Newbe Intro:

[marzman54]

Hello all,

I have been a long time lumbar and cervical US. patient from the northeast and have been recently looking for info on ADR surgery here and abroad. I am currently on permanent SS disability ( which took 2.5 years to get) and have gone through most every kind of treatment available currently and it mimics a lot of your experiences as I have read a lot of everyone's posts in the past couple weeks. I have in the past years had a steady decline in health starting with a bad sciatic episode in 2010 that left me down for 3 weeks and was never quite the same after that. I also have had many cervical problems in 2011 as well with arm / shoulder blade pain with numbness and tingling in hands/ bad headaches etc.. I had bilateral carpulltunnel surgeries because the ortho doc said that was the cause of my numbness and tingling ( not so ). I was then diagnosed with late stage Lyme disease in late 2010 and wont go into too many specifics but ended up bed ridden in 2011/2012 with daily IV,s for 9 months. I have been to 3 spine doctors here in the northeast and they are all saying I need surgery of some type or another. Fusions mostly but when I did have insurance in 2012 I was turned down for insurance coverage for a l5-s1 fusion surgery and lost 2 appeals.
2013 I had a lumbar discectomy and 2014 I had a fusion at c5-6.

Fast forward to present - I have been in contact with 2 doctors in the US and 4 in Europe since I found out about ADR,s in late 2013. Currently all doctors evals have indicated that I am in need of 2 to 3 level cervical ADR,s (the 3rd level being if fusion has not taken place) as well as 2 to 4 level ADR or ADR/fusion surgery from L5-S1 to L2-3 (in which one doctor is saying that L2-3 is already starting auto fusion).

I have been an athlete most of my life and raced motorcycles at the pro level for 9 years with over 30 years of racing under my belt. I have worked extremely hard all my life in my own construction business here in the northeast for 30 years. I think that most of my problems are stemming from my work and racing in which I have had accidents and incidents( as we call them in racing) over a period of many years in which I would very rarely see a doctor ( old school mentality ).
I would like to wish everyone a happy and healthy new year and hope to gain some advice for my decisions going forward.

Marzman54
(as monty python said - "always look on the bright side of life")

[NJ Gene]

Marzman,

Welcome to the forum! I'm sorry to hear about your issues. I'm kind of surprised that your insurance disallowed L5/S1 Fusion in 2012. Getting insurance to provide coverage for ADR seems to be the major issue on these boards, mostly because it's still considered "experimental" even though several of the devices have been approved for use by the FDA.

What kind of insurance do you have now? Have you consulted Texas Back Institute? I've heard of a lot of success stories with people who had ADR there. You also have a chance of being covered for all or part of your surgery there, being that it's in the U.S.

The spine surgeon I used is based in NYC, right across the George Washington Bridge from me in Fort Lee, NJ. Although he doesn't perform ADR, he does a free review of your MRI and will give you his recommendations. If he thinks ADR is the way to go, he knows some of the best surgeons for it in the U.S. Send me a private message if you're interested in getting his information.

As a C.P.A., I can give you some financial advice if you have to pay out of pocket. This is regardless of where you have your surgery (can be in the U.S. or anywhere else in the world).

Good luck to you and Happy New Year!! I hope 2015 is the year that you start to get your life back.

Gene

[marzman54]

Gene, thanks for the offer . I will send you a pm later. I have Medicare a&ab and supplemental United healthcare.

I had empire bcbs at the time and I had a positive discogram as well and they denied the surgeons appeal and my appeal partly I think because I was on there cobra coverage and it was about to run out within the next month. After my cobra coverage ran out I tried to get the surgery done out of pocket but the costs were way more than we could afford. I will admit I put way to much faith in my doctors to do the right thing and relied on them for all the research I should have done myself. I did not even find out about Adr,s until late last year. It,s been extremely frustrating as I have been going from doc to doc trying to get something done and every time they want you to go through the same old routine ( phys therapy, injections, etc.) over and over again while I am wasting more and more time. I went to 3 doctors over the last 3 years and I am just tired and want to get back to having a life.

