Just a question

[go*big*red]

I'm new here and was directed here from another forum. Real quick history is that I was diagnosed with Juvenile Discogenic Disease (JDD) in 2000 I think. Have had 2 level cervical fusion 5/6 & 6/7. Re-did C6/7 due to nonfusion 10/04 and still not fusing. PLIF 3/2003 at L5/S1 with hardware removal same time C6/7 was re-done.

MRIs on cervical, thoracic and lumbar shows all but about 3% of my discs are drying and bulging. Also have a Kyphotic ((sp?) is that the right word?) curve in my t-spine and mild scoliosis in my lumbar. All that said, here's my original post....

All my lumbar discs are bulging and dried with 2/3 and 4/5 being the worst. The last ESI I had he just gave me a double dose of cortizone at L1 and let gravity take it south. I woke up the next morning a new woman!!!! But, alas, it only lasted a very short time (1 week tops) and now the pain is back with a vengence. Not sure how much more I can stand of this.

He said that what we would do with my spine is treat each level as it became unbearable. (Let me tell you I am just about there.) His "treatment" is to put in an ADR at each level if and when it gets to that point. Ultimately he wants to make me a new spine with baby stem cells 10 years down the road. I am going in mid July for a re-check on my neck and was going to talk to him further about this.

Is it feasible for me to ask him about ADR's at both 2/3 and 4/5 at this point? I am really tired of surgery and the recovery time involved. My thought is if we deal with the two worse ones now, then that might buy me a bunch of time as I am used to living in pain and the other two, while they cannot be salvaged, I believe are maneagable. If I have 2 good working levels above my fusion at L5/S1, that's good right?

What do you think?

[Alastair]

Well this is a very difficult one to answer. It does sound as if you are a candidate for ADR but also it depends how long the stem cell research is going to take.

I live in the UK and they are actually growing new discs to be implanted in people spines not 50 miles away from where I live. It's almost impossible to find out how things are going.

Meanwhile, we have people in the States who have done a surgery on the patient in Portugal and moved him back to the States and used stem cells from up the patient's nose implanted them into his spinal cord which was severed and the spinal cord has grown 3 cm, re joined up, and that patient is now walking with a Zimmer frame and soon to be walking unassisted where previously he was paralysed from the waist downwards.

I'm not sure of your age, but it sounds like you've got a lot of spine problems.

I can understand your doctors reticence to rush in with ADR if he can keep you relatively pain-free for the next two or three years when this new stem cell treatment might be available (it might be six to 10 years) nobody knows for sure.

Surgery is a hazardous and difficult road to travel down, the people who want to have surgery, have it because there is no other way out and their life is unbearable.

I'm sorry if that doesn't answer your question fully but I hope it gives you an insight into maybe what your doctor is thinking.
Best wishes,
Alastair

[go*big*red]

Hi, Alastair

Thank you for taking the time to reply. I am a 49, 50 in October year old mother, g-mother and wife and have dealt with this back pain for YEARS until finally diagnosed with something other than a "back strain" in 2000. I'm glad there is at least a name to what I deal with. It's a close cousin to Scheurmann's Disease but involves the entire spine instead of thoracic.

It's quite exciting to know that the gentlemen from Portugal will be walking. OMG, what "steps" they've taken!

So, if it were you, would you suggest this to him. I'm thinking that AT LEAST and ADR at 4/5 level if they aren't available for the 3/4 level yet.

BTW, my surgeon is the daddy of the Maverick disc. He wants so badly to help me and I think was sad that he couldn't have me in his trial. I fully understand why he couldn't, though.

[Alastair]

Hello again,
many thanks for responding to my posting, I'm not entirely sure of the full implication of this spine disease which is similar to Scheurmann's Disease.

Surgery is for those who really are at the end of their tether and cannot go on. The wise move is to do the minimal invasive things first but I can see that you've had quite a lot of surgery and surgery revisions are difficult.

The Maverick implant that you mention is being used for people with slightly different problems than yours I feel, but that has been a specialist field in the UK. The Maverick has been used successfully in the USA, no problems there.

No one has any idea when these wonderful things will be used on patients, especially in the USA. The Charit� implant has been used in Europe since 1989 and has only just arrived in the USA if you take my meaning.

Your doctor sounds extremely good and well-intentioned, I am wondering where he is in his knowledge of the new pro theses and ADR. Might it be wise to talk to one of your USA colleagues here and find out who are the real "super experts" Dr Reagan and Dr Yue come to mind immediately.

I lived in the UK so I've no idea how your health system or insurance system works that may be seeing one of those two gentlemen might be helpful in addition to your own doctor.
Best wishes,
Alastair