hi all, i posted some threads last year about being diagnosed with a & t tos after four years of pain and being bounced around from so called specialist to specialist, i was so happy that someone actually believed me and so decided to have the 1st rib resection which was done on 25th of november last year, unfortunatly when they opened me up(they went in under left armpit)they couldn't see a lot so the surgeon decided to go ahead anyway and literaly feel his way around, he got about 3inches of rib out and then came across what he thought was a fiberous band, this was infact my bracial plexsus, which he cut through, the result being pernmanent paralysis of my entire left hand and most fo my left arm, i had an exploratry operation by the periferal nerve injury team to confirm this, I'm not saying that if you have tos dont have the operation, just let the surgeon know about this and if he can't see whats going on, make sure he stops before any irrepairable damage is done, thanks for reading and hope all goes well with whatever you have got...richard

I hate that happened to you. I've been contemplating having to have this surgery as well. I have a non union collarbone from an accident 10 years ago. This has caused by anatomy to shift. Which I believe lead to my venous TOS. I'm working with a vascular surgeon that I didn't particularly like when I first meet him but he's starting to grow on me. They've done thrombolysis on my subclavian vein and some of the collateral veins I've developed over the years and its made most of symptoms subside. I'd say I'm at 65 to 70 percent symptom free. I do have some discoloration when I use my arm more than usual but I am of the understanding this takes time to go away. If it goes away completely at all. My swelling is much better. I have a followup ultrasound this week to see how open my veins have stayed. I'm almost certain they are going to recommend life long anticoagulant treatment if I don't have compression relief surgery. To be honest, I'm really not that concerned about that part. I just don't want to get worse from the surgery. I read all the horror stories about surgery and I get concerned. I imagine you hear/read more about the failures and not about the positives.

Thanks for sharing. I'll pray for you.

Was it a experienced TOS surgeon that made that kind of mistake?
Or maybe a younger surgeon in training?

I can understand if you prefer not to name any names..
but it might be helpful for others to be aware.
Perhaps just the state or city?

I do you you have some recourse with that kind of error...

I am so sorry this has happened to you! What a terrible mistake. Is there anything that can be done to fix this?

Dear rich, I am so sorry that happen to you.
I hope that after all something can be done to improve the situation.

I noticed that you are from UK. I live in London and was seen by 2 vascular clinics - Royal London Hospital and now St George's Hospital.

At RLH they suggested me to have the surgery on both sides as I had DVT last year and there is some evidence of vein compression (MRI). Doctor at St George wants to do more tests.

Any input on which doctor or hospital to avoid would be of a great help.

Btw apart from the last year DVT, I have ZERO symptoms. No pain, no tingling, no discomfort, arm is perfectly recovered after a few mouths... Have no idea what to do. Doctor at Royal Hospital said I am risking to have another DVT without surgery.

My situation is similar to your situation. I had a second DVT event in my left arm in December. I can tell they can not tell you the clot is gone without at least a ultrasound. They can't tell you how bad the clot really is without a venography. I found out I had a chronic clot that may have been there for years. My collateral veins were carrying the load with very little symptoms. Just some swelling that I could tell. I thought it was mild carpal tunnel and ignored it. I had some collateral veins get clots in December. At least that is what they think happened. They tried dissolving the clot and it closed right back up but it helped my collaterals. My left subclavian vein is completely occluded.

If you haven't gotten a ultrasound to prove your vein is now open, then ask them to do a ultrasound. My surgeon told me that if my vein would have stayed open, he would have recommended surgery so it would have a better chance of staying open. He just wants me to wait now and see how my collaterals work and what symptons remain over time.

Just my experience and I'm not an expert.

Dear Sundance,

Thank you for your reply and I hope your symptoms get better and you don't need a surgery.

I only had one clot that happened more than a year ago. Since then I am on anticoagulants. I did ultrasound on many occasions and they told me my vein is open with just minor residual.

I also did dynamic ultrasound where they tried to see if there is compression. In certain positions they can see some compression. For example when I am lying down there is no compression at all. When I stand up there is some compression and when I rise my hands the compression actually gets better (which is a bit weird).