In the past 6 months I have sent out medical packages to 6 doctors for review ( some in us and some overseas ) of which one did not even reply to my inquiry. I have an appointment with a doctor at Yale in conn. on Monday for another review and hope that he might have some more options for me but I won,t hold my breath.

I guess you can summize from my thoughts that I am at my wits end with this and every day that goes by I feel that more damage is occurring to other areas including facets that might just make adr surgery an impossibility. I guess if I didn,t have to wait 1to 2 months every time I want to seek another doctors opinion in the us I wouldn't mind getting some more opinions from them. At this point I would fly out or drive out anywhere in the us to meet these doctors face to face and hand them my medical packet directly to maybe expedite the evaluation process. I have kind of put my foot down an said enough is enough I need to make a decision and get something done because I need to get back to work and catch up on bills.

Thanks and a happy new year to you also.

Bob

[Harrison]

Marzman54…

Welcome, but I am sorry you are here. I hope we can help. Some related forum topics follow; pls note that they are multipaged. I am sorry you have Lyme disease, the biggest and most ignored epidemic this country has ever seen: 300,000 to 400,000 cases annually and most undiagnosed and untreated!

Long topic here on how bacteria invade spinal discs:

http://www.adrsupport.org/forums/f50...al-pain-12687/

Study on (random) patients with lumbar spinal pain and antibiotics (nothing specifically about Lyme but excellent outcomes):

http://www.adrsupport.org/forums/f50...ck-pain-12171/

As you may have learned, certain bacteria like Borrelia Burgdorferi (that causes Lyme disease) have a proclivity – a bio-program – that helps them find, eat and hide inside collagenous tissue. And even inside blood cells. That’s how they survive. The problem is that that they do this at the expense of us and our quality of life.

I’ve spent years on this critical health issue and would be happy to point you to patients, doctors and other resources that might help you heal from the inside out. Bottom line: if you treat the cause of the DDD, you will have a FAR better outcome and may even be able to avoid surgery!

[Dema]

Hi Marzman, I have seen many spine specialists in the Northeast area (NYC/NJ/Philly) at Hospital Special Surgery (3 surgeons), NYU (3 surgeons) NY Presbyterian, MT Sinai, Rothman Institute (Philly), several surgeons in NJ, but the only one mentioning ADR was Dr. Bitan and offered a hybrid (1 level fusion + 1 level ADR) and after scheduling surgery, I cancelled because I was not comfortable about the Hybrid nor the Pro-Disc ADR.
I have reached out to Dr. Lauryssen in CA and Dr. Wohns in WA, and both recommended ADR's, with M6 in Switzerland (Lauryssen) and Mobi-C (Wohns). I was supposed to have surgery back in March, but sustained a spinal cord injury during a nerve root block late February, and surgery could not be performed until the cord heals!
So given my experience, I find the West coast is more ADR friendly, or Europe. where I have sent MRI to UK & Germany and looking to get responses this month!
Hope to 2015 will bring pain relief for all, starting on 1/7 for two of our friends here.
Dema

[marzman54]

Thanks Harrison and Dema for the welcome.

Harrison, I would gladly take any info I can get on the further treatment of my Lyme disease for sure as it is in what my doctor calls remission and I currently keep in check with supplements, herbs, vitamins, stretching and exercises( which aggravate the back and neck ), correct food diet ( nuts,fruit,greens,etc..)and infrared sauna. You can never have enough info on a subject like this as I have found out over the past 4 years. If you have any links to materials I would greatly appreciate them in a PM. I have a fantastic Lyme literate doctor from Mass that took me quite a while to get into to see her as there is quite a waiting list for these types of doctors. She is an MD and a holistic/naturopath doctor and tends to combine the best of both worlds.

