Dr. Bitan in NYC...anyone have information?

[Katie]

On the advice of another member of the forum, I sent my MRIs to several other doctors in the States, including Dr. Fabien Bitan in NYC, and Dr. Bonati in Florida. Both answered me very quickly.

Dr. Bitan called me with urgent news; it corresponded with the doctors who recommeded DIAM surgery in my lumbar and ADR in my cervical area (C5/6) (see other thread). Dr. Bitan and three others all said that my cervical 5/6 needed urgent attention, that I am risking quadraplegia and other problems if I leave it much longer. Now one doctor telling me that is bad enough, and maybe questionable, but now four...three at the first hospital in Mumbai and now Dr. Bitan.

So, I decided to bite the bullet and go see him on this coming Monday. It will be about an eight hour drive, so it will probably involve staying away from home two nights, but that is a small cost compared to waiting three months for a Canadian doctor to see me, and I think he only does lumbar. I've been waiting since last July to get an appointment with a local neurosurgeon, that my neurologist was supposed to refer me to. Not only did I not get an appointment yet, I haven't even gotten a phone call to book one.

It amazes me that I can call a surgeon on a Friday in the States and see him on Monday, or any day next week really! Our system is so broken!

Anyway, I would appreciate any feedback on this doctor, good or bad. It seems that a lot is happening in a short time, finally.

[Kathy]

Katie, I have heard only great things on Dr. Bitan. You can go on the Charite website and there is a link to a video of Dr. Bitan doing a Charite ADR. It is really interesting to watch... a little weird thinking that they will do it to. I hate blood and stuff; but I wanted to know what I was signing up for (not like I had much choice, ADR vs. fusion, either way, I needed major surgery).
I have never heard of the surgeon in Florida. I used Dr. Rolando Garcia in Aventura, Florida. He was the first surgeon in Florida to do an ADR. He is the co-inventor of the Active L disc (the other inventor is the head of spinal orthopedics at Yale). I really liked Dr. Garcia, he is a very intelligent, yet humble man.
You are light years ahead of where most of us were in this stage of our back issues. I am just amazed at how you are getting things done! You are doing EVERYTHING right. It's amazing what you can do, when you set your mind to it.
Oh, is Dr. Bitan looking at your c-spine? I hope you can get your surgery soon, I know that must be scary.
Praying for you,
Kathy

[Katie]

Yes, he said he would like to do a consult in person, not just over the phone & with my MRIs. I gave him my symptoms and he was very efficient and kind at the same time. I was more concerned with my lumbar, as that is where almost all my severe pain is....there are days when my neck throbs badly, but only if I am at the computer too much or looking up too much...don't ask...swatting flies...

He said my lumbar is the least of my worries...he wouldn't even discuss it actually, spending all his time on my cervical issues. He said he could do either fusion or ADR, with fusion giving the inflamed tissue more chance to heal, in his opinion, but the ADR giving more movement.

His fees would be way out of my league, I think. Fortunately, I think I can get it paid for with our provincial medical. With tons of research, I found a past case similar to mine, where the Ontario patient could not get treatment at home within 52 months (I've been waiting almost three years), and went to see a surgeon in the States. That doctor said his cervical level was critical because of the severe compression of the spinal cord & the flava ligament.

The patient applied for funding, was denied, but went ahead with the surgery anyway. He appealed, and won the case and was reimbursed, because he faced permanent tissue damage or death because he couldn't get treatment here within a reasonable length of time. Ding, ding!

So Dr. Bitan said that he would need to see me in person to write a letter of necessity so I can get this paid for. A precedent has been set, so I am hoping for the best. If nothing else, that letter would also let me release the locked in pension funds I mentioned in another thread to get this done elsewhere, if it turns out to cost too much with him. I'm trying to cover all bases.

It feels like a golden day, somehow.

[Katie]

Kathy, I forgot to say thanks for the information re: Dr. Bitan. I'll go look up that site now.

[mmglobal]

I've known Dr. Bitan for years. I've written about him many times, but I think the best thread is here http://www.ispine.org/forum/ispine/4...tner-janz.html... (especially little stevie.) He's a good guy and a good surgeon. I've had several clients do surgery with him.

All the best,

Mark

[Terry Allen Blackburn]

Katie:

I am thrilled that you are going to be seen so soon. Your situation sounds like it is rapidly deteriorating to the detriment of your overall well being. I am hopeful that he will write the letter for you and get you fixed as soon as possible. It would not surprise me if he does not ask you to stay and have the surgery right away. I don't think that he will want you to risk traveling all that way home when you stand at such great risk of permanent harm. Personally, I would come prepared to stay. Just my opinion.

