How would you proceed?

[MamasNerves]

Hi there
I've had years and years of neck pain. Pretty much as long as I can remember - had to have started in middle school (22+yrs ago), or possibly earlier.
I don't know for sure whether DDD can be inherited or not, but I know that I was diagnosed fairly young (at about 31), after watching everyone on my dad's side struggle with it for years.
I have done PT, injections, and chiropractic. The injections + chiro have helped my lower back (and crooked hips) quite a bit. The lumbar area is certainly livable at this point.
However, my cervical spine feels like a total mess. After several years of jumping through insurance company hoops, I'm left feeling like I really should have been looking at surgery before now. Injections and PT were laughable, and chiropractic, while helpful for a little while, is no longer as effective as it was. In the past 3-4 weeks, I have noticed a marked increase in neuropathy through my left arm and hand, my pain is quickly ticking back up, and my left leg is starting to get crazy, too. In the last couple of days, I started having pain on my right side as well. (This all makes me want to cry every time I have to say it out loud - I hate the idea that I'm not a fully-functioning mom for my kids.)
I went to a recommended neurosurgeon and he ordered an updated MRI (the last one was two years ago), which now shows increased herniation and a significant osteophyte at C5/6, and it sounds like both are pushing on the nerve. He is recommending ADR. (This was the same doc who suggested chiro to me last time, so I don't think he is just eager to cut or make a buck.) However...he was very casual about the surgery, saying I could have my choice of discs, and that he was comfortable with whatever needed to be done. His bio claims 8 years of experience, and he mentioned being involved in some ADR clinical trial at Vanderbilt, but I don't know how much of that experience is pertinent to my situation.

I have put in a call to his office - twice, actually. During the initial phone call (post MRI) he told me I could call back with any questions, but three days and two phone calls later, I still have more questions than answers. Their office staff is horrible - condescending to the point of being rude. My cheerful "hey I just wanted to check in" was met with an angry litany from the receptionist of all of the reasons why the doctor hadn't been able to call me back yet - as though it is somehow unreasonable of me to check back after 48hrs without a return call, with the weekend coming. And now it's after 6pm on Friday and still no call.
The doc himself has a great manner (when I can get to him), but I'm not sure I even want to call their office again, let alone go through spine surgery having to rely on these people for communication!

I also called Texas Back Institute, and emailed Barcelona, to see if I could get second opinions through them - though I would welcome suggestions for other options. My insurance is really good right now, and will likely cover a lot, but we don't have much money otherwise, so overseas travel is unlikely. However, I don't want that to limit my opportunities for good information.

Given my symptoms, I have a definite feeling of urgency here, but not much direction. I would love to know - what would you do in my situation? I am typically a research hound, but I don't really feel like I have the luxury of a lot of time to research... I'd love any and all encouragement or advice!

Also, I am allergic to nickel (diagnosed by patch test), but I am confused as to whether this is pertinent or not.

[Harrison]

Thanks for posting, and also providing a signature.

So you've had these pains for 22 years? And no trauma? What anti-inflammatories are you taking or have proven helpful?

[MamasNerves]

Originally Posted by Harrison

Thanks for posting, and also providing a signature.

So you've had these pains for 22 years? And no trauma? What anti-inflammatories are you taking or have proven helpful?

Thanks for the response, Harrison.

I know - that number sounds exaggerated , but that is how far back I have to think before I can say with confidence that I didn't have pain. My orthopedist raised an eyebrow at it, but my family can confirm that there were many times when I would come home from school and have to lay down for a while to get the pain to ease off. I don't know how much of my pain then was related to what I deal with now, but it has been a long, long time.

No, no trauma that anyone knows of. My best bet (very much reaching, here) is that, having had a relatively mild case of Lyme (I grew up in CT) in middle school may have somewhat accelerated the potential for degeneration. But again, that is my own little unsupported theory.

For many years, I wasn't able to take aleve (conflicting meds), so my anti-inflammatory of choice is usually ibuprofen. At this point, though, it isn't so much what I feel that concerns me, as what I don't feel. Most of my left side has noticeably diminished sensation.

