What do you think?

[go*big*red]

I'm not even sure where to post this, so I think this is right. Not even naming it yet until I finish the message, as I'm not sure what to even name it.

I posted a few months back introducing myself. In short - I have been diagnosed with Juvenile Discogenic Disease (or disorder) which simply put means that my entire spine did not receive the blood flow to properly form the end plates to my vertebre, thus the discs prematurely dried out. Where I am at right now is that probably 95% of my spine is dried/bulging - basically bleh! I have a kyphotic curve in my thoracic and scoliosis in my lumbar - all secondary to JDD.

Surgeries are: PLIF at L5/S1 2 1/2 years ago. 2 years ago 2 level ACDF, C5/6 & 6/7. Due to non-fusion, re-did 6/7 last year in October along with removal of hardware from PLIF. Still not fusing at 6/7 but do have a plate so - oh well! (okay, I guess there's nothing about this that's going to be short - really sorry about that)

I am a 50 year old female and just read a post somewhere else on this board about age and ADR. I think I could be pushing the age thing and that scares me. No amount of PT helps my pain, ESI's do nothing any more and the pain meds just make me sick so I don't do those either. Basically, I manage without medication. Those that have helped, Bextra and the like quite working in about a month. (I realize that this is just one of the countless stories that everyone has is this spinal journey we are on)

The worst discs right now in my lumbar (I believe are the major pain generators)are L1/2 & 4/5. 4/5 has disc material into the neuroforamen (sp?!?) I also know, though, that discography is in order to actually pin that down.

All that said, this is my dilema - like us all, I'm just so VERY DAMN TIRED OF THIS PAIN and my surgeon (in Loveland - I've seen his name several times on these boards) told me the next step would be ADR as they become unbearable. The thing is - it's not unbearable -----yet, but my pain threshold is so high that what I live with might put many down. (did all my surgeries w/o post surgery meds) And, at 50 - I'm so afraid that my life will be over before it's so unbearable. I've spoken with other ADR patients and they have all asked me why I live with it when the ADR is so readily available now. I know my surgeon would go along with anything I want to do at this point. Also realizing that surgery is the last resort - the JDD is just progressive. My discs are 50% worse that they were 2 1/2 years ago according to the MRI's.

So, am I being stupid wanting the ADR? And, do they do it as high up as 1/2. I'm just tired of living my life in so much pain and no sleep and if this is a chance to have a close to pain-free life for a while, why not? Right? Right?

[Alastair]

Hi go big red,
what you're telling us here is absolutely awesome. I'm not familiar with the majority of the USA spine surgeons because I live in the UK, but do feel that there might be a slight chance of intervention by an appropriate and well qualified and experienced spine surgeon.

The surgeons across in Europe, especially Dr Zeegers and Bertagnoli are the most experienced ADR spine surgeons in the world. I would strongly suggest you send x-rays and things across to them for an opinion -- -- -- I think Dr Zeegers charges $79.You can send your X-rays by E mail -- I have described how to do that in the FAQ`s

If the end plates have not been formed properly then there could be a chance that these could be rectified with the latest type of cement which is used.

You need to have update MRI scans, discography, and as much medical information as possible.

I honestly don't feel that I have the experience or knowledge to advise you in your case, other than say take as much information to the best people that I know in the world and see what they say
best,
Alastair

[ans]

Hi GBR,

I had something serious medically occur in CO yrs. ago and was seen at a Univ. of CO clinic - then back to CA for treatment. This may sound snobby but in terms of back surgery, I'd see the Best, no matter what imo.

Good luck to you - ans

[go*big*red]

Alastair, thank you for your reply. Although I trust my surgeon totally, I would entertain the idea of a second opinion from your highly favored Dr Zeegers. HOWEVER, my films are 8 1/2 x 11 hard copies of "open MRI films". So, there are many films on one 8 1/2 x 11 sheet and are quite small.

They are not available on cd and taking a pic from a window won't help them at all. I think they're just too small.

So, I would be interested in mailing copies to him (I could probably reproduce them on my copy machine easily). Do you think that is possible?

And, if so, where do I get his mailing address or for that matter, his e-mail?


ans - thanks for your reply as well. My OS, Dr. Pettine, is highly regarded in this area and I trust him literally with my life! I am truly sorry for your situation at the University of Colorado. I hope you have fully recovered. imho, I do have the best spine dr. in the area. Thank you for your concern, however. I am going to pursue Dr. Zeegers opinion anyway.

GBR

[Alastair]

Both Zeegers and Bertagnolis details and e mails are in the FAQ`s If your MRI is a digital one which I guess it will be, no probs with a digi camera and sunny day - - -its worked for most of us. You can zoom in and out on a digital image on a computer, and also vary the contrast to see more all less detail.

Yours is a very complicated case, and certainly other opinions would be helpful to you.

Have you had a bone density tests done?

You could get the hospital where they were done to do a COPY (quite cheap) and send that if you get stumped with every other option.
Best
Alastair

[go*big*red]

I will try the digital camera and see what I get. Interesting that you mentioned the bone density tests. Yes, and after my daily walking, my bones are stronger than a few years ago, even with limited mobility! They are fine.

HOWEVER, during my last surgery, Dr. P mentioned in the operative report that my bones had a greenish tint. The iliac crest where they harvested for the graft, my neck and lumbar. Everywhere he saw bone it was green. He has checked on this and the only other time he has seen this in his career was in a chain smoker from Wyoming. Although I am an x smoker, I haven't smoked for 10 years and in my other 2 surgeries he performed, my bones were of normal color.

Anyone heard of this??? He thought that might be the reason I didn't/haven't fused.

[Alastair]

Well I don`t know what to say on this one -- - -you are not from Mars are you? -- - lol