Good Luck.

Terry Newton

[Katie]

OMG Terry, don't do that to me! I'm having a hard enough time trying to find a farm sitter on such short notice as it is, for just three days. We might have to take our dog with us, if we can only get the neighbour to feed the horses and cats instead of getting someone to live in. Thank heavens his shots are up to date and he loves the car (The dog, not the neighbour )

Kathy, thanks for this "You are light years ahead of where most of us were in this stage of our back issues. I am just amazed at how you are getting things done! You are doing EVERYTHING right. It's amazing what you can do, when you set your mind to it." I certainly don't feel like I'm even up to speed, let alone light years ahead. I have watched so many people trot off to Stenum in the past year, and come back with wonderful results, as I sat here waiting for a doctor to phone me back...and waited...and waited...

I have spent all my energy for over a year, trying to put together an appeal for the Provincial Insurance to pay for that trip, and now, with it just three weeks away, I may have to put in a new application for Dr. Bitan. If he is able to provide me with evidence that I need this surgery that will over turn the Provincial Insurance, then I will go with him, especially after the reviews I have gotten here. (Thank you everyone!) It has been a full time job, but I think it has been worth it. The Appeal Board said I was a well know name at their office...that it was a 'very active case'. For every snorky letter the Insurance office sent out, I sent ten back It's not over, but I've learned lots; even if it doesn't work out for me...at least I may be able to help others.

A special thanks to Rosy, who showed me the light...she has been giving me the names of all these doctors over the past month or so, and urging me to contact them. I had been on a one track mission for so long, I hadn't looked at other options, not thinking I had any.

This website is a godsend. Without it, I would still be struggling along on my own, trying to research things on the net with the few hours a day I could stand sitting. You have turned into such good friends, all of you. I think we should plan a get-together some day soon to celebrate our successes.

[Maria]

The reason you are being fitted in so quickly is the urgency of your case. Glad to hear it sounds like you have your bases covered or are able to get them covered re funding for surgery however it has to be done.

Good luck. It sounds like you need to prepare yourself for surgery in the very very near future. Travel safely.

[sahuaro]

I am just catching up on posts and have read your other thread and the progression of thinking about how to proceed. It is amazing--and I must say, you are amazing in your thoroughness! How fortunate that you did contact Dr. Bitan! Wishing you well in your trip to NY--I hope he can provide what sounds like very needed treatment.

[Katie]

I can't sleep...wonder why.

This is starting to make me angry, yet again. If every other surgeon on the planet who has looked at my case is sure that I have an urgent issue, then why has 'my' system let me down so badly?

I've had two CT scans, two MRIs, all cervical as well as lumbar views, as well as a full set of xrays, all angles, over the past three years. Not one doctor here has thought twice about it, nor followed through on any treatment. I've had five appointments with three doctors, each lasting about ten minutes, with each one dismissing ADR as quackery and saying there is no other treatment available for me.

No discectomies to investigate facet pain, nothing except a few steroid injections for pain from my pain management doctor, plus almost sufficient pain medication after a year's wait before finding her. The rest I could gladly toss off a cliff. Has anyone successfully sued for damages when a case has been bungled this badly?

Not only that, but the so called experts in the Insurance office who work for the Provincial government have made it their job to minimize my case. When I found that other case in the Appeal Board archives, the one that was so similar to mine, which had been overturned and awarded to the patient, the Insurance agent, an old fart of a doctor who had spent most of his life behind the Appeal Board desk instead of practicing medicine, deemed that I was over exaggerating my case and asked that it be dismissed. Such an expert on spinal issues.

He found another so-called expert, Dr. Hamilton Hall, who was the foremost Canadian expert because he wrote a book on back problems..."The Spine Doctor". His main theory was that most patients were Workman's Comp clients who were trying to rip off the system and/or dope addicts. This idiot basically said I was a hypochondriac, and recommended treatment that included "being taken off all ineffective narcotics, and going to a well structured program of behavioural modification and cognitive restructuring". It continues to say that "recognizing that the appellant's conviction that multiple disc replacement is her only hope of recovery, such a pain management approach may be impossible to initiate and carries a high risk of failure. Obviously she is not a surgical candidate and a further delay will not lead to any irreversible tissue damage."
Translation: Since she is obsessed about getting ADR she is a hopeless case.