I am doing venogram next week and hopefully they will know more. For me the hardest part is that I really have no idea how to make a decision. I am perfectly fine now, no symptoms at all that I can tell. But if there is some vein compression should I still do the surgery.

Don't even think about it till after the venogram. You'll know a lot more after that. They can tell if you have vein scaring and how bad the compression is. If you do have 1st rib compression, then should be able to se exactly where your first rib has been compressed by the rib. My doctor showed me the exact spot. It showed up perfectly when they had the ballon in my arm and took the x ray.

I know its dishearting going through this. I think about it all the time. Even when my arm has no symptoms. Keep your head up and get your mind on other things. Its extremely rare that a clot moves. My has become so fibrous that it took a LONG time for them to get small wire through it. I have vein scaring that would require a vein bypass they I don't know how successful the surgery would be. Right now, my symptoms aren't that bad. I have some pain but it does good with just Tylenol. I can't use my arm like I use to use it but I've been blessed in the fact I don't need to much anymore. I realize that I'll probably never pump weights our even try to pickup more than 5 with it again. if my symptons get worse I'll probably go for the vein bypass.

If the venogram shows little scaring and just a small residual clot. I'd personally at least get the 1st rib removed. I don't think I'd do the complete muscle division unless the venogram shows compression by the muscle. From everything I've read and studied, it's the best option for long term results. Again, I'm not an expert and who really knows. Just my thoughts and some of my experience.
Either way, I pray the Lord blesses and helps you.

Richard,

I am so sorry this happened to you and I hope by now you have found an excellent malpractice attorney, because your surgeon and his team are legally liable for the damage done to you during your first rib resection (in my view at least).

The competent thing to do, once he realized the state of things would have been to get out of there as quickly as possible and close you up forthwith. Not to try and perform neurolysis by braille; good God, man!

Was this your Mr. Rix? What was the issue with visibility anyway, do you know? Poor lighting? Did they not have use of the proper equipment (I forget what it's called, at the moment) to pry and hold you open for the duration, precisely so the surgeon could see what he was doing, where everything was located and perhaps most importantly, be able to move aside and/or avoid certain delicate structures (phrenic nerve, LTN, BP) as warranted during the operation?

If I were you (and if you haven't done so already), I would contact the records department at the hospital where you had your surgery done and request copies of the surgical report, office exam and any other notes or records they may have. Do the same with your doctor's office, maybe, just to make sure you have everything. Then, no more contact with your surgeon… find the best attorney with experience in this area to advocate for you. You will need continuing care, of course, as your health is the most important thing. A lawyer with medical background should be able to refer you to some new specialists as well. (At least, that seems to be how it works in the States… )

Of course, I'm not familiar with UK law but over here you would have a strong case for medical malpractice, and possibly also a product liability case if there was equipment failure involved in the harm this has caused you. You could be entitled to a lot of money damages due to the severity of your injuries. My hope would be that that could help turn your prognosis around, in time.

I remember how excited you were when you finally got your TOS diagnosis, Richard. It's a real shame that you were butchered like this. Sorry to use such harsh language, but this just makes me angry. Doctors have such huge egos sometimes, and cannot or will not admit it when they're in over their heads!

Really reinforces the importance, for all of us, of seeking out the best and most experienced TOS surgeons we can possibly find if push comes to shove and we do find that our pain or other symptoms have become unmanageable, and that we need TOS surgery in the hope of reclaiming some quality of life.

Please stay close and let us know how you're doing.

Alison

Richard - I am so sorry that this happened. Thank you for coming back to the forum and reminding us all how serious this surgery really is.

You might want to take a look at the United Brachial Plexus forums. Patients w/ complex brachial plexus injuries discuss their experiences, treatment options and doctors. My understanding is that they may be able to restore some function for some patients, if reconstructive surgeries are performed within an appropriate time frame post - injury. I hope your case is one that can be helped. Best wishes.

http://www.ubpn.org/forums/3433
http://www.ubpn.org/forums/3433/13035