Hello Everyone! - 3 or 4 level ADR candidate
 

Hello Everyone,

I'm on the forum because I have researched locally the best doctors in my area, Philadelphia (having a hard time finding a local experienced ADR doc) and so far these have been the suggested standard to manage my issues:
1st ortho - fuse C6/7 (no ADR training)
2nd ortho - fuse C6/7, C5/6, C4/5 (ADR training - stated it was experimental though)
3rd ortho - fuse C6/7, C5/6, C4/5, would be open to a hybrid with ADR (doesn't accept my insurance unfortunately)
4th & 5th neuro - fuse C6/7, C5/6, C4/5 (no ADR training)
6th neuro - fuse C6/7, C5/6, C4/5, would be open to a hybrid with ADR, but feels if a CT scan shows a bone spur it would disqualify me
7th ortho in Germany - 4 level cervical ADR C6/7, C5/6, C4/5, C3/4 with a semi-constrained artificial disc that can correct my kyphosis
Waiting on doctor in Spain's surgical opinion.
The German doctor would cost about $56,000, which I don't have on my own. I'm currently a single, unemployed 41 year old whose parents are willing to assist me in this, IF they agree with it. Ugh. If they had no means to help me I would be forced to get a 3 level fusion soon, as I'm fearing more loss of sensation in my dominant left arm and more weakness. Also if I have a bad fall or car accident I could be paralyzed.
Since they are kind enough to offer to assist me I'm still researching out of the country options. My mother fears traveling abroad at 72 years old and my dad is 74 and skeptical.
I realize this forum is not for medical advice, but I'm looking for experienced people to assist me in this very important decision. I'm fighting hard not to have a 3 level fusion and a future of more surgeries that would have a less and less chance of being successful. I fear loss of function as a single person who needs to make a living to support themselves. If you know of 3 level successful fusions, I would love to hear it. If you know of successful 3 or 4 level ADR surgery I would really love to hear that too. And how to protect myself in doing so. My ultimate goal is to get the ADR surgery, have it covered by insurance by the grace of God and have an excellent outcome. If I convince my family to help me and it goes badly I will feel horrible about it for the rest of my life. Please offer any assistance as it would be so appreciated!! Many blessings to all :angel:.

Anne, I'm sorry you are struggling. I'm still trying to figure out this puzzle too. I have found zero surgeons in my state also and I know how frustrating that is after trying so hard to find them. I too am a cervical patient but, most likely two levels since one of my levels autofused :(

I just finished reading all the cervical posts in the Post Surgical Forum. The only surgeon in PA that I found was Dr. Winer. The member's name is Marc in PA if you want to search for his story.

Do you have health insurance that will cover you out of state?

There are successful stories for 3 and 4 level cervical patients. I've read them so there is hope.

Is the German Doctor Bertagnoli? He's not in the running for me. He is always more expensive and has a mixed success rate from what I've read.

Dr. Bierstedt in Germany charges $34.5 thousand euro for a three level and has a good success rate with his patients on this board. I assume Dr. Clavel will come in at around or below that cost and also has a good success rate with patients from this board.

Hi Cynlite,

Thank you for your quick response! Yes I have read successful 4 level ADR stories but also some horror stories. It all depends on your health & biology, your surgeons skills and your recovery care. Anyone of those things I think could bring a very drastically different outcome. It is so nerve wracking!!

Thank you for your advice about Marc in the Post Surgical Forum, I will look for it.

I currently have the only insurance in my state that would cover ADR, Aetna, but it is only good for Pennsylvania!

I feel like I've googled thousands of doctors and I have found some even on this forum that people have raved about and then when I google them I find terrible complaints about them! Everyone's experience is different and you don't know what all the variables are.

So sorry to hear that you are o this journey too. I'm grateful for your response. Many blessings to you!

Just noticed your last question Cynlite,
Yes the German doctor is Bertagnoli. I've not heard of Dr. Bierstedt. Does he have a great reputation and a lot of experience?

