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  #1  
Old 08-16-2016, 05:15 PM
arrierito arrierito is offline
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Default Introduction and 2 questions

Hi!

I’ve been reading many of the posts on this site and wanted to introduce myself and post a few questions. First some background: I’m a 31 year old male who up until 10 months ago enjoyed a very active lifestyle. To give you an idea, I routinely ran 60+ miles a week and went on long bike rides (100+ miles) as well. I’m attaching a picture (I’m on the right) of a race from last summer where I ran the mile in 4:57… not bad for a 30 year old!

Alas, 10 months ago, in a spur of the moment decision I joined a soccer match where I slipped and herniated the left side of my L5/S1 disc. Ouch. My symptoms were severe sciatica pain with tingling in my left calf and glute. 10 weeks after the injury I had an MRI, and on February 3rd 2016 I underwent microdiscectomy surgery. The surgery itself was properly done but my recovery was slow. My nerve took approximately 5 months to heal from the original symptoms and the shock of the surgery.

Unfortunately 6.5 months post-surgery I have developed a different set of symptoms. Now I have sciatica pain in both of my legs - particularly calfs and glutes. The pain location is actually slightly different from the original injury. I’m lucky in that I have no back pain, just pain and tingling in both my legs. Also, sitting down for any period of time is painful on my hamstrings. I’m a attaching a picture of a recent MRI which I’ve cleverly manipulated to show all the side views from right to left. As well as one shot from the front. The file size is limited - wish I could share it in larger size.

I believe the good news are:
- With the exception of L5/S1 all the other discs are tall (~10 mm), full of water, and well within the vertebrae boundary.

- There is still some space between L5-S1 and there doesn’t appear to be any partial fusion or bone chipping.

- The general curvature of the spine good.

- I have no back pain so it’s safe to assume my facet joints are in good shape.

- I’m very healthy otherwise.

In contrast, the bad news are:
- L5/S1 has almost no water left.

- The bottom of my L5 vertebrae is a very irregular surface. It is concave from left-to-right with a through-to-peak distance of roughly 6 mm. It is S-shaped front-to-back with a peak-to-peak distance of roughly 3 millimeters. Obviously it had too much to drink.

- Consequently, what remains of my disc is ~8.5 mm tall at the center but only ~2.5 mm tall on the sides.

I believe the disc being only 2.5 milimeters tall on the sides is causing pinching of the nerves directly by the vertebras. Based on this I’m considering an M6-L ADR. My questions are the following:

- With the top of the artificial disc being completely flat and my L5 surface being so irregular I’m worried the keels of the M6 disc would just barely make contact. Additionally, because the M6 is 10 mm tall, suddenly raising the space between the vertebras by a full 7.5 mm would probably miss-align my facet joints. My question is whether any of the doctors would consider ‘filing’ or flattening the surface of the vertebrae by 2-3 millimeters such that the artificial disc can catch/fix, and the facet joints aren’t all of a sudden misaligned?

- Second, am I good candidate for ADR even if I have no back pain? Most of the stories I read are of people with chronic back pain so I’m not sure if I can be considered solely because of sciatica and tingling on both legs.

Thank you, I truly appreciate any color you can provide.
_______________________

"Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak." -Thomas Carlyle

"We fall, but we get up because the ground is no place for a champion." -Dustin Poirier
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File Type: jpg 11357100_833821416655217_4395733464961206445_o.jpg (94.5 KB, 28 views)
File Type: jpg MRI Sequence.jpg (22.8 KB, 40 views)
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  #2  
Old 08-16-2016, 06:04 PM
Cynlite's Avatar
Cynlite Cynlite is offline
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Welcome! Sorry you are here at such a young age. There are others here that know more about lumbar related issues than I do but, I did read this little blurb yesterday about the Activ-L Disc on Dr. Clavel's website. Perhaps it applies to what you are describing.

6. What artificial disc designs do you use?
Mainly M6C and M6L for both cervical and lumbar spine surgeries.
We have occasionally used Activ-L Aesculap, especially at the level of L5-S1. It is indicated if the surface of the L5 is concave. The convexity of the upper platform of Activ-L fits perfectly into the pronounced concavity of the anatomy of some patients.

http://www.doctorclavel.com/en/en-us/faq/

This is my opinion from my own research and not that of a surgeon so, I could be wrong. The surgeons remove osteophytes during surgery when they press on the spinal cord and nerves. However, surgery is a trauma to the spine which can lead to autofusion of a disc (this happened to me between several surgeries) so, I think there is a trade off of risk and reward when they are in there working and removing or grinding down things. To avoid the real risk of osteophyte growth post ADR surgery, many of us have taken high doses of NSAIDs for a month. There is not a consensus about NSAID use post surgery between ADR surgeons unfortunately. Dr. Clavel recommends taking them for one month postop. I wish I had known about this practice with my earlier surgeries so, I might have avoided my autofusion....such is life.

