2nd post: Anyone out there with successful 3 level cervical ADR? Getting desperate.

[Ringo]

I just need to get someting done. I know I shouldn't get desperate but I need to get this ball roling in the right direction. If I need to leave the country, then I need to start making plans. My doctor leaves the country a couple times a year to do surgeries. Is this a good way to do things?

[Maria]

Hi Ringo,
I hope someone here who has had multiple cervical levels will reply to you however I will state that there are surgeons abroad that do multiple levels and I think the most I've read about on this particular forum I believe was someone that got 4 levels done. May have been more. I'm hoping Mark will reply to this thread and give accurate detail plus fill you in a bit on surgeons you might consider.

The two that come to mind I can give off hand are Dr.Zeegers and Dr. Bertagnoli. I no longer have their contact information though someone here can give it. They both practice in Germany.

I believe there are other surgeons to consider as well in other countries however I do not know who they are.

I don't know if surgeons in the US who do ADR will do multiple levels for cash since insurance isn't going to authorize it here so again I'm hoping someone with more information will reply to you.

You should talk to Mark (mmglobal). Good luck ~ Maria

[Maria]

for Mark.. I think Mark might be able to answer this one

[mmglobal]

Me: http://www.ispine.org/forum/8494-post77.html

I view my surgery as a success. The ongoing problems I'm having with my thoracic spine, I believe are unrelated to either of my ADR surgeries. Also, my case is somewhat extreme with 4 levels in a construct that spans 6 levels and goes all the way down to Th1-2

Ginger: http://www.globalpatientnetwork.com/...er/index.shtml

Ginger's story was quite remarkable. She went back to Germany long after the surgery described there. An injury blew out another level and hers was revised to 4 levels. I've had dozens of clients with multi-level cervical ADR.

Keep in mind that by the time we need a 3 level procedure, there is (most likely) a lot wrong with your spine in addition to the operated levels. So, stories like mine and Ginger's are not uncommon.

Mark

[don_wagner]

Ringo, I felt your desperation when conservative treatments and strong medications stopped working. All this on top of the fact that I was about to lose my job and hence my health insurance. It was an absolutely awful period, however I prayed, and I prayed allot. I was referred to another doctor and his treatment helped me a great deal. Although much pain remained, it was the first time I felt hopes and didn't feel rushed to make a decision.

I am in the process of trying to get a second treatment from the pain management specialist.

However, I continue to look for an affordable, non-fusion treatment, without sacrificing quality. It is difficult finding accurate cost data about well qualified surgeons aside from two, allegedly top dollar but, well know surgeons practicing in Germany.

It would be much easier and helpful on this site if someone could create a record of the cost of their surgery’s, who did it, where it was done, and the outcome.

I hope you find what you need.

Don

[Maria]

Don
there is the surgical outcome part of the forum to check out surgeries. I don't know if people put the cost or not but since surgeries probably aren't the same and it seems many were done quite some time ago costs are likely different. People may have put the cost down.. don't know as I've not looked at that part of the forum for some time as it's been nearly 7 years since I was considering a 3rd spine surgery.

[Ringo]

Thanks for the reply.

[ajspine]

Hello Ringo,
I feel your pain. I needed 2 levels(C5/6 and C6/7) done but I was only able to get one level done at a time here in the states. I will be having the 2nd level done in 18 to 24 months. When I had the surgery I asked why they couldn't do both levels at the same time. Answer: The FDA has not approved more than one level at a time. This sucks as the surgery(for me) was horrible and I am not looking forward to having it done again, especially since it has not cured all of my symptoms and pain. But that could be because I am still about 6 months out and need more time to heal.
I hope this helps in your decision and going out of the country might be the only option for multilevel ADR surgery. Good luck and please keep us posted.
AJ

[mmglobal]

AJ, I'm sorry to say, but the FDA does NOT stand in the way of multi-level ADR. Devices are either approved or not approved. The FDA does not approve any number of levels. If the device is studied at one level and the approval is based on the single-level study, then multi-level procedures are considered off-label. Again, the FDA does not stand in the way. These decisions are usually based on reimbursement issues and when a doctor tells you that the FDA does not approve multi-level procedures he is providing information that is misleading (to be polite.... FALSE to be blunt.)

It breaks my heart to see people get a procedure that is known to be incomplete because of reimbursement issues, but that is the world we live in... that is the status quo for the last DECADE since the first FDA approval of a disc replacement, the Charite' in 2004.

The good news is that cervical ADR is coming around and I've heard of BCBS of California approving multi-level cervical. The bad news is that they are actually backing up on lumbar ADR's and some companies that used to approve single level lumbar are now denying.

I'm looking forward to discussing your surgery and recovery. Most of the cervical cases I've seen have come with quick recoveries. Even in the cases where the surgery hasn't resolved or reduced the pain, recovery from the surgery has been quick.

