Sorry if I ask questions that have already been asked on this forum. I have tried to read through as much as possible but hopefully someone out there can help me.

I have been diagnosed w/ TOS in my left arm from a wrestling injury that occurred over 3 years ago. The onset was sudden when I was playing basketball 6 months after the wresting injury. I have seen seen a prominent sports therapist who was very familiar w/ TOS but his sessions helped but symptoms would soon return. I have a couple of questions in regards to symptoms.

1. Has anyone else out there had chronic headaches as a symptom?

2. I have had a pain that has slowly moved from about my elbow area and has made it's way all the way up my arm to my head and has affected the vision in my left eye. Has anyone else had that? I have had MRI and cat scans and show no blockage that would indicate a stoke indicator.

3. I am in Texas and have not seen Dr. Noon (that is on that list) but called to get a consultation. Is he good by anyone's experience.

4. How long does it take to recover from surgery?

5. After surgery are there limitations on activities you can do w/ that side? I have heard mixed reviews. One doctor told me there was a possibility of full recovery.

Any help would be greatly appreciated.

Thanks.

I have had TOS surgery on my right side in 2000. I could be off one year it was 2000 or 1999. My brain forgets days, times and years. LOL Anyway, I am doing great. I have vertually no trouble at all with my TOS. Before surgery, my fingers would spasm up and we would have to work on them to straighten them out but that quit also after the surgery. I think a person can recover completely but you have to be extra careful not to do anything to bring it on again by heavy lifting.

As far as healing time, it took me quite a while but I had other problems along with my surgery.

You might want to talk also to the Dr. about ending up with RSD after TOS surgery and asking if they will do a block before surgery to prevent that. The RSD rate is high with TOS surgery.

As far as headaches I don't think I delt with that. Mostly breathing and swallowing problems.

I have a friend who has TOS here in Co and her sister lives in Texas and has it and I know her sister had surgery in Texas and is doing good so there is definately a TOS Dr in Texas. Maybe you can look on the internet and find out who in Tex. does TOS surgery. If you need any help I will call Terry and find out who did her sisters surgery down in Texas. You can PM me and I will find that out for you. I don't believe a person has to travel all over the country these days to find a good Dr. There are more and more of them showing up.

I had surgery by Dr. Sanders and I am doing great so I do know a person can get as close to well as possible.

Have you tried PT? I was in PT for 3+ years for TOS, RSD, and Fibro. What I found about the TOS, the PT didn't do it for me even though I had very good PTers.


Good luck to you on getting better and you can.

Ada

Hi, Sorry for the reason you are here, but glad you found the site. It is by far the most information and support for TOSers' you can find!

I'm sure others will come along with more info, but I will tell you what I can, hope it helps.

1. Chronic headaches are a common symptom. If you feel along the top of your shoulder blade (trapezius muscle) and along the c-spine, you will likely find small hard knots under the skin that are incredibly painful when pressed on. These are trigger points, chronic spasms caused by irritation and inflammation. The spasms place tension on the underlying nerves, incuding not only the brachial plexus nerve roots but also the nerves that originate from the cervical plexus. So many of us have ringing in the ears, jaw and face pain, blurred vision, etc.

Massage can release the trigger points temporarily, trigger point injections will give longer relief, but they seem to be a fact of life with TOS for many. Practicing correct posture (head back over shoulders, shoulders straight, not rounded, shoulder blades "pinched" towards each other), purposefully taking time-outs to relax during the day, massages, and learning to avoid activities that cause headache ( and triggerpoint) flare-ups can help reduce the frquency and make things more manageable.

2. Possibly optic nerve is being irritated/compressed, maybe due to trigger points (#1)? How is your vision being affected? In my case it was focus - small print became blurry, and it gets much worse as the day goes on. Prior to TOS my vision was 20/30, no problems at all. If trigger point injections don't do anything for the vision, a scalene block might show if the scalenes are responsible?

3. Can't help with this.

4. It took me about 5-6 weeks to start feeling like I was ready to function on most levels again, driving, doing errands, light housework - my "normal" routine. Most surgeons I have spoken with or whose articles I have read seem to agree it takes about a full year for full recovery to take place - for all the healing that needs to occur inside the body, especially the nerves.