I guess I'm trying to figure out which way to go at this point. I plan to:
1) Ask some polite but pointed questions of the local neurosurgeon (how many of these have you done? is there a device with which you are most familiar? etc.). Are there any questions in particular that other forum members have found it helpful to ask?
2) Try to get second opinions. This forum has provided several sources for this (thank you!!!), but I would love to have a few more names/facilities in my roster. (Docs/facilities with proximity to Nashville, or the eastern US would be especially helpful!)
3) Continue to research devices. Has nickel allergy been an issue for anyone else? Would you trust a surgeon who says he is confident with any device?
4) Make sure that I have all of the information I need to make an educated decision. In light of this, are there any other tests that other patients have found helpful or enlightening? (I will ask my surgeon this as well.)

[Cynlite]

I have a year into researching ADRs so, I'll share some points with you. I also have several threads on this board where I put a lot of information and other board members commented. I have a seriously messed up neck too and it started when I was a teenager. Trust me, I know how frustrating it is to live with this pain all the time. Ignore the naysayers. They have no point of reference to understand what it is like to live with this problem. So many of us have struggled without support from friends, family and even doctors because they don't understand. It just is what it is. Hang in there and be strong.

Trying to get answers from the surgeons can take months so, you have to try to be patient with the process. Easier said than done...I know! If a surgeon's support staff is really bad, it causes me to hit pause. The best surgeons are backlogged and usually take several months to talk to and make plans for surgery. They are busy, busy doctors!

I would not feel comfortable with a surgeon who thinks he is an expert on all discs. Placement of the disc is critical to a successful outcome from the surgery. There is always a risk of failure even with the best surgeons and the best made discs so, I want a surgeon who has lots of experience placing the type of disc I'm going to have put in my neck. There are special tools made for each type of disc. If the surgeon doesn't have all the tools they need then that's where problems can arise. One patient told me his story where he needed hardware removed but, Dr. Bierstedt didn't plan for it. He didn't have the tools to remove the hardware so he had to leave it in his neck. Dr. Bierstedt put in the ADRs but, his outcome has not been good. We have to be our own advocates and make sure everything we want is planned for ahead of time!

I think the best disc for the cervical spine in the U.S. is the Mobi-C. Dr. Blumenthal at the Texas Back Institute is one of the best surgeons for this disc.

I think the best disc used in Europe for the Cervical spine is the M6-C. I'm of the opinion that Dr. Clavel in Spain is the best surgeon for this disc.

See my post #169 re metal allergies and testing: https://www.adrsupport.org/forums/sh...=13049&page=17

Orthopedic Analysis is the easiest company to work with of the two labs and gives a more detailed report. I already paid $500.00 to NeuroScience Lab and they were a pain in the butt to work with when I asked for more detailed information. They said they do the MELISA test but, when I got the results, no graphs or ranges were provided. They said they stopped doing that. I'm not sure I trust their report either because they said I'm allergic to 5 out of the 8 metals which is perhaps 1% of the population. I will be having the test repeated by Orthopedic Analysis for another $500.00. I have a metal allergy to nickle which is why I got this test done in preparation for surgery. Please read my notes on how this test derailed my surgery plans. Also read Old Codger's thread about his metal allergy to titanium.

I hope these notes help you in your journey and wish you the very best!

[Harrison]

MamasNerves,

If you suspect Lyme, make an extra effort to be retested. Igenix or Advanced Labs would be a good start; though an educated Lyme disease doc uses these results with a clinical assessment to offer a diagnosis.

http://www.advanced-lab.com/about.php

http://www.igenex.com/Website/

And regarding Lyme disease testing, I have 5-6 interviews with Lyme disease experts on my video channel:

https://www.youtube.com/user/ADRSupport/videos

This is a lot to take in right now, but if you have Lyme disease, it’s possible the treatment(s) could actually resolve your inflammatory pains. I’ve talked to hundreds of patients through the years (myself included) that have found antibiotic therapies to be helpful in resolving joint pain caused by infection.

Here’s 20+ years of clinical evidence showing that bacteria have a proclivity/program/ability to invade joints:

http://adrsupport.org/forums/showthread.php?t=9218 (multipage topic!)

And how antibiotic therapy, even without confirmation, helped the majority of patients in a clinical trial:

http://adrsupport.org/forums/showthr...ower+back+pain

And short video:

Antibiotics 'Can Cure Back Pain', Study Finds
https://www.youtube.com/watch?v=tkly8-9zEFU

BTW, there are other types of antibiotics, and natural therapies that can create an antimicrobial and immune booster for the body!

So, consider an arsenal of natural therapies first. Build up your immune system with organic nutrition, chelation, enzymes, probiotics, walking and other accessible therapies.

And if you still need surgery, then you will be more ready and stronger for surgical intervention!