Dear all TOSers: Please beware of TOS surgery. I am going to have to have a tracheotomy because my breathing is getting so obstructed from a collapse of my throat and neck--TOS surgery 2004 by G. James Avery at California Pacific Medical Center--see my website at www.sonic.net/bjj
Dr. Avery was so cruel to me after he paralyzed my phrenic nerve and winged my scapula again very badly. He yelled at me in the follow-up appt to "TELL ME WHAT IS BETTER" He accused me of not swinging my ARM enough after surgery-but how could I????? He damaged my scapula nerve so my shoulder blade just hung loosely--I asked him NOT to take my rib but he did so anyway. He had NO tests showing any problems with vascular or nerve function. These TOS surgeon are using us to make LOTS of money--and or to feed their professional or personal egos. This is NOT a surgery that is approved by MOst top doctors in the field of neurology and neurosurgery. PLEASE do all you can conservatively to improve your symptoms. UCSF STOPPED doing them. What about UCLA--is Ahn still cutting there?? What will they do with all the failed cases. UCSF tells me they just send them back to their primary care doctors. Why aren't the hospitals taking care of us NOW after they allow these surgeons to ruin us. WHY don't we demand the medical board make them. Now my throat/neck is COLLAPSING. I can't breath. I awake gasping for AIR.....CPap machine doesn't help.......What more will they take from me. Long term results from these surgeries is BAD--especially if they take the rib and the scalenes. One person committed suicide that I heard about after a TOS surgery and then a CAR accident. Think about it--they are taking out structures you need for your NECK. I wish I could put them all in JAIL now---Dr. Ahn, Dr. Jordan, DR. G James Avery....I wish someone would take out their scalenes and ribs and inject BOTOX into their necks and shoulder girdle muscles if that is what they have made most their money doing. God help us because they will kill us if we let them. How many REPEAT surgeries do you know of...each time patients getting in MORE pain with more problems after. God help us now. Triste

to hear of your experience. It has to be very difficult to be in your shoes right now. I can only imagine what you are going through, as my experience was very different.

My surgery was performed at U.C.S.F. just a year ago this month. Are you saying they no longer do the surgeries there? Because no one made mention of that when I went in to be seen post op. 3 months ago, and I am still reccomending the surgeon I saw when asked for a recc. I have had considerable improvement since my surgery, and am glad I had it.

I hope and pray that you will be able to receive treatment that will remedy the damage and ease your suffering. My husband had severe radiation burn after cancer treatment that required additional care that was painful, exasperating and infuriating as his Dr.'s refused to acknowledge his pain and injury for almost a year. He had a set back before Thanksgiving that was a cruel reminder of the horrible "treatment and care" he'd received. He will still require several weeks to recover from this episode, and then we will have to decide what course of treatment to persue next. So, possibly in that regard, I can somewhat understand what you might be feeling and experiencing.

I hope that those of us here at the forum can be of support to you. I hope that you will continue to visit this site and keep us updated as to
your situation and let us know of your progress, and also, if there is anything we can do to help/ encourage you.

Take Care,
G ~

Gromlily-Thank you--yes I'm very bad off- So sorry about your husband. There should be strict laws regarding doctors and aftercare for all things they do.
Who did your surgery at UCSF? Did you have a cervical rib? Did you have neurogenic TOS? Did they remove your 1st rib.
I had mine done by G. James Avery II at Calif Pacific Medical cEnter in San Fran and you can see what happened to me at www.sonic.net/bjj
I'm barely hanging on. Hope I can make a dent in this TOS profit game before I kick off as far too many are NOT turning out well. FAR too many. Thanks. Triste

Triste,
are you the same person on the old brain talk a few years ago taht ahd such problems with Botox? I remember someon that had a real complication, with a web site.

The only thing I can addd, along with deepest concern of your problem is that there are people that have used Botox and it actually keeps them working. I would not use it, my daughter has used trigger points with marcaine, but my son has a consult with an area top PM to evaluate for Botox. Dr. Togut under certain circumstances uses it, several doctors in Phila area have, and I never talked with patients of this doctor yet.

I know bad results can be devestating. I worry of what are the contra indicators not to use Botox, where is a bad placement, is there a manufacture that ahd had problems, is there a date for expired not to use by, did a batch of botox have problems in it...all sorts of questions.

My daughter ahd two TOS, Two carpal tunnel and a breast redcution. My son had tons of shoulder injections and diagx before he finally had several doctors confirm TOS. The most recent was the thoguht of Botox...As a mom, I think the problem of escalated pain is the care of a baby. He is primary care giver as he wife works full time. The little man is now bigger and more waight although he does get around with walking.

I suggested he use the umborlla stroller all the time, inside and out, to change him on the floor instead of lifting to the changing table, dress him and feed him on a lowered highchair instead of a high height on the chair.

Lidoderm patches and pillow on the lap when driving. This and the hot tub brought him out of a flare up...
I think he is looking for the "cure". The thing that makes it all go away.

I do hope you find relief,
Dianne

I have seen Drs that were posted in threads that were not covered under the Drs. Sticky List at the top of the thread page... it is difficult to find/monitor all threads for new doctors that need to be added to this list and I ask if you would send this info. directly to me via. a PM to DDayMBB,
when doing so I ask that you provide Drs, name, specialty, address, phone number and E-mail address if known thank you DDayMBB it would make it quicker and easier to get it up on the board quicker also one other request is to make sure the Dr or PT you want added is not already up on the board, unless there is a change of address, phone number etc. again please PM this info. to DDayMBB


~~~Mark-n-Goober~~~