Germany & Dr. Bierstedt for Cervical ADR?

[Cynlite]

Scoop302, Thank you for your earlier post. I'm sorry I did not respond earlier. It's just been a really difficult time to manage things in my life.

Car accidents were also the cause of my neck issues. I was in three of them by the time I was 31 years old. It was such bad luck. I'm glad your surgery with Dr. Clavel is working out for you. I have read about others who have the migraines after ADR neck surgery. I don't know what causes them. I am hoping that neck surgery will stop my headaches! The only thing that has stopped them so far (albeit temporarily) is the RFA procedure on the facet joints. After the recent procedures, they did not go away completely but, are better than they were so at least I can function. Hopefully, the procedures will buy me some time so I can figure out what I'm going to do with my poor neck. I'm still in the middle of getting tests done and fighting for my updated MRI exams with the insurance company. Hopefully, the MRIs will get approved this week.

My Mom continues to decline and that kind of makes everything else in my life not mean a thing to me. I'm pretty sad so it's hard to fight the fight. I guess I'll figure out what to do with my neck when the time is right. For now, I'll take things a day at a time.

I sure hope your migraines go away soon! They certainly do make life difficult. I look forward to reading your posts as you continue to heal.

[Cynlite]

I posted this for Cheryl the other day and wanted to put it on my thread. The important point is that a CT Scan seems to show the condition of the facet joints better than other images. Reversal of anterior cervical discectomy and fusion with cervical artificial disc replacement: regain motion after 9 years fusion. - PubMed - NCBI

[Cheryl0331]

Originally Posted by Cynlite

I'm a 50 plus year old female and have been in pain for 9 years now. I have tried many ways to get my health and life back. My surgeries are all listed below. I lost a thriving career, all my sports and my social life. I'm sadly on disability now. All of this is the result of three car accidents when I was younger and time taking its toll. I used to be an avid water and snow skier too so, I'm sure a few well placed falls didn't help my situation either. I was very active and traveled a lot until my neck slowed me down. I spend most of my time at home now trying to manage pain. In the last three months I've been losing the ability to walk and stand again so, I have been SLOWLY moving my way through the U.S. medical system and finally have an appointment with a top surgeon at the Barrow Institute on 3/23/15. I already anticipate that my health insurance will turn me down and demand that I have fusion. I know I'll have a long appeals process in hopes of getting them to approve the ADR surgery. I expect to find out that I need 2 to 3 levels fixed because the surgeons wanted to fuse two levels back in 2007. If it's 3 levels, well, that isn't going to happen in the U.S.

I am really leaning towards the M6-C disc which is still in Trials here in the U.S. I tried to get in but, my prior surgeries disqualified me. So, after reviewing much information on this site (thank you everyone for your contributions!!!), I've been in contact with Dr. Bierstedt's office (Malte has been great so thanks for steering me his direction) and also Dr. Bertagnoli's office (both German surgeons.) I'm waiting to hear back from Dr. Bierstedt regarding my prognosis. I'm really leaning towards Dr. Bierstedt and have only had an initial contact with Dr. Bertagnoli's U.S. liaison. The other surgeon that caught my attention was Dr. Clavel but, it seemed like there were some questions about his practice. I can't remember exactly so, will need to go back and research him again. Anyway, if anyone has any information, suggestions or experience to contribute in helping me figure out this puzzle, I sure would appreciate it! I'm trying to make a decision asap before I do irreversible damage to my spinal cord. The changes in my symptoms the last three months have me pretty rattled. Thanks so much!

Did you ever think of what questions you had about Clavel's practice? I haven't heard of anything.

[Cynlite]

Cheryl, I read some not so favorable posts about Dr. Clavel along the way in my research but, I didn't bookmark them. I have uncountable hours reading on the Internet regarding ADR so, the fact that I only found a few very unhappy patients does not reflect badly on him. I looked again today and can't find any of the posts to share with you. I'll keep digging and let you know if I find anything.

Mostly, like I said before, it seems the majority of patients are singing his praises and the ones that responded recently to my post said he was good at responding to their questions after their surgeries. I think that's very important since we could be boxing ourselves in by leaving the country for surgery. I'm sure you've read the posts where people come back and continue to have problems and now, the surgeons in the U.S. won't touch them. Obviously, we would not be considering it if we felt we could get what we needed here and have our insurance work with us on it. I'm pretty sure my insurance will not reimburse me a dime. So, going abroad would be an expensive last ditch effort to get back my quality of life. I know there are no guarantees and I also know that many surgeons make quick decisions on what surgery they think will fix me. It's up to me to ask ALL the right questions because I think most surgeons make decisions in a vacuum of data. Dr. Zeegers is the only surgeon I have found that wants to look at my complete history and I think that's important in my case because perhaps with his vast experience he can come up with some answers. Why didn't my earlier surgeries fix me and why did my C6/C7 autofuse so quickly? Why do I feel like electricity is jolting me periodically and where is it coming from? I know this time around, I'm not risking paralysis so, at least the earlier surgeries got me out of that situation but, they did not help much with the pain.

I pray that Dr. Clavel helps you to get back to your life Cheryl. I know you too have a lot invested in your decision.

