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  #41  
Old 03-23-2015, 06:57 PM
Dema Dema is offline
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Thanks Laura for the clarification on your surgery, and pray the 2 M6 guardians will protect you from any any additional pain and keep you mobile and active.
DrewDotNet, I totally agree a few opinions is a must, and when there is a wide margin in the recommendations, the challenge is to decide which one is right! Thanks to this site and the wealth of information shared by everyone here, it has been extremely helpful to understand the various treatments and also leads to specialist that are ADR proponents.
Cynlite, I appreciate your informative posts, and hope you had a good meeting today, and hope we'll get our guardians, M6 or another ADR and have significant pain relief and reclaim our lives.
Best wishes to all,
Dema & Raouf
__________________
7/2007 Whiplash injury
11/2009 Cervical disc herniation C3-C6 (C5-C6 worse)
2010-2013 Conservative treatments (drugs, PT, epidurals, prolotherapy, acupuncture...etc)
, little effect on pain
Considering surgery (typical questions, which type & which surgeon!)
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  #42  
Old 03-24-2015, 12:38 AM
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Cynlite Cynlite is offline
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Well, the appointment at the Barrow Institute was not as productive as I had hoped. The office staff told me the surgeon used the Mobi-C so, I moved forward with my appointment but, the surgeon only uses the Pro-Disc and couldn't remember the name of it during our appointment. That was not very reassuring. He did not recommend an ADR but, rather a fusion. No surprise there. I told him I was not going to get a fusion. I basically got offered the same thing 9 years ago from other surgeons here in Arizona. Now, that's progress! He said the artificial discs move too much so, it's not a good idea to put them next to a fusion. He thinks it will lead to issues with the facets joints. He thinks the ADR's are more appropriate in young stronger cervical spines. I can't say I agree with his responses but, there you go! Anyway, he referred me over to one of his colleagues that teaches how to do surgery with the Mobi-C.

At least I got the prescriptions for the Lumbar and Thoracic spine MRI's so I can rule out those parts of the spine being the source of my leg problems. I already did this before but that was about eight years ago.

He also gave me a prescription for physical therapy. I'd like to get other's opinions on PT. Will it really help if moving is causing me pain that is not muscular in origin? Seems it would just cause me more electrical shooting pains and muscle spasms. I believe I know the limitations of my body. I walk, stretch, use very light weights when I can, do some yoga stretches, was trained in dance, used to train with a trainer so, I think I know a bit about how to work my body and get it strong ... that is when I can move! I was in great shape 9 years ago before my neck gave out But, right now I have to be so careful or I aggravate my body and end up in awful pain. This is the reason I'm seeking surgery again. I really do want to be able to exercise like a normal person again.

The surgeon was concerned that further surgery may not help me or make things worse and perhaps he is correct. Perhaps not.

He said I should get five opinions and I'll know my answer if everyone agrees. That kind of surprised me....it was a good response! So, basically I should come back if I ultimately decide I want a fusion surgery. Dr. Bierstedt recommended two artificial discs....I didn't share that bit of information. I sure wish getting opinions from doctors didn't take so much time!
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #43  
Old 03-24-2015, 08:57 AM
Cheryl0331 Cheryl0331 is offline
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Default so worry about possible facet problems but ignore

Quote:
Originally Posted by Cynlite View Post
Well, the appointment at the Barrow Institute was not as productive as I had hoped. The office staff told me the surgeon used the Mobi-C so, I moved forward with my appointment but, the surgeon only uses the Pro-Disc and couldn't remember the name of it during our appointment. That was not very reassuring. He did not recommend an ADR but, rather a fusion. No surprise there. I told him I was not going to get a fusion. I basically got offered the same thing 9 years ago from other surgeons here in Arizona. Now, that's progress! He said the artificial discs move too much so, it's not a good idea to put them next to a fusion. He thinks it will lead to issues with the facets joints. He thinks the ADR's are more appropriate in young stronger cervical spines. I can't say I agree with his responses but, there you go! Anyway, he referred me over to one of his colleagues that teaches how to do surgery with the Mobi-C.

At least I got the prescriptions for the Lumbar and Thoracic spine MRI's so I can rule out those parts of the spine being the source of my leg problems. I already did this before but that was about eight years ago.

