Hi all. This is my first post. I'm 42 dx with TOC in August, but have had it for over 2 years. I was injured during work just over 2 years ago. Initially I though I had tennis elbow, but it quickly became obvious that there was something more serious going on. About six weeks after the injury I was diagnosed with cubital tunnel syndrome. I a few months of PT and OT, but had no improvement in my symptoms.

Just about 5 months after my injury I had a submuscular ulnar transposition and carpal tunnel release surgery. The day after my surgery I felt that something was not right and was in uncontrollable pain. Six weeks post-op I got the diagnosis of CRPS/RSD (complex regional pain syndrome) in my right (domenant/injured) arm.

I have spent the past 18 months trying every treatment I could to get the symptoms of CRPS under control. It became apparent that there was more than CRPS contributing to my symptoms and I was finally diagnosed with TOS.

My original hand surgeon recommended that I go see Dr. Sang-Gil Lee at MGH in Boston. Dr. Lee diagnosed me with TOS. He recommends that I have my first rib removed as well as re-opening the incision on my elbow (actually making a much bigger incision) cleaning out the scar tissue, addressing any neuromas and maybe even moving my nerve again, plus doing a DeQuervain's release on my thumb. Essentially three surgeries at one time.

I have read a lot about Dr. Donohue being the best for TOS in Boston, but where I have other issues than just TOC I'm not sure that he could help me.

I was wondering if anyone has any experience with Dr.Lee?

Also I would like to know for those of you who have had the rib removal surgery how long did you stay in the hospital (baring there are no complications)? I see Dr. Lee soon so I can ask my list of question, but would like to get some idea of the common hospitalization times.

Lastly, has anyone gone through this surgery who had pre-exisitng CRPS in the same extremity? Did you do anything pre-op or intra-op to hopefully stop the CRPS from spreading?

Thank you for your help,
Gigi

Can anyone share with me how long they stayed in the hospital post-op?

Have you read about RSD/CRPS and surgeries, and possible spread?
But if a surgery is clearly indicated, then there are ways to do blocks, to help stop a spread. More detailed info on our RSD forum - We have a RSD/CRPS forum also.

http://neurotalk.psychcentral.com/forum21.html

I have been living with CRPS for two years. I have read everything I can get my hands on about CRPS. Plus I'm a nurse practitioner. My doctors and I feel that the TOS along with scar tissue from my original ulnar nerve surgery is aggravating the CRPS. Every time I start to get the CRPS under control either TOS or ulnar symptoms aggravate it and wake the beast. Plus I have an EMG that shows a brachial plexsis injury.

One of the only indications to do elective surgery on a CRPS extremity is if there is nerve impingement that is fueling the CRPS, and that is exactly what I have. It has been a long road to get to this point, compounded by the fact that this is a WC injury (and any one who works for WC should be forced to have their hand pressed against a hot burner on a stove for five minutes and then be told they can't seek treatment for the pain).

My current pain doctor is not that up-to-date with CRPS so I'm hoping to get an appointment with a pain doc at the hospital where my surgery is. There is a doc there that does both in and out patient so he can facilitate appropriate pre/post-op CRPS treatment as well as pain control.

I know that hospital stays are variable, but I was just curious how long other people have had to stay. I'm trying to plan ahead for childcare the best I can, so I'm just looking for other people's experience.

I haven't had TOS surgery but most mention anywhere from 3-5 days in hospital for normal time frame , as long as no complications.
But a lot of limitations & usually pain for a couple of weeks after you get home..

If you scroll down the TOS thread list you should see some titles mentioning surgery, they might have more of what you are looking for.
Sometimes weekends are a bit slow for replies..

I just had surgery this past Tuesday at Johns Hopkins. First rib resection. Surgery was at 8am, I spent the night at the hospital and left the next day at 1pm. No complications for me, no chest tube, no drain etc... Went fairly smooth, Doc said I was very muscular so he had a little tougher time getting to the rib. Wife said I was in surgery until 10:45 or so. I feel lucky so far, my pain is minimal compared to others I have read. I only received one dose of Dillaudid upon going into recovery, after that I received a dose of Tylenol later that evening and then again in the morning. I haven't needed any pain meds at home expect for the Motrin to help swelling etc.... What I have learned is that everyone's experience is totally different. Pre surgery I was very nervous and scared to have it done due to ready all of the stories of pain etc... Don't get me wrong, I'm sore and my armpit and arm burn in area but to me it doesn't warrant the use of pain pills at the moment.

Every so often we get one that can go home quite soon, and with minimal pain. that is great news.

just don't over do anything too soon.. hope you have continued good luck on your recovery.

I had surgery on Wednesday and went "home" on Friday. I was able to see the doctor for post op appointment on Monday and really went home the following Wednesday because I flew to Boston for surgery, but I am from Nebraska.

Hi Gigi,

It's good to meet you but I am sorry for the reasons why; I would not wish a TOS dx on my worst enemy! I truly hope that now that you have the TOS dx, you can be steered in the right direction and develop a tx plan that works for you.

You should know that it is not unusual at all for there to be a crazy amount of misdiagnosis before TOS is ultimately detected as the source of pain and neurologic deficit.

Very common among those misdiagnoses are cubital- and carpal-tunnel syndromes and even the tennis elbow you originally suspected. The ulnar nerve is often compressed or injured with a lower trunk brachial plexus injury (the most common type of injury in NTOS). The sx can totally mimic ulnar neuropathy at the elbow (cubital-tunnel syndrome), when in actuality, the source of compression is really occurring much higher up in the body - under the collarbone.

Many of us come to this forum having had unnecessary surgeries for something else, like your ulnar nerve transposition, for example. Do you know if the surgeon actually "saw" the source of compression once s/he opened you up for that procedure? Were the electrodiagnostic tests done before the surgery, or after (based on your still being symptomatic)?

It very well could be that TOS was the culprit all along and the sole cause of all of your sx. This might mean that you only truly have one thing going on, and that Dr. Donahue would be the best surgeon to treat you at this point. (I don't know anything about Dr. Lee, but I believe they are colleagues. Try using the search function to find posts about him on this forum, you may find some interesting results that can help you to make an informed decision going forward)…

At the very least, if I were you I would seek a second opinion from Dr. D before considering any more surgery at this point.

TOS can be extremely difficult to dx and I certainly don't want to discourage you about any surgery or treatments you've had thus far. I just wanted to alert you to the fact that you may have been misdiagnosed in the process of trying to get to the bottom of things. A review of all of your medical records in light of the TOS dx is certainly warranted, hindsight being 20-20 and all.

You are lucky to live in MA! And your story demonstrates for us once again, the importance of consulting with a top TOS doc. Dr. D is absolutely in that category; Dr. L may be as well; I simply don't know.

I wish you all the luck in the world as you strive to get a handle on your TOS, and to determine the best course of action going forward.

Myself, I flew to Denver (9 years ago) to have a L first rib resection with Dr. Annest, who studied and worked under Dr. Roos - the pioneer of the transaxillary approach for this type of neurovascular surgery. Even though I live in L.A. and had access to other top TOS docs, like Dr. Ahn, my research indicated that Denver was the place to go (for me) because the three top surgeons there (Dr. A, Dr. Brantigan and Dr. Sanders) offered much more in the way of aftercare. I was in the hospital for 3 days; OT and PT were started while I was an inpatient and then I stayed in Denver for 3 weeks to get daily PT using the best TOS protocol then available. Followed up with Dr. A at the two-week mark, to evaluate surgical results.

I do also have CRPS, but because of the extent of ulnar nerve damage in my case (L hand is noticeably atrophied, and weak) it was not a deterrent to surgery because the benefit outweighed the risk. Fortunately, I did not have any flare-up of CRPS sx due to the first rib resection - a fact which I attribute to the excellence of my surgeon, as well as the quality of aftercare.

Please keep posting here and let us know what is going on with you. You certainly have access to some of the best care around for TOS and in that way, you are blessed!

Take care,
Alison

Hi, could you please tell me exactly what the three weeks of Denver Post op/PT care involved?? Thanks a lot