I will say it was pure hell getting through the first 2 years of treatment and without her constant support I don't think I would have made it to where I am now. I was referred to her by David Hunter from the NH chronicle TV Documentary back a few years and he also runs a Lyme support group as well as an internet information network. My doctor an I have been round and round on the affects of the Lyme disease on my ongoing spinal issues and she is of the opinion that anything is possible but with my long history of spine problems well before my chronic Lyme disease diagnosis that Lyme is not the cause of these issues but it does tend to attack damaged areas of the body first so it could be making it slightly worse but with my remission at present she does not think it is significant enough and thinks that disc replacement or fusion is the safe coarse of action since everything else has failed. I will always have on again off again issues with the disease but at this point my immune numbers are steadily increasing which indicates that my natural immune system is fighting the invaders with support from my daily regiment.

Maybe this subject should not be in this thread Harrison ( I am not sure how the structure of the forums work quite yet ). If you feel that this issue should be in a new thread I would gladly start a new thread or add to an old thread already started on this issue to help out anyone who may be subjected to this disease or is a family member of such. Let me now what you think.?

Dema, I have also inquired to many surgeons overseas and a few here in the U.S. in which I have received varying degrees of diagnosis's and I will admit it tends to be quite confusing to distinguish between them which is the correct way for me to go. I am not throwing out the opportunity to stay here in the U.S. for surgery and maybe even get it covered partly by my insurance. I have an appointment with Dr. James Yue from Yale University medical on Monday for a consult/evaluation and testing. I have also contacted 2 more surgeons on the west coast and one in Texas from PM,s I have had with members of this forum. These forums are great and seems like the people are very caring and forthright about there opinions and recommendations. I can't tell you how much I appreciate the help bouncing off ideas with others in the same situations.

Thanks Harrison,
marzman54 / Bob

[drewrad]

Bob, been thinking about you, let me know how you consult goes Monday.

Drew

[marzman54]

Thanks Drew, I will let you know how it goes Monday evening for sure.
Thanks again for the help.
Marzman54/Bob

[marzman54]

Originally Posted by drewrad

Bob, been thinking about you, let me know how you consult goes Monday.

Drew

Drew, just figured I would update you. I made my decision yesterday after a lot of phone calls, email, office visits, and a lot of research and thought the last couple months. Pain is getting worse and symptoms are elevating. I am going to Germany on the 14th of February for lumbar and cervical surgery with Dr. Bierstedt. I had another call with him and my Lyme doctor a few days ago and he said that the cervical is an issue that needs to be addressed sooner than later. The lumbar issues are to be determined once I get there and go through an extended preop evaluation once I get there as to the amount of surgery and also now that the pain has also moved up to the L2-3 area. He will also address the facets at L4thru S1 with me. As this is a concern of his and mine from the get go.
This decision did not come lightly for me as is with others I have read about on this forum, but due to the concerns of many surgeons I have talked with I have to pull the trigger now. From my first conversation on the phone with Dr. Bierstedt I felt a good vibe ( if you will ) with him and his team, Ken and Malte have met my every expectation and communication was superb to say the least. I can't say that for most of the surgeons I have received evals from. 4 in Europe and 6 in the US to date.
I had my last MRI today of lumbar and a CT scan of cervical to update all my imaging to date for him and all the blood work / bone density scan/ EKG and MERSA testing will be completed on Tuesday.

"Here goes nothing"

Hope all is well and will talk soon.

Bob

[NJ Gene]

Bob,

I wish you the best of luck. I believe you'll be in good hands with Dr. Bierstedt. I was two weeks away from 2 levels of ADR with him, when Dr. Frazier talked me out of it. However, in your case, you need somebody very experienced with ADR. I believe you will do well with him.

I look forward to reading about positive outcomes on this forum once the surgery is complete. Since you are making the expenditure to travel overseas, don't forget about all the medical deductions you can take on your tax return. You know how to reach me if you have any questions.

Warm regards,
Gene