[daughterwithtos]

What a wonderful insightful sight! I have been creeping on neurotalk for a while and decided to become a member to seek more specific information about TOS surgery and recovery for my 16 year old daughter. I am trying to get some insight on recovery expectations based on initial cause of neurogenic TOS - injury versus overused sports muscle. I just scheduled her for surgery with Dr. Robert Thompson in St. Louis. He plans to remove her first rib, both scalene muscles and her pectoralis minor. Understanding everyone’s condition is different it appears to me that those caused by overuse due to athletic activities (volleyball, swimming, tennis, etc) have the symptoms come on gradually for no apparent reason and heal faster after surgery. My daughter's symptoms were caused by a silly volleyball accident. I am in an analysis paralysis state - scared of making the wrong decision to either have surgery NOW or wait (but for what?). She is in constant pain (varies from 3-7) and wants her quality of life back. Volleyball is history. She loves art (wants it to be her major) and playing the guitar.

Brief history: Daughter at age 14 hit her right elbow on her own leg during a volleyball exercise (2/10). Experienced instant pain (like it was on fire). Told her she hit her funny bone and that it would go away. Well, it didn’t and 2 weeks later when she told me that the pain was waking her up in the middle of the night I took her to her pediatrician and an orthopedic surgeon. She felt numbness from her elbow to her pinky and ring finger. PT seemed to make her pain worse - especially the nerve glides. Therapist noticed that her ulnar nerves subluxed when she bent her elbow. She eventually had subcutaneous transposition of the ulnar nerve to keep her nerve from moving back and forth over her elbow with the thought the nerve could heal (12/10) by orthopedic DO. Two months later the pain was worst that before the surgery. The surgeon could not figure out why and referred us to another doctor. We saw several orthopedics. Some said nerves take time a long time to heal, others offered a redo to put the nerve submuscular and some said it was in her head and she needed to be on pain and antidepressants for the rest of her life. Took her to Dr. Susan Mackinnon at Barnes Jewish Hospital in St. Louis and she recognized that the first dr did not do the surgery correctly. The subcunateous tissue was too tight around her nerve causing it to have a 90 degree kink. Dr. Mackinnon put the ulnar nerve under her muscle and also released it in her wrist area (7/11). Honestly thought we licked the problem and I had the goal of getting her off her nerve and pain medicines (Gabatril, Lyrica, Cymbalta and Nortriptyline). The pain came back this with new pain further up the arm, shoulder blade and pec area. Writing was painful. Dr. Mackinnon diagnosed her with TOS and recommended specialized PT to strengthen her core and posture. (she slouched when writing and doing art). While she has made ergonomic modification, PT seems to just to cause her greater pain. Had surgery scheduled for October 17th but got cold feet and Dr. Mackinnon referred me to Dr. Robert Thompson while we were there for her pre-op. Came back the following week for scalene block test and to see his PT for additional assessment. All is confirmed that she has TOS. Dr. Mackinnon diagnoses 400 TOS cases a year and preforms only 4 TOS surgeries a year. Dr. Thompson specializes in TOS but has a much more radical but proven solution.

Crystal Ball Question: Recovery expectations?

[boytos]

Wow, from a single hit, it's impressive. It was a big hit misplaced i think

Prognosis is usually 50% chance of recovery, but the outcome vary too much to make a prognosis for tos to me.

[Anne4tos]

Sorry to read about your daughter. I have a teen volleyball player in my house as well. As her mother, I have TOS and played a lot of overhead sports in my life, but volleyball was my passion. You probably won't like my answer, but I think her best expectation for recovery is to stop the sport and get her into an excellent PT program. After a year or two, re-evaluate her condition. She is only 16 and has her entire life ahead of her. Even if she wins the lottery and gets a four-year full ride, it's not worth having a rib removed at such a young age. Surgical expectations can never be predicted with this syndrome and neuro TOS makes it even more difficult.

As I'm about to drive my daughter to a volleyball game, I think about her playing often as surgeons have blamed my development of TOS on the sport. I think it could be one of many contributing factors, but not THE factor.

No parent wants to squelch their children's dreams, but making a decision on a surgery with so many unknowns would be an unbearable burden to make. I met a Dad not long ago whose 15 year daughter blew clots in both arms from swimming. She could either have both ribs removed or stop swimming. He chose the latter and she's doing great. Best of luck to both of you.

