Coming out of hiding!

[nanfromsactown]

I am not sure which forum to post this in!

I want to reintroduce myself. I’ve been a “member” here for several years but have not been around for about 2-3 years. My Mom got sick and I needed to care for her and had to put my own self on the back burner. So now I’m back and looking for some answers.

I have been reading the surgical outcomes forum and the first thing that hit me was a lot of failed surgeries which concerns me. Has anyone come up with a pattern here? i.e. do most people with failures have a major loss of disk height before surgery? Nerve impingement? Facet arthropathy?

What type of doctor, here in the US, is best to evaluate my spine really thoroughly and put it all together? I am sort of feeling like its time to go “there” again. Stopped work in 1999 to find out what was wrong, had IDET and have declined since. No good life now, lots of pain, in bed most of the time (or reclining, its kind of all the same at this point)

Every MRI I’ve had shows good disk height, a slight bulge at one level, and no nerve impingement. How can they be sure the nerve is not being “bothered” by that little bulge? Is there another imaging test to see? I’ve had a discogram, way back in 2000, and won’t have another unless it is almost immediately followed by surgery, because the only thing that relieved the ongoing pain from that procedure was an IDET. Which then failed a few months later. My MRI’s have all been without contrast. Would having one with contrast show anything differently?

My leg pain is just awful, and is 80% relieved by ESI’s. I’m having another on Wednesday. It’s been 7 months, which is too long.

I have thought for years that my only hope for a really good recovery was ADR, specifically in Germany. I had a consult over the phone and internet with Zeegers AND Bertagnoli, both said I’m a candidate. That was least 3 years ago, so I need to go through it all again, hence I’ll be having a new MRI soon.

Is 2 level approved in the US? Which disks are now approved? When started this, Charite had just been approved for one level. My case is Work Comp, and I really am going to ask them to pay for ADR if that is what is appropriate for me. I also have Medicare and I was wondering what the status is of that. I know at one time it was approved but then a renegade doc was trying to get Medicare to stop paying for ADRs.

I am ready to get my life back. I will have grandchildren in a couple of years and I cannot imagine being the way I am right now. I would not be able to even pick up a baby! I’d have to have someone bring it to me. I am too young to be this disabled.

[builder5840]

nanfromsactown,

welcome back, although I'm fairly new here I know what pain is like and i'm very thankful for this site and all of the info its provided as well as a place to ocassoinally vent.. I'm really sorry about all the pain your having and having to start over has got to be frustrating but at least your moving forward. My problem is cervical so i'm not sure about what is available for the lumbar but i'm sure others will chime in. Your MRI results sound similar to mine and I was constantly told that I shouldn't be having pain until I had my discogram which like you has only increased my pain. It showed tearing also, I was told that although most say you cannot feel pain from the disc itself there may be evidence to the contrary. I'm not positive my pain is coming from my disc but when they injected the disc the pain was immediate. anyway i'm having a two level ADR but have to go to malaysia to get it done.
Good luck with all the test, I hope you find the best solution for you soon

Fall from ladder in 05 lots of pain
lots of test
scheduled two level ADR Malaysia Discover disc

[nanfromsactown]

Wow, Malaysia!! I didn't know they were doing ADR over there.

I'd like the skinny on what has been going on with Alphaklinik and Dr. Z.

I'm not afraid to go out of the country to get the best results.

Nanci

[KBear]

Nanci,
Welcome back, I have not been on here too terribly long; but wanted to say hello. I wish I had some answers for you; but know very little on testing. I also have no idea about the 2 level ADR in the US. Maybe, do another post with that question as the title and someone will respond to it. I was going to suggest checking out clinical trials in your area. I know I have read of a lot of them in California. I am probably going to have my one level ADR done through a clinical trial. I am working on getting my insurance to pay; but am not holding my breath.

As far as what kind of doctor to see, I think picking several of the best and getting different opinions, then deciding what you will do based on that, would be your best bet. I have seen anesthiologists (who did my Idet and injections), physiatrists (sp?), MD's who were spine specialists, neurosurgeons (who was anti-ADR), orthopedic surgeon (who will be doing my surgery), chiropractors, and more. Sorry I am not much help; good luck. Kathy

[nanfromsactown]

Thanks for your reply Kathy!

I read Linda's ordeal and the fibrin thing sounds interesting, but seems too new to just jump into, for me. Although if it works and doesn't do any harm for future stuff (similar to IDET I guess) then I guess it might be worth looking into. It really does sound too good to be true, but also like it's exactly what my spine could use.

It's a hard thing to figure out, do I do ADR or do I try something less drastic? But my life is just full of pain and doing almost nothing day in and day out. I know I cannot live this way so I need to make a decision. I HAD decided to have ADR and then my Mom got sick, so I think it's a matter of kind of re-educating myself to make sure I'm up on all the doctors and all the goings-on in the world.

