How "Bad" is Your TOS?

343v343 · 10-26-2011, 02:50 PM

Quote:

Originally Posted by MarcS

Yea, the burning really sucks - i hope the Cymbalta will take the edge off.

Will be curious how the other anti depressant side effects manifest (or hopefully don't). I believe the Cymbalata is typically for Diabetic Neuropathy. But there are also typical side affects with SSRI's like sexual side effects, weight gain, and *oddly enough -- muscle pain, spasms, and tremors. Did you have any weird ones with Lyrica?

Really interesting about the NCV finding issues. I wish my neuro would have zapped me in more places besides neck and arms. *Not that I would have any really any more of a strategy.

What sort of conservative care are you doing for stretches / muscles, etc. Have you ruled out vascular involvement? How did you get TOS?

SD38 · 10-26-2011, 03:24 PM

Quote:

Originally Posted by MarcS

I've had light symptoms for about 2 years, then this last year symptoms increased, why i dont know but for 2 years my condition was treated as CTS or RTS.

A few months prior to the positive NCV, a negative NCV came back - i think the neurologist's experience and expertise reallly plays a role when it comes to EMG's and NCV's. I was told that he was one of the bests in the country - if that is true or not, i don't know, but he used to train students in the use of the NCV software and more.

The guy who made the positive NCV was much more thorough, placing the electrodes on my neck, armpit and collarbone area, he used special rulers to measure the length of the nerve and after the whole deal was over, he said he needed some time to do some number crunching.

Yea, the burning really sucks - i hope the Cymbalta will take the edge off. Regarding the fasciculations, you should check out the video i made of my hand: http://www.youtube.com/watch?v=2T47I...EB1B03CB6D5FAD

As far as i know, fasciculations are usually a sign of nerve irritation, whether they then lead to atrophy i dont know. I also have normal or close to, strentgh in my hands. Next month i have an app. with a neurologist who hopefully is able to answer some questions.

I still work, work at a kindergarden 22 hours a week. Glad to still have a job, however it is quite draining to be in constant pain.

Even though i don't have a mortgage or anything (im only 21) i can still relate to your thoughts, it is important to keep your hopes up. I once saw a study on kids with cancer - the chance that they beat the sickness was much higher when they had regular visits by a hospital clown. I guess you psyche plays a big role in your physical healing.

I've chosen to upload my NCV here, some of it is in danish, however i will try to translate.

@JoMar --> The tests show that there's no impingement in my hands or elbows. Tinell's test was also negative and has always been.

If you have anymore questions, feel free to ask.

My NCV:
http://imageshack.us/g/259/dsc3512g.jpg/

Hi MarcS,
I think you're right about psyche playing a BIG role. Seeing children in need and the courage that they show really does make you step back and assess your own outlook on things.
When you are low you focus more on the pain and that in turn seems to intensify it!
I'm trying sooooooo hard to break this vicious cycle. I've been hit really hard by anxiety/depression and I now know that its now or never!!!!!!!

I had my 1st visit with a therapist today to undertake CBT. I'm forcing myself to try new things. I'm also going to attempt Tai Chi and join social groups. OK I know its not like the rush of being at the gym ( which I miss desperately ) but thats about my limit at the moment and the quicker I get my head used to the fact than the quicker I can accept this life of limitations. I am sad that I can't do all that I used to but I'm here, I have a beautiful family who support me..... I owe it to them to at least try my best.
Yes its difficult to smile when you are hurting so surround yourself with joyous things...... It's all so easy to withdraw yourself from life and focus on the negatives. I do it myself ( too much )!!!!!
You have to teach yourself to live again.... but this time more gently! I want to make the most of my life, however different it may now be.

Best wishes to you all

SD38

343v343 · 10-26-2011, 04:24 PM

Quote:

Originally Posted by SD38

I have a beautiful family who support me..... I owe it to them to at least try my best.

Well put SD38. How is your healing coming. When (hopefully never, but) will you know the resulting scar tissue damage on your nerves on the operated side? How long does it take for the complications to come, if at all? I assume being in the UK, your surgery was "free" ? Is your therapy as well? I guess there's good and bad with the NHS.

SD38 · 10-26-2011, 06:08 PM

Quote:

Originally Posted by 343v343

Well put SD38. How is your healing coming. When (hopefully never, but) will you know the resulting scar tissue damage on your nerves on the operated side? How long does it take for the complications to come, if at all? I assume being in the UK, your surgery was "free" ? Is your therapy as well? I guess there's good and bad with the NHS.