Have you looked into stem cell injections to re-hydrate your disc or discs? It is expensive but, is another option to surgery.

Hopefully, this information will lead you to your answers. Good luck!
__________________
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; 08-16-2016 at 08:26 PM.
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  #3  
Old 08-16-2016, 06:12 PM
arrierito arrierito is offline
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Cynlite, thank you so much for your reply! It precisely answers my question.

I read the ActivL disc comes in 8 mm height, so it might actually be the better option for me.

Thanks again.
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  #4  
Old 08-16-2016, 08:24 PM
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Cynlite Cynlite is offline
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Wonderful! It was approved by the FDA in the U.S. last year but, just know that the surgeon is a really important part of the equation for the best outcome. If you don't want to go to Dr. Clavel in Barcelona, I would recommend that you contact the Texas Back Institute for an opinion when and if you decide to get surgery. They have several very experienced surgeons there who may be using the Activ L by now. I believe that Dr. Clavel moved on to the M6-L because it's a better disc in his opinion but, of course, in your case it may not be the best choice. You might want to send him your MRI's to get his opinion and/or talk to him because he really is that good and an amazing human being.

There may be some great ADR surgeons up in the New York area too, I just don't know them. Dr. Rew is a cervical ADR surgeon who has a very impressive resume in your area. Perhaps he or his office can recommend a surgeon in New York to you.

I cannot stress enough how important the surgeon is when considering this surgery. I spent months and months analyzing the data in the post surgery forum here. There are not many surgeons in the U.S. that have over 1000 ADR surgeries under their belts if any. I ended up going to Barcelona because surgeons in the U.S. couldn't handle my case. Experience really makes a huge difference.
__________________
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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  #5  
Old 08-16-2016, 10:27 PM
arrierito arrierito is offline
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Join Date: Aug 2016
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Thank you so much for your input and your good vibes!! This is such valuable advice that one can't get anywhere else.

In regards to artificial disc choice I believe the ActivL has some advantages over the M6L. First I think spikes are better than keels - they both appear to be effective methods of fixation but I prefer not to have my bones chiseled into. Second is the ActivL's wide choice of end-plates specifically designed for the S1 vertebra. Third, is the 8.5 mm height option. Fourth, is their solution for revision surgery and the thought that if something goes wrong it might be easier to remove the ActivL than the M6-L. Needless to say the M6 has it's own set of advantages!

It would be ideal to have the surgery here in New York but I'm willing to go anywhere in the world to ensure I get the best possible care and thus maximize my chances of a successful outcome.

Doctor Clavel is the best with the M6 but does that extend to the ActivL? Here in New York I've heard good things about The Spine Hospital at Mount Sinai in NYC. But doctors at the TBI appear to have the most experience. More research on my part is required. I'm guessing doctors will want to see and MRI as well as X-Rays. Since I haven't done X-Rays post microdiscectomy my plan is to take a set in the next couple months and then get multiple opinions: 1. Dr. Clavel. 2. TBI. 3. Mount Sinai. 4. My local orthopedist.

I also need to perform more research on the option of Fusion - I'm not yet completely convinced that it's not a good option for me. The adjacent disc (L4-L5) looks in perfect shape so if I take good care of my back post surgery maybe it will hold just fine. Having said that, I fully intend to run again - it's the fire that keeps me going. Please keep in mind that I've spent countless hours improving my running technique and making it flawless: Light on my toes, Short strides, Low vertical oscillation, Mid foot strike. I feel I put more pressure on my back sitting down than running. It amazes me that most amateur runners have terrible running techniques and it's no wonder why they injure ankles, knees, hips, and discs!

