Finally!! A new Chapter w/ Dr. Bitan and his team in NYC!

[Genn]

After many years of LBP and intermittent nerve pain in my legs, my condition became chronic leaving me bedridden for the past 3 years.

Numerous NS consults ranging from a 2 lvl TLIF, to the most common~ "Continue with PM" !! I found this awesome site in my quest for information and research..

Special thanks to Katie for the beyond amazing recommendation for a consult with Dr. Bitan

I AM a candidate at the L4-5 lvl for an ADR!! L5-S1 shows a complete collapse/arthritis/Facet degeneration,etc. and will be fused (ALIF w/BMP)

Him and his team have been amazing thus far! Surgery in now scheduled for Jan 17th!! ....

Thank you sooo much!! Happy Holidays~ Everyone!

[Justin]

Hi Genn,

I'm glad that you have found the Spine Patient Society Forum helpful and that you have been able to connect directly with SPS Members. I wish you the very best with Dr. Bitan and his team.

Keep us posted. Happy Holidays!

[Genn]

Hi Justin, Thank you for providing this very informative forum and, the well wishes!

As each day passes, I'm starting to feel the time crunch! Trying to fill the gap with as much research as possible...

-Surgeon/team selection... I meet with Dr. Hannan soon and can address some more questions I come up with. Everyone, including office staff for both surgeons have been wonderful and I have not experienced any problems in communication.. I have found this to be extremely important in the past and with surgery on the horizon.. Even more important should questions/complications occur~ The last thing I want to deal with is distant office staff and no doctors.. so, Thumbs up there!

Questions~ Do they ever end??!!

-My xtra lil friend transitional w/partial lumbarization of S1 - Has anybody had info/experience/problems to share when fusing the L5-S1?


-The more I read, the more fearful I am of the ProDisc for L4-L5.. Am I being rational? I see many success stories and failures as I'm trying to sift through much of the information here. Ball and Socket implant whereas a natural disc doesn't act like a ball and socket .. Wear, 3-piece device, etc.. I'm overwhelmed here..


- Does anybody know where I can get current info of the Cost of just the Device itself? From what I see quoted online -years ago- I don't want to be over charged SOOO much! I do NOT have a money tree growing in my back yard- unfortunately!


The roller coaster of emotions seem never ending.... As this new chapter begins, after many years of waiting- I just lost my #1 Doc of 15 years He was my PM, Med Management, Neurologist, Psychiatrist, Philosopher, and most of all- my friend. He is one-of-a kind and is not replaceable! I'm trying to find another dr to go through the motions, at the same time- mourning the loss. I don't want another dr!! Impossible to replace But, that attitude isn't going to help me right now.. 1 step forward~ 2 steps back! Ughhhhhhh... I wish I could call him right now.. He would know everything to ask and more.. I really believe he has kept some of these 'drs' from killing me over the years

OK~ Back to reading..

[Genn]

Good Morning!

Today will be a busy day. Dr. Bitan's coordinator, Luz, made what seemed to be an impossible task- Possible!

It seems my 2 regular drs closed up shop. Thanks to the FDA and Ins Companies , they basically took an early retirement. Only one still has an answering machine (that is full!) but, no more office staff, returned calls, nothing! I can't even get my files. This has been extremely difficult, as they have been my docs for over 15 years. As noted previously, The one Dr. did just about everything- PM, Med Management, Neurology, Psychiatry, etc. He stopped taking Ins over a decade ago and wasn't in it for the money. He charged ~ $50 a visit/month. It was VERY hard to find another dr that does *all* of these things AND takes my Ins. The laws are changing and most PM Drs here do not Rx benzos (anxiety and/or depression). The other was my PCP since I was a young teenager. My files/records as it stands right now are Gone! I have no documentation of my history.

Well, Luz has been on it all week and got me in for today at 2pm w/ a new PM dr that can also Rx for my anxiety/Depression provided I can show a History. Well, Luz came up with a great idea!! Since I have always used the same pharmacy, I called my pharmacist and he said his system will allow him to print-out everything from 2002- current! Oh thank goodness! 'Cuz at this point, it is all I have showing a 'History'. I can only hope it is enough. .

To eliminate another commute, she made me an appt with another doctor at 3:30 today to do all the pre-op testing. It is almost unheard of to get in so quickly AND at a specific time with the drs in NY.. So, I am beside myself! And, Extremely grateful for all her help - assuring me not to worry, that they would handle all these roadblocks. His team, in a word, is- Amazing!

So, Coffee, Shower, Pharmacy (records), PM Dr, Pre-op Dr, NYC traffic, then home!

I also put in a request to speak with Dr. B early next week about possibly splitting this surgery in 2 parts. I can not/will not pay for an ADR that is so old!! If my Ins was paying, that would be 1 thing, but they do not cover ADR and for the same amount, I think it would be foolish not to get newer (decade old) technology. I am very concerned about using this ADR and the effect it has on the facets- amongst other things! If we don't do both levels, I would assume it would change the approach for the fusion?? I've already had 1 abdominal surgery and if we don't do the ADR at the same time, I'm not sure it is wise to bring that total to 2~ when I *think* (not sure), it is only recommended to have 3 open abdominal surgeries. Input anyone? Pleaseeeeee.....

