my painful story
 

Dear All;

This is my first posting on the forum that I fortunately discovered by accident.

I had a 2 level laminotomy in April 2011 and life has been miserable ever since. That was after consulting 3 surgeons who each had a different recomendation "do nothing" to "fusion", so I took the middle road, and have been suffering ever since.

I have seen my surgeon many times for follow up but all I hear is that my MRI is normal. That is a bad joke as I am in constant pain with numbness in both feet as the day goes on.

A friend of mine had mentioned disk replacement surgery in Germany to me at the time and I thought that was a crazy idea. Well two years later I no longer think that it is crazy, just scary.

My friend's son was operated on by Dr Ritter-Lang in 2008 and had good results, although he did mention that it was like a production line. Since I have been reading on the Internet I have come to realize that Ritter-Lang is
controversial.

I have been in touch with the office of Dr Thomas Bierstedt and his contact in
Germany; Malte Petersen. I see that Malte had been associated with Stenum and Dr Ritter-Lang but I have no information on Malte of on Dr Bierstedt, other than that they claim that he is one of the worlds greatest surgeons. They are recommending a 2 level ADR at S1/L5 and L4.

I had a phone call from Dr Bertagnoli's US agent, Tim Mcvair, who was rather
abrupt and had to hang up for another call. He has not returned my e-mail since our telephone conversation. Needless to say, I did not get a "warm and fuzzy" feeling although I cannot rule out this option.

The pain and numbness gets worse, it seems, by the day. I have a phone called scheduled with my physiatrist as HSS later today as I had asked her about ADR and I hope that she will give me some good advice. She has given my about 3 injections but they do not help. I have also tried Gabapentin and Lyrica which don't help either.

My questions are: does anyone have some feedback on Dr Bierstedt as there are very few comments on the forum? I would welcome any other suggestions that you might have.

Thanks for reading.

Mike

Mike welcome happy/sorry to have you here. ;)

If you are looking at Ritter-Lang and are considering the M6 I would suggest you look at Dr. Pablo Clavel in Barcelona. Scour the message boards for some recent posts of mine for his contact info. A LOT of the patients here have had or are scheduled to have surgery with him and I think you would find a consultation with him beneficial.

-Jeff

Hi Mike,
Sorry to hear that you have had to join this group but welcome aboard. I am very new so most have a lot more info than I do. Dr. Clavel seems to be consistently highly regarded. I have had great success communicating with his office so far, I have not yet had a personnel consult with him. I would like to, but I need to figure out how to handle my care back in Buffalo, NY after surgery. I can not find any doctors willing to be part of the aftercare that is needed.

Hi Mike,
Sorry you are in so much pain :(. Just wanted to tell you my experience with Dr. Bierstedt. He operated on my back last November, I have an ADR at L5/S1 and I recovered without any complications and must say that this was my best decision in a long time.
Dr. Bierstedt is very personable and never rushed me, he took his time to answer all my questions and made me feel at ease. The surgery went as planned. Dr. Bierstedt has only 2-3 surgeries on one day, not an asembly line!
I hope that you will feel better soon with whatever decision you make!!
It was worth it for me, almost brings me to tears because I can do things now without major backpain like playing with my kids or just do normal household chores.
Hope I could give you some feedback,
Claudia

Thank you!
 

Wow, thank you for all the great input. I have seen the name of Dr Clavel I the forums and he had good reviews. This is a very scary venture here but living with the pain is not really an option either. My physiatrist from HSS called my today to tell me that ADR was not an good option for me, but that I needed to calm my sciatic nerve. Ok, we'll I have been seeing this doctor for 2 years and my sciatic nerve is not calmed at all.

I wish they would have just told me, "yes, great idea". Well life is not so clear cut . I am getting another opinion on Monday. In the meantime ..ouch!!

Yes, sorry to be here but glad that this forum exists.

Any additional input is always appreciated. Too much suffering for us. Were our backs only designed to last 45 years but now our life expectancy in 75-85 years old?

Looking forward to the dialogue.

Mike

Mike,

Can you get a copy of your x-rays and MRI?
If so, you can send this off to the overseas docs and get their opinion.
Some charge a fee for this, but it might be the best money you've spent to get
an opinion from a doctor not governed by the FDA rules.
As far as I'm concerned, it's the best money I ever spent!

I was just going to say the same thing! I have never felt more comfortable with a doctor, and I think most doctors are idiots. (I've had a run of bad experiences until recently, including nearly being killed by one). I am looking at possibly six levels and feel completely comfortable with Dr. Clavel. When I opened up our consultation my first question was if there was a time limit for the consultation, and if there was I was prepared to pay for as much time as I needed. He seemed entirely perplexed and said "Time limit? There's no time limit."

No amount of money can buy THAT kind of care. Only a decent person who genuinely cares about his patients can provide that.

