the worst
 

I'm in a bad spot. I have been a VERY active person up until 4 months ago and this is killing my life. Everything I read points exactly to TOS and with all the testing I've undergone being normal, I would agree this being the culprit. There seems to be little hope when reading through tons of pages, threads, etc. Even surgery doesn't guarantee anything promising.

I go for my 4th PT tomm and 4th Chiro this week. I have had ZERO relief. Actually, my symptoms have increased on the left arm/neck. I have no other medical history and CANNOT just lie down and take this! I can't just quit my job and sulk all day. I WANT MY LIFE BACK!

This is making me depressed because I cannot enjoy anything. I awake every morning with the same hope that maybe, just maybe it'll be less bothersome than the day before, giving me some hope that stretching, PT, and Chiro are helping. Nope.

I'm a 36yo dude who wants to return to the active adventure lifestyle, yet I cannot even utilize my hands/fingers correctly. So is this what I'm facing for the rest of my life? Plenty of people here dealing with this for 10 years! I feel for those folks, you have my respect. I don't understand where to go or what to do next.

Bobby,

I'm sorry you're in this situation. I've had TOS for nearly 13 years, with unsuccessful surgery 10 years ago. I feel horrible now so can't type much, but I just wanted to say that the hardest thing, and the most important, is to try to not spin out into what this means for the future.

I was 40 when I got TOS, an active attorney with a four year old. It's been hard to lose so much of who I was. I miss swimming and playing softball, and being able to be a playful, physical mom and a worker. It has been a bummer; it is a bummer.

But I try to make peace with the reality of my life now, while still trying to identify ways that I might get better -- even in small ways. It's a tricky balance.

You are very new to this even though it probably feels like it's been going on forever. Can you tell us whether you had an injury, a cervical rib, neuro or vascular problems, etc? Many people can recover with rest and appropriate PT. In my opinion, it's really important to deal with this in the early stages. It gets harder the longer you've had symptoms.

I'm glad you found your way here.

Take care,
Kelly

Thanks for the kind words. I'm really trying to focus on some kind of hope. This is horrible...as you already know. Very sorry to hear of your long years and especially the unsuccessful surgery.

No cervical rib
No definitive injury
Not sure about vascular stuff
I've had no prior surgeries
I feel healthy otherwise

I desperately want to get back to running, working out, and ridng my motorcycle.

It took time for this to become a problem, so it will take a long time to make positive changes.. expert PT & DC will help, but much of the day to day work must be done by you.
*As long as no specific injury is found that surgery is needed.*


If you can fix most of this TOS thing - isn't it worth setting that "fun " stuff aside for awhile?
It isn't a quick fix thing at all...takes time , awareness & focus , and a lot of luck too..

Remember many that did recover, with or without surgery, don't stop in or post much any more..

Thanks again Jo. I've been following some threads on here from "Hellothere" who apparently had a recovery. It gives hope when needed.

Sorry to vent folks! Everyone here dealing with this has my respect.

Hello Bobby! It's heartbreaking to hear your desperation as we have ALL been there. The next question is of course, where are you from?

I'm not saying PT and chiro don't help but they are rarely a cure. Heck, even surgery is not always a cure as you have seen. Because I am one of the people that wasted a year, spending money randomly on all these remedies, when in fact my veins and arteries were severely compressed, I would start with finding a vascular TOS specialist who can see if your blood is flowing correctly. Since you haven't had a definitive cause for these issues, there is a good possibility that the blood flow is the issue.

So let's take a deep breath and focus on getting some real answers from a specialist who knows what they are doing.:hug:

Hello Bobby,
Welcome to the group. I am fairly new to this board but have been dealing with tos for 11 months and 21 days. I agree with the advice to determine if there is vascular damage. Do this as soon as you can.Treatment and prognosis are relevant to your diagnosis.

PT can do loads if you have the right diagnosis. As can surgery...again with the right diagnosis. No matter what your treatment find folks who know what they are doing. A regular pt or chiro isn't good enough! Find ones who have treated TOS before and been successful. Plus ask them to define success....you will find serious definition differences.

I understand the desire to have your life back. I am right there with you. I haven't yet given up on what my life was. I wont give up. I cant give up.
I truly hope you have a good dr and a support structure to help in your daily life. If not start getting it in place. This is going to be an adventure.
I really hope you are able to get squared away soon.

Here is Bobby's earlier thread that has description of symptoms and test done so far.. post #1 & 16..
http://neurotalk.psychcentral.com/thread215180.html

Vascular symptoms of swelling /heaviness /distended veins not mentioned..

Yes, thank Jo for linking that. I'm not sure about the vascular issues. Huh, I've never thought of that actually.

I agree with everything said here. Hard to take in. Yes, I'm thinking TOS specialist. I know Jo mentioned Dr. Donahue as Mass Gen, so maybe I should do it. I travel to Denver as well and noticed a specialist there too.

Again, thanks for feedback.

Bobby78,

sorry to hear you are not doing well.
Assuming you excluded all the "other" possible causes of pain (spinal, vascular, neurological disease etc), the pain must be caused by a nerve injury due to compression and/or overstretching.
From what I found out (the hard way), no amount of PT and stretching is going to help as it just causes more compression and stretching.

For me to start making any progress, I needed to give the nerves a chance to calm down first.
Which meant no computer work (eliminate the original cause), not doing movements which cause overstretching (like reaching overhead), relaxation and breathing exercises (to relax neck/shoulder muscles) multiple times per day. Most important is not to do anything that increases pain.
After a couple of months my pain level was down and I was able to resume some stretching/strengthening.