I'd toss out Bertagnoli and replace him with Dr. Bierstedt. Dr. Bertagnoli has mixed reviews and some that concerned me. Plus, he charges more than anyone else. Dr. Bierstedt will evaluate your case for free and does have a good success rate. ONZ Spine Surgeon for Disk Replacement, German Spine Specialists – M6 ADR Artificial Disk Replacement - Stop spine pain now, Lumbar Cervical Spine Surgery

After months of frustration, I recently called my HMO (I'm on Medicare disability) and they said that I could ask my primary care to ask my insurance to make an exception and let me leave the network/state because I cannot find the specialist I need within network. I have Cigna. It's worth a shot! If you get that far, then I would recommend that you contact Dr. Blumenthal at the Texas Back Institute. However, keep in mind that in the U.S., they can only do two levels. I'm only suggesting this because of the financial constraints.

Here are the patients that didn't do so well with Dr. Bertagnoli who had the complex surgeries like you. The first two are Cervical patients and the 2nd two are Lumbar.

SandraL
Junk Back
Jamie5136
Andy

Anne,

Condolences on your physical issues, but welcome.

You will find that two level cervical success stories for ADR and/or fusion abound. While the great majority of three level are also successful, the success rates seem to drop as more levels are added. I have four cervical levels done; two fusions and two ADRs. I am doing very well and even completed an Ironman with all of that mess in there.

Given your financial picture, the recent experience of the poster on this board that goes by njgene is particularly relevant to you. Presumably because of financial competition, Texas Back Institute (a premier ADR provider in the US) will negotiate a lower price for surgery than we have to spend overseas. As your financiers are skeptical of a European ADR, perhaps they'd be more open to a domestic one.

Texas Back Institute (TBI) is in Plano, TX (suburban Dallas). Depending on the doctor you get, they'll probably prescribe some combination of ADR and fusion with either the ProDisc-C or Mobi-C. That facility is worth considering; especially in your circumstances.

@Cynlite ... I don't know of a two level limitation. I know of one poster on this site that had four lumbar levels done at TBI (in two or three different surgeries).

Good luck!

Anne,

I'm not promoting this surgeon in any way. However, he is located in Allentown, PA

Dr. Jeffrey McConnell, MD, Orthopedic Surgeon, Allentown, PA, 18104

I saw him for a consultation, but ultimately decided on Dr Blumenthal at the Texas Back Institute.

Good luck!!

Gene

Hi Anne, sorry to hear about your pain in the neck! I too have multi-level cervical problems (3-levels) and still searching for the right surgeon. Fully agree with NJGene, that it has been hard to find a surgeon in this area promoting ADR! The 2 exceptions in NY/NJ area were Dr. Fabien Bitan & Dr. Jeff Goldstein, but I did not want to do ProDisc, so cancelled my surgery appointment with Dr. Bitan.
Like you, the surgeons' recommendations varied on number of levels to operate on, between 2 or 3, and currently waiting for more opinions from Europe to help me decide! I would like to do the levels that are causing me the pain, and leave the ones that are non-symptomatic, and hope will not have to do them later or by then more devices will be FDA approved & the surgeons here be more familiar with ADR.
Best of luck.

Thank you all for the posts jss, NJ Gene, and Dema!

I did contact the Texas Back Institute through their main email and they stated they can negotiate prices and do 4 level ADR if appropriate!!!! (Even though I have heard the FDA only approves of no more than 2 levels is the USA) Is this an experimental facility?

My first thoughts were, well if one office manager told me that surgery in the states for a 3 level fusion, would be about $235,000 billed to the insurance company, then how could they do better than Europe, charging about $50,000 for a 4 level ADR? Is it because they are building up their experience and credibility? What are they going to cut back on since you are a special finance case? Will you get the doctor you want or a new one building up his experience? Do they have the same success rates as the ones in Europe? Do they have access to the same means to do it as Europe? When you fly back to your hometown will your local doctors help you or know what to do with you?

