Originally Posted by Simurgh

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.

Originally Posted by Eight

I'm really sorry that happened to you. Question though, did your shoulder, arm, hand stop hurting at least?? Like, if that does happen to me, will I at least not hurt??? Reaching for a rainbow...

Originally Posted by Sea Pines 50

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

Originally Posted by richsch

hi, hope this is the right place to write, i was seen at the royal london hospital by vascular surgeon mr kyriakides and his team, they were pretty clueless, also st. thomas hospital by a vascular surgeon, worse than clueless, and by a neurosurgeon at kings college, didn't have a clue either, but one of them did refer me to mr rix a vascular surgeon at buckland hopital in dover, kent, he knew what he was talking about, the fact that tos is split into three parts, arterial, neurogenic and venous, and the fact that the arteries, veins and nerves can get trapped by particular movements and not be trapped all the time, which could lead to anurisms and embolisms, what is the cause of your dvt? and what surgery is proposed? hope this helped...richard

Originally Posted by Simurgh

Dear Richard,

Thank you so much for your input. I was seen by Harpaul Flora at RLH (he also works at St Barts) and he suggested I do the surgery - basically 1st rib resection. He said he would try to avoid nerves as much as possible and just clear the passage for the vein.

That was the first opinion I got. After that I gone to Dr Ian Loftus (somebody on this forum suggested him). He works at St George's hospital and he also works privately at London Bridge Hospital. First time I saw him privately and now I am going to see him at St George's after I do venogram.

I did ultrasound and MRI and it seems to be that my veins are perfectly fine when I lay down. There is some compression when I stand up, and then by moving my hands backwards it actually becomes a bit better.

None really talked about neurological TOS or arteries. They said me though the both arteries looked fine on MRI in either position. As my blood screen is fine, they suspect that the cause of DVT is this compression and the fact I was exercising and running a lot at the time I got DVT. Also my vein fully patent now (although they never did thrombolysis, but only gave me warfarin/xalerto that I still take).

Honestly I have no idea how to make a decision, as I am perfectly fine. They said if I go without anticoagulants I might be at risk of getting another DVT.