I had the EXACT same experience in my consult - I asked him how much time we had and he said - "as much as you need". :P

Seriously get him to review your images (for free) and then get a consult with him (for a reasonable fee).

-Jeff

Hi Vicki; Thanks for your note. Yes, I have send my MRI and recnet X ray to Dr bierstedt, and I got an answer almost immediately. He recomments a 2 level ADR. My feet are both numb today. I am ready in my head to get on a flight to Germany, but some friends tell me that I am crazy. If they felt what I feel thay would already be in Germany! Mike

Mike, in general i would recommend you try to get opinions from at least a few doctors to make sure there is a reasonable consensus of opinion as well as to feel out more options.

Hi Jeff, yes I have to agree with that. My physiatrist at HSS recommends that I get the nerve under control, but so far, not have given me injections and medication, neither of which has helped. I have to reach out to other surgeons such as Dr Clavel. In the meantime, this is difficult to live with. Mike

Thank you Jeff. I have contacted the office of dr Pablo Clavel based on you recommendation and on the positive reviews here. It seems that he was once affiliated with Ritter-Lang but not sure how. Their names were on the same website that might be antiquated. Best regards, Mike

I just returned to the US last Friday after a 2-level ADR with Dr Clavel in Barcelona on January 10th and he & his team are AMAZING. He not only has time for you before he has "your business" and is doing the phone/Skype consult, but also when you have your pre-op, the morning of the operation and your post-op. For my post-op, he had a full waiting room (it was actually pretty funny as 1/2 of us had neck braces on) and he still totally took his time with me and answered each & every question my husband & I had. It is not AT ALL like American care where you are just a number.

Yolanda (his assistant) is very helpful and Laia, the physical therapist, comes to your hotel after you are discharged from the hospital and works with you. She has magic hands!

I did not have one negative experience with any one on staff at the hospital - everyone was very pleasant and supportive. I highly recommend you talk to Dr. Clavel. I am sure there are many other good surgeons out there, but I honestly don't think you can do better than Dr. Clavel.

Hi Jeff, well I FedExed my MRI to Dr Clavel and he will have it on Monday. It seemed impossible to upload on the website they have for patients, but that is a nice touch to have your own log in. He will have recent x rays and the MRI so now I mucst awai the recommendation. A physiatrist I saw at HSS this week said that if the Gabapentin, the physical therapy and some possible injections don't work....then she would recommend a fusion! When I asked about ADR, she said. I was not a candidate. Well is that trus or do we just prefer fusion in the USA? She said something about arthritis in my lumbar....well there is not much disk left so doesn't a replacment make sense? What do I know? Let's see what Dr Clavel has to say. Another forum member was very happy with Dr Bierstedt in Germany, but although he seems less well know than Clavel but I cannot base a decision on that. By the way,the DVD produced by the founder of this forum is very good; he was kind enough to send it to me right away! Anyway, thank you all for listening any any input is greatly appreciated. Mike

Amy; i just saw your post and that is most helpful and reassuring. I am anxiously awaiting to hear from Dr Clavel. Yolanda has been corresponding with me and has kept me on track to provide that Dr Clavel needs to make his diagnosis. I did not realize that I might have a Skype call....that would be great. In the meantime, I need to something soon. While I think of it, I should add my history to my signature....soon! Thanks for your comments! I hope that I have such a great experience. Mike

German docs
 

Hey mike! Any news. I'm in new York also and have been in contact w clavel and beirstedt. Tough decisions to make. Has your physiatrist helped you at all? That's one thing I wanted to try. You also may want to look into dr zeegers I had a long phone talk with him for free great guy lots of experience. Stay strong!

They are running behind. Still playing catch up from the holidays. You should hear from them soon.

Hello Boxer, I would have replied sooner but I am traveling and just saw you comments. I am seeing a physiatrist from HSS who has prescribed Gabapentin and physical therapy. The first session of PT made me feel worse for the rest of the day, but the Gabapentin seems to help a bit. Dr Clavel's office wrote back indicating that he would like to try a 2 level ADR, but if, during the the surgery, the ADR did not seem appropriate, he would do a fusion.

I am not really comfortable with the idea of finding out after the surgery what procedure was actually done on me. So I asked for some additional feedback. I read that some people have had Skype calls with Dr Clavel but they have not offered this to me yet.

I will Google the name of Dr Zeegers and see if I can find him. Thank you for the feedback. Mike

Zeegers, as of not too long ago, was at the Beta Klinik in Cologne. He's still listed as a consultant on their webpage but I don't know what that means about his practicing there. Kopf, Wirbelsäule, Gelenke, Gefäße - Beta Klinik - Internationale Privatklinik Bonn

Zeegers
 

wzeegers@zeta.demon.nl. I'm not sure what hospital he is working out of but he's a very nice guy he called me on a sunday afternoon after I emailed him my situation the day before. He asked to hear my entire story then asked a ton of questions and said the diagnosis it the hardest and most Important part. He then emailed me a ton of questions etc to send back to him. He said "I need to know everything about you" lol. Call was no charge. So it's at least another opinion from a guy that's done thousands of procedures.