I will know more after I speak with him about this and, hopefully~ put my mind at ease. We'll see what he has to say next week.

Hey! I think I have an old commodore 64 from the 80's.. All yours for the small price of ~ 20k!! ...

Yeah, right!!

OK~ last cup of coffee and off to start this very long day. Hopefully, it goes smoothly!

Finally.. Progress!!

[laid up doc]

you are right that you don't want 2 abdominal surgeries. IF you decide to split into 2 surgeries, you could have L5/S1 done as a TLIF and later an ADR anteriorly. There are some studies w/ an extreme lateral approach at L4/5, but it is a modified Prodisc.

doing 2 surgeries, however, gives you 2 recoveries, 2 general anesthesia, etc.

was it firmly established that L4/5 is a pain generator? or just that it looks bad? ie, have you had a discogram?

[Genn]

you are right that you don't want 2 abdominal surgeries. IF you decide to split into 2 surgeries, you could have L5/S1 done as a TLIF and later an ADR anteriorly. There are some studies w/ an extreme lateral approach at L4/5, but it is a modified Prodisc. doing 2 surgeries, however, gives you 2 recoveries, 2 general anesthesia, etc. was it firmly established that L4/5 is a pain generator? or just that it looks bad? ie, have you had a discogram?

Thank you, Doc! (Can't say 'laid up" anymore )

If using a different ADR is not an option (at this time), Then either is an ALIF approach only for fusion. You never know what the future may bring! And, I'm too young to run out of those options. Easy enough decision. It isn't worth it, imo. Thank you I was thinking along the same lines w/r/t the TLIF. I am 'for' pedicle screw fixation due to strength. The XL looks interesting but, I am not really interested in a modified PD and, perhaps due to my lack of research on that approach, it is still a bit too experimental on my personal scale. A conversation with my surgeon can definitely change that. The alternative approach to an ALIF will be Dr. B's call. His experience/success rates/concerns etc. definitely carry more weight over my preference.

As we see many spine patients traveling Internationally for treatment, Dr. Bitan has many International patients travelling to NYC for his surgical expertise with much more complicated cases than mine. I am completely comfortable with surgeon/team selection..I couldn't be happier!(Thank you Kaiteeeeee!!) If only there was a way around this ADR option being presented to me. I wonder about the Active L availability here...I know nothing, as I'm just starting my research on that device.

Re: Your last question: It would depend on one's views of a discogram being the only way to firmly establish a pain generator. For the majority of cases, I think they are necessary but, not w/o exception. I was pushing for one with my last NS so he would finally operate after 3 years. Showed up for my appt at the Hospital that his surgical coordinator set-up. Only to find out they didn't do them there anymore.. As in 2-3 years!! I left and came home. Talk about a waste of time.. AND, a blessing in disguise!

My appt for my first consult with Dr. Bitan was the day after the scheduled discogram. They spent a great deal of time studying my work-up from 3 years prior to current. I was asked numerous times if I'd had previous surgery or a discogram. The fact that I did NOT have the discogram or a previous failed surgery made the diagnosis very clear to him. He said it was 'rare' to see the L5/L6 completely collapse in that short of time w/o the above mentioned. I think saying aggressive may be putting it mildly if he used the word 'rare' (This is a very big concern of mine). At this point, I am still a candidate for ADR at the above level. We discussed just a fusion at the L5/L6 level, however, it was his opinion and concern that when I recovered from the first op, we'd be right back where we started- with the L4/L5. ADR may or may not be an option at that point.

And, like you said, 2 surgeries, 2 recoveries, 2 general's, etc.

However, previous and current exams/testing indicate I have pain coming from the L4 and L5 distribution- but not from a discogram. And, it is not a risk I'm willing to take, at this point- due to my pathology being noted as 'rare'.

"What to do with L4-L5" has been a question repeated by many Drs I had surgical consults with (excluding the genius' great diagnostics of a life of pain management ). After much review and physical examinations, all recommended a type of surgical intervention at both levels. It was pretty consistent across the board. Thus far, all other levels have remained 'unremarkable' since the MVA that initially injured these 2 lumbar discs- around 14 years ago! I'd reallllllllly like to try and keep it that way!

Also, I'm living with the consequences of not having surgery sooner. That I see has been my biggest downfall. It has left me with no options, bedridden, and in way too much pain and no intervention. I do NOT want to make the same mistake again.

Wow- that was long. I guess the answer to your last question is yes and no!