Then there is the question of timing. My symptoms are bad enough that the situation is unsustainable and I need to do everything within my power to try and fix it. Everyday I feel that I'm chewing into my L5 nerve root while waiting. I can get a new disc, I can even fuse the vertebras. But sadly I can not get a new nerve. At the same time the pain in my legs is not chronic and I am not taking pain medications. I do not have back pain and still fully control my legs. They are constantly tingly and painful from glute to calf, but I can feel them and control them. Maybe it's a gray zone. In my case DDD feels like a losing battle were it gets worse bit by bit and the advantage of simply waiting is not so clear. It has not been easy for me to decide when to have surgery. I think about it every day and have not been able to make up my mind. So I am using this time to do research, and develop a plan that I can live with even if something goes wrong. I also plan to use this time to strengthen my core as it needs to be rock solid if the best option is the less-constrained ActivL disc.

Thank you for reading. Feedback is much appreciated.

_______________________

"Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak." -Thomas Carlyle

"We fall, but we get up because the ground is no place for a champion." -Dustin Poirier
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  #6  
Old 08-17-2016, 03:55 PM
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Cynlite Cynlite is offline
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The L5/S1 is a tricky level and some do choose to fuse it instead of an ADR because it is the base of the spine and takes a beating. You might want to PM Drewrad about it or read his threads. He is also a sports person and had to figure this out too. From what I've read, tall men often have an issue at this level and when it gets bad, sitting is a real problem for them so, it sounds like you have time still to figure this out.

You might want to read ozphysician's threads. He has been getting stem cell injections followed up by images to chart his progress. (It's hard to find any solid proof like this from stem cell patients or centers that do this type of treatment.) He's been growing his lumbar facets back! I've read that the stem cells can re hydrate discs so, that's why I mentioned it to you.

I've had seven spine surgeries now. I was desperate to get out of very extreme pain so, six of them (all within 3 very hard years) ultimately caused more deterioration of my spine after 5 to 8 years post-op. My options were much more limited 10 years ago. Just look at my signature and you can see what I had done. So, in the beginning, while the surgeries stopped paralysis, they did not get rid of much of my pain at the time and in the end made matters worse. These were so called minimally invasive procedures where the surgeon did not fuse and just removed the obstruction. My point is that spine surgery is a big decision to make because there are no guarantees. It is good you are here and can do the research necessary to make the best decision possible for you.

I don't know of one person that is 100% out of pain after having a spine fusion. Sure wish some of the lumbar folks would chime in here!!!! This is why I have avoided it so far for my L3/L4. However, someone here mentioned recently that Dr. Clavel said that it's better to get an ADR earlier than later, probably, because of the contraindications for the surgery. I can't get an ADR at my L3/L4 so, I'm waiting it out.

I remember reading of people going to the Hospital for Special Surgery (NYC) for ADR but, don't know if they are any good at it or still doing it. I don't think the Mayo is doing it and only one surgeon that I know of out here at Barrow is implanting the Mobi-C but, is cherry picking his patients. Several surgeon profiles at Barrow say they do it but, I know from spending a lot of time calling them, most seemed to have stopped. One of their top surgeons that I saw had implanted the Prodisc but, didn't like it so, he recommended fusion. The big guns are staying out of the game probably because of insurance problems.

Many surgeons in the U.S. seem to still be using the Prodisc (with the really huge keel design) and the insurance companies are still really slow to get on board with the ADR surgery. Then of course, we have our FDA that is slow on the go for disc approvals. So sadly, we are about 10 to 15 years behind Europe still when it comes to spine surgery IMO. I just shook my head when I talked to Dr. Clavel about the Coflex that a surgeon here had recommended for my L3/L4. It's new here and he already quit using it because of the problems it causes. Sigh.... So, some people are afraid to go to Europe because they can't get follow up care in the U.S. very easily. IMO, this is because the surgeons here just don't have the knowledge or experience to be in the same league as some of the best in Europe. But, the same is true if you have multiple failed surgeries in the U.S. You get very limited in finding the surgeons that will be willing to correct a failed surgery for you. So, it's really important to choose the right surgeon the first time! After everything I have experienced, I will probably go see Dr. Clavel again if I need to have a lumbar fusion even if my insurance would cover surgery in the U.S. I'd definitely talk to him about the technology he is using compared to the U.S. Dr. Bertagnoli in Europe was not my choice but, he sure is doing some cutting edge stuff with his Prodisc in a hybrid surgery technique he developed. It's a whole different world in Europe when it comes to spine surgery compared to the U.S.

