[LizaJane]

Hi folks,

I've not been very active lately, while I do try to check in and put my 2 cents in as often as I can. But I'm going to the Mayo Clinic in Rochester on Sunday, and getting ready has been consuming.

The consultation is mainly about my back. The major opinion here in NY is that there is no hope that it will ever fuse, I will be increasingly disabled by pain, and require more extensive surgery whenever I'm emotionally ready for it. I'm told by my spine surgeon that there will be absolutely NO neurological from waiting, because the spine has been so decompressed by the laminectomy. (For those interested who do not know the backstory, I'm a pn patient using this board since 2000, who had a spinal cyst and had a laminectomy and fusion in Feb 06)

My surgeon is not worried about the screws which have become loose in my spine.

Several doctors who are not my own doctors, people I've gotten through by hitting the email address button on abstracts, have said that fusion is possible, but that loose screws are a danger to soft tissue and bone.

So, I'm off to Mayo to get a good opinion on whether or not there is danger from the scrwes, plus, whether I've managed to improve the state of my spine with the bone growth stimulator I insisted upon last month, after reading about them on the net.

(anyone picking up a shade of bitterness about my treatment is on target with the core of my feelings about the entire last year).

I dont' know if they'll want to re-visit the neuropathy subject with new studies, or a f/u visit to the people who evaluated me in 2000.

I have been working with the pharmacy which messed up the meds they prescribed for me this past year, and getting no place, really. They made two medication errors, but did not write incident reports on them. They had me mail back bottles with the wrong dose, but that left me without documentation. I'm bitter about the pharmacy also. The pharmacist says what he did was proper and does not need better methods for dispensing.

He had dispensed a med ordered 6 months earlier, because the current medicine was out of re-fills. He thinks that's okay. I've written to the CEO of the company, and he's "investigating" which means documenting that they've done well.

Anyway, I'm off Sunday. I rented a laptop, knowing how it helped Billye keep in touch, but the thing weighs a TON, and I'll have to buy a bag on wheels to lug it around.

Overall, I am feeling much more well than in the past couple of years, though not really "well" yet. Just moving in the right direction.

[NTLegend]

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[Alkymst]

LizaJane,
Being new to this forum I didn't know the historical perspective for your situations. My sincere best wishes for your upcoming trip to Mayo. I hope the spine Drs and neurologists there will be able to give you some good info and recommendations to help resolve your back problems. I'm sorry about the horror story you experienced w/ your pharmacy and your back treatment last year.
I do hope you will get some definitive answers and relief.
Best wishes,
Alkymst

[glenntaj]

Keep in touch--we're all interested on what they say about your situtation. Many of us have spinal stuff going on in addition to peripheral nerve issues; I know I myself use you as a sort of litmus for ideas on how the two issues interact and what can be done about them.

Report as often as you can--and here's a hope for some pain free, or at least pain-minimal, days.

[HeyJoe]

Ok I know I am going to get hammered by the vitamin experts here but I need to pass on this information. MY wife had a non union fracture of the tibia for 3 years, with infections, skin grafts, bone grafts, op1, external fixators. Finally she saw a Dr. Feldman , nice person, great surgeon, from Hospital for Joint Diseases who put on a taylor spatial frame, also known as an ilizerov frame named after the doctor in russia who developed it. ONe day she ran into a patient of the original Ilizerov,his daughter is at hospital for special surgery in NY, who told her that Ilizerov told him to crush up egg shells for calcium. Its calcium carbonate. I know what i hear hear about absorbable forms of calcium, but humor me for a second. Anyway she started to take the powder form that you can get at iherb and her fracture healed within weeks after 3 years of not healing. There was another patient there whose fracture left his tibia splintered also for years and was one the verge of amputation, and she told him about it and 2 months later his frame was off. Another person we know who fell off a later healed quickly from a compund fracture. She has also used it on a horse who had been lame for a while. It costs about 4 bucks a bottle. I know you are probably getting bombarded with suggestions but I felt that i needed to let you know so that you can make an informed choice.

[darlindeb25]

Joe--I am going to let my mom know about your suggestion. She had lumbar surgery in Nov 05. 12" of steel rod, 16 screws and she still is in misery. Now her right hip is in bad shape and she absolutely does not want anymore surgery. She had been walking with a walker, finally was able to get around, now she has a cane because she can not put any weight on the hip. She is only 70 and should still beable to enjoy her life--she can't go grocery shopping with my dad anymore, she refuses the electric wheelchairs, can't walk the store, she is very depressed about all this. My mom and dad always do everything together. I will let her know about this--maybe I will buy her some and send it to them. Thanks.

Wish it could help our neuropathy!

Good luck LizaJane--I hope Mayo figures this all out for you. If they do, we will have to let my mom know too. Have a safe trip.

Deb

[dahlek]

Super good thoughts for the duration. Whew! I have a LOT of folks on my THOUGHTS PLATE Lately! You won't be short-changed, I promise!

It's a hard decision to make, but, once made, you will at least be better informed about what all comes next...or not. Not ONE of us ever wants to accept the possibility of TOTAL Permanent Stuff!

My heart also is with you during all this, and please, do keep us up to date...You too shall have a nosy, bossy set of 'balloons' hovering over you. Geesh We wanna KNOW, GOTTA KNOW! We could be next?

Sending you heaps of pre-heated fuzzies to keep your toes warm...it's still COLD up there! - j

[nancy-h]

I wish you the very best, Liza Jane. You are a good person and always right on the spot to help someone in need. Let's hope some of that kindness pays dividends to you at this time.

Nancy-H

[LizaJane]

I came here with only one real question--are the loose screws a danger. It was the head of their spine department who had alarmed me about them to begin with. But he's just a pain doc, and his alarm was not at all matched by the neurosurgeon, who saw me yesterday also. The pain guy suggested a bone scan to see if there were any clear sites for pain generators. The surgeon said the scan will be abnormal, and not answer the question. THe only answer to what are my pain generators would come putting a needle into suspected areas, such as directly into the screw holes, and injecting lidocaine and seeing what happens. He doesn't think the scan woujld help.

He said, yeah, the surgery has failed, and the steroids and foxamax probably contributed, but he wouldn't be definitive, sensitive the possibility of a lawsuit on my side and not wanting to get involved with that. I totally understand that. He suggested getting CT scans every 3 months to follow the state of fusion, and as long as there's improvement, keep using the bone stimulator. If there's no change, that's the time to stop. Also, he said there was a reasonable chance of late fusion, over the next year to two. But, he said, don't get too wrapped up in the fusion question. Studies have shown that continued pain is not related to whether or not fusion is successful.

I think these are intelligent opinions, and believe them. So, I'm ready to come home tomorrow.

That's all. Nothing dramatic, but believable, and reassuring that I understand my situation correctly.

Whether or not to get treatment for my pain, via injections--he agreed with me, that if the pain is tolerable, don't get the steroids; but if it is debilitating, there's no evidence that a one time dose would change my future.

A reasonable guy, I thought.

So, again, ready to come home.

[BEGLET]

Good to hear from you - wondering how you were doing...,. Sounds like you feel more comfortable with whats going on right now - so the trip was worth it? Thats really upsetting that the surgery failed so far - but knowing it may still heal in the next year or so is promising.

Have a safe trip home.