He also gave me a prescription for physical therapy. I'd like to get other's opinions on PT. Will it really help if moving is causing me pain that is not muscular in origin? Seems it would just cause me more electrical shooting pains and muscle spasms. I believe I know the limitations of my body. I walk, stretch, use very light weights when I can, do some yoga stretches, was trained in dance, used to train with a trainer so, I think I know a bit about how to work my body and get it strong ... that is when I can move! I was in great shape 9 years ago before my neck gave out But, right now I have to be so careful or I aggravate my body and end up in awful pain. This is the reason I'm seeking surgery again. I really do want to be able to exercise like a normal person again.

The surgeon was concerned that further surgery may not help me or make things worse and perhaps he is correct. Perhaps not.

He said I should get five opinions and I'll know my answer if everyone agrees. That kind of surprised me....it was a good response! So, basically I should come back if I ultimately decide I want a fusion surgery. Dr. Bierstedt recommended two artificial discs....I didn't share that bit of information. I sure wish getting opinions from doctors didn't take so much time!
Oh let's worry about possible facet joint issues and ignore the matter of adjacent level DDD, right?! Figures, a standard response from a US doc. And may be I can deal with the facet joint pain but I can't deal with continued surgery from ALDDD and my nerve being pinched and damage to the point I can't use my limbs. I don't really want to think about a life where my husband has to wipe me after I use the restroom!
__________________
54 yr old female 5'7" 147 lbs. non-smoker conservative treatments failed
2007 fusion @ C4-6 peek cages, failed due to long term use of cox-2 inhibitor
2008 revised C4-6 donor bone, plate & screws
2009 fusion with Roi-C @ C3-4
2015 MRI & CT mjr ddd @ C6-7, segmental kyphosis at C7-T1, 2-level M6-C prosthesis by Dr. Clavel Barcelona Spain
2019 H.O. formed behind M6-C @ C6-7 left nerve rt & in spinal canal.
2020 Revision C6-7 to a CP-ESP prosthesis by Dr. Schmitz Dusseldorf Germany
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  #44  
Old 03-24-2015, 09:49 AM
NJ Gene NJ Gene is offline
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Cynlite, I'm sorry to hear about your experience with the Barrow Institute. It sounds almost like you went to a surgeon who is not trained in ADR at all. I decided to get the opinion of a local spine surgeon who didn't perform ADR last week. What he told me sounds very similar to what you wrote However, as someone who doesn't perform ADR, he claimed that there were studies that cause it (ADR) to de-stabilize the spine. He defended the FDA's initial ruling that ADR should not be done in adjacent segments to a fusion. It's funny, because that's were I feel I need ADR the most. Need to stop the domino effect.

He did have a valid point that much of my current pain may be due to the facet joints. I will try an injection. However, even if that does help, I still have ASD and am not about to wait until I'm in very severe pain to address it. Been there, done that. I'm not a medical professional, but I agree with your thoughts about physical therapy. It's great for minor injuries or for rehab after surgery. However, I don't think it's going to do anything for someone like yourself who has had issues for 9 years. To me that's like saying "Go for acupuncture". It does nothing to address the matter at hand, other than to possibly give temporary relief at best.

Cheryl, for your interest, I am flying to TX today, as I have an appointment to meet Dr. Blumenthal at the Texas Back Institute tomorrow. He works with most FDA approved discs including Mobi-C. I figure he is one of the best in the U.S.A. I will then compare what he has to say with the surgeons in Europe and try to make a decision.

As an aside, my boss thinks I'm nuts flying to Texas. "Oh there are so many good doctors in NYC or Boston. I can't believe you cannot find anyone closer to home." Some people just don't grasp that it's only 5% of U.S. spine surgeons (my educated guess) that perform ADR and of those, there are fewer that take my insurance. With the exception of TBI (to my knowledge) which has a set price for ADR, one would pay much more in the U.S. than they would in Europe. This was the straw that broke the camel's back. I e-mailed my boss notice (same way he hired me) that I am leaving his company and am giving him one month for a smooth transition.

In a way this works out, because I will have time to get ADR when my employment ends. I am fortunate to have a spouse that works and also have money saved for a rainy day. Not having childern also helps.

Gene
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #45  
Old 03-24-2015, 10:47 AM
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Cynlite Cynlite is offline
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NJ Gene,

Sorry to hear you don't have support from your boss. Since just about everyone willingly has fusion, his response was kind of expected. He speaks from being uninformed. It is annoying when we feel we have to defend our decisions. Often, I just take a pass on it. It's not worth the aggravation.