Also, I don't think patient reviews online are always 100% credible, you don't know if the doctor is removing the negative ones or writing the positive ones, but when you look up some doctors like Dr. Scott L. Blumenthal you can find some people complaining about their ADR surgery with him and others raving about it. Someone from just 2013 stated they now live in pain forever from the ADR surgery he performed. Did the patient do something wrong? The doctor? Is there any doctor out there with a perfect track record, probably not.

I will follow up with them tomorrow though! Thank you for the encouragement!:)

Thank you too Cynlite!

I did send out my images to ONZ for their review today! Thank you for your insight. I really appreciate it! It means so much as you know!:beer:
I did look up the names you posted and it really does make you stop and think more about Dr. Bertagnoli. He just updated his website on a bunch of 4 level ADR patient comments too and one 5 level. But after reading all about Jamie in 2010, I don't feel totally comfortable even though he seems to have learned from that type of horrible error, as I heard he now requires every patient to get a Dexa Bone Scan before ADR surgery. Who wants a doctor to learn on them? My prayers are with her and everyone else suffering. I wish this board could compile outcomes along with how many levels and what doctor.

2 level limitation - Correction!
 

jss, I thought the FDA approved the Mobi-C for two levels in the U.S. How does TBI get around that and do four levels? Maybe it has to do with whether or not they are consecutive levels. Thanks for correcting my error. I checked my notes and did see one incidence where someone had 4 Prodisc-C ADRs (don't know surgeon) and 1 incidence where someone had 3 Prodisc-C ADRS in the U.S. (Dr. Chapman, WA 2008.)

My understanding is that it works something like this ... the FDA doesn't approve a device for some number of levels, but rather they approve the device within the parameters of the trial. After which any usage of that device outside those parameters is termed "off label". Unless explicitly decreed, "off label" usage is not prohibited by the FDA. But, good luck getting your insurance carrier to cover an "off label" application.

The four level ProDisc I was referring to goes by the handle davidj8121 on this board. He had four lumbar levels done by Dr Zigler at TBI.

Anne,

TBI is a spine facility that participates in a lot of IDE trials. So they are on the 'cutting' edge of most all spine treatments that are new in the US.

Most of the surgeons there have been doing ADR for many years and are probably on par with their European counterparts. As spine surgery is a for-profit business and not a charity, I think that their pricing, willingness to negotiate, etc ... is all based on the desire to make a buck. My guess is that if they have a slow time (like a car dealership when it rains) that you could negotiate a better price than if they have more patients than they can treat.

If you know of a specific doctor there that you want to see, you can request an appointment with them. If not, then they'll assign you the next one that's available.

Some countries have national registries for surgical procedures where you can look at success rates for a myriad of procedures; English Wales Joint Registry, Austrailian Registry, etc... I'm unaware of such an animal for the US. I don't know how you'd go about comparing US and European success rates other than forums like this one. That may not be a 'good' way of comparing, but as far as I know it is the ONLY way.

If you have surgery in Europe (like I did), it is likely that you'll have trouble finding a spine surgeon in your area that is willing to treat you if, may God forbid, you have problems when you get home. It took me weeks to find a surgeon in the Dallas area that was willing to see me for a "well-baby" check a year and a half post-op. That is a common story btw.

All surgeons have bad outcomes, and for a host of different reasons. A key is to find one that seems to have among the lowest rates of of bad outcomes. Unfortunately the only way I know of looking at their outcome rates is by spending hours and hours in surgical outcome forums. This is what Cynlite seems to be currently doing, and it is the absolutely best way to start this process. If you do that too, you will begin to see patterns emerge; patterns with doctors, with implants, with specific treatments after specific symptoms, etc... I wouldn't shy away from Blumenthal just because you've found a patient that had a bad outcome with him. Now if you discovered that was a pattern, then yes. (you won't find that btw)

Good Luck!

