Looking for answers - surgery required (cervical)

[AlexL925]

I am a 22 year-old male in very good health, but have had chronic neck pain since playing football about 7-8 years ago. In early February of this year, I began to suffer from numbness and tingling in my right arm. An MRI of my cervical spine revealed multilevel disc degeneration. The summary is as follows:

C2-C3 disc shows no bulging.

C3-C4 disc shows broad-based degenerative protrusion with endplate osteophyte spurring resulting in spinal stenosis with cord compression upon the cervical spinal cord, as well as mild bilateral proximal neural foraminal spondylitic narrowing slightly worse on the right.

At C4-C5 there is prominent broad-based degenerative disc protrusion with endplate osteophyte spurring resulting in spinal stenosis with cord compression and bilateral neural foraminal spondylitic narrowing.

At C5-C6 there is also broad-based degenerative disc protrusion with endplate osteophyte spurring resulting in spinal stenosis with cord compression and slight bilateral proximal neural foraminal spondylitic narrowing.

At C6-C7 there is mild degenerative disc bulging unassociated with any spinal stenosis or cord compression or visible foraminal narrowing.

The C7-T1 disc remains normal.

In the cervical spinal cord at C4-C5, to right of midline, there is a small focus of increased T2 signal intensity measuring approximately 7 mm maximal size. This is nonspecific, but the possibility of developed myelomalacia in the midcervical cord is raised.

There is no evidence of syrinx. There is no cerebellar tonsillar herniation through the foramen magnum.

The cervical vertebrae show no fracture and no suspicious marrow infiltrative mass lesion. There is a reversal of the cervical lordosis centered at C4-C5.

Impression: Degenerative cervical spondylitic changes resulting in multilevel spinal canal stenosis with compression upon the cervical spinal cord at C3-C4, and more pronounced at C4-C5 as well as C5-C6.
At C4-C5 the possibility of developing myelomalacia in the cord is raised.


That MRI report is from February 9. I went to see a spinal surgeon who recommended 3-level ACDF of C3-C6 as soon as possible. He said that I was at risk for paralysis or worse if I experienced any trauma to the area. I asked about alternatives (with ADR in mind) and he said that as a doctor who does have replacement experience, I was not a candidate. My knowledge on the subject at that time was far less than it is now, so I did not ask why (i.e. number of levels only, or presence of cervical kyphosis). I initially scheduled the fusion, but canceled it soon after to look into other options. The numbness and tingling I had experienced subsided for about a month at that point.

Then, about 2 weeks ago, my condition worsened significantly for a short time. My right arm and hand felt cold constantly and nerve pains were often present. Also, I began experiencing nerve pains all along my right side -- right leg, foot, and buttock when seated –- something that had never happened before. The same feeling of coldness was often present in my right foot as well. The symptoms lasted for 3 or 4 days, subsiding after extended rest. All that remained then were some slight sensations in the right hand. The symptoms have since returned -- but to a much lesser degree -- in the last few days, although I would not be surprised if they faded away again soon as they seem to come and go in waves now.

Being only 22 years old, I find this all quite shocking to deal with. Nearly every case I have read about refers to patients much older than me. I have no way of knowing how much of my condition is due to sports injuries, congenital issues, or simply poor posture, but I do have great concern over fusion surgery after reading about the high occurrence of adjacent disc degeneration. With mild bulging already present at C6-C7, it wouldn't be long before I'd find myself on the operating table again. I hope to have many decades remaining in my life, and I'd rather not spend them all repairing subsequent failures every few years. I feel that I must act soon though -- regardless of the chosen course of action -- for two reasons. The most obvious one is the seriousness of the risk I face each day in my condition (i.e. paralysis or death). The other is that I am scheduled to enter law school in the fall which will require a recovery from whatever procedure I decide upon by August.

I have read in studies that the reversal of lordosis in my cervical spine makes me a poor candidate for ADR, but my fears about fusion have made me check into it anyway. I came across Stenum Hospital in my research and sent them my case information. They responded by email -- in a somewhat canned manner -- saying they think they can help me using the Spinal Kinetics M6 cervical disc. They are in the process of reviewing my medical documents and I'll probably get a final response within the next couple weeks. In perusing these forums, I see that there seems to be a great split between those who trust Stenum and those who don't. While I'm not one to dwell on a couple bad stories, I do want all the information I can gather before making a decision. I also see that Bogen Hospital is well-regarded and I may now check with them as well. Any concrete anecdotes about the two would be appreciated.

