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-   -   New Member Intro - Nestletea (https://www.adrsupport.org/forums/showthread.php?t=13553)

Nestletea 11-26-2016 02:02 PM

New Member Intro - Nestletea
 
Good Afternoon,

I wanted to introduce myself and give some background history on my injuries. I live in St. Augustine, Fl and work as a guidance counselor. I am married and have two boys - 7 and 10 years old, who are both extremely active. As a family we love the beach, soccer, walking, visiting Old Town St. Augustine, and watching football.

On August 13, 2015 I was rear-ended at 45 mph while stopped several cars back behind a school bus. This rear-end collision caused a herniated C5/C6 and L5/S1. I began my long journey of conservative therapy and underwent several MRI's and NCV/EMG's. I lost strength in my right leg and had foot drop and began experiencing intermittent saddle area numbness. I experienced constant sciatic pain down both legs, although worse on the right side. I also lost strength in my right arm - bicep and wrist ex-tensor. I had numbness into my fingers and into my right foot. I should mention that in the middle of all of this I learned from trigger point injections that I am severely allergic to medrol and suffer from anaphylaxis. This allergy ruled out epidural steroid injections.

The first neurosurgeon I met with immediately wanted to complete a fusion on both levels at the same time. I then went for a second opinion and was blessed to meet Dr. Cannestra with Lyerly Neurosurgery. He took me in for a stat Microdiscectomy on 1/8/2016 (the very next day after I met him). I had immediate relief and was able to regain strength in my right leg/foot. On 3/17/2016, I had a cervical disc replacement utilizing the Mobi-C. All of my neurological issues have dissipated in my right arm. However, I still suffer from severe muscle spasms and occipital neuralgia.

This summer my husband and I enjoyed a trip to Niagara Falls for our anniversary. It was at this time that I re-herniated my L5/S1. My neurosurgeon felt as though I did too much walking and put too much stress on the disc. He then recommended a new pain management doctor. I began seeing Dr. Christopher Roberts at Jacksonville Spine Center. He tried a procedure called a Dekompressor Wand. This did help relieve the sciatic pain on my left side and I finally regained the urge to urinate after nearly a year of the inability to feel that sensitivity. However, I have seen very little improvement with my right leg/foot and am still suffering from sciatic pain. I have once again been sent for physical therapy (I have well over 40 visits this year alone). I have also been diagnosed with DDD.

Dr. Roberts is also working on the continued headache and muscle spasms that I suffer from in my cervical area. On 11/23/2016 I went through my first round of facet block injections at C2-C5, without steroids, due to my allergy. I did have immediate relief of the spasms and headache. I will again return on 11/30/2016 for another round of facet block injections. If the second round works, then I will most likely undergo radio-frequency lesioning at these levels.

During my visit on November 23rd, after Dr. Roberts said he was going to send me back to the neurosurgeon, I opened the conversation regarding traveling out of country to Germany/Spain for my lumbar issues. I was pleasantly surprised by Dr. Roberts response, as he has had several patients that have traveled to Germany with successful outcomes with ADR on the lumbar spine. He even offered to have a patient of his contact me regarding his surgery in Germany.

I have been completing a ton of research on ADR in both Germany, Spain, and the Netherlands. I contacted and received evaluations back from Ritter-Lang, Bertagnoli, Bierstedt, and Clavel. I spoke to Dr. Zeegers on the phone. His consult costs approximately $1000. I have been able to rule out several doctors based on my research.Dr. Bertagnoli in Germany only offers the Prodisc-L ADR, and I am much more interested in receiving the M6. I have read numerous negative outcomes regarding Ritter-Lang and have ruled out utilizing him. Finally, I have read that Dr. Zeegers takes months to respond to his evaluation, once all paperwork is submitted, although he is a brilliant surgeon. That leaves me with Bierstedt and Clavel. I am honestly leaning towards Clavel, but would love to hear from other members who have experience with either surgeon. This decision is life altering and I want to make the most educated decision possible.

Thank you in advance for all of your valuable input!

GirlCaptain 11-26-2016 03:12 PM

cervical spine
 
Congrats on getting a Mobi-C. The Radio Frequency Ablation is a great procedure for facet pain, and should help your inflamed fact joints immensely. Good luck with getting that done.
GC

Blizzaga 11-27-2016 09:15 AM

Hi Nestletea,
I am curious to know what made you decide M6 is better? I was initially open-minded regarding all disc types, and after browsing online, I ended up with the exact opposite conclusion. In the surgical outcome section of this forum I found many M6 outcomes and I did not feel particularly motivated by them... Note, I have not gotten adr myself, so all I can say is what I read.