[Jomar]

Are the drs sure there is no RSD/CRPS involvement with the ongoing pain? It's a nasty chronic painful condition that can sometimes happen from a slight bump to surgery.

The art focus should be fine, as she can come and go, take breaks with most art projects.
Guitar, not so sure, because of the postures, gripping, and repetitions... might be too much stress on the involved areas.

Is her pain level 3s-7s even with the meds? Is she on all of those meds at the same time, or tried them at various points in time?

Definitely go with the most experienced & skilled surgeon that you can get if you decide to go that route, to stack the odds for best results.

There is a possibility of adhesive scar tissues that might build up in the areas of surgery later on, some people may produce more of this than the norm. It is just something to be aware of as some surgeon don't mention this.

Poor posture really does add to overall TOS pain & discomfort, so have her keep aware of slouching - it closes down the whole area pinching things shut.

I don't know what kind of things they had her doing at PT,
were they doing "hands on" work for her (passive on her part) like massage, trigger point, ultrasound, heat, IF stim, low level laser, top rib mobilization, etc) ?

Or having her do active therapies like weights, pulleys, hand bike, stretchy bands? not good if pain levels are 3+ and esp. if pain increases, that PT plan is not correct for the client, needs to be re evaluated/readjusted.

Can she do the yoga style corpse pose comfortably?
That is a good place to start many x's a day, for relaxing and with deep belly breathing. Just hang out that way as often as she can as long as there is no increase in pain.
If she can do that well then the pictures on this link might be the next step to try-
http://neurotalk.psychcentral.com/album.php?albumid=422

I was amazed by all the positive help my skilled chiropractor was for me, he also used many of the PT modalities so covered that aspect in one shot.
Plus the added adjustment as needed, wrist, elbows, shoulders, hips, c spine, top rib...

There are lots of self help tips and things to help reduce pain & symptoms if myofascial causes, they usually won't work as well if a nerve is clearly involved.

[onelessrib]

Originally Posted by daughterwithtos

What a wonderful insightful sight! I have been creeping on neurotalk for a while and decided to become a member to seek more specific information about TOS surgery and recovery for my 16 year old daughter. I am trying to get some insight on recovery expectations based on initial cause of neurogenic TOS - injury versus overused sports muscle. I just scheduled her for surgery with Dr. Robert Thompson in St. Louis. He plans to remove her first rib, both scalene muscles and her pectoralis minor. Understanding everyone’s condition is different it appears to me that those caused by overuse due to athletic activities (volleyball, swimming, tennis, etc) have the symptoms come on gradually for no apparent reason and heal faster after surgery. My daughter's symptoms were caused by a silly volleyball accident. I am in an analysis paralysis state - scared of making the wrong decision to either have surgery NOW or wait (but for what?). She is in constant pain (varies from 3-7) and wants her quality of life back. Volleyball is history. She loves art (wants it to be her major) and playing the guitar.

Brief history: Daughter at age 14 hit her right elbow on her own leg during a volleyball exercise (2/10). Experienced instant pain (like it was on fire). Told her she hit her funny bone and that it would go away. Well, it didn’t and 2 weeks later when she told me that the pain was waking her up in the middle of the night I took her to her pediatrician and an orthopedic surgeon. She felt numbness from her elbow to her pinky and ring finger. PT seemed to make her pain worse - especially the nerve glides. Therapist noticed that her ulnar nerves subluxed when she bent her elbow. She eventually had subcutaneous transposition of the ulnar nerve to keep her nerve from moving back and forth over her elbow with the thought the nerve could heal (12/10) by orthopedic DO. Two months later the pain was worst that before the surgery. The surgeon could not figure out why and referred us to another doctor. We saw several orthopedics. Some said nerves take time a long time to heal, others offered a redo to put the nerve submuscular and some said it was in her head and she needed to be on pain and antidepressants for the rest of her life. Took her to Dr. Susan Mackinnon at Barnes Jewish Hospital in St. Louis and she recognized that the first dr did not do the surgery correctly. The subcunateous tissue was too tight around her nerve causing it to have a 90 degree kink. Dr. Mackinnon put the ulnar nerve under her muscle and also released it in her wrist area (7/11). Honestly thought we licked the problem and I had the goal of getting her off her nerve and pain medicines (Gabatril, Lyrica, Cymbalta and Nortriptyline). The pain came back this with new pain further up the arm, shoulder blade and pec area. Writing was painful. Dr. Mackinnon diagnosed her with TOS and recommended specialized PT to strengthen her core and posture. (she slouched when writing and doing art). While she has made ergonomic modification, PT seems to just to cause her greater pain. Had surgery scheduled for October 17th but got cold feet and Dr. Mackinnon referred me to Dr. Robert Thompson while we were there for her pre-op. Came back the following week for scalene block test and to see his PT for additional assessment. All is confirmed that she has TOS. Dr. Mackinnon diagnoses 400 TOS cases a year and preforms only 4 TOS surgeries a year. Dr. Thompson specializes in TOS but has a much more radical but proven solution.

