I just want you all to know my story about Nerve surgeries, TOS surgeries and especially about NERVE and TOS surgeons. My website is www.sonic.net/bjj
My 1st surgeon was Dr. Rahul K. Nath in Houston Texas. He finally is getting his due. His surgery on me was completely UNNECESSARY and started a terrible pattern for me of trying to correct surgical damage only to get MORE surgical damage. I would have stopped, but after I was cut in the front right side of my neck, I was never the same. I strangled for months after my first surgery with a SEROMA in my neck that buldged out and was hard--but my surgeon, Dr. Nath told me I was fine in an email and he went on a cruise. Today, he and his partner Dr. Shenaq are getting their due--which is explained in the article below. I hope it is OK to post an article from the Houston Chronical that was sent to me.--My website tells the rest. The last surgery I had was in 2004 by Dr. G James Avery. It was the most mutilating of all the surgeries I underwent. I signed a paper in Dr. Avery's office telling me that there was only 7% chance of Phrenic NErve damage,---Yet, Dr. Avery PARALYZED my PHRENIC NERVE. The paper also said there was only 1% chance of Long thoracic nerve injury--yet mine was injured as you can see how badly my Scapula wings after Dr. Avery's surgery . I also believe I have Brachial Plexus and Sympathetic Nerve injury--as I awoke from surgery, barely able to get a breath, unable to open my hand--which still today feels like a tight claw, numb across my chest and shoulder still today, and unable to find my nose in space with my R arm. I was in the hospital 3 days in horrible pain unable to roll onto my side and knew I was in severe trouble. Dr. Avery took out my first rib and TOO much fascia from my neck. My collarbone has dropped and my neck muscles have wasted away. The fascia pulling downward on my neck is so tight I strangle every day, I aspirate, I have trouble swallowing, I awake paralized in both arms every morning, drenched in pools of putrid sweat since his surgery. Dr. Avery came into my hospital room on the 3rd day and whispered in my ear so no one could hear him but me. "When I get back from my rounds I don't want you here." I was devastated and left the hospital telling the nurses what he told me--in such terrible pain with such trouble breathing I feel that Dr. Avery should be put in JAIL. I went to 2 follow-up appts before never seeing Dr. Avery again. He yelled at me to "TELL ME WHAT IS BETTER", he accused doing the wrong thing by resting my R arm with it's hanging scapula in a velcro strap i put around my waist--because my arm was in so much pain i could not hang it down for long. He WALKED out of the follow-up appointment after I said to him--"If you are going to yell at me--I need my neighbor to come in from the waiting room" and when she did come in--he walked out and REFUSED to renew my pain medication. To all of you hear contemplating this barbaric surgery. It can END your life--and the suffering before the end can be your worst nightmare. BEware of TOS surgeons especially if they tell you how GOOD they are. Article about Dr. Nath and Shenaq will be on next post. Thank you.

Hi Triste, and thanks for this post! It's important for us TOSsers to have ALL the information - be it good or bad.

After reading the article, and your story... I am horrified.

(((((((prayers for your recovery)))))))
Anne

Hi Tristie,
I am so sorry to read of your complicated issues with TOS, injuries and surgery. A few things come to mind; when the surgeon does the pre-op, he has to give informed concent. Not only the types of problems that could arise, the percentage, he can tell you ahow frequently in the first surgery and how in the redo's it is a much higher chance as the phernic nerve is not longer virgin laying in the scalense, it has likely migrated by gravity toward the spine. So it is chanc'y doing cleanup and the hidden phernic can be cut.

I understand also several doctors, if there are symptoms, or some just will do a sympathectomy. One in Dallas does, it is not Dr. Nath.
I am surprised that Dr Nath took you on, he is not considered a Thoracic outlet Brachial plexapathy doctor by any prominance of his own speaking.

I saw him, and he noted that the guys in Denver are surgically into areas he is not in their expertice to venture, nor desires. He seemd to only do a realese, perhaps it was th long thoracic, never got that far. But, my daughter with a history of thoracic surgery he would not offer her any help. She is too far into things.

Again, with informed consent, the Dr. has to tell you what the odds are and how treatment will be taken if the bad does happen. Let you know if there is a history of the phernic being injured, or other complications. How often the doctor had that happen and what can be done if the complication happens. All doctors have had something sometime in their career go wrong, the great doctors tell you what that is so you are prepared for the worse.
I know of one top doctor that not only cut a phernic on one side , but also did the other one too. Although, he never reveals it in informed consent. He also will do a sympthectomy if he feels there is involvement of RSD. There were unfortunate patients that had this difficulty, by other doctors.