5. You will find a wide variety of opinions on this. Many Drs don't believe in neurogenic TOS still to this day, unless there are positive EMG findings, and possibly hand atrophy. There are others who see a great many cases of neurogenic TOS and have a good understanding of it. It helps if you can see one of these Drs. I have seen many different stats given as well. My feeling is that if conservative treatment options have been given honest attempts without signs of progress, or with progressive worsening of sx, then the sooner you free the trapped nerves, the better the outcome is likely to be. Of course, I would want to find a surgeon who was experienced, highly recommended, and whose approach I felt comfortable with. I do know of some people who have fully recovered. One works as a massage therapist. The only activities she avoids are painting overhead and carrying heavy suitcases. There are no guarantees though - some see 50%-80% improvement, some see little or none, some are worse. So much is dependent on the individual - the cause of the TOS, co-existing health problems, how long they've had TOS, how their body makes "scar tissue", depression, etc.

I do think the more physically fit you are, the better your recovery may be - and because you have been so physically active this may be in your favor. I would urge you not to do any weight training or any exercises that strengthens the pecs or other chest muscles, if you're still able to do any. The muscles that need strengthened are the scapular stabilizers, the rhomboids and other back muscles that are no longer doing their work to keep the head and shoulders in proper position. The pecs are doing the job instead, and are overworked and tight. If your PT can work on loosening the pecs it would be helpful as this is often a major problem area.

I was told post-op to just feed, dress and groom myself for the next 4-6 weeks, that's it. I could try driving around the block at 3 weeks, to see how comfortable I felt when I stepped on the brakes - was definitely still a little tender under the arm!

Hope you get the answers you need! Post-op PT is a BIG part of recovery, sounds like you might have that piece covered.

Nice to meet you,
beth

There has been a few that had very bad headaches and some with face pain too.

beth coved most of your questions- I can't help with #3 either.

Here's the link to our useful sticky thread - tons of info- I added our polls thread links there too
http://neurotalk.psychcentral.com/showthread.php?t=84

nice to meet you.

Wow thanks for the prompt response.

I did learn not to do a lot of things as far as head movements, stopped lifting weights, certain movements, and sleeping before I even knew what the problem was. The hard part is trying to stay fit when you don't know what will aggravate the condition.

Beth your explanations make a lot of sense and I really appreciate them.

About Question 2: My vision would only get slightly blurry but the pain in and around the eye would be very intense. I was in the army and played sports so I have a high tolerance for pain and just 'deal' with it. But the pain is very persistent around those pressure points and makes it very hard for me to concentrate. To help alleviate this, is my main reason for considering the surgery.

Since mine was caused by me basically dislocating and "breaking" my shoulder, a doctor told me they could go in and remove all the scar tissue that was probably causing the blockage and my full recovery was 50/50...I am quite skeptical of this though.

I have family in NY, CA, GA so besides TX that would be my primary focus for finding a surgeon.

The lack of knowledge on TOS is rather frustrating so again I appreciate your responses.

Hi Houston !

I have chronic left occipital headaches from TOS (along with the left face, jaw, throat, and ear thing) Thankfully, no problems with my vision (that I didn't already have ) In the past, I did have a left occipital nerve block, which helped for awhile. Now, the RIGHT PT and chiro are able to help me keep it in check.

I really recommend finding a great PT before you have surgery. I did 2 courses of PT the wrong way in the past......just weights. It made everything so much worse. You need to find one who does myofascial release work. As my PT explains it, adding weights for strength training before losening the fascia to let you get back into proper alignment, is a recipe for disaster.

Good luck !

Is a general surgeon that also takes in vascular. He is a good doctor and welll liked but how much experience he has in TOS is beyond me. There is also a Dr. Alan Lundsren who is with Methodist and IS a vascular surgeon. I was seeing a physiatrist here in Houston (she is great) for this who said the best docs are in Denver. But, I would certainly try the best kind of physical "gentle" therapy before I was cut on. Surgery is not always the answer and can make one worse in the wrong hands or inexpereinced hands.
Good Luck to you.