The two surgeons at TBI are Dr. Blumenthal and Dr. Zigler. I think they may have the most experience in the United States because they were in on many of the trials. If you stay in the U.S., best to go with the surgeons that have been doing it the longest here so, ask the question "how many have you done?"
__________________
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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  #7  
Old 08-17-2016, 06:33 PM
phillyjoe phillyjoe is offline
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It also may be worth checking out Dr Vaccaro at Rothman in Philly or Dr Yue in New Haven at Yale if you are interested in east coast. Both do ADR, but appear to also cherry pick, though I might be biased, since they both rejected me and Dr Clavel gave me 3....
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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  #8  
Old 08-18-2016, 09:00 PM
arrierito arrierito is offline
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Cynlinte,

Thank you for the reference to members with similarities. I will read their threads and reach out to them if any questions.

Sorry I missed your question regarding Stem Cell injections. I got so excited about your reply with the link to Clavel’s FQA’s referencing patients with concave vertebrae that I totally missed it! From what I understand Stem Cells have been successful for regenerating Facet Joints. But my Facet Joints are perfect right now - I don’t have back pain… Just painful and tingly glutes, hammies, and calfs! I haven’t seen any positive outcomes for Stem Cells regenerating discs. In fact, I read the following blog where the member describes in great detail his Stem Cell injections. His experience was very painful and unsuccessful:

http://healingmyback.blogspot.com/

Wow, 7 spine surgeries! I’m impressed that you sound upbeat, and I’m very thankful that you’re sharing your knowledge with me. I also share your skepticism regarding “minimally invasive” procedures. My sciatic nerve was in complete shock following microdiscectomy and now I’m all but certain to need another surgery. My L5/S1 vertebrae are ~2 millimeters apart from each other at the edges. At what point do they begin to auto fuse?

I believe that once you cross an invisible line it becomes better to act sooner rather than later. This is for multiple reasons. First, life is very short and every day is too precious to spend it chewing away at the nerves. Second, my condition is deteriorating – two months ago I had no pain in my right leg, then a month ago the pain was very mild, now it’s constant and hard to ignore.

On the other hand, if you can wait then there will be a better solution available in the future. I’m a mechanical engineer (graduated Cum Laude from Cornell) and have been granted 13 US patents – with 6 more pending approval. In the last month I have thought of at least 2 significant improvement ideas to the M6 disc. There is no doubt future devices will be better. I wish there was more money to drive innovation in this field. If only a certain rich famous golfer with back problems got behind one of these companies to develop the ultimate disc. Heck, many engineering students would work on it for free if given the challenge.

Why can’t you get an ADR for L3/L4?

After I get the latest X-Rays I will contact Dr. Clavel. And also get an appointment with either Dr. Blumenthal or Dr. Zigler. Maybe I can pull off a 1 day trip between New York and Texas to get their opinion. My main concern remains how concave the bottom of my L5 vertebra is… 6 millimeter drop top to bottom! I’m attaching a new picture where hopefully shows clearer how the disc is thin on the sides and tall in the center. Straight on the sides but S-shaped in the center. It may be that even the ActivL can’t properly attach to such an irregular surface.

Thank you for reading.
_______________________

"Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak." -Thomas Carlyle

"We fall, but we get up because the ground is no place for a champion." -Dustin Poirier
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  #9  
Old 08-19-2016, 11:04 AM
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Cynlite Cynlite is offline
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Posts: 666
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You're welcome. I'm happy to share my experience and be a person for you to bounce off ideas with in hopes you don't have to go through what I have gone through. Thankfully, I was active and able to water and snow ski into my 40's. You definitely need to get back on your feet. You have many more years of competing and playing ahead of you!

Wow, you're one smart guy! You are really blessed to have that going for you. Being smart comes in handy when having to make really advanced medical decisions unless you are squeamish about medicine and surgeries like my very smart sister who is also an engineer hehehehe. I have found that most surgeons and doctors take me seriously because I do my research first and then can speak intelligently with them about health problems and treatments. I helped both my parents and grandmother through their end of life health issues so, have spent more time in hospitals than the average person in the last 10 years. When a doctor doesn't reciprocate respect because of an over inflated ego, I toss them out. The best have risen to the top of their fields because they are so smart they are able to acknowledge what they don't know and have become humble in the process. Usually, the best doctors will have PA's and support staff that are also really good! The way I look at it is 50 percent of the people that graduated from medical school, graduated in the bottom half of their class. I always want to work with the best of the best. Neurosurgeons are kind of in a world of their own. They are known in the hospital hierarchy for being at the top of the food chain and also many for being a bit wackadoodle with not so great social skills hahahaha. I really wish the Mayo was offering ADR surgery. I met with the head of Neurology out here at an appointment for my Mom and was so disappointed. Usually, the Mayo has the most remarkable doctors and surgeons. So, you are looking for the best surgeon at a great hospital using the best disc for you and even then may still run into to a few problems but, at least they will be minimalized.