To summarize, I'm looking for unbiased thoughts (if such things exist) on what to do. My surgeon here tells me "fusion", and whoever I talk to in Germany will say "ADR". I just need to know that I'm doing the right thing when it comes down to it. Should I trust the foreign technology for multilevel cervical disc replacement, or is that just asking for more trouble down the road? Which hospital is truly the 'best' and yields the highest success rate? What kind of recovery am I looking at from each of these procedures and is my law school start date likely to prove problematic? As an active 22 year old, am I going to have to limit my activities for the rest of my life after surgery?

I apologize for the length of this post, but I wanted to get everything out there. Any answers or suggestions would be most appreciated. Thank you for your time.

-Alex

[steve55]

ADR will certainly allow you a much shorter recovery time so you can get on with your life, and law school. As you can see in my signature, I had a 3 level cervical adr C4-C6 with Dr Bertagnoli in Bogen. YOu may follow my story in the ADR outcome section as I have posted in great details and very often about my day to day recovery. Im now at the 6 week mark and the last several days Ive been able to work 6 days (maybe could have done 8 hours but didnt want to push it) and doing treadmill all with only alleve as needed, some days without alleve. ABout 25% of fusion patients are back to work in 4 -6 weeks, and with a multi level fusion, Im guessing you may be 3-6 months out of commission. And based on my 1 year's worth of reading hundreds of ADR vs fusion stories (fusion stories can be found at the spine health website by the way), fusion seems to have about a 50-60% long term success rate with the rest still having pain issues as far out as 1-2 years out. Scientifically, the claim is that fusion is as effective as ADR but I call BS on that. Spinehealth is full of long term fusion failures, they are all over the place and not hard to find. So, I said no thanks! On the other hand, try finding cervical ADR failures. YOu will be hard pressed! Though lumbar failures can be found with a little searching. ADR seems to have a 90-95% success rate (basing this on personal observation from all the outcomes IVe been reading). They havnt proven yet that ADR prevents further disc degeneration but I along with the germans and many US doctors feel convinced it will. It only makes sense that a movable disc puts less stress on adjacent discs than a Fused one will.

Plus, Cervical ADR is always reversible either by fusing with the ADR discs in place or by even removing the ADR and fusing. So, you still have options in case it doesnt go well. Once you fuse though, you are done, ...no second options, no second chances. Though I cant recall ever reading a failed Cervical ADR outcome that needed fusing. Cervical ADR's have a little better success rate than lumbar cause they are supporting a 15 pound head and thats about it. Lumbars support your whole upper body weight. Just not alot of stress in the cervical so the ADR discs can do their job nicely as serving as basic moving supports without having to support much weight.

No one can make the decisoon for you. This is just my input here. Weigh it with what others might say. I can say I am VERY PLEASED with my 3 level ADR thus far. Lastly, I chose Prodisc offerred by dr bertagnoli in Bogen because I have read over 40 ADR stories and anytime I saw Prodisc and Bertagnoli in the same sentence, the word SUCCESS always followed. I havnt seen hardly any M6 stenum ADR outcome stories to allow me to judge its efficacy. The M6 and stenum may be as successful, I suspect it is, but because I was unable to read stenum M6 stories I went with what was a KNOWN based on the 40+ success stories I read with Bertagnoli.

One ADR patient I spoke to who spoke to many ADR surgeons was basically told , the choice between the prodisc , prestige, or the M6 is like choosing between a mercedes, BMW, or Audi. They seem to all work equally effectively. But for me, I also like that he prodisc is a simple ball and socket design whereas the M6 relies on alot of internal fiber structures. I like to keep it simple with anything that is to hopefully last a lifetime, so Im glad I chose the prodisc.

[AlexL925]

I appreciate all you've written here. Yours is the closest case I've seen to what I'm considering and ADR certainly seems preferable if it's deemed a viable option for me. I do have a few questions for you though:

