h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

The last 2 experimental treatments have been disasterous.
One I would have traded the severe allergic reaction to sulfa for ( asuming the same survival)it was hellish.

*sigh*
May write more deatils later.
It may help my resentment that has been held to a minimum.

Going to Nuerologists again within a few weeks.
Had 2 appointments with other doc meantime.
Mri(s) coming again.
I hope they can see what they need to, so much bone is growing madly it will be amazing if they see a clear path. My spine is not stable enough for another laminectomy in the same area.
The bone will grow if cut into and the last thing I need are more bone spurs on my spine.

I have been only told 2 doctors in the whole state are approved for doing artifical disc implants in the neck. I had hoped by now it would be pretty rountine, as I was given that hope 7 years ago. I have no disc to speak of anywhere, no cushions.

Could be a while before that option is available. A few more are doing the artifical discs in the lower back.
I will have to read up.I wonder what they are filled with?
I like the idea of a small micro-surgery and know the Uk has been doing them.

Anybody with personal knowledge/experience of artificial disc success?

I was told it is normal for a patient in my position and medications to not be given sleeping medication. Too easy to off yourself.
I like having a blunt doctor, better than the alternative,
I am too tired to guess, I like medical information blunt.

Yes, me too. i appreciated the anaesthetist consultation when he looked at my questionnaire, threw his head back & & said "anybody who would choose to put you under with general anaesthetic is looking for another career!"

Viking had several vertebrae operated on, top of neck jobbies, way back (after he managed to drive a jeep off a cliff) & was told no way would he ever walk again. 6 months flat on back in hospital, another 6 in wheelchair, another 6 on sticks. But now he is fine apart from the odd twinge, which is no more than normal age related stuff; i will ask him for details; this will be fun, get your French dictionary ready!

Sorry the experimantal stuff didn't work out for being a guinea pig; the fact it didn't work out adds to knowledge of course, so maybe the next protocol might.



zdt

I am amzed by strength Abbi. takes hat off as honore to know you!

It bothers me that the only thing I can do for either of you is drop by, make my presence known, and make pointless inarticulate gestures of support and so forth.

*makes pointless inarticulate gestures*

I wonder if the artificial discs would be filled with silicone type stuff,as in breast implants.For all that my problems are top of spine mainly i don't have a great deal of knowledge about surgery....i refused many years ago,when the procedure was explained to me!!!
I know you will keep trying until the right thing comes along.....then you will be less tired!

I am sorry the new treatments didn't work as planned. You deserve the best, hang on in there and you will get it one day, thats what I hope for you.

<<*makes pointless inarticulate gestures*>>

I don't think the time taken to express any type of gesture is pointless.



It can be frustrating to find words of comfort or encouragement without sounding lame and samey...but regardless, that you take the time to say something, anything at all is appreciated I'm sure

I think that's been said before too, lots of times....

Abbi, I too am disapointed for you that the treatments didn't work, well done for trying them tho, and with finding something that will alter your quality of life and movement.

I am so glad that you have a computer with which to communicate with and enjoy the world at your finger tips.

in the 1950's I was the guinea pig for curvature of the spine treatment in Britain, try it on the prof, if it works others benefit, if it failsback to drawing board. My most sincere wishes are, that anything they do Abbi, is for the plus and therefore beneficial to you.

my strength is aways with you, even from this range

Terri I doubt V has the newest information if it was "way back"
I appreciate the thought. You two have problems with two languages, I would have more!

Back surgery has not changed much over the years.
I am familiar with losing the ability to walk and being told I may stay that way. I have regained a few precious steps several times through the years. I want to hang onto them.

I have had laminectomies, discectomies and spinal fusions in several areas from the top to the bottom.

My spinal canal is too small for my spinal cord, no way to change that.
The collapsed veretebrae are past repair, no way to change that.
The curvatures will not change for the better.
It's as if my curves are backwards and slightly sideways - *Prof understands this.

A few areas might be helped by a cushion (artifical disc)while there is still room.
Tic. Toc.

************
Ivan -
Showing up for life counts
Some say it's half the battle , some days it IS the battle!
Showing up on peoples threads certainly counts
So thanks Ivan , Terri ,Kaz , MV and Manimal and any others popping up.

we can always hire ourselves out as book ends Abbi

I truly understand

smurfles
Having to sit most of the time, wearing my neck brace like you.

