fibromyalgia

March 4, 2003

<< I thought i had read last week a post that mentioned this, im wondering

if this is something many of us have been dx with after the surgery and

still having pain?

I think MOST of us experience some pain and limmitations the first six weeks

- three months timeframe -- but medications are usually able to aleviate most

of it to a great degree too . It's pretty common to use some pain medication

AND muscle relaxants if shoulders or neck spasms are a problem as well .

At about three months - if things are still troublesome - then referal to a

physical therapsit with WARM water therapy seems the best approach to working

out tight or weakened muscles safely and working on issues like walking

/ballance / and good normal strenght endurance ect . AFter a typical two or

three months of water therapy the PT may work with you on what GYM or

exercise equipment is safe for you - AND on how to SAFELY do stretching and

strenght exercises AND Setting LIMMITS that will keep you from causing things

to flare up .

" The neuro i seen said my MRI looks fine, although i

am going down hill!! All-so with Chiari and sm how much does contrast to

a MRI help detect any problems that may still be occuring? "

When someone has SM that has caused some spinal cord dammage - then it's

often a larger - more ongoing process to find what will help most . A

physiatrist ( PM And R ) specialist in brain and spinal cord rehab medicine

is often our BEST ave . of a doctor to offer treatment of various sorts of

therapys /accessments /recomendations and they frequently do primary pain

mannagment as well - knowing the medications most often useful too .

SM issues are a bit different than those folks who have JUST CHIARI may

experience -- and should be guided on a CASE by CASE basis -- if the SM has

NOT colapsed your limmits may well be affected to try and prevent any further

dammage from occuring . The location of the SM / how wide it is / how close

to the brainstem ect would all affect the limmitations you might have . --

this is stuff BEST guided by a physiatrist or neurologist inbetween

neurosurgical visits to keep and eye on it ect .

MRI " s with contrast better demonstrate SM and show clearer details ect . --

with chiari the contrast isn't needed generally but may be used to look at

other issues that can also be present in the brain ( it is possible to have

more than one condition at one time- so it may be needed /useful in looking

for other problems .

If your neurosurgeon feels that thing LOOK good but your getting worse ...I'd

start with these issues . What does your SM look like now - is it colapsing

or colapsed ? ( and was it severe enough the neurosurgeon feels it may have

left dammage in it's wake ? ) ...has the neurosurgeon used CINE MRI to make

sure that internal scaring isn't causing continued blockage of csf ? --(

scaring doesn't show up well on regular MRI's but cine can demonstrate

possible blockage that they can GUESS might be from scaring ) . Have you had

a lumbar puncture to measure opening presure and see if your csf presure is

still high ?

if you've had all this testing without clear answers -- then I'd consider

seeking another opinion from a chiari /sm specialist if possible too . I'd

want a six months post op period of accessment / perhaps therapy's ect ...but

if thats past I'd say it's time to find someone with GREAT chiari experience

in evaluating post op " failure " -- which is only done by a FEW neurosurgeons

who specialise in acm /sm -- most often Dr's Bolognese /Milhorat in NY -- Dr

Green at Miami Instute to cure Paralysis - Dr Batzdorf at UCLA are the three

I'm aware off with lots of experience .

The other ave . I can think off now would be seeking a PM and R doctor with a

grasp on chiari . Dr Milhorat sugested to me at a confrence that these

specialist PM and R doctors can often be found at one of the TBI /SCI federal

model rehab centers . ( TBI = tramatic brain injury and SCI is spinal cord

injury . ) They are scattered around the US with each serving a geographic

area - so checking where folks who suffer broken neck/back type injuries are

sent will give you the location of a center -- or look for Federal Model TBI

/SCI listings on the web . ( I don't have them bookmarked but have found them

for others in the past through the web site for the Feds / dept of

rehabiitation and can chanse them for you if you don't find it easily too ) .

When I followed Dr M's guidance I called our regional TBI /SCI center and

explained I had congenital chiari ect and needed a physiatrist who was

familuar with it . It took them a couple days to check with those on staff

then tell me who would be best to see . AT THAT POINT I could ask for formal

referal through either my primary care or neurosurgeon so that I did show

REFERAL on the computer - and that DOES make a differance in programs and

services providing transportation to the center ect if you need that

assistance . I wouldn't assume that self referal is a good loup to follow -

it can bite you later ( it has me in another instance -- LOL -- live and

learn then sharing our experience can help lots in avoiding these pitfalls

...tehehe .

So I hope this is helpful in some way ...if your getting worse and the nsg

seems stuck thinking things LOOK good ...I'd be pushing for another opinion

or a physiatrists care or both .

Sending a hug and encouragment too ...

in Paradise

March 4, 2003