• I see in your signature that you first received your diagnosis from Dr. Zigler at TBI. I was under the impression that multilevel cervical ADR wasn't done in the U.S., but you seem to imply that he was planning to perform a 2-level surgery for you. Am I interpreting this correctly? Are there U.S. clinics that offer multilevel ADR, and if so, is there any particular reason why you didn't have the surgery there (or elsewhere in the U.S.)?
• What options did the hospital present for you in the case something goes wrong or needs attention? I worry about the prospect of my surgeon being 4000 miles if, God forbid, I ever needed him. Is there a surgeon in the U.S. -- and especially close by -- who could provide knowledgeable and prompt treatment if required?
• What did your doctors tell you with regard to limiting your activities? Are there certain things that they said you could never do again (i.e. heavy lifting or athletics)? What sports and weight training exercises are or are not allowed? Do you expect to be able to maintain an active lifestyle eventually, and if so, how long until that's possible?
• While this is closely related to the previous question, what is the long term prognosis you were given and how long until you're expected to reach it? As dangerous as my condition may be, it's never once prevented me from doing anything I wanted to. Therefore, it's a little scary to know that I'll voluntarily be taking that ability away with surgery. Was it suggested to you that a full recovery to your condition prior to disc disease and/or surgery is possible, probable, or even likely? It seems to me that since the surgery replaces a bad disc with a 'new' one, there should be hope for things to return to their pre-disease state. Is this a foolish assumption?

Your answers to these (and any others you might think pertinent) would be greatly appreciated. Also, if anyone else out there has thoughts on these questions, I'd love to hear them. Thank you again.

-Alex

[Maddie]

Steve, I'm sorry to see you in such a position at such a young age. I have been looking at Stenum as well, but had conflicting diagnosis from two other doctors....all different.

I bit the bullet and went to see one of the top surgeons in the US this week, Dr. Bitan from NYC. He spent about four hours with me and came up with this plan that I am happy with.

I need five level surgery...C4/5 & 5/6 as well as L3/4, 4/5 and L5/S1. I was after ADR as well, but he convinced me that I would be best served with a combination of fusion and ADR at both levels. Fusion at the C5/6 with ADR at the higher level to preserve motion, but to significantly reduce the swelling at the very compressed spinal cord at 5/6.

He also wants to fuse L5/S1 and L4/5, as he said there is very little motion there now, but to do ADR at L3/4. I was very concerned about fusion, for the same reason as everyone else, but he made a very good argument for this plan instead. He both listened and answered all my questions very will, with understanding and compassion. I have never met a doctor that I was more comfortable with.

Since I am from Canada, I have the added complication of getting this approved with our government provincial health board. Fortunately there is another case that won in appeal with a very similar scenario, with risk of paralysis or death, the same as you, because of the compression at the C5/6 level.

I had been very intent on getting ADR at every level, but decided that this did make more sense after all. It is very difficult making decisions when you have so many different answers. Do your homework and trust your gut feelings. I only changed my mind after a year and a half of research and good luck at finding the right doctor.

[steve55]

Originally Posted by AlexL925

I appreciate all you've written here. Yours is the closest case I've seen to what I'm considering and ADR certainly seems preferable if it's deemed a viable option for me. I do have a few questions for you though:

• I see in your signature that you first received your diagnosis from Dr. Zigler at TBI. I was under the impression that multilevel cervical ADR wasn't done in the U.S., but you seem to imply that he was planning to perform a 2-level surgery for you. Am I interpreting this correctly? Are there U.S. clinics that offer multilevel ADR, and if so, is there any particular reason why you didn't have the surgery there (or elsewhere in the U.S.)?
• What options did the hospital present for you in the case something goes wrong or needs attention? I worry about the prospect of my surgeon being 4000 miles if, God forbid, I ever needed him. Is there a surgeon in the U.S. -- and especially close by -- who could provide knowledgeable and prompt treatment if required?
• What did your doctors tell you with regard to limiting your activities? Are there certain things that they said you could never do again (i.e. heavy lifting or athletics)? What sports and weight training exercises are or are not allowed? Do you expect to be able to maintain an active lifestyle eventually, and if so, how long until that's possible?
• While this is closely related to the previous question, what is the long term prognosis you were given and how long until you're expected to reach it? As dangerous as my condition may be, it's never once prevented me from doing anything I wanted to. Therefore, it's a little scary to know that I'll voluntarily be taking that ability away with surgery. Was it suggested to you that a full recovery to your condition prior to disc disease and/or surgery is possible, probable, or even likely? It seems to me that since the surgery replaces a bad disc with a 'new' one, there should be hope for things to return to their pre-disease state. Is this a foolish assumption?

Your answers to these (and any others you might think pertinent) would be greatly appreciated. Also, if anyone else out there has thoughts on these questions, I'd love to hear them. Thank you again.

