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New Member Introductions If you just joined, please introduce yourself here. Please add a signature describing your spinal history (use the "User CP) and ask us how we can help you get started.


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  #1  
Old 12-30-2011, 02:41 PM
ambiguity ambiguity is offline
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Join Date: Dec 2011
Posts: 3
Default Triple Cervical ADR Revison?

Dear ADR Friends,

It has been several years since I have participated on the site. I had a triple cervical ADR at levels C4-5-6-7 in 2004 with Rudolph Bertagnoli in Germany. It was not long after the procedure that I knew something was deeply wrong. The only good thing that happened was that I had enough stability to be able to hold my head up for periods of time and I was responsive to pain medicine for the first time in a long time. Back in the states, I followed up with Dr. Regan and it was relatively clear by imaging studies that the top level, C4-5, was pulling hard to one side and my head had an extreme tilt to it. No one was ready to jump in there and do anything about it at the time and I subsequently became pregnant, so I mustered up the courage and strength to hang on during the pregnancy and to raise my youngest daughter who had come as quite a miraculous surprise. She is now 5 and although it has been enormously difficult raising her amidst ongoing severe chronic pain, I have persevered the best I could.

Now that she is in a good place and my pain only worsens with time, I am back at the diagnostics looking for answers. I've had 4 consults with 4 of the best surgeons on the West Coast and a different take on my situation from each of the doctors. I have leaned most heavily on Dr. Delamarter and Dr. Kropt's opinion at the Spine Institute here in Los Angeles simply because of their vast experience and knowledge around ADR issues. They are advocating for a complete revision, to fuse all three levels. Dr. Delamarter does not believe that someone with my type of hypermobility does well with the motion that artificial disks supply. I do concur and am still having trouble crossing over the decision bridge. I had originally thought that perhaps just one of the levels might need fusing and I hate to give up my ADRs that I fought so hard for. I always liked the idea of preserving the levels above and below and the concept as a whole. But they remain adamant that a partial revision would merely be a guessing game as there are not any diagnostic tests to isolate which level (s) is generating the most pain.

I am reaching out to the ADR community to ask others about their experience with revision surgeries, especially those of the cervical spine, but not exclusively. I am also available of course to answer any questions one might have related to my own story.

I have deep deep midline pain right inside my neck seemingly at those levels, with more pain right beneath my skull. Sadly also, I suffer from chronic nerve pain on the back of my head from multiple chiari surgeries. This pain is not expected to be effected at all by a fusion surgery, although there could be indirect benefits simply from leading a more active live, etc. that can help with this type of pain.

Dr. Delamarter and Dr. Kropt remain, at least in my eyes, on the cutting edge with regard to spine surgery as a whole and have tremendous success rates with fusions, even triples and quadruples due to their techniques and added components of surgery that address each patient individually. I do trust them, but with my history of chiari surgeries (brainstem compression), they simply cannot align my experience with anyone else's directly as clearly my pain condition as a whole is markedly in a class all by itself. Joy.

My gratitude to all of you for caring and sharing. I am in awe of the human spirit that keeps us putting one foot in front of the other. I look forward to connecting with you. Peace and may you have many wonderful days in front of you.
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  #2  
Old 12-30-2011, 09:28 PM
Harrison's Avatar
Harrison Harrison is offline
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Join Date: Oct 2004
Posts: 7,010
Question Welcome...

So sorry to hear of your agony. You have been an amazing parent and inspiration to many in your grueling journey! Some quick thoughts (as an admin & more):

- have you posted before under a different screen name? Pls let me know here or by PM. We can fix that if that is the case.

- if you search within this community, you will find other members with Chiari spine issues. Have you reached out to these members? Read their posts?

- have you had any luck contacting other people and orgs that focus on Chiari malformations, e.g. this helpful patient? Christine has published a list of docs who specialize in Chiari, have you already reviewed this list?

None of us can advise you on your next steps, but hopefully give you some other ideas or information to consider. For example, do you suspect that the source of your pain is inflammatory (respond to different classes of anti-inflammatories) or mechanical? Both?
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  #3  
Old 07-02-2012, 03:27 AM
moem55 moem55 is offline
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Join Date: Oct 2009
Posts: 2
Default

Hello,
I would like to know how you are doing now. Also, were the discs that Dr. Bertagnoli placed in your neck the first surgery you had there? How did Dr. Bertagnoli reply to your complaints.
Maureen M
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  #4  
Old 07-16-2012, 01:30 PM
ambiguity ambiguity is offline
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Join Date: Dec 2011
Posts: 3
Default Dearest Maureen

So sorry for the delay in responding to your questions. I had not been on the site for months and forgotten my password and just needed some time to be able to re-establish myself. Ok, how am i doing now? My pain hovers between a 2 and an 8 at all times. It can vary greatly on any given day depending on my activity level the day before, my nutrition (very important), how much water I drink -- all things that keep inflammation levels lower. And staying clear of things that elevate stress in my body such as caffeine, alcohol, etc. I don't like having to live such a strict lifestyle and I don't follow protocol as well as I should, but there is always a price to pay for that. I am slow in the mornings and it takes time for enough circulation to pass through the cervical region and up to my brain. I exercise almost daily and believe it or not, I ride horses which is rigorous and demanding and, yes, dangerous on some levels, but I chose not to let my pain control me that way. So I remain extremely strong physically which helps me float above the pain when it is not out of control.