Hi 343v343,
damn I've just spent about 15 minutes typing a nice long post to you and for some reason it wouldn't submit....ahhhhhhhh

I'll make this brief. In short.....well if thats possible for me.
The healing, its still healing!
I sense that scar tissue damage is potentially very easy to get after this sort of TOS surgery. I definitely know when to take things slow. The risk is high and I think it wouldn't take long before complications occur through over exertion. If you dont rest sufficiently than evidence is immediate, basically signals are there if I do too much too quick and your body definitely tells you what you can and can't do.....and what you can't do is rush. I still get numb hands occassionally at night and ache with little exertion. I've also gained a new symptom post op, Pulsatile tinnitus- from which I've received no help for regardless of my mentioning it. So come Friday I'm back to my Gps to ask for yet more help, and to experience their ' I'm bored with you now look'. Yes UK NHS is free ( thats about it ), its pretty much CUT AND RUN. After care is non existant and its up to you to get therapy ( again free but basic). Nothing is offered after an op and PT or advice is literally given in 1 minute while you are still drugged up in the hospital... its a joke. My experience was an eye opener. You are very much on your own..... the attitude is like, well we've done our bit - move on.
No compassion.
Is it different in the states? Because its done through insurance and stuff is it more personal with follow ups that actually assess and monitor your post op outcome?
Anyway, KEEP STRONG and best wishes
SD38

343v343 · 10-26-2011, 06:10 PM

Quote:

Originally Posted by SD38

Is it different in the states?

Yes, in that they send you a bill after.

But pretty much the same here. If they can find a way to toss you out in the cold, they do. From my experience, doctors are more willing to help. But typically insurance will "deny" your request and you're back to square one.

SD38 · 10-27-2011, 05:16 AM

Quote:

Originally Posted by 343v343

Yes, in that they send you a bill after.

But pretty much the same here. If they can find a way to toss you out in the cold, they do. From my experience, doctors are more willing to help. But typically insurance will "deny" your request and you're back to square one.

Wow, that's brutal!!!!!!!!!!!!

What stuns me is that initially these people SUPPOSEDLY choose this profession to help others and to try and serve those in need. What has happened to society where they have got to the stage where its just about the job/money and that's it.
Come on medical staff..... COMPASSION!!!!!!!!
I believe it's their attitude that makes sufferers SUFFER all the more. It's more than enough that we have these symptoms but an unsympothetic doc/surgeon just adds to it.
I find that the lack of compassion leads to patient frustration, which then leads to depression followed by stress and more pain. Can they not see the vicious cycle that we are in and they contribute to!
AAAHHHHHHHHHHH.
Even though we have many occassions when the health situation gets on top of us I do feel that those of us that suffer on a daily basis are really strong because otherwise we would not be here anymore. Surely we should be respected by the medical profession for enduring with it NOT dismissed.

KEEP STRONG everyone.

chroma · 10-27-2011, 11:59 AM

Quote:

Originally Posted by SD38

Wow, that's brutal!!!!!!!!!!!!

What stuns me is that initially these people SUPPOSEDLY choose this profession to help others and to try and serve those in need. What has happened to society where they have got to the stage where its just about the job/money and that's it.
Come on medical staff..... COMPASSION!!!!!!!!

Eh, I'm not really looking for compassion from medical staff. They see sick people all day, all week and all year, so it's only natural that after awhile they become habituated to it.

What I want, and we have a right to demand, is effectiveness. How did the ER of a top ranked hospital discharge me with "undiagnosed chest pains"? It's not like TOS is new. It's been around for decades and I'm not the first person to show up in the ER with it.

In software engineering we typically stay on a problem until it's fixed. And we use problem solving techniques like "process of elimination" and "try a different test". Some doctors do as well, but not enough of them.

I also don't see any advances regarding TOS. What was the solution 20 years ago? Removing the first rib and scalenes, and hoping that (a) it works and (b) there are no complications? What's the solution today? Same thing, right? Where's the progress?

343v343 · 10-27-2011, 12:09 PM

TOS seems so relatively rare, most doctors I have met really know little about it. I have brought it up to doctors and in many cases I know more about the pathology and nuances than they do. It's why I'd make the trip to an expert before doing anything non-conservative.

SD38 · 10-27-2011, 02:37 PM

Quote:

Originally Posted by chroma

Eh, I'm not really looking for compassion from medical staff. They see sick people all day, all week and all year, so it's only natural that after awhile they become habituated to it.

What I want, and we have a right to demand, is effectiveness. How did the ER of a top ranked hospital discharge me with "undiagnosed chest pains"? It's not like TOS is new. It's been around for decades and I'm not the first person to show up in the ER with it.

In software engineering we typically stay on a problem until it's fixed. And we use problem solving techniques like "process of elimination" and "try a different test". Some doctors do as well, but not enough of them.

I also don't see any advances regarding TOS. What was the solution 20 years ago? Removing the first rib and scalenes, and hoping that (a) it works and (b) there are no complications? What's the solution today? Same thing, right? Where's the progress?

That's made me think differently and wake up abit..... Compassion is not the issue, its misdiagnoses and incompetence that matters. I'm just feeling sorry for myself of late. It's a scary realisation that despite having such invasive surgery for A/VTOS I still hurt, get headaches etc etc. May be things will improve after the 2nd op OR am I just kidding myself????

343v343 · 10-27-2011, 03:20 PM

I say/think improvement is relative. If you can sleep better knowing you're not in danger of a life threatening blood clot or worse... That's peace of mind. Obviously you've gotten improved circulation so thats a big plus!

No doubt the surgery is invasive. I couldn't imagine knowing you're due for a second one. But I guess what are your alternatives. Just hoping you don't get scar tissue...

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