-Alex

1. Yes, there are many doctors in the US performing 2 level ADR. Havent heard of any doing 3 level though. Not sure why. I went to germany instead primarily due to Dr Bertagnoli's reputation, and that he has performed more ADR and multi level ADR than any other suregeon in the world. Experience and reputation means alot. And this board and others are full of patients who report success after going to Bertagnoli. Ya know, if I had seen a back message board showing a similar number of patient success stories with Dr Ziglar, hell, I may have stayed home in the states for this surgery. However, on the other hand, the cost of ADR surgeries in germany is about half of what it costs here in the US. SO, since insurance doesnt cover multi level ADR, going to germany saved me about $25K.

2. Yes, certainly there are US ADR doctors who should be willing to treat you should you need any help. They say that many will not be too enthusiastic about helping another surgeons patient but given the distance, IM sure many will understand and do what they can if necessary. But really, think about this,....what kind of help could you possibly need that you couldnt get by emailing with your doctor in germany? Whatever a US doctor might do (order new X rays, or a MRI, or asking you questions, etc) can be requested by your german doctor. You would just go get these procedures done on your own here in the US at a US clinic and send the X ray, MRI etc to them. Dr consultaions can be done in person or by email correspondance. Its all the same. I mean, I have never had any doctor feel the need to physically touch or feel my back to help arrive at a diagnosis. I just dont see how its any different being local or overseas via email communications. MOST IMPORTANTLY, I figured the best way to not have to worry about this post op care issue is to GET IT DONE RIGHT THE FIRST TIME!! If I go to the very best when having this surgery, its alot less likely that I will end up needing post surgery help anyways. Like I said, there's not much a local US doc can do that a german doc cant do. Its just that one is in person and the other is done by email.

3. I have been told that my multi level ADR will not limit me in any way activity /sports wise. I was told that after 3 months, I can do whatever I want, running, even weight lifting. Ive seen ADR patients report being in skiing accidents where they busted their lip and jaw from the impact and no ill effects on the ADR. I think the ADR is even stronger and more impact tolerable than the human disc. LOL. This is the impression I get from what I have read. But no need to purposely test that theory. LOL.

4. Yes, the impression I got from the Doctor and from reading patient stories is that you should be fully fuctional the same as before the surgery, same as with healthy discs. 100% recovery. BUT, if your back is so bad off with other issues, ADR may not necessarily solve all your problems. Each paients outcome is unique, but just read the patient stories here and you can see that it seems that most people fully recover within 3 mo to 1 year and are fully functional.

[AlexL925]

Wow. That's all very helpful Steve and great to hear. Thank you.

I think you've convinced me to take a good look at what Dr. Bertagnoli can offer me. I'm still interested in what Stenum can tell me, but I'll probably get the ball rolling with Bogen as well to keep my options open.

Thanks again, and I'll certainly let you know what route I take.

-Alex

[Jessica]

Hello Alex,
I know that Dr. Delamarter has done 3 level cervical in Santa Monica. The website is www.laspineinstitute.com. I have met with him and he has offered to do a 2nd level for me (I already have my first), which is not yet FDA approved in the US. My experience in Straubing with Bertagnoli was top notch. I am happy to answer any questions you may have. The single level for me now is $34k from Delamarter and $24k plus travel from Bertagnoli.

[ThomasL]

Hey Alex,

Your story stories sound vary familiar except that I'm 40 and been going through a slow degenerating process for the last 8+ years while trying to track down this mystery illness with too many medical professionals to count. Needless to say - they are a fired! After getting told that I need fusion - and doing the research - I;m not up for a procedure perfected 25+ years ago!

From what I've been reading, whether it is a bias of the people on this forum, that your inclination of Dr. Bertagnoli is the same direction I'm heading.

Like you I have to move quickly - were one accident away from a hover round scooter or worse. My mobility is dropping as I've been suffering foot nerve pain from this for almost 2 years and have good and bad days. More bad than good lately. Arms are getting worst weekly.

Any update on your consults?

Thx,
Thomas L. Fessler

[Harrison]

Tom, sorry you are here, but you are among friends. Some people here have "mystery illnesses," so can you elaborate a bit more on the degenerative condition that you are battling?

Some people look at it systemically, but most people in this community are at their wit's end, and tend to view their treatment orthopedically rather than holistically. Hence, my question. Whatever the case, thanks for sharing.

When you can, please post a new topic about your/my question. In the meantime, let's get back to Alex!

Alex, wuddup?! I read your topic when you posted, but I was not clear about what trauma(s) you had to your spine? or other illnesses that may have contributed to your problem? Please do share...

stenumnightmare.com