I also have children, one of which is only 6 years old so I can't lead a life of leisure or rest when I need to and that has tough implications as it generally requires me to take more medication than I would like and then suffer the very unpleasant side effects of that. I have, through my equestrian lifestyle, been able to reduce my meds by 50%, but I still have days that I have to take extra to make it through. I am looking for another expert in the area of ADR revisions inside the United States who could provide an objective opinion that I can hold up against that of Dr's Delamarter and Kropt. I am not one to enter a surgery without doing whatever I need to do to get to the surgeons with the most experience, at whatever cost. So that's my next step. I am not satisfied with my quality of life. My pain is too high and the meds are always taking a toll. So I will keep looking and fighting for what is possible. That is my nature.

No, this was not my first surgery. I had a partial discectomy to start. That one set me up for a complete collapse of my cervical spine and the brain compression that led to multiple chiari one surgeries. It traumatized me for life. So be careful of so called "less invasive" surgeries. ADR was not available then and I had no idea that I was doing something that could provide for so much damage. The surgeon of course accepted zero responsibility even though later, when I was well enough to assess the situation, it was incredibly obvious that I had no business even being in his office. My husband almost drove up to San Jose to kill the guy. It was THAT so called simple procedure which would change the course of my life forever. Chiari is simply a blockage of the spinal fluid in the back of the skull but the treatment for it is not so simple. I had years of dealing with that before I could return to focusing on my neck problems. But I did. Dr. Bertagnoli was kind enough to at least consider me as a patient. I had such a confusing medical history at that point that most wouldn't deal with me. I was deeply concerned about putting an ADR in that top C4-5 level as it had always shown 'slippage' and US surgeons were against that notion. Bertagnoli would hear nothing of it and insisted that level was to have an ADR also.

But honestly, I think I saw the man for a total of 10 minutes and worked mostly with his assistant. Based on the aftermath of my experience, I would say that the US surgeons were likely correct and that, at minimum, that upper level should have been fused and is likely a great pain generator for me -- just too much motion for a gal that has highly flexible joints. I logistically couldn't really follow up with Bertagnoli as he was just too far away. And there were some unresolved financial issues that stood in the path as well. But my impressions of him were that he was a fast mover and really didn't have personal contact or follow through with anyone after surgery, leaving all of that to his assistants. But I could be wrong. Plus it takes a long time for everything to settle completely and know where you are so by that time, I was moving on with pain management and taking care of my family. I had had so many surgeries and trauma that I felt I couldn't handle any more. I had a friend of a friend who had a four level procedure with Dr. B, two levels fused, two with ADR's and he is completely pain free now.

My situation really is complicated because as part of the Chiari surgeries, they removed the back end of my top two vertebrae which causes instability at that region and that is something outside the scope of a general orthopedic surgeon. They just don't know how to bring all of that into the picture. I know that's a long answer to a short question but I am trying to be as honest and as helpful as possible. I am a student of the Science of Mind, therefore, I believe that regardless of what is going on in and around our lives, it is our perception that is most important. We can choose to feel grateful for what we have or choose to feel miserable for what we have lost. Sometimes, though, pain is just to unbearable for too long and attaining a healthy perspective isn't possible and it really isn't fair for others to expect that of us. I think if and when you reach that place, the very best thing to do is to get opinions from the best doctors you can afford and take a risk.

If I could do it all over again, I would have had a full assessment by Delamarter and tried to do the surgery here in the US where I would have had some decent follow up, but that wasn't an option at the time. Please feel free to contact me anytime in the future. I will always reply with as much candor as I can muster. Live for today! And know that there is help, you don't need to know all the answers today, but that you can be better. Hold that close to your heart and breathe it in. Stay connected, love yourself, be gentle. Help others even though you are suffering. It is very healing.

Take good care.
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  #5  
Old 07-25-2012, 12:22 PM
christinlal christinlal is offline
Senior Member
 
Join Date: Nov 2010
Posts: 103
Default Hi Christy,

We spoke months ago, and I hope your pain is better.
I am the one with the prodisc at c6/7 and the M6 at c5/6. I can attest to the fact that it takes a long time for everything to settle and heal, I expected to be fine at 6 weeks!!! ha, not even close. I am 8 months out from my 2nd surgery and am finally thinking that I may actually survive all this.
I hope this helps in any way.
Christine
727-213-7228
__________________
12/2008 early am gym class-something very wrong
2/2009 DDD 4 herniated cervical discs
3/3009-8/2009 8 spinal epidurals, pt
09/2009 C6/7 Prodisc C ADR
11/2010 facet joint inj 12/2010 Rhizotomy TBI Dr. Cottingham months of relief
05/2011 facet Joint Inj 06/2011 Rhizotomy
7/2011 Dr. Zigler TBI, facet block and Discogram
11/18 surgery with Dr/Mr. Boeree..Thank God.
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