I am so glad that I found this forum. My daughter is 19 and has been suffering for a year with pain in her shoulder, elbow and hand. Our ortho thought she had a tear in rotator cuff, but when we went to another doctor in Dallas, he diagnoised her with TOS. After 6 weeks of p/t, he has referred her to Dr Pearl. We have her appointment and surgery scheduled for December. She is in college and trying to make it past finals before surgery. I was just wondering if you can tell us about your recovery. I am also pleased to read that you are glad that you had the surgery done. I feel confident that Dr Pearl is the right surgeon after ready your posts. It is so scary, but we have to try something. She can not live in pain. Thank you for any information that you can give us. Have a blessed day. Hope you continue to get better.

Good luck to you and your daughter! I'm sorry to hear she's suffering with TOS at age 19, but glad to hear she found a doctor who figured out what was going on!
Did you have specific questions about recovery? For me, I was in the hospital overnight and most of the following day (discharged around 7 PM). My surgery lasted about 2 hours and immediately upon waking there were people ready to manage my pain. They gave me an injection and monitored pain, when it was obvious that drug was ineffective for me, they switched to another. While I was in pain when I first woke up, they got me set up with a pump ASAP, complete with a button I could push to regulate administration. They took it away from me the next morning around 7 AM to see how I could manage without it - they assured me I could have it back if I felt like I needed it - and started me on oral pain meds. While I would have liked to have the pump another day, it was manageable with the oral meds and since a) I wanted to get home as quick as possible, and b) I'm always paranoid about getting addicted to something (family history), I let them keep it. :-)
I had a small chest tube attached to a bulb to remove fluid; this was removed right before I was discharged (literally, about 3 minutes before I checked out). I had to do breathing exercises with a spirometer every hour for the first 24 hours (a plastic spirometer goes home with you and you continue to do this exercise on a more modified scale at home).
While in the hospital she'll be "doped up" enough to be a bit unsteady on her feet and hooked up to IVs, so she should expect to be helped to the bathroom (although she should not need help IN the bathroom); and no bathing or showering. The staff is great; just let them know what your needs are - while I was on hydromorphone, it made me itchy (extremely common), and they were great about getting me antihistamines and discussing whether I'd like to change drugs (I opted not to change, the effectivity of the drug was, to me, well worth the itchiness). Expect to be woken up about every hour, though - people checking on you, taking blood, ensuring pump and IVs are functioning properly, etc.
I was not put in a sling or bandaged at all. I was allowed to use the arm for things like eating (and bathing, once released) but advised to take it really easy with the arm. My instructions were to do no driving for two weeks plus however long it took to get off the oral narcotic pain med entirely, so I actually didn't drive for 3 weeks. When I did start driving, it was surprisingly uncomfortable for about the first 10 days - you don't really hold your arm that way doing anything else. The first week post-op I was taking the max dose of pain meds at the exact interval I was allowed (and not a minute earlier or later, even in the middle of the night!), but then started tapering off. For the last week, I was mostly taking them just at night. Still, it was a solid two weeks of not doing much other than watching TV while lying on couch or bed, and sleeping - it was bothersome to hold a book or phone for too long, even - the worst part was that I invariably sleep on my side, so when I would roll to my side during sleep, it would wake me up.
I had one small setback on day 4 when I woke up with severe pain in my chest. I went to the ER; it was most likely spasms of the intercostals, but they did a full CT to ensure I didn't have a clot or pneumonia. The ER doc put me on antibiotics "just in case." I got the feeling he was one of those doctors that feels every surgery should get post-op antibiotics. I don't know if that was necessary, but I didn't get pneumonia, so I won't complain. :-)
I started PT at 4 weeks post op and went back to work on light duty about 2 weeks later. I am still on light duty at work and not allowed to do anything "jarring" yet - i.e. jogging, horseback riding, etc. Dr. Pearl said it would probably be at least 12 weeks from the date of surgery before that type of activity could be considered (I'm supposed to get re-evaluated by him at the 12 week mark).
Is your daughter on medications now? If so, she will likely stay on them during the course of recovery (along with Rx'd pain meds) and not discontinue them until it can accurately be determined (when she does discontinue them) that any pain she feels is not lingering surgical pain vs TOS pain.
Naturally the course of recovery can vary - the complexity of the individual surgery is a huge factor, as is severity of condition, individual fitness, tolerance of drugs, adherence to the instructions and restrictions, etc. Thus far mine has fallen into the "average" category (thankfully!).
Let me know if you have specific questions!

Thank you so much for all your information! I'm really nervous, but she is just ready to get out of pain and on with her life! I really appreciate your taking the time to go through your experience. I hope you are getting better every day! I will let you know how things go once she has the surgery. God bless and have a great day!

Thank you so much for your post and experience with Dr. Pearl. I saw him in June and last week. I have have been trying PT for almost 3 months now. I was hoping to avoid surgery, but haven't had much luck decompressing the thoracic outlet with PT. PT has offered more range of motion, and less neck pain, but not enough to be a good for of pain management to have quality of life.

I've read so many stories where the surgery actually took about a year for complete recovery so was very surprised to hear Dr. Pearl say 10-12 week recovery. After reading your post, I am more confident about the surgery and his skills.

Have you noticed less pain in your hand/arm? Did you have pain in your armpit/chest area as well? Did you have a pec minor release as well? That is being recommended in addition to the rib resection and the scalenectomy. I was curious how that affects recovery.