Nestletea 11-27-2016 09:30 AM

M6
 
From what I have read, the cervical M6 sounds like it can cause Hangman's syndrome. I have been reading up on this for days, but am new to all of this. Could you please share your research on the Lumbar M6?

Thanks

Blizzaga 11-27-2016 03:46 PM

Well, first I must say that I am not qualified to tell anybody what disc to use. There are others on this forum that have probably read much more than I about the subject. But here are some things I found, which I have used to make up my mind:

Manufacturer of M6 giving the benefits compared to some other discs:
http://www.spinalkinetics.com/wp-content/themes/sk/resources/7-Competition.pdf


Dr. Bertagnoli raising much criticism against elastomer discs:
http://www.dr-bertagnoli.com/artificial-disc-replacement-center-of-rotation.html
Correct me if I am wrong, but Bertagnoli does not use elastomer discs?
 
Although, I am not very impressed by prodisc-L either. It has been proven that it loads the facet joints significantly more than movable core discs. This has been shown both in theory:
Comparison of Biomechanical Function at Ideal and Varied Surgical Placement for Two Lumbar Artificial Disc Implant Designs: Mobile-core vs. Fixed-core
https://www.researchgate.net/publication/6078599_Comparison_of_Biomechanical_Function_at_Id eal_and_Varied_Surgical_Placement_for_Two_Lumbar_A rtificial_Disc_Implant_Designs_Mobile-core_vs_Fixed-core
"Placing a mobile-core TDR design anywhere within the disc space reduces facet loading by > 50%, while the fixed-core TDR design increases facet loading by >10% when compared with the intact disc in axial rotation, the worst loading case."

and in vivo:
Effects of lumbar artificial disc design on intervertebral mobility:
in vivo comparison between mobile-core and fixed-core
http://europepmc.org/abstract/MED/21153595
"A prosthesis with a fixed-core increased the VT during flexion–extension motion in comparison to the physiology and mobile-core prosthesis at both L4L5 and L5S1 levels."

 
What do you think about these references?

If anything is certain, it is that there is no such thing as a perfect artificial disc, one just has to weigh the options and take the "least worst one". :)

Nestletea 11-27-2016 04:05 PM

Disc Preference
 
Thank you for providing these articles. I have the spent the afternoon researching discs and now have several reservations regarding M6 design. What is your opinion regarding Activ-L? I am curious as on Dr. Clavel's website it does state that sometimes this is a better option for L5/S1.

I am also curious as to what disc/surgeon you have decided on?

Thanks,

Leanne :)

Chris9702L 11-27-2016 10:38 PM

I know both Bierstedt and Clavel also use the Active L. You can contact them and ask their opinion of each disc. Another disc of interest in the Freedom. I would be interested if they have ever used it, reason being is it should be approved in the US next year so if you ever had a problem you could find someone here in the States that is familiar with it.

Nestletea 12-23-2016 06:12 PM

M6 vs. ActivL
 
I want to thank Blizzaga for opening my eyes to some worrisome data regarding the M6 disc. You completely changed my point of view.

I am actively seeing a surgeon in Florida that ran the FDA trials for the ActivL - Dr. Rolando Garcia. I am most impressed with him and will be finishing up a few tests for him, while he works on the insurance end. I have pretty much 99.9% made up my mind that he will be my best option for Lumbar Disc Replacement.

Again, thank you so much!

Leanne

Big_A_2246 12-25-2016 01:12 AM

I'm curious why people are going to other countries for this procedure. I found what I think is a highly trained ADR surgeon in Chicago and from what I've read they are really all over the place now. What am I missing?

phillyjoe 12-25-2016 12:38 PM

Some folks want the M6, which isn't approved in US yet. Some folks define highly trained by a the surgeon meeting a certain min threshold of devices implanted. Europe has done it longer than in the US but now the US seems to be catching up. Finally, it also comes down to a personal relationship you might develop with your surgeon. Some US docs, though perhaps highly skilled, are quick to abandon you if something goes wrong and send you packing to pain management

Romakis 01-10-2017 05:43 PM

Clavel did 2-level on me - I will never regret it, he is great guy and doctor!

SteveOch 01-11-2017 07:50 PM

Quote:

Originally Posted by Big_A_2246 (Post 115115)
I'm curious why people are going to other countries for this procedure. I found what I think is a highly trained ADR surgeon in Chicago and from what I've read they are really all over the place now. What am I missing?

A two level lumbar ADR is not approved in the US. Therefore, we must look to Europe for this procedure.