Cannot handle the neck-head pain from hell so the lower parts are suffering from the help my neck has. I was just told the lightning jump started the auto-immune destruction, doubling the rate to my entire spine.
They use my films for teaching.
Most assume I am not walking and well over 80 years of age.

I know far more vibrant 80 and 90 year olds - a big Bravo for them!
I was so darn sure I would be one of them.
Life is full of surprises.
Ok then, ready for a good one now!

Who could *not love having us as bookends Manimal!

just to be near you, would be my reward(and hubby of course)

Hi Abbi

Sorry - haven't been keeping up to date with you lately - been a bit preoccupied, myself lately - my op has been brought forward a week (this Monday) and I'm a bit jittery.

I seem to remember reading an artical whereby in the GB at least, they've found some way of ...well, as I understand it, injecting directly into the vertibrae a form of glass(silcon?) into porous or degenerative bone..

it reconstructs the vertibrae - I'm not sure if some form of surgury as been investigated as regards replacing discs/cuhioning, but for what it's worth, I've copied down your situation and will show it to my consultant/surgeon bod when I see him on Monday. He might know.

In the meantime, I'll have a bit of a search on the PC. If it looks like it could be helpful I'll e mail or post it here.

- He's a great bloke; always listens, always answers the questions he can straightaway, and invariably can at least guide patients in the general direction of finding out stuff if he doesn't know himself.



Like everyone else here, I'm thinking of you, offering lamentably silent support in my case alone (- you lot are better at "flowery" than me) and hoping all goes well for you

Just this second discussed this with V (actually, amazing as it may seem; we don't really have massive language problems; most medical terms are the same & you can do a hell of a lot with mime! Plus i suspect my frogsqueak is actually now better than i realise)

He reckons his experience isn't very relevant since it was in 1973 & things have moved on massively since then. He didn't have surgery, they just left the vertebrae to fuse (two) & it seems to have worked; he gets the odd twinge, but nothing more.

But he was young when it happened (19)so presumably being youthful & very fit would help the process.

If you go for this, is there any way it can make the situation worse (other than anaesthetic risks)?

zdt

Hi Evande Cake
OH thanks so much!
Reliable links would be good ,success rates for specific uses on specific cases. I realise individuals differ.

I have heard the bone glue can fill in some of the fractures in the collapsed vertebrae They talked about use for some neck and thoracic fusions too. I hoped it could be controlled a bit better than the cadaver bone. Certainly sounds less invasive.

Thanks for reminding me of that product!
It is different from the artificial disc but another possible option for some problems. I will ask about too

The US is always behind Europe in approving new medications and procedures. Sometimes that is a plus and sometimes not.

Hi Abbi

I can finally log onto your entry without getting a "server too busy" error message.

The mind boggles at the pain and discomfort you must be feeling at the best of times. My spinal injury was infinitessimal compared to what you're going through... but some damaged soft tissue was replaced with a rubber bushing, and it seems to have done the trick.

Problem with fusing bones together is it affects mobility: fusing two vertebrae together only reduces it a little bit, but replacing them all!

I will continue to hope that you will find an effective treatment soon. In the meantime, I wish you as many steps and smiles as are possible.

Thank you for counting me as one of your friends, and for giving me the opportunity to call you Friend as well.

Next Monday is your surgery Evande Cake?
Good Luck and I will be anxious to hear about your success and recovery. Goodness gracious no need to spend time on my stuff right now! Do you want to speak about it> Feel free to or not - what ever is best for you.

Later it will be appreciated as much - things are not moving so quickly here. Barring any acute problems my situation will take weeks to months for pro-active interventions. Plus I have to be on the patch or not smoking for 6 weeks before

I hesitate to say things unless I am getting emotionally backed-up. I know many people have problems and they are very individual situations. The nervous system and its many problems are complicated.
I do not want to cause additional angst for others.

You don't cause me emotional angst Abbi - honest..I was rather touched!

And truely, if I wasn't feeling up to talking about it, I wouldn't have mentioned it; feel a bit guache mentioning it atall actually - this is *your* bit of space, about *you* after all; my dramas are me own... if you see what I mean!