I can't tell again how thankful I am for your post and detail of events. Best to you in your recovery and please continue to post your experience in the weeks ahead. It is so very helpful to others who haven't gone through this experience.

I did not have a pec minor release; it wasn't indicated in my case; I don't know how that will affect recovery. I do know that if Dr. P gets in there and figures out it isn't necessary for you after all, he won't do it. He had initially thought my surgery would be more extensive than it ended up being, but once he got started and could actually see what he was dealing with, he changed course.

Since surgery, I have only rarely had pain that travels down the arm into the hand, and it was nothing like it was before surgery - it's more of an uncomfortable annoyance rather than the severe pain it once was. I actually haven't had that happen at all in the last week. I have not experienced the pain in the "front" of the shoulder - i.e. chest & axillary region - at all since surgery. There has been some tightness there that I'm still working out in PT, but it doesn't hurt.

I am still having some pain along the medial border of the scapula, and sometimes up the right side of my neck - these were my worst pain areas prior to surgery - but it is no longer a constant pain, and the severity is a lot less. Dr. P said I should expect the scapular area pain to take the longest to resolve, as it's almost entirely nerve-related, so at least that wasn't a surprise. My PT also says that I've been using my body wrong for most of my life, trying to alleviate the pain, and that, other than the latissimus dorsi, my back muscles are ridiculously weak (I'm not sure I've ever properly engaged my lower trap in my life prior to this) and my posture is terrible, so I've got a ways to go to get things resolved in shoulder fitness/support.

I am hopeful that, since I am only 2 months into recovery, my condition will improve even more, but if it doesn't, I could at least live like this. I can drive, I can work, and I can sleep - an enormous improvement over the last 3 years. I would, of course, prefer to improve enough to be able to get fit again and enjoy things (like horseback riding) that are like a distant memory right now - and that's still the ultimate goal, but I'm so grateful for the quality of life I've got at this point.

Best of luck to you, and keep us posted on how you're doing!

I think 1 year to complete recovery is realistic. I don't think any surgeon will say the 12 week recovery number is for 100% recovery. My surgeon said average recovery for transaxillary procedure was 6-8 weeks per side (I've read from 6-12 weeks for supraclavicular), 1 year for full recovery.

I'm a few months post surgeries but still have a ways to go in my recovery (even though I have come a long way and greatly improved).

To TOSMother: I didn't want to hijack Jill's thread so I'm posting a reply to you here - I'm guessing you're keeping up with this thread. I did not do chiropracty, for a few reasons - 1) no chiros in my area had experience with TOS, 2) most of them were extremely wary of practicing on a person with cervical ribs, and 3) I have some disc issues in my neck and was cautioned against it by my cervical DO.
If I had had the opportunity to see a chiro with extensive TOS & cervical rib experience, I still probably would have tried it, but in my case there would not have been a chance it could be a permanent fix; I already had so much adhesion and scar tissue built up that had to be removed (something that, of course, cannot be known prior to surgery). Since your daughter is so young, she may not have that problem. I'm sorry I can't give you any insight into how much pain might be involved initially in chiro treatment. You should start a new thread and ask for input; I'm sure there are members who can. My heart goes out to your daughter; I know how frustrated she must be.

To Romans8: When are you having your appointment? I'm crossing my fingers that yours goes as well as mine did!

Thank you for your thoughts! I will keep you posted.

LosingHope,

Will you please get in touch with me! I am having difficulties getting in touch with you through PM and would really like to get some personal feedback from you about your surgery etc. Thank you

mytea

To Romans8: When are you having your appointment? I'm crossing my fingers that yours goes as well as mine did![/QUOTE]

LH,

My appt. is October 15. They offered a way to do it all in one trip but we decided to see the doctor first and then schedule the surgery a few weeks later if it is confirmed. Thank you for your last post describing your recovery as it sounds like our cases are similar. The pain in my right medial scapula is by far the worst part of all of this. At times it explodes into the entire region. When this happens my shoulder actually collapses and is 2 or 3 inches below my left side. This seems to crush many nerves and is really the only time my right arm gets involved. I have significant atrophy on the right side (neck, trap). Nerve studies have always been negative until the last one showing abnormal dorsal scapular and long thoracic which correlate with the scapular pain. I am expecting a long recovery after the surgery but that's ok. I lost my job because of the longevity of this but I am fortunate to have good disability insurance.

I am getting some benefit from a botox injection I received in August. It is not dramatic like the scalene block but I would say 30 - 40% relief. I am hoping to get the surgery scheduled very soon after this wears off as I am dreading the return to where I was. I am told it can give up to 3 months relief.

What is really weird with my case is how I have developed it bilaterally this year. The right side started 7 years ago and my left side has never had any problems until the last six months and now I cannot raise my left arm above my shoulder. I was told this could be a compensating thing or I could have TOS on both sides. It is deteriorating fast and I am becoming more concerned that I will have to have the surgery on both sides. However if it gives good relief on the right I would not hesitate to repeat on the left when it becomes feasible to do so.

Again I cannot tell you how grateful I am to have you sharing your road on here and please continue. My heart goes out to all of you who are suffering with this. DO NOT GIVE UP. I do not understand why more doctors cannot detect this condition and some do not even believe it is real. However all things happen for a reason and this is no exception.

Do you have any recommendations on a place to stay while there? The administrative person sent me a list of hotels and the prices were very reasonable. I am going by myself the first trip and hope to avoid renting a car as driving in unfamiliar territory in my condition is not wise.