[laid up doc]

you have very valid concerns. i am glad that i didn't have to make such a decision... in my case a prodisc was out of the question, so i had to come up with the $$ to go overseas, or do nothing.

i take it the overseas option is financially not feasible?

and as far as other discs in the US - the only lumbar disc in trials now is the Freedom disc, but it won't be available for some time. the trials just closed or are closing, so no initial data nor follow-up data to be had, and it's not yet FDA approved.

for the foreseeable future, the only FDA approved lumbar disc in use is the Prodisc. the Charite' replacement is supposedly out there, but i don't know of any surgeon using it nor any patient who has gotten it...

the activ-L is not a titanium alloy, if my memory serves me correctly... i seem to remember i had to search around quite a bit to find out what it was made of. freedom and M6 are the only lumbar discs that are titanium alloys (aka non-chromium-cobalt alloy) -- much of the concern about the prodisc in women has to do w/ the chromium in it.

hope that's at least a little helpful sorry you're having to make such a tough decision!!!

[Genn]

Sorry.. had to keep editing to get the right format.

When he mentioned the PD, I asked if he thought it had 'too much movement". His opinion was that the Charite had more movement. Given his experience with the Charite, I did not even question it! LOL

The fact that the ADR is not covered , I'd have to pay the same amount here as a 1 lvl ADR overseas! Hence, the conundrum.

It is much more feasible to have the fusion done here vs a 2 lvl overseas.
Especially with Dr. Bitan's experience with fusion/ADR/Hybrid/Revision- I'd rather him do the full Op but, if I do end up going overseas for a device that would mitigate the risk of lymphatic granulomas in women, He's the one I'd want to be doing all my f/u. Since he will be doing the fusion, I don't think he would mind the f/u on an overseas ADR- Considering he is an overseas surgeon as well. I'll know more on that on Monday when he is scheduled to call. I wish there was a way to work this out! Ufff...

If it does come down to that.. I would think there would be a concern with the length of time one needs to wait..With all the bangin', chizzlin', and distraction, I would be afraid of interfering with the below level fusion?

Thank you, Doc Very helpful and thought provoking, indeed.

Ahhh.. decisions, decisions.. I don't think they are ever easy- anymore. They put life in a different perspective. Not many people can remotely understand what I'm even talking about!!

[Katie]

Jenn, have you had a bone density test done? And I know I am boring others ad nauseum with this, but have you ever shown any signs of metal allergies, even a tiny bit in the bast, to jewellery, etc.?

Great research you are doing...and nice chatting the other day!

[Genn]

Jenn, have you had a bone density test done? And I know I am boring others ad nauseum with this, but have you ever shown any signs of metal allergies, even a tiny bit in the bast, to jewellery, etc.?

Great research you are doing...and nice chatting the other day!

Kaiteee

No Bone Density test- yet I did call my new PCP that did my pre-op and blood draw re: metal allergies for joint replacement. He wasn't too worried about it and re-directed me back to Dr B. I will bring it up with them again tomorrow when I call. And, again with Dr. Hannan on Thursday. Also, my new PCP that did my Pre-op will be seeing me off for my surgery.. I was quite surprised- pleasantly! I am a new patient of his and he is already treating my like a long time patient. Even then, not many will take the time off to see you into a major surgery. Thank you, Dr. Retsagi!

I see Dr. Hannan (the approach surgeon) on Thursday. They are trying to get me in for an EMG at the Hospital for Joint disease the same day, to save me a trip. I also have to get my chest x-ray done at the hospital so..It will be a long day. They have worked some miracles for me already so, I'm hoping to get the BD, LTT, and EMG done, too.. Wheww.. my head is spinning. Time is getting closer and, I'm nervous! ...

Sorry for the delayed response~ we were celebrating my trip around the Sun yesterday!

'Somebody' made the big mistake of calling my father (not me!) to ask for help w/$ for the surgery. What a disaster! The AH hasn't spoken to me since this happened and I tore those discs in the gym, with his BF- my X-trainer! Now all of a sudden, he's a Doctor and I could get a bunch of discs!! ...' CUZ HE LOOKED IT UP ONLINE!!' As if I can find one for 'cheaper'!!!!!!!!!!!! Trying to tell him my only option in the US is the ProDisc is IMPPOSSIBLE!!!!!!! My gosh!! That is the problem the US patients have..Our LACK OF a choice!! GRRRR!!! That IS my only choice!!
I'm so pissed off.. Can't believe he called them and now 'family' is involved! They are absolutely useless.. Oh- and they are loaded! But, would rather keep me crippled the rest of my life! .. but, he "might be able to put SOME money together" He thinks his parents should pay??!!!! since they have more money than he does?! He thinks this whole thing is a 'Joke' since somebody saw me walking with my cane.. I have no idea if they did or not..even so.. I use a cane when I go out to the Dr's appts!!
I can't deal.. Hearing his thoughts on the subject makes my head want to Sorry for the rant. I had to vent!

Anyway, I'll have to write my 'back on topic' post later.. The stress so soon before the surgery is to be expected but- Now, I'm just really - Really Pissed Off - instead of excited!

xoxo