Crystal Ball Question: Recovery expectations?

I just had surgeryp on 10/4 with Dr Thompson, it is now 3 weeks since surgery and I feeling better everyday. Recovery should be much easier for your daughter since she sounds like she is in good shape and 40 years younger than I am. By the way very pleased with Dr Thompson and his staff, good luck with your decision.

Regis

[mspennyloafer]

OMG i did not know nerves could sublux??

how did the pt know this

my tos is more the result of injuries too.

[LosingHope]

One of the best TOS "recovery" stories I ever heard was from the parents of a (then) 15 year old girl who had TOS that, as far as they can tell, was brought on by a sports injury; she played softball. She had the surgery done and by her senior year was able to win a softball scholarship to college. Her parents had agonized over the decision, of course - no parent wants their child to have to have surgery, but no parent wants to see their child suffering and in constant pain, either - but all three of them were very glad they got it done.

[daughterwithtos]

Thank you for the link and input. We had some dr opinions that thought she had RSD before her first surgery and shortly after her surgery. As I mentioned earlier, the subluxing of her nerve over her elbow wouldn't allow the nerve to settle down. The dr that did the surgery tried 3 times to sew the nerve into a subcutaneous pocket-first was too loose, 2nd too tight and he thought he got it right the 3rd time. Unfortunately, he didn't. It still was too tight and caused a 90 degree kink in her ulnar nerve. Scar tissue built up and caused greater pain than before surgery. Her second surgery straighten out the nerve and placed it under the muscle.

She has seen a chiropractor up to a week ago. He noticed her right scapula did not have same range of motion as left due to some sort of adhesions. He work on loosening it so her PT exercises would be more effective. He stretched the pectoralis minor muscle with a lotions and metal instrument and used cold laser therapy to help break up possible scar tissue and stimulate blood flow in thoracic area. He did a test were he took her purse with her arm at her side and slowly raised it to find out the degree where he lost her pulse. First time was 5 degrees. After adjustments it went to 80 and then 110. The thought was that it meant the TO was opening up. Unfortunately she started to have back pain. We haven't been back for a week due to hectic schedule and she is no longer complaining of back pain.
Very conflicted. Chiropractor strongly urges the surgery should be last possible resort. It has been almost 3 years. (which is an eternity in teen years). She wants a normal senior year and not have to have surgery when she is in college. Who knows if she will even be able to have the surgery if obama care takes over. Read blogs of those in Canada who had had 2 year waiting list.

[daughterwithtos]

Originally Posted by LosingHope

One of the best TOS "recovery" stories I ever heard was from the parents of a (then) 15 year old girl who had TOS that, as far as they can tell, was brought on by a sports injury; she played softball. She had the surgery done and by her senior year was able to win a softball scholarship to college. Her parents had agonized over the decision, of course - no parent wants their child to have to have surgery, but no parent wants to see their child suffering and in constant pain, either - but all three of them were very glad they got it done.

Thank you for the positive story. I've tried to keep all of the posts in perspective and understand that those who had great success have moved on and have no need to visit this site.

[daughterwithtos]

Originally Posted by mspennyloafer

OMG i did not know nerves could sublux??

how did the pt know this

my tos is more the result of injuries too.

The PT was holding her elbow while she was bending it and could actually feel the nerve move back and forth. Apparently something like 20% of population have subluxing ulnar nerve. Ulnar entrapment is sometimes caused by persistently flexed elbow posture greater than 90 degrees (driving, typing, tennis, pitching) and acute trauma (as in my daughter's case)