WakesurfMike 01-14-2017 09:58 AM

have you looked at xiomed freedom lumbar disc?
 
http://www.axiomed.com/pdf/WPaperSWISSSpineReg.

The Freedom Lumbar disk outperformed all other disk.

The Freedom lumbar disk has completed the 5 year study and will hopfully get Fda approval soon. (later part of 201?)

Blizzaga 01-14-2017 10:30 AM

Quote:

Originally Posted by WakesurfMike (Post 115214)
http://www.axiomed.com/pdf/WPaperSWISSSpineReg.

The Freedom Lumbar disk outperformed all other disk.

The Freedom lumbar disk has completed the 5 year study and will hopfully get Fda approval soon. (later part of 201?)

The results for the Freedom disc look very promising. Not enough long term results, but still may be a good candidate to succeed the 1st generation tdrs. Note that here the Freedom was compared against all historical implants collectively, so it is not really "fair". It may still be better though.

Appendix 1 first case is a bit strange. I am surprised they did not do l4l5 as it is clearly degenerated. But maybe it did not cause symptoms for that particular patient.

SteveOch 01-16-2017 07:37 PM

Quote:

Originally Posted by Blizzaga (Post 115215)
Appendix 1 first case is a bit strange. I am surprised they did not do l4l5 as it is clearly degenerated. But maybe it did not cause symptoms for that particular patient.

Exactly! It look terrible.

annapurna 01-17-2017 11:46 AM

Ten years ago, at a spine conference in the US, Zeeger's threw up a slide with an MRI showing two clearly dessicated and collapsed disks and asked the audience which was the pain generator. Then, when everyone had pointed to one of the two obviously damaged disks, explained that the pain was from the torn and leaking but radiographically sound disk above those two. Can't trust imaging to tell the whole story.

Blizzaga 01-17-2017 03:38 PM

Quote:

Originally Posted by annapurna (Post 115242)
Ten years ago, at a spine conference in the US, Zeeger's threw up a slide with an MRI showing two clearly dessicated and collapsed disks and asked the audience which was the pain generator. Then, when everyone had pointed to one of the two obviously damaged disks, explained that the pain was from the torn and leaking but radiographically sound disk above those two. Can't trust imaging to tell the whole story.

I guess you are correct. Maybe they removed the bulge from L4L5 in the case I mentioned. It wouldn't show on the x-ray.

I can imagine the surprise of the audience at that conference :eek2: I wonder if Zeegers makes speeches at conferences nowadays. I guess he has really seen it all!

phillyjoe 01-17-2017 05:07 PM

And of course the sad thing about this is that docs often want to do discograms in the hope of finding the pain generator. This was the case for me with respect to my L4-5 and L5-S1. The former was shifted to the rear, a real spondy, and the latter was about gone. Foolishly I agreed to the disco. Result.....inconclusive. I still have pain down both legs and haven't made a decision on the next step, since like everyone else here, I can't get any two docs to agree to anything.

Nestletea 02-22-2017 07:45 PM

Why Patients travel out of country
 
Many have asked why patients travel out of country for lumbar disc arthroplasty. The answer is pretty easy: Insurance still considers the procedure experimental/investigational.

Well I was all scheduled for surgery with Dr. Garcia - Lumbar ActivL on February 15th and Florida Blue denied at the last minute. I then quickly filed an expedited internal review which Florida Blue denied. Then On February 13th, I filed an expedited external review.
My frustration has continued, as the expedited external appeal that was filed through Florida Blue was denied. This has exhausted all of my insurance options in the United States. Therefore, I will be headed to Barcelona on March 13th to have a lumbar ADR with Dr. Clavel. I have thoroughly researched the neurosurgeons in Germany and Spain and based on patient outcome and insurance provided by Dr. Clavel's office for the surgery, the decision was easy. Also, I have researched the activL and M6L and discussed both discs with several US and European surgeons. In the end, I will go with the M6L. This disc has an 80 year lifespan vs. the activL that has a 30 year lifespan. I feel at peace with the decision and look forward to feeling better in the near future!

phillyjoe 02-22-2017 10:15 PM

I am hoping for at least half of that 80 year lifespan for M6. But really, how do they know? the testing is not in vitro. I wonder what the lab testing life of a typical implanted 20 year knee replacement is?
Good luck. I have nothing but good things to say about my Spanish team. In fact, and maybe it was just luck, but as a solo traveler with no language skills, the kindness of the Spanish people toward me was remarkable. Gave new meaning to phrase to be thankful for the 'kindness of strangers".


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