Yep - Monday 16th is my surgury; I have to be at the hospital at 8am godhelp me I too will be on the patch as twere for the day (don't think I'd be able to manage without my fix of Nick o Teen...and I'm incrediably comforted by the fact that you, too, smoke

I'm not having a GA; not that I have any probs with it anyway - I'm disgustingly robust (apart from the spine) and within 10 minutes of actually waking up sneak meals off the meals on wheels or at the very least drink water long long before I'm supposed to! If I had a spine and immune system I could rely on I'd call meself Superwowoman and be damned with false modesty!

TECHNICALLY it's a no-anesthetic jobbie - just 60 or so injection of non fattening steroids and pain killer injected into the sites of pain (lumber and thoracic)..although I suspect I'll be getting my neck attended to as well, since the arthritus is creeping up the neck and around the back of the head lately... I can empathise with your headaches, although mine in comparison is a drop in the ocean compared with yours, I'd say;


I have a friend with 5 discs with little padding and I see the pain she's in;

Then I think of you (and mention you in passing) and S's problems, despite her agony, seem to form a queue behind yours... if you see what I mean. She often asks about you, too - and she's not ventured onto this site, yet, either. You've more friends than you'd know, I think.

I'm going to be sedated, though... good old valium.

This, I think, its purely a self preservation instinct on the part of the Consultant; last time, despite the fact that I bear him no ill will personally, I near as kicked him in a rather vulnerable area because the last (unanthetatised) op hurt me sooo much I reverted to the "fight" part of the psyche, rather than the "flight" part and ... well, I don't need to draw a picture, really.

Just as well I have short legs and he had fast reflexes!

Hopefully (and this is where the conundrum lies) this will be the first of many "every 4 month" ops that will control my pain to the extent whereby I gain enough mobility to get going again; with renewed energy levels, as I'm not fighting the pain all the time, which we both know, is so very exhausting, I can get exercising properly again (swimming and aqua physio) and if I'm lucky, with a bit of help from Pain Relief - again, being reviewed properly, fianlly - after 3 years - will be able to Get A Life again; better mobility, less social isolation, and maybe, even, a job of sorts.

And I'll be able to chase my lads and let them hug me properly without screeching! They're big lads, too - both towering over me.

I'll also be able to get onto the second step of the staircase and stare em in the eye and nag them properly for the first time in ages. I keep thinking how very good it will be to be able to be hugged again, physically, without me wincing. By my lads. possibly by others. You never know what fate has in store, do you?

And that's where I come unstuck, you see.

I don't want to hope this'll work.

I hoped so much last time ... and it didn't work atall; infact, the denervation made everything an awful lot worse. It caused an enormous amount of extra Nerve Damage - both Sciatic Nerves are now shot for example; the nerves from my spine that control the hands and wrists are rather erratic on occaisions - I've worn more mugs of tea than I've managed to drink lately - which is, a bit of a bugger.

I knew there was a risk it may not work.

And there was one in a thousand chance of it making things even worse;

So I didn't go in blind. It was a calculated risk, and I took it gladly. I'd have walked on broken glass for a surcease to the pain.

But I got my hopes up.

This time..... yes, of course I hope it'll control the pain. I know it won't cure me, but there is a chance and a hope that it might bring the pain down to a tolerable level

Define tolerable!!!

I can't envisage living life in so much pain - I have a rough idea of what you're going through....what I admire is how you've managed to continue to be so optimistic for so very long. It's a triumph of human nature over adversity

And I wonder if I could be so tolerent and balanced for so very long.

Equally, I can't remember what it was like to NOT be in pain - I've ached for most of my life (Arthritus) and I've hurt since I was 19, when the spine began to degenerate. Pain and discomfort have been a fair constant with me

But to be free of it - if only a little?

Do you know something?

That scares me almost as much as the notion that this op might not work either.

It'll be such a strange sort of normality to learn to live with, bearable pain.... I wonder if I'd be able to cope with it?

I have wittered on far too long Abbi and monoploilsed your thread.

And this was supposed to be a cheery message saying I really don't want you to be anxious about me, too! Not that I don't appreciate your interest; I do. But I don't want anyone to waste energy *worrying*

I'll be in touch with Smurf, if not on this thread, at the least by phone; Sal, can I ask you to keep Abbi up to date with me if I don't so's she won't worry, please?

Worry is the last thing you need, Abbi!

Keep smiling... and don't let anything get you down

Ev x

Evadne, my friend also has to have a injection into his lower spine approx every 3 month, I can't remember the complaint,but 60! I wish you well and its also a pleasure to meet you