[scoop302]

About the headaches. The way it was explained to me was that surgery is a traumatic event, and disrupts the way your brain functions electrically. I happen to be one of those people this happens to. I used to get really bad tension headaches, etc, with the migraines. Now I only get the migraines which I have the predisposition for. The migraines are hell, but I am better off than I was before, and would do the surgery again.
I am sorry about your mom, I hope you are doing ok.

[Jerry5]

Forget the US system, the doctors have the ability, just the system is broken, and it will get worse.

Hek, the US gooberment even wants to take money from the US Military retired people.

They are CROOKS.

We need a Complete reform,
100% repeal of the ACA
TORT Reform
50 State Access for ALL insurance companies.

Ok, I have been able to find an OPEN mri about half hour from where I live, about the same distance to work, that is/was about $400.

If you can't find one of them, then ask for a front and side xray, then a flexor, where you bend forward, and then backwards, you have to hold this for about 5 seconds.

Then you can send these to a European (this is what the People in DC want, to say that we need their style of health care, don't believe it, most people that go to the EU pay cash and some even get reimbursed, the EU has a two tier system, Public health, and those that can afford it) doctor, Germany(Bierstedt) in my case or a few of the others, as mentioned here.

NINE years, how have you managed, I only lasted about 17 months.

Hope all the best for you, and do not listen to the doctors here, most can do what is necessary, but at least, find a good neurosurgeon here in the USA, that KNOWS what they are up against.

There is a Two Level Mobi-C, I believe you said you have cervical, if you have Lumbar also, might as well do both, if you go to the EU.

The Two Level Mobi C was approved in the USA, but there is NO good alternative for the Lumbar(in the USA), except a fusion.

[scoop302]

Like Jerry said, there are a few here that have had multi level cervical with the mobi c and are doing very well. In the states, it is fusion, and pro disc L, which has many problems. I believe drewrad mentioned that there is now a new M6 L, and a few people have posted about getting the active L. I have 2 M6 C's, and so far so good. It has only been 6 months, but the doctor here that does ADR with the mobi c and pro disc L was very impressed with the x-ray's and my outcome at 5 month's. To be honest, I hate to travel, HATE staying in hotel rooms, etc. but would go to Dr Clavel again, no question. He is that good. My experience with Bierstedt was not good at all, and would never recommend going there. That being said, I always wanted to go to Germany, I have family there, and it seems they have a better rehab program after surgery. Loved Dr. Clavel, hated the travel and staying there.

[Cynlite]

Jerry5,

Aren't you supposed to preface your post with "RANT" first to warn us? I may be on my way looking for an open MRI soon so, thanks for the suggestion! I can't argue with your rant. I say all the time TORT REFORM....but, no one listens to me.

Scoop302,

Did you have surgery by Dr. Bierstedt? I only see that you had surgery from Dr. Clavel. Why do you have such a bad opinion of Dr. Bierstedt? Seems that there are quite a few happy patients of his on this board.

My concern with the two level Mobi-C where I live is that there is only one surgeon that I am aware of who has done the surgery in Arizona. He did it five months ago. It was in the news. That's not much of a track record to make me feel all warm and cozy with the surgery. Not that I think my insurance will think I'm a candidate. I don't think my insurance will approve even one level but, I'm not there yet. The only "offer" I have had so far is a one level fusion from the surgeon at the Barrow Institute with the caveat that it probably won't help me to feel better. I'm really making some good progress here in the U.S.

I assume I would rather have the M6-C based on what I've read but, I am waiting for feedback from more surgeons before making a decision on what to do. No need to go into the pros and cons of each disc here because we all know them. I am fully aware that the M6-C is leading the pack in Europe but, I want to hear about why it's good for me from the surgeon who finally figures out what to do to help me.

I think I will get Dr. Clavel's opinion after I get the Lumbar and Thorcic MRIs that my insurance just denied. Hopefully, the surgeon at Barrow will get this sorted out for me this week so I can get them. I'm really surprised that they have done such a crappy job at getting the proper information to Cigna considering the Barrow Institute is supposed to be one of the top spine hospitals in the country. It's been a disappointing ride so far.

[Cheryl0331]

He was the only one that in his assessment he noticed the segmental kyphosis upon flexion below the c 6/7 at T1. He said the 6/7 for sure and is ready to do two level if needed. He doesn't want for me to have to come back. Dr.Beirstedt albeit a surgeon to his credit, missed this. When I asked him about it he stood by his original assessment of one level only at 6/7. I need someone who is going to look at the whole spine. Not just an MRI but goes by my symptoms too. Plus the M6 is my only chance to stop the ALDDD. God willing. There are several doctors that are doing hybrids here in the US but they are using the mobi-c and Bryan and I worry about facet joint issue without the steady low profile keels like what the M6 has.

[Cheryl0331]

If I stay here and don't go to EU three things WILL happen:
(1.) I auto fuse and then ALDDD in to my thorasic where I already have slight scolio plus I would not be able to drive and then the c 2/3 will go next
(2.) The docs here fuse me yet again and all of the previous will happen (3.) get the M6-c and pray for a good long lasting result and have a chance to recover the use of my arms.

I had a doc here want to take out the plate/screws, breakdown the fusion at 5/6 to get a bone spur and put a Bryan in at c 6/7, and possibly check the peek implant at c 3/4 to take it out and put another Bryan there! That was way too invasive and scary risky! Once you have all that milling, there is no where to go from there except fusion if that has to come out.

PS: RANT