Anne, as a patient who just had ADR at the Texas Back Institute I can attest to what JSS is telling you.

Gene

Many thanks to you all!
 

I wish I joined this group months ago. I was told not to trust what you read online and that can be true but it is also the only way to hear about other patients and their outcomes. All the surgeons I see make fun if I reveal where I've heard things and my parents have made comments to me that only people in pain come on them to it is skewed regarding happy fusion patients, if there are any?

I felt pressured to take the 3 level fusion of C4-C7 appointment for surgery I have for this Monday, as I don't have the money to do it on my own, I hate the idea of taking it from my parents, currently unemployed and my parents have been scared by the local surgeons on my appointments so it is very hard to really change their minds. When I panic I feel maybe I should go for TBI. I have seen a few times people aren't really happy with ProDisc & Mobi C though. I even had a Medtronic rep who knows the local doctors in my area suggest to me not to risk a 3 or 4 level ADR. I need to get on the right path with this!! It is hard when you are fearing loosing the use of your dominant arm!!:eek2:

As a four level cervical patient (two fusion / two adr) I have to really talk up Dr. Clavel. Read Cheryl's post in the ADR surgical outcome area. I don't work for any of these people but I do like to share my story and would be willing to talk to you if you would like. There are many great surgeons overseas that are very experienced with the latest technology. I feel at times that the US is just on the cusp of this type of surgery but are not quite there yet. PM me if you would like to discuss.

Anne, if I read your post correctly, you are scheduled for the fusion surgery on Monday? If this is true, please check out the Facebook group for Cervical Disc Replacement Surgery. People on that page are having both fusion and ADR surgeries. I think you might find them to be a good support group for you too. There is also a group for just fusion but I could not find the name. Sorry this is not working out for you as you would like it to. Wishing you wellness and a good recovery.

Hello and thank you adr support family. I'm 24 hour out of surgery. I'm still very weak from throwing up from the anesthesia. But I wanted to thank everyone for their support, love and caring. As I mentioned I was really sick for the first few months where I couldn't concentrate on the Internet. All my docs over the years told me that spinE sugary was very rare. But apparently not for us. in the last month and a half I had to evaluate waiting too long to get ADR at this point, when I have such bad myelomalacia that I could be paralyzed if I fell, in comparison to wiping out my retirement and taking a lot of assistance from my family too. Considering all that it was too risky to get the adr for me, I had the 3 level fusion from C4 to C7. I must face this with good faith to make the most of the gifts I do still have in life. I hope this all sounds coherent as I'm still quite drugged etc. Lover and blessings to you all!:angel:

Anne,

Congratulations on being on the other side of surgery! I'm so sorry you were sick from the anesthesia. I've been there and done that....it's not fun at all.

We all make the decisions we have to so, I'm sure you made the right decision for yourself. Having a positive attitude makes a huge difference and it sounds like you have one! Wishing you a speedy recovery and many pain free days going forward. :angel:

Cynlite

Best wishes Anne for a smooth recovery and becoming pain free soon. Please keep us posted on your progress, and we'll keep you in our prayers.

I am glad to hear that you had the surgery and are only feeling the effects of the anesthesia. Considering what you just went through, that really is not too bad. I hope you have a good recovery and will keep updating your post. Good luck and I hope you feel better soon.

I echo that
 

I did not like Dr. Bertagnoli will only use the Pro-disc which he is vested in and he was more money than what Dr. Bierstedt quoted. Bierstedt uses the M6 and the Mobi-c if needed. I am so glad that I choose Clavel though. It was a hard choice too because we have family in Germany; near Munich, and I lived in Baumholder Germany for three years! For me personally; my three level fusion has not been positive to put it mildly! It can and most likely will lead to more surgery down the road. If it's just cervical; you could even do the trip alone and just take rolling bag; pack light. Barcelona is so easy to get around.