On that note, does anyone know what's happened to Dr. Zeegers and how I can reach him? I emailed but didn't get a response. He does have all of my records and need to renew my conversations with him. Any help from anyone would be great.

[Jessica]

Hello Nancy,
I am both glad and sorry to see you back here. I wish that your situation had improved by now.

I have one word for you---DISCOGRAM!! I have a disc that is causing my remaining pain. The doctors here kept telling me "I dont see anything in the MRI"!! You should not be having this pain. I contacted Bertagnoli = he said what does your discogram say? What discogram, I answered!

Discogram exactly reproduced my pain and confirmed that I need another ADR at C6/C7. Wanna go to Germany together? I am, once again, outside the FDA approval in the US. I can go to Delamarter in a study and be guaranteed a prodisc, or go to Germany. I am trying to get it together in the next few months.

Sorry, I do not know the FDA rules on Lumbar, hope they are better than cervical. I was able to find the approval letter on the FDA site and Delamarters site for Prodisc and it tells you FDA rules. If you know which disc you want, you can check the FDA approval.

[Cirobi]

Hi Nancy,

Welcome back! (even though it's not the best circumstance to have to be here) I'm not sure how to answer a lot of your questions as I'm relatively recent to the group. I had my ADR surgery over this summer and am doing fantastic! I think when it comes to reading so many "failed" procedures on here that it's best to remember that a lot of people disappear once they've gotten their life back post-op. Because of that, not a lot of the big success stories show up since the ones still going through troubles are still looking for answers.

Also, keep in mind that every single one of us has a different circumstance and our bodies react differently. There are so many factors that go into making someone a truly good ADR candidate that no matter how fantastic the surgeon, there's always that risk of some underlying issue going undetected.

I really believe in ADR as an amazing option in terms of back surgery procedures, but it's also good to do a lot of research and make sure you're truly comfortable with it. Don't push for it if you may not be a true good candidate.

I'm not sure how disk height factors into the pain equation aside from possibly the obvious. My disk height was fine prior to my surgery but there was a significant enough bulge to cause nerve irritation. I think there's a decent amount of interpretation of what is and isn't a big enough bulge to bug the nerves when it comes to simply looking at the MRI image. The way my MRI report was originally written made it seem like nothing was wrong, but when the first surgeon I spoke to saw my MRI he told me my disk was toast. If your leg pain is terrible, then I'd have to say that either something is hiding on the images of that bulge or there's a deeper problem but that's my unprofessional guess!

Anyway, I'm sure more folks will be able to add more detail. Just go with your gut feeling. Only you can truly know your body the best.

~Sara

[berry]

Hi there Nan and welcome back from me too, sorry to hear your Mom got sick.

I am a recipient of second generation lumbar ProDiscs which initally did great for a couple of years but am currently (almost 5 years later) having problems with facet arthrosis and inatrogenic instability. My surgery has not prevented adjacent segment degeneration or provided stability as hoped, which is disappointing to say the least. Saying that I have no regret about undergoing the surgery although if repeating the situation I would look into a hybrid surgery as it is my view that the movement permitted by the disc at L5/S1 has contributed to the degeneration of my facets. Even now I am still better than I was prior to the surgery so I don't want to scare you. It could be that my situation is simply a natural progression of disease.

The newer improved designs, such as Activ L, are promoted to protect the facets more than the earlier devices and the centre of rotaion is different so should in theory help prevent rotational instability. During the time you have been caring for your Mum surgeons have gained experience and lessons learned to improve.

I hope you get your life back Nan and good luck in finding an experience surgeon to perform any surgery.

Very best wishes

Lynda

[Terry]

Welcome back to the forum. They have not approved multiple level ADR surgery in the United States at this point. The only way you are going to get this done here is through a clinical trial. The other option is to go to Germany and have the latest technology done there. I had four level ADR surgery in November 2006 and went to Germany to have it done. I have two Maverick Discs in the lumbar area and two Prestige Discs in the Cervical area. It sounds like you have no life at all, currently and, will have to decide who runs the show with you. I would say that it sounds like you are more than ready to take charge of your existence and get your life back.

Hang in there and let us support you in the process.

Terry Newton

[phylly]

Hi Nan,
I am also sorry your mom got sick. I am not one of the very successful cases and I am in the process of trying to figure that out. I had 2 level prodisc done by Dr. Delamarter and when I had a decompression surgery things sort of fell apart. I wish I knew the difference in all the discs and how they load the facets but I will just say I hope that everything does work out for you because I think the idea of preserving motion is a good one. I just had a rhizotomy and do not know if it has helped yet, only 5 days and so far I still have a lot of pain but I will be hopeful.

I would also recommend a discogram when you are ready. MRI's don't always show the whole story. But I do agree with you not to do that until you are ready for the surgery. I also thought that workman's comp paid for 2 level ADR's if you need them but I am not sure? Good luck with your search and I hope that you are successful and are our of pain soon.
Phylly