Consulting and having a great deal of knowldge means that you are not at the hands of the doctors expertice, you have your own and can make a good decision. Surgeons are that, they do surgery! Always have a second opinion. Don't go by gut reaction, do homework, and if it doesn't sound realistic then take your time making a decision.

The only thing I can suggest is finding an attorney that handle medical negligence, get all your records, see a top specialist that can review and give you an opinion to your options. I know in the cases of pherenic nerve paralysis there was litigation.

Some people just have bodies with anomolies that are real bad, and the surgeries if they have bad outcomes, live trying to find relief. It sounds like your body is creating a lot of scar matter entwining the brachial nerves that they have been do a clean up on.

I will read more of your history later. I was looking for the article though, is there a link.
TOS surgery by any surgeon should NEVER be told of as a cure...if they do say that, RUN! However, in some cases ther is improvement to a life in disaster of pain.

Many surgeons are trying to find less envasive ways to treat, and also not doing surgery on neurogenic. IF there are C-ribs, vascular problems etc, they have better results.
Now, that is my opinion, not from any peer medical article, just from reading and asking many specialist a lot of questions, and meeting hundreds of TOSers over the last 10 years.
Dianne

ps: sorry for typos, my hands are mess, I am trying to get the last of housework and cooking done before guest come.

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~~~

Dr. Avery told me on this written consent form that if I had surgery before there was a 1% increase per surgery in chance of damage to phrenic nerve.In my opinion that is a STUPID statistic , and means nothing.
So that might bring my chances up to a whopping 8 %. He told me he had done 25 prior patients. He told me none of their post-surgical problems were permanent. I believe he told me of at least 2 winging scapulaes and of another phrenic nerve problem. If he had only done 25 prior to me--then what % is 3 out of 25 for winged scapula? and at least 2 out of 25 for Phrenic nerve paralysis. I believe both are higher than the % risk Avery gave me--and I bet if his records are looked into he made more errors than I list here.--Scares me that UCSF told me for neurogenic TOS cases they are sending them to Avery at CA Pacific when I called them 2 weeks ago. Also the emotionally cruelty he exhibited in the hospital and afterwards. (his wife is this sweet younger gal, who works for him on patient and office matters) She tried to cover up for him after he yelled at me in follow-up and REFUSED to refill pain meds. She called me at home and told me it was just "hard for him" when things didn't go well. What a JOKE. HARD FOR HIM---so he kicks a his patient OUT of a hospital and deprives her of PAIN RELIEF?? That is NOT the sign of a caring physician.
Please put on the sticky list....You already have his info on your other list. Thank you. Triste--my injury website is www.sonic.net/bjj Avery was my last and worst surgeon. Tho-character wise Nath and Jordan run close seconds.
No, Nath so far has not ventured into TOS surgery that I know of--he does children born with birth injuries of brachial plexus damage, muscle transfers and more--and any adult with same that he says he can help..He is a PLASTIC surgeon--who I feel has violated ethics of a physician in the way he solicits patients and more. Triste.

double post

Triste,
Unfortunatly in my opinion; at the point he said he did 25 TOS surgeries, I would have thanked him for his time and had a second opinion or third with other doctors.

It maybe that your body had anomolies and scaring your surgeon was not use to and was in over the head. In TOS surgery, you have to test every structure for nerve activity before you snip. If there is massive scar matter, gray or whitish fibrous matter entangled, it is difficult even for doctors thave done hundreds of surgeries.

After having surgery with a doctor that ran into problems and it was so much over his head he just closed up, and/or continued and hoped for improvement this creates a very difficult situation for other doctors to try to help the clinical finding they run into.

Personally, by the time the findings say TOS surgery is the only thing to help, "with neurogenic TOS", as I said, personally, I think it is too far gone. All you can hope for is to clean up scar matter and disentagling it from nearby structures as the cervical nerves of the brachial plexus and see if that helps.

All doctors have had some problem at sometime in their career. They would have to. But, whether it is the problem of the bodies own anomolies, such as weird wiring, mis-shaped or placed muscle pattens, scalense that have vascular or neuro bundles coming through where they shouldn't, extra ribs, mis-shaped ribs, or collar bone all this adds to the complciations. IR is it doctor negligence, or did he just get into a surgery he could not help?

Especially with the pherenic nerve. This nerve trypically lies against the scalense structure. With scaring, previous surgery, who knows where it migrates to. In my daughters second surgery it could not even be located amid the scar matter and its migrations toward the spine someplace.

The surgeon, took an xray to watch the lung reinflate to be certain it was nt injured and only then could sigh a breath of relief. We knew the risk, but so much scarring it just had to be cleaned up. Her lung and pherenic was fine.