Ann,

Best wishes on your recovery. Please keep us updated.

Colorado Babe

Thank You!!!
 

Many thanks to all the kind and beautiful people who have sent their thoughts and prayers my way! Thank you Cynlite, Dema, scoop302, Cheryl0331, colorado babe, jss and NJ Gene!
It will be two weeks this Monday for my 3 level fusion C4-7. All of my pain had been taken away when I woke up as it would seem to also do with ADR. In the end, as a single woman who was in a lot of pain, unable to drive and fearing a fall could result in me being paralyzed I went with the fusion. The cost would have been a strain too and my elderly parents did not feel good about traveling to Europe at all. I couldn't put them through it, especially if the surgery failed in some way.
Gene, you were so kind to help me see that it was ok to choose the fusion, given my circumstances. I'm going to keep a positive attitude and do the best I can at physical therapy when my doctor clears me to do it. Right now I need to try to walk each day outside. The heat and the collar don't mix well. I walk inside some days and track it on a pedometer. My four inch vertical incision still hurts and I'm not looking forward to having the 12 steri strips pulled off this Monday. When I feel my incision pain, I take Dilaudid and it makes me sleep alot. Tylenol doesn't work. I am trying to ween myself off and only take them when I really need it.
I did hear back from Dr. Bierstadt a few days ago, and I got a quote from Clavel yesterday. They seem to charge about the same, except Clavel doesn't quote hotel and food for a travel companion. They both recommended a 3 level ADR for around $36,000 to $38,000 total. Dr. Bertagnoli was at $56,000 for a 4 level ADR. Interesting, that of the three he would have chosen my C3/4 in the mix, even though that one did not compress my spinal cord. I'm not sure if that is to prevent further surgery or overdoing it. I have been feeling somewhat sad about not getting the ADR. There was a point in the hospital where I woke up and was wondering why I was wearing a hard Miami J collar while I was in Spain!?!
If it were up to me personally I would have taken the chance on the 3 level ADR. And if I had unlimited funds I wouldn't fear having to travel back to Europe should I need it. Five out of 6 of the American surgeons I saw were so fearful of a 3 level for me, one would do a hybrid but he did not take my insurance. I even have a Medtronic sales rep at my church who knows all the surgeons in the area and he advised me against it. He told me which doctors have the best success rates and when I saw one of them he said, if it were my wife, in your condition, I would choose (the surgeon I used) and get a 3 level fusion. Because if it fails they may not be able to fix it and it will be hard to get a local surgeon to help you. You may end up with the fusion anyway but in two surgeries which would make it less chance of being successful. And this is from a doctor who does ADR one or two levels in the states.
In the end, everyone needs to look at what situation they are in and what is right for them. I need to remind myself there are people out there with successful 3 level fusions as I really had no choice. And believe me I tried hard not to get it. Life could be much worse. I'm grateful for what I have and will do my best with what I have.
Thank you again for all your love and support! I look forward to hearing about all of your successful ADR recoveries! xoxox

Anne, congratulations on a successful surgery and best wishes on an uneventful recovery. Isn't it a hoot to wake up from surgery feeling better than you did when they put you under? It sounds like you're off to a good start in your recovery. You'll probably find that you're able to do everything you need to do unaided very soon (if you haven't already).

Good luck!

Anne, this is the best any of us can do! Congratulations on being on the other side of your surgery. Wishing you wellness and many pain free days to come! Let us know how you are doing.

Glad the pain is much less, and pray the incision will heal nicely and quickly, and you will be pain free.

I am so glad to hear that you are doing so well. At this point, it doesn't matter which surgery you had, you are pain free and a huge weight has been lifted off you. I hope you keep getting better and better.

that is the point
 

options are great, sometimes we don't have a choice, but it's good to have all the information. The end result is what is important! Glad you're doing well...