. My current insurance doctors are a bunch of CLOWNS who won't even acknowledge the fact that I have a serious problem.

My advice: If you have the chance to get this surgically corrected, don't even hesitate. I'd rather have a surgery-gone-bad and suffer immediately, than die a slow, slow TOS death like I have. Honestly, DO IT. Or 10 years from now, you'll remember reading this post from me, and you'll be regretting not listening to me. And if your surgery does have complications, just remember that it wouldn't be any better if you waited or decided NOT to have surgery. Your life would just suck slowly, over time, anyway. But AT LEAST you've had the opportunity to TRY to fix it.

My long-time friends who haven't had surgery - is anyone with me on this? Are any of you ******, too?

I used to be the positive one, right? I'm SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO OOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO OOOOOOdone with this now!

ARGH!

~ Jenny

Hi Jenny

I can't imagine what you are going through after soooo long. I really feel for you.

I have just been diagnosed with TOS and my surgeon isn't that easy as far as doing the surgery to remove the first rib. Although I have had the symtoms for years it's only now I have diagnosis.

I think I may be sitting here watching so many have the surgery as my surgeon said that worse case with surgery is nerve damage to nerves in the arms and he is very reluctant. I can't work because of my symtoms and pray that there was an easier way than surgery.

[rbn4jsus]

Over the years I have tried SO many things to find releif from TOS pain...
Physical therapy at 4 different locatins-none of them educated in TOS or what is appropriate for us...
Chiropractic, several different ones...
pilows,
massage
heat
ice
specialists
trigger point injections
trigger point massage-with a therea cane
I have all the usual props for someone dealing with thi pain issue long-term...
and yet!
once my son went through a growth spurt in 10th grade and the dr xrayed him and found he has cervical ribs-he was having a resection within 3 months!
My daughters symptoms began the next summer...so I held off my own resection till my kids were heald.
Just from our experience-rib resection has not been a cure all.
Not at all.
We still have to watch it with our arms, and we still ache, and its not perfect-better, but we still look for ways to cope with ongoing pain.
I hope you find the answers you need!!!!
My heart goes out to you!!

[(Broken Wings)]

Hey JennyHurts!!!!!!

I do know where you're coming from. Dont give up here, ok?

I'm not exactly perfect but you can improve, hopefully.

I know it's bad. I know you're suffering beyond what a human should have to endure. 7 and 1/2 years of hell, HELL, I've been there.

I did find PT to be helpful, aqua therapy, yoga, relaxation techniques/belly breathing, botox injections to my scalenes, epidurals X3 for my cervical problems, Kinesio Tape helped some, Lidoderm 5% patches, Miracle Ball Set and other things I'm sure I dont want to remember right now. The LED and infrared light therapy pads helped me the most. I can do things I had long gave up on being able to do.

Please try something. Give it time. I still treat with the LED/infrared pads, but I am sooooooooooooooooooooooooooooooooooooooooooooooooo oooooooooooooooooooooooooooooooooooooooooooooooooo oooooooooo much better off to have found them. Here's a link for them, or I can also sell them, even though I've not been successful, I do want to get that option out to you and others. My heart is in it because it helped me. I do not need bilateral rib resection or scalene spliting and fraying, and also pecs to address since I've been treating with the lights. before the lights, ??????????????????

http://www.healthlightz.com/ Edna Ness would be my upline. She's a wonderful, caring and knowledgable person. she has clinical experience using these pads. There are other cheaper, but I do know these helped me.

Also there's a massage therapist I meet at a seminar this year. She has a great program. Here's the link: PLEASE LOOK INTO THIS - http://www.julstro.com/ I'm doing much better these days so i'm not sure if I'm going to order it or not. She was marvelous. It is very helpful. I meant to get on here with that information before now. Just been working too hard, mother having heart attacks, and depression, with all my other health concerns to balance, it's just not easy.

Nobody said life would be EASY!

Jo*mar just had an incredible IP book she posted.

Here's a big hug for you from all of us. We do understand.

Some improvement is better than worsening. I have found Bayer A.M., Advil Liquigels, and Tylenol P.M. to be most helpful. Still use with caution. It's still medicine and your body reacts to it.

Jo*mar's IP book has a lot of good info for changes we should be willing to make to feel some better.

I pray you find some peace and comfort today.