Has he looked at your films yet?

Hello, yes Dr Clavel has a recent MRI on a CD and also x-rays. He is proposing a telephone. Consultation at 180 Euros later this week. Thanks for the info on Zeegers. I will definitely write to him today.

FYI a Zeegers consult is very involved which is good, but it is correspondingly expensive.

That's weird he wouldn't know if it would be an ADR or a fusion. Is he worried about facet damage?

Hi Lilith, he did not say why a fusion might be necessary, only that he would make that determination during surgery. I'll know more after my telephone conversation on Thursday. I am on 3 x 800 mg of Gabapentin. Dr Zeegers called that "poison"! Well I guess that European doctors do not see exactly eye to eye with their American counterparts. More to follow on Thursday. Mike

Great. Please do keep us updated!

Jeff, yes he called me today and dropped the number on me. I am wondering what to do as Dr Patrick O'Leary in NY, (ex head of spine surgery at HSS and now in private ), charges $500 for a consultation. He does not take insurance but he does ADR... I have many options and must narrow them down or this will start to get expensive. Mike

Hello Boxer, Dr Zeegers called me today after my e-mail from Friday....very efficient. He is quite adamant about doing a very thorough diagnosis and what he say makes sense...but it seems that an office visit would be the best. If I agree, then he would send an 18 page questionnaire for me to complete...and then later a 12 page questionnaire. Then on a Skype video call he will ask you to do certain movements. Well I am mulling this over as there is a high cost involved of course. He does not seem to be pushing for any surgery and has many years of experience. Does any one have more experience with Dr Zeegers? Thanks, Mike

Zeegers
 

Hey great news! I just finished the paperwork he sends and will be sending it out this week. I feel like his opinion is priceless even though the consult is a little pricey. U should def get his opinion and go from there.

Dr. Dare in England had told me that he would decide on one of levels being a fusion or adr during operation as well. He said it would depend on much much movement he was able to get.

How much is the Zeegers consult?

Zeegers consultation
 

Dr Zeegers services are 630 Euros; he indicated that it takes him 3/4 of a day to complete with a Skype video call as well. Also the patient must fill out one long questionaire (18 pages) and the one shorter one; only 12 pages! He seems very thorough.

As I recall (from several years ago) Zeeger's evaluations were very thorough. In the history of this forum (since 2004), he's the only spine doc that ever identified Lyme disease in a spine patient! Of course, he probably found others, it's just the one I heard about.

After many years of research, I have no doubt that Lyme (Borrelia Burgdorferi) and other microbes play a central role in DDD. Presumably, doctors like Zeegers understand this etiology. I try to have (or should say, "had") this conversation with MDs but they are not interested; though the university PhDs have known this for years.

My point is, try to have a thorough consult and work-up sooner that later, and ideally get a doc that treats the whole patient...not just the critical space in your body with DDD.

Zeegers
 

Wow that's interesting about Lyme and DDD!! I have been tested but not sure if tests are reliable?? I really feel that zeegers genuinely cares about helping people and leaves no stone unturned

I have a friend who is suffering from some sort of auto-immune issue. Lyme test are definitely unreliable, i.e. you can have false negatives and positives and can have one marker be positive and another be negative. :/

Lyme
 

Scary that Lyme can cause DDD??? Jeezus

Just for the record, few docs would say that Lyme arthritis can cause DDD. However, once you talk to docs outside of orthopedics, you may get a different opinions and acceptance.

This notion of bugs (of different kinds) causing spinal disc infection -- both acute and chronic -- is old news. See this long (seven page) topic:

http://www.adrsupport.org/forums/f44...l-causes-9218/

If you are curious or motivated, go to the Lymenet discussion board, use their search function to search for spine pain -- there are hundreds of topics unfortunately:

LymeNet Flash: Medical Questions

And for example, one of many topics on this subject (note Babesia, a co-infection of many that can accompany a tick bite):

http://flash.lymenet.org/ubb/ultimat.../119958#000000

Anyway, docs that diagnose and treat the whole patient tend to understand the multifactorial causes of DDD better than specialists. It's a sad symptom of our system that has 131+ specialties...and counting. Who is left looking at the big picture? Only a few professions, and the most helpful person that knows best....YOU!

Lyme
 

Wow thx for the info!!!

Spine infection
 

So how does one know if they have an infection like this?? Would MRI detect inflammation?? Scary

Rich has good info about testing on his other site but there really isn't any good way to detect it using imaging techniques until it's so far along it's basically irredeemable.

Lyme
 

So would the person show symptoms??