I had a good conversation with the surgeon yesterday. He said that there are hardly any disc manufacturers trying to get FDA approval anymore because of the cost to do it. We both sort of sneered at the FDA. He mentioned they approved some little plate that costs thirty something thousand for brain surgery. It only extends the life of the patient about six weeks and Medicare is paying for it so patients are asking for it and the tax payers get to foot the bill. Having gone down the road of cancer with my Dad for several years, I understand horrible disease but, I just don't see how a six week possibility of extending one's life is worth the surgery trade-off. It just seems the FDA is very politically influenced. In the same conversation he discussed how the Charite Manufacturer went out of business because it was a failure and the people in Europe paid the price for it AND yet, it was approved by the FDA.

I agree, I think he has limited experience with surgery with discs. He pointed me to the surgeons in my state that do which was good because he was honoring my wishes. It's a shame his office was not more knowledgeable because they would have saved me the pain of getting into that darn building. My blood pressure went to 145/100 and they asked me what I was doing to control my blood pressure. (Just breath and relax LOL.) That was the highest reading I've ever had and I was in PAIN plus agitated. I just had a reading a few days ago of 126/86. This is why it's important to try and control one's pain with drugs. I didn't take any drugs until after my appointment. I figure it is hard to tell a doctor where I hurt if I'm masking it with drugs. Oh my, it was a difficult journey because I had to hike about two blocks with a heavy bag to get there from the parking lot. The poor guys managing the parking lot said they were sorry they didn't have anything better. Hard to believe they haven't considered their patients' pain! Glad it's over for now. I'll be better prepared for the next appointment.

Please do let me know how it goes at the Texas Back Institute. I read the Hospital for Special Surgery in NYC is doing ADR but, I believe the TBI has more experience since they've been in on many of the trials. I think you made a good call personally. The surgeons with really good experience in ADR in the U.S. are definitely a minority IMO.

I tried massage, acupuncture and now get jabbed with needles by a pain specialist. He helps me the most. The other modalities only help for a few hours to a few days. I think I'll just save my money on PT and keep doing body work at home for now. I'll speak to the next surgeon at Barrow about it.

Oh, one other comment from yesterday. The surgeon said "the discs are really easy to put in." That was kind of a flip statement! Hmmmmm, I think I may know more about what is going on in the "world" with discs then he does. Too bad our FDA won't consider the body of knowledge available in Europe.
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016

Last edited by Cynlite; 03-25-2015 at 12:13 AM.
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  #46  
Old 03-24-2015, 01:49 PM
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Cynlite Cynlite is offline
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Join Date: Mar 2015
Posts: 666
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For those of you following my journey, I have two threads going. The other one is under New Members and discusses paying out of pocket in the U.S. I've decided to post most everything here for now. I want one place that I can go back to for referencing my notes and the notes of others.

I'm not sure if I'll stay current in my posts for a while as my Mom is dying. I just brought Hospice in last week. I don't expect her to be with me much longer and it's very difficult emotionally not to mention the pain it's causing me physically as well.

In my research, I came across a PDF that was written by a doctor. He goes into great length discussing chronic pain and how to manage it. I haven't even read the whole thing but, I did find that he covered a lot of things that took me years to figure out on my own. I hope you find something in it that helps you with your pain!

IntractablePainSurvival.pdf
__________________
2006: epidural shots did nothing; 2 surgeons recommended 2 level fusion, I declined.
2007 - 2010 4 foraminotomy and cord decompression cervical surgeries and 2 endoscopic discectomy T7-T8 surgeries; total 6 with Dr. Jho (Pittsburgh,PA) My C6/C7 autofused around 2009.
2013 - 2015: epidurals 3 times (again did nothing) and 4 Radiofrequency ablation (or RFA) procedures.
2016 more RFAs, hit the 10 year mark of this insanity and pain, 3 level M6-C ADR with Dr. Clavel May 19, 2016
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  #47  
Old 03-24-2015, 03:10 PM
NJ Gene NJ Gene is offline
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Quote:
Originally Posted by Cynlite View Post

I'm not sure if I'll stay current in my posts for a while as my Mom is dying. I just brought Hospice in last week. I don't expect her to be with me much longer and it's very difficult emotionally not to mention the pain it's causing me physically as well.
Attachment 571
Cynlite, my thoughts and prayers go out to you and your family.