I read part of the blog you posted. It's a good blog. He had some really good suggestions. I'm going to go back and look at it again. I was surprised that chamomile tea was so helpful for him. I've always thought of it as a pretty mild nervine herb but, I've never drank it on a regular basis. I think the tea is worth a shot. There are many naturopathic things you can try out if you are open to such things. For example, if you are making blended protein shakes, throw in a 2 inch piece of fresh ginger for a 24 ounce drink or larger. I'm sure you already know how important water is but, hydration is seriously important for the health of the spine. I didn't know about it's affect on the spine until recently but it makes sense and where I live, I've carried around a 32 ounce bottle of mineral water with me for years. I have to measure and think about how much water I'm taking in every single day. It's easy to let that slide. Anyway, my point is that there are a lot of little life changes we can do to support our spines and our bodies to reduce inflammation. Drewrad wrote a good thread in the Naturopathic corner on his approach and I've written a few things too. It seems like too many people give the surgeons all the power to fix what is broken but, they really are just one piece of the bigger puzzle.

The interesting and somewhat scary thing about spine surgeons is how differently they all can see our condition so, getting a lot of opinions is really important. I never got a consensus but, hopefully you will because your spine is so healthy still! For example, Dr. Zeegers said this about my neck "It is very questionable if the protrusion at C3/C4 is significant at all; no indication for surgical repair." With my images up on the screen while talking to Dr. Clavel he said, "I don't know why the other surgeons don't see it. I think this level is where you have the most cord compression." Since I'm not a surgeon and did not have a consensus, I decided that I needed to choose the best surgeon I could find in the world and then when it came to my neck, let him decide how to approach the problem. This does not mean I didn't question him but, I did have complete confidence in him.

My L3/L4 has Spondylolisthesis. It's pretty minor because I didn't see it on my MRI at first glance. Rather than have the level fused, I opted to heal from my neck surgery, lose some weight, work on my core strength and use my inversion table. I have degeneration at the adjacent lumbar levels already so, I really don't want to worsen my body mechanics by having a fusion until absolutely necessary. I am considering stem cell injections down the road as an alternative and am doing what I can to improve my strength and posture. It is possible that I can avoid lumbar surgery and that's my goal. My neck surgery helped to correct my body mechanics and I work with a therapist on gradually improving my posture as I continue healing. Since all parts of the spine are connected, I believe that the correction to my cervical spine from the ADR surgery may ultimately help me to improve my lumbar spine health.

I can see what you are talking about on your images but, I'm afraid I don't have enough experience looking at lumbar images to offer any suggestions about it. I keep hoping some of the other senior members here who have gone through ADR lumbar surgery will have something to offer. You mentioned that your pain is getting worse. The spine is funny. My neck was symptomatic in my early 30's and then it went away after I decided to not get injections at the time. It came back with a vengence about 13 years later. There are people in terrible pain that have great images and people that have terrible images that are not symptomatic. I was one of the later for a long time. You kind of have to trust your gut on it after talking to a bunch of surgeons. Just remember though that surgeons only have one tool in their toolbox and that's surgery so, they almost always recommend it.
__________________
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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  #10  
Old 08-19-2016, 12:00 PM
phillyjoe phillyjoe is offline
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Arrierito, you might consider talking with Dr Jeff McConnnel in Allentown-not too far from NYC on 78. He does adr and was lead investigator on some new discs. I haven't used him but I recall one poster when to him for an opinion. That poster ended up with TBI
__________________
Pre Surgery:
C3-C4:Mild disc osteophytes. Mild-moderate right facet arthrosis. Mild right foraminal stenosis.
C4-C5:Midline central disc protrusion, significant. Mild canal stenosis.
C5-C6:Moderate disc osteophytes. Mild-moderate canal stenosis. Moderate-severe bilateral foraminal stenosis.
C6-C-7:Mild-moderate disc osteophytes. Mild canal stenosis. Moderate left and moderate-severe right foraminal stenosis.
June 29,2016-3 level M6 (C4-C7) Dr. Clavel Barcelona
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