Their main line of defense is that multi-level disc replacement is not done in Ontario at all, and therefore is not an appropriate treatment for a person in my condition.

Meanwhile, I contacted the Government Office of Access to Information, the Privacy Commission and received confirmation that over 130 ADR have been done in Ontario over the past five years, and over a dozen of them have been multi-level, including cervical.

I also found a 2006 report put out by the Ministry of Health, that recommended that ADR surgery be increased by 5% for spinal patients per year, up to a minimum of 300 each year, instead of less than the present 10 or so.. One hand of the Health Department does not know what the other is doing! It went on to say that 79% of ADR cases had a greater success rate than fusion, etc.

If this is not enough to win my case, along with dozens of documents from PubMed over the past four years, defending ADR, I don't know what will be.

I recognize what the Insurance Board is trying to do...wear me out and get me to quit. But they don't know who they have taken on. As far as I know, I will be the only patient in Ontario who will have had their ADR surgery covered, if I win. Maybe in Canada, although Rosy thought that maybe one other had won their case eventually. I just want to open the flood gates for others who are worse off than me and don't have the energy to fight for their rights, who are too sick, or not able to access a computer, whatever the reason.

I am lucky enough to have a wonderful husband who has supported me throughout this whole ordeal, even though it has consumed four out of our five years of marriage. On the night he proposed, at a formal Naval Officers Valentine's Ball, he almost had to carry me out when I had a sciatic attack, and never got one dance, his biggest regret. I truly married a prince, and he deserves so much more than a disabled wife who can barely smile, let alone dance.

I can't wait to give him back the wife and friend that he deserves so much. We are determined to make this work before the summer is over. With just a little luck and prayers from all concerned, it may just come true.

Sorry this post was so long...I just had a lot to get out, especially since I am not able to get my beauty sleep If you have gotten through all this, you deserve a medal

[Katie]

Do you really think he will want to do surgery that quickly? But getting the answer to my application for surgery may take months, if they approve it at all.

At least he can break the deadlock between ADR and DIAM....I hope. How many other appliances out there can they throw in the mix? Or do I want to know the answer to that????

[mary.mary]

Where in Ontario do you live?

[Katie]

I've sent you a PM

[mary.mary]

Katie,

I have to agree with you that our system fails us TERRIBLY!! People who have never had to experience our system to the extent that you have will NEVER understand what's so FRUSTRATING!!

I had my injury in November 08, started physio in December, had an MRI in March. IF it wasn't for the incident that happened the other night that brought me back to the ER in EXTREME, CRUSHING PAIN and the fact that I happened to have an ER doctor who actually cared and showed concern for me which in turn made him investigate my situation and actually look at the MRI and follow-up with the report etc... I don't think I would be anywhere CLOSE to where I am now. The ER doctor was the one who made the phone calls to the Surgeon to see if there was ANY possibility of me being seen at his Tuesday clinic in the near future, even he thought it might have taken 3 or 4 weeks, which as you know is FANTASTIC time for a 'specialist' here in Ontario. He also did not let me leave the ER until he was convinced that my pain was under some form of control and that I had someone to help me with Amiah that night.

When I left the ER and they told me that they will call me when they have an appt time, I KNEW it was going to be a couple months before I heard anything let alone an appointment time. I know people who have waited over 9 months for an appointment with a specialist, CRAZY!!! So, when they called me the next day to tell me that they had an appt time for me and that it was the Tuesday coming up I COULDN'T BELIEVE IT!!

I compliment your determination and wish all the success in the world with your hard work!!

Hoping you find the answers you are looking for!!!

Stay STRONG!!
Mary

[dshobbies]

Emergencies pop up in every field everyday. I don't understand a system can't or won't accommodate these emergencies.

Last year, my brother cut his foot on ???? Within an hour he had a life threatening infection and was in intensive care for 5 days. His body had already begun to shut down. Any delay in treatment probably would have killed him.

I don't understand how this so called succsssful system fails so many so often? Ours is screwed up in that if you can't pay for it, you'd better not be too seriously ill????

[treefrog]

Katie, what those so-called doctors have done to you is nothing short of criminal. It's a real shame.

I hope that Dr. Bitan can give you some answers that make you feel very well taken care of, and more importantly that you get some care to help you. It does indeed sound like your situation is very serious. I hope your travel to NYC isn't too taxing on you, and that you are able to find a place to stay with your dog.