Warm regards,
Gene
__________________
Car Accident 2002 - Small Herniated Disc C3/C4
1998 Larger Herniation and Cervical Fusion C3/C4
2005 Herniation C4/C5 - 40 epidural steroid injections from Oct 2005, - Oct, 2007
2008 - Foraminotomy at C6/C7 on left side
Feb, 2010 - Cervical Fusion C4/C5
Dec, 2010 - Lumbar Fusion L3/L5
2013 - Bulge on C5/C6; herniation C6/C7 right side
Mar 26, 2013 - Foraminotomy at C6/C7 on right side
May 5, 2015 - ADR with Dr Blumenthal of TBI for C5/C6 using Mobi-C
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  #48  
Old 03-24-2015, 04:08 PM
Dema Dema is offline
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Posts: 169
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Cynlite, our prayers to your family during this hard time, and my you be guided to best treatment and be relatively pain free and can be there for yourself and your family.

NJGene, like you I've had little success with ADR in NYC/NJ area, but HSS has been making some news more recently about ADR and brought in a new director Dr. Todd Albert )from Rothman Institute in Philly). Ihave seen in previous years 3 surgeons at HSS, and non recommended ADR! Only one I found in this area was Dr. Bitane, who uses ProDisc (or at least he did when I saw him a couple of years ago). Did you see Dr. Jeff Goldstein yet, his web site seems interesting! I saw a couple of other NYU surgeons, but no ADR in their offering either.
Best wishes to both,
Dema & Raouf
__________________
7/2007 Whiplash injury
11/2009 Cervical disc herniation C3-C6 (C5-C6 worse)
2010-2013 Conservative treatments (drugs, PT, epidurals, prolotherapy, acupuncture...etc)
, little effect on pain
Considering surgery (typical questions, which type & which surgeon!)
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  #49  
Old 03-24-2015, 08:21 PM
Jerry5 Jerry5 is offline
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Join Date: May 2013
Posts: 363
Default Germany

Second or ..., that opinion, with Dr Bierstedt, or Ilerhaus.

I went for a two level, and they could not access the second (lower) and ended up with a Fusion.

They paid for the second surgery, so to speak, they offered, I accepted, this was the worst level, L51, but you could not do wrong here, ANY surgery is complicated and risky, here in the USA, or anywhere else.

Germany is not the only place outside the US, I have had surgery, there are very good doctors all over the world.
__________________
Jerry, Somewhere Ohio

L2-3 herniation, two days before Thanksgiving, 2012, Discectomy/Laminectomy, 3/13 Numbness in the right leg, lateral femoral, gone, July 10, 2014 L45 M6 ADR, July 15 PLIF L5-S1, Not able to access L51 Anterior.
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  #50  
Old 03-25-2015, 12:03 AM
2Confused 2Confused is offline
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Join Date: Jun 2011
Posts: 322
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Cynlite,

First let me say my thoughts are with you during this trying time....

You mentioned leg and lower body issues I too had pain, numbness and tingling (neuropathy) mostly in my left leg. There were times when I actually drug my right leg, it often would "give out" with out warning sometimes causing me to take a fall. My right arm was numb & tingling or having spasmodic pains which often resulted in me dropping things. Post op my leg was immediately fine, I never have any of the aforementioned problems. My right arm has been a little more challenging due to the damage to the nerves. I still get some (slight - almost hesitate to call it pain) nerve pain, very rarely and usually after intense workouts. My right arm is still slightly weaker than the left (it was the stronger arm pre-accident) but I continue to see improvement in my strength even 2+ years after surgery. Since surgery I have not had one single cervical headache and rarely ever have a headache at all. Pre-surgery I never believed I would feel GOOD again.... It gave my my quality of life back and I feel wonderful. My hopes are you too are successful and pain free soon. Sorry to be so verbose, but I wanted to mention that there is no doubt that my lower extremities were affected by the cervical damage, I saw many doctors and specialists here in the USA & almost all of them told me it was not related. Thankfully I have a GP who referred me to a specialist (after another Dr. misdiagnosed me with MS) who agreed that my arm & leg issues were related to my cervical injuries. You know your body, find a physician here or abroad who listens to you.
Best of luck.
BTW - insurance did pay for my 2 level ADR Surgery done in Barcelona by Dr. Clavel.
__________________
50 year old female
Rear-Ended in 2009
Disk rupture cervical 5-6 & 6-7
2 level M6 ADR, Dr. Clavel - Oct. 2012
Insurance paid
Not a day goes by that without me whispering a silent "thank you" to Dr. Clavel
Post Op 2+ years
Cross Fit 3-5 times a week
Running 5ks

Last edited by 2Confused; 03-25-2015 at 12:07 AM. Reason: Addition
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