I am having a difficult time emotionally resigning myself that there is no "cure" for TOS and that I am stuck with this (best case managing symptoms, worst case - in horrible life long pain). It would seem surgery is no real solution, where at best, it may offer a couple of years of relief (if any at all.) *Or in fact, make me worse off with complications.

My question is how many of you rely on narcotics to live with TOS? Is it possible to avoid them, or is the pain just too great? I have read here:

http://surgery.wustl.edu/TOS_Patients_Neurogenic.aspx

Yet some seem to take pain pills every day? Could you avoid them if you 'had' to? I can't help but feel like my future is just sitting on a couch waiting to die. It seems most people who struggle with this have no quality of life and are unable to really do anything other than minimal activity.

Am I really never going to do physical activities ever again? Argh, this can't be happening to me.

There are others options :

Tos treatments suggestions

Listed by risks/rewards

1. Strain-counterstrain of scalenes, eventually with gravity therapy (to chronicaly lose scalene's tone) - that work on me, not permanent for the moment but.. i actually try Strain-counter strain for 7 days and it give some results - less pain -;
2. Hyperbaric therapy (1 time per day, for 20 days);
3. pentoxifylline + tocopherol (mesotherapy every day for 1 year - 2 years) local injections are better; It is the best and safer reversing-fibrosis therapy;
4. Decorin therapy on scalenes anterior (for reversing fibrosis, 6 months - 1 year); Maybe be the best reversing-fibrosis therapy, but more difficult to have acces. It is a local therapy so very interesting to avoid long-terme side effects.
5. Acunpunture; That realy work sometimes, but the 'doctor' must be careful;

If nothing work, here are more invasives procedure, or less interesting, listed by risks/rewards again :

6. Pentoxifylline + tocopherol oral for 1 year - 2 years. Oral is good but a little less safe.
7. Normast (palmitoylethanolamide), because tos's pain is driven by mast cells, it may be usefull alone;
8. Heparin, but you need to be relatively at rest.
9. Botox with musculation shoulders shrug (?) just an idea for this one shoulder shrugs without scalenes activation, why not ?;
10. Epo (help in 1 case out of 3, Ntos only)
11. Surgery or efficient pain killers : nalbuphine, Topical nitroglycerin (can lessen pain significantly, more so than opiates, but some have headaches or stomack pain with it)

Personaly i'm on the 1), and i have tried pentoxyfilline + tocopherol for 6 months but gave up because i have some reservations about side effects related to tgf-b1 inhibition in all the body, as it is a tumor suppressive agent, and the existence of local solutions. But 2 years may be very safe.
In a study, pentoxifylline given 19 times the maximal human dose (1200mg) resulted in bening tumor on some rats in 18 months, but not in mouse, and no datas on humans. Maybe nothing but for the moment they are some reservations for me and because the recent studies about tocopherol-prostate cancer links, it need some litterature reviews before taking it for years oraly. Or finding a good local solution


Talk to your doctor.

I don't know alot about TOS but I do about narcotics. I had spinal fusions and take them. I would not wish this for anyone. Use only as a last resort, after trying all the other wonderful sugestions. I would give anything not to have to take this medication. If you forget to take your medication, there is withdrawl. If you have to have another surgery, there are questions in the hospital, and sometimes doctors don't communicate effectively about pain meds. I didn't get enough of a medication after my spinal fusion, because I had built up a tolerence. I do wish you all the best and I hope you don't have to take them. ginnie

I COMPLETELY understand your struggle with the coming to terms with the fact that op or no op TOS is here possibly for life!
It has almost broke me at times, especially after the op when I realised that even though one issue may be sorted, namely the A/VTOS compression I'm still stuck with muscle pain/spasms and the connected probs associated with them etc.
That is why I've started CBT ( Cognitive Behavioural Therapy ), its not going to cure anything but hopefully it will enable me to come to terms and learn to adjust with TOS. I miss my past activities so much its trumatising but I have to try to move on from these negative feelings and work with what I can do. It doesn't get less painful but I'm almost having to reteach myself to live again..... differently. Its so frustrating whenyou look able bodied but can no longer function in the same way because of continual aches.
I'm using every bit of my willpower to keep clean. I can't allow myself to go down an even more destructive road such as narcotics...... as tempting as it looks at times.
In one way it gives me a sense of empowerment that I haven't succomed to them!
Not giving into them keeps me stronger and a sense of pride that I am at least clean despite my frustration with TOS.
At times of weakness I just look at my son. Thats enough to stop me turning to vices.
Yes its a hard daily battle but as long as I'm clean I'm winning!!!!!!!!!!!!!
Keep STRONG.

What you said is so true. It is hard to come to face what ever disease that has us. So many here find this site because they are at a loss as to what to do about it. Learning to live with these horrible conditions is the greatest challenge of all. I don't do very well with it eithor. I have degenerative joint, and disk disease. Several fusions later, and with narcotics, I have somewhat of a life. I don't do the things I use to do eithor, and it hurts. I was super active with a business and traveled all over the country. Now I am at home on medicare and medicade. It all stinks. I am sorry you have TOS. I can tell you I care about you and I understand you pain. I come here often to neuro talk, to comfort and be comforted. I need the people here no question about that. I wish you all the best . ginnie

Hey, 343v343, Ginnie, and all members

Just heartfelt sorrow for all the pain and suffering we experience.

It just don't seem fair.

Prayers to relieve so much pain and suffering.

I posted earlier, but I'm still in shock.

I recieved my results from the ultrasound of my plexus area and other nerves. My right shoulder was a mess. So much inflamation and damage like taers, swelling, nerves bundled together, arthritis. And more problems, the doctor was shocked by how bad it was. I am still surprised how bad it was even though my shoulder hurt for years and is still frozen. The doctor doesn't want it to get any worse.

It is shocking to actually see the damage on a high definetion screen. I am still feeling the shock of the extent of the damage.

I take meds every day. Just the minimum, but also get nerve blocks and wonder how bad I will feel in a the future.

I understand about seeing on film just what is going on. It is a shock. I looked at my cervical spine stacking oddly on top of each other crooked and out of place as could be. All I could do is cry, knowing what I faced. I am so sorry for the pain and trouble in your shoulder. Is there anything that can be done besides medication? Is this something that has hope of recovery? Surgery, therapy, blocks? It is no fun to be in that kind of pain. I wish you all the best. ginnie

I have nerve blocks and they help a lot. The doctor mentioned a cortisone drip that helps and its non-invasive. I am going to see about that. They may help the nerve blocks last longer. I had the nerve blocks for a while now. They still work though so far. I have so many nerve injuries a surgery would be risky and only as a last resort.

The damage was shocking and I could see it right on a screen. I always knew it was my right shoulder that was worst then anything and my complaining was legitimate. We do know our own bodies. I was right.

Do you do the strain-counterstrain on yourself, or does someone else do it on you?