I'm still painting and doing projects around the house. I can't believe that I'm doing this well... the last few weeks have been miraculous after the last 4 years being pretty freaking bad. (yay thoracic epidural!)

Talk to you soon,

mark

[ajspine]

Hi Mark,
Well, not only do I feel like they screwed me but now they have out right lied to me. The one thing in life that i demand from my family and friends is honesty. I cannot stand to be lied too. Why they would put me through that surgery and only do one disc makes no sense if the FDA is not blocking it because I do not use insurance, I use the VA. I am a 50% disabled veteran and while I am a full time grad student I get all of my care through the VA.
SO, they have lied to me about the surgery levels and now they are messing around with my meds. I AM DONE. I am calling my Psychiatrist in the am, this is affecting me mentally with the pain I am in, then I am reaching out to my Voc Rehab counselor because it is affecting my ability to focus on my school work, next I will be contacting the patient advocate at both VAMC and finally contacting my congressman.
I refuse to be lied to and under treated because of the mistakes of others when it comes to medication use. And I am very angry at the prospect of another ADR in 18 months.
On another note, I am so glad you have some relief and are able to get some projects done. I hope this will be permeant for you. I look forward to speaking with you.
AJ

[mmglobal]

AJ, the problems we have with insurance companies are even worse with the VA. Your doctor may have been correct when he said he could not do a 2-level, even if the reason was not the FDA.

BTW, you win the first annual BEST AVATAR award!!! great pic.

Mark

[Maria]

AJ
One thing I've learned having worked for the VA as an RN and having worked for numerous health care systems as an RN and a Nurse Practitioner and having been a spine patient is ~ disappointment, anger and such feelings are normal with regard to unmet expectations and things that do not work as we hoped for however deep pockets will often outweigh (with regard to lawsuit or threat of lawsuit) will often outweigh our (the patient) potential angst, anger, disappointment, etc.

My experience in healthcare has shown me that many things can be obscured (such as the truth) so that no matter what I want or wish for or even expect in terms of quality of care and meeting standards of care in the community may not be met but for some odd reason if one brings forth complaints (or threats) to a provider or system their legal force (shield) will be raised.

My advice to you would be to not alert "the system" if possible and gather your resources should you really be unhappy, displeased, etc and think there is anything you can do about it.

My own personal experience has been with spine surgery is that nothing is really guaranteed so unless there is a really something that can be legally disputed (and maybe that is true for you) there won't be much to be done except going thru the stages of grieving re loss...

I hope that you are doing better and that you will be doing better if not at this point or some time in the future. If I could have had some assurance that if I needed a 3 level ADR vs. a 2 level once the surgeon went in I would have had surgery however I pretty much understood that if a 2 level ADR or a one level ADR and one level fusion was being authorized re surgery that was the surgery that would be done and paid for by insurance and not a penny more (mine coverage was thru WC) ...

Got to have the understanding before going into it too as well... as we do sign the consents re surgery.

Good luck. I hope things will get better... Maria

[ajspine]

Hi Mark,
It was wonderful to hear from you and I will keep the forum updated re Spine treatment through the VA. And I have never won anything, so thanks!! I am the red head in the middle and my two daughters are each giving me a kiss, they are so sweet and supportive for how young they are. Talk with you soon.
AJ

[ajspine]

Hi Maria,
Thank you so much for your feedback, it is greatly appreciated. I am not going to threaten a lawsuit, I don't even think I am allowed to sue the VA. What I will do is demand that I receive the treatment that I am supposed to receive. My Dr could have very well been telling the truth in that the VA will only allow one level at a time and not because of the FDA. But as with many things in the VA, the patient is left in the dark.
We are not asked to be apart of our healthcare choices, they are made for us and if we demand answers, or even help. we risk being labeled a "Bad Patient" and black listed within the VA care system. When usually all we want is for someone to care and to actually listen to our problems, concerns, and let us be a part of our own healing process.
I did have a good surgeon and he was honest with me going in with this surgery: it will not fix everything but if it fixes your constant headaches then I would see it as a success. It has diminished my head aches but my neck and arm pain are not better, if anything they are worse. So the VA philosophy is: we have done everything we can so we no longer want to treat your pain-unless you would like more surgery. Somewhat like an ultimatum: if you want more surgery we will be happy to treat your pain but if you would like pain management with massage, acupuncture, aquatic PT and Therapy, we will no longer treat your pain. So my choices will be surgery after surgery(because they keep finding things to fix) or NO treatment for my chronic pain.
The way the VA system works is horrible and as a freind recently described it: a National Disgrace. Thank you for caring and responding. I will update my other thread with news about my Pain treatment.
AJ