The post about Ahn, I don't know much about him...but, in our area a few doctors have found money in opening their own surgical centers....They leave hospitals and are know on their own, or with others doctors there.

I know that you have had a huge problem with surgery and botox. Not everyone does. It is good to understand that those that ahd problems what they were and how the doctors deal with them, but be careful. IT isn't healthy for you to be stressed, braced, and emotionally on peak .


I asked in one of your post were you the same person on the Brain Talk forum that posted pictures and complications you had with botox?
It has been a long battle if so.

To heal as much as you can, focus on your needs. A plan for each day to get the max out of it you can.
A shower to loosen, a good pain management or pain pump to help with taht. Maybe McConnel taping for your wings, even biofeedback. I was amess with stress over my family problems and my own accident and TOS that caused me to lose my career and have to retrain.

But with a great Psych, I found a new life, I morned the old one, had a lot of anger for years how it was stolen. I didn't forgive....but I did learn to go on with the new life and get out of every day what I could.

I truely wish that you can find some help, it sounds like such a tough situation.

Dianne

Dianne- It does no good to tell me what I should have done. I was disabled at the point I saw Avery YES, from the JORDAN BOTOX. I am the same person. I've been "s-------with"more times than I care to count by just "trusting" the surgeon or doctor.
I told Jordan PLEASE do not paralyze my Trapezius with BOTOX--and he made fun of me--saying I'm not going to paralyze anything "just take a little spasm out of it." He paralyzed it!----as far as Nath goes...I imagine he has helped some patients, but he also lies about results. He showed up on our "winged scapula" website after I was injured and began to say he could FIX winging of the scapula. I chickened out of my first surgery. But then, while in his office he said an appeals nurse from my HMO called their office to call me a profanity. He said he would not let that go unaddressed. I truely had NO experience with surgeons. I thought he was incredible--cuz NO ONE ever stood up to my HMO the largest in CA. So my surgery was instantly approved. I came home, thought about it--again I had winging but a normal EMG---Nath said that happens a lot--others top in the field later say he is wrong. Nath's surgery did NOT help me and was the beginnning of Neck issues,(I do not believe I had any injury that would have been fixxed in the brachial plexus) but I was naive then--and other entrapments from Nath's surgery and probably TOS -type symptoms-but not true TOS. Anyone doing work on nerves in the brachial plexus is doing the same thing-(some much more skilled than others)-trying to free up entrapped nerves--but what about scar tissue??NONE of them tell you--that the bigger the hole they make the more scar tissue will be there. So do I let someone else go in like you propose to take scar tissue off??? Won't that just create more?
No one will ever go into my neck anyway as it is collapsing from what Avery did. All I have left is time and suffering. My airway is now getting blocked--and my time I fear running out fast--my neck structures are shot, half gone and the rest dysfunctional, and atrophying. My town of doctors here in Santa Rosa are literally murdering me via neglect. NO ONE even helps me to breathe. I am being murdered to cover up a very BARBARIC criminal surgery. all these guys stick together. That is my opinion and that will be the basis of much of my article if I can finish it before I give up. Thanks for your concern. I remember you too. Best to your daughter. Triste

Hello Triste and Welcome to NeuroTalk.

As with all the wonderful caring and supportive members here on TOs, I wish you had never had to find us. But we are here for you.

I am so very sorry that you have had such horrendous and devistating experiences with your surgeries and doctors. I'm sure you have read over the years of many different outcomes from these surgeries. Some bad like yours and other had varying degrees of success. Not everyone's outcome will be the same, since each person and their injuries are different.

How can we be supportive of you Triste? I would like to get to know you.

gentle gentle (((((((hugs)))))))

Curious

Hi Triste, I'm so very sorry that all this has happened to you. While you feel abused and experimented upon, also keep in mind that your experiences - as horrible as they are - are VALUABLE to the others here! I thank you for your posts and your blunt honesty.

These surgeries can have varying effects. Some good, some mediocre, some bad. Everyone should weigh the benefits against the pitfalls before undergoing a rib resection or other TOS surgery.

I foolishly trusted a Dr (not experienced with TOS) for my 1st surgery. He swore to me that he could handle it, but when he got in he realized he was in way over his head. I'm lucky in that he didn't start hacking away on me just to save his reputation. He did however 'stretch' things in there. I'll never know if that is what's preventing me from a more complete recovery. His inexperience left me with an ugly scar and a nerve in my arm so badly damaged that it had to be resected. I'll never feel my upper right arm again. Thanks Dr Alvarado.

Many prayers going up for you Triste. Can a cervical collar be used to help support your neck? Would something like that help keep the airway open?

(((((((((caring, easy hugs))))))))
Anne