Re: Need Input

[Guest guest]

<< I called an appt with my NSG because of some returning symtoms.MRI showed

lowlying tonsils,Syrinx smaller but has elongated.Same from 6mo`s ago

He never did a full neuro exam,he stated water ski or whatever I like and

released me back to my family DR,

I feel like he dumped me.He is also a DR. from the old school 5mm or less no

symtom`s.

Red flags are going up,Am I overeacting. >>

Dot ..I don't think your overreacting to go expecting both a full evaluation

of changes including the full neuro testing rotine , and to leave with ways

to address the symptoms that trouble you to explore ..

Then to leaving with no explaination of the changes in your syrinx ...a

sugestion no limmitations are needed , including that you can particpate in

high impact sports ....no guidance on how to avoid further worsening ...it

doesn't seem to me , that you got what you need , at all .

Geepers , ok , ....why the symptoms increase ?

Why the syrinx change in length ? By smaller he means narrow in width ? Slit

like syrinx are better than wide , and some doctors feel less likely to cause

huge dammage ...but change in length is troublesome .

whats best to treat the exisiting problems , and find stabilisation if

possible ?

both tonsils clearly occluding the csf path ....and changes in a syrinx , are

red flags to the asap doctors