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.

I was trying to figure out how to send a message, but it alluded me. You are the only other person I've seen who is close to being in my situation. I have shoulder joint instability, TOS and CRPS. The only potential way to get better is to fix the shoulder, but b/c my CRPS is out of control (b/c of the shoulder prob) no doc is willing to even talk to me, let alone operate.

I have no idea what to do either. I hope someone can give us suggestions.

I have a confirmed "double crush" syndrome. My original surgery was an ulnar nerve submuscular transposition 11/12. My doctor said my ulnar nerve was very thick and "stuck everywhere." Several months post-op I had a second EMG ( my initial EMG was 5 weeks post-injury and negative but in hind site was a terrible quality EMG) that showed brachial plexus injury plus slowing of the nerve fibers further down my arm. The first EMG did not check the brachial plexus.

The reason Dr. donohue is not the appropriate doctor for me is that I'm not only having TOS surgery, but re-exploration of the ulnar nerve and DeQuervain's release. My original surgeon sent me to Dr. lee b/c he felt I had TOS but also thought I needed the other surgeries too.

It's interesting that during my consult Dr. lee explained why this should be done by a hand surgeon vs. a vascular surgeon.

Thank you everyone for your help.

So I'm having three surgeries in one day and as of now the Dr.'s secretary told me I could go home the same day or maybe stay one night. Considering I have CRPS and am already on opioids it seemed pretty soon to send me home since I will probably have difficulty with pain management (per my PM doc and prior experience). I do see Dr. lee in 10 days so I will address my concerns with him. I was just curious what other people's hospital stays were like, and wether I was wrong in thinking this surgery as day surgery seems a little extreme.

Hey...I had a first rib removal on 16th September. I was discharged on 21st. So five nights. My surgeon had thought about three days but ended up doing a jugular vein turndown procedure while in there so I was pretty whacked after 8 hours under anaesthetic...

Happy to answer any other questions.

Jules x

Hi
POsted a few days ago trying to find out what recovering from jugular vein turndown procedure involved....any info you could give me would be amazing as I need to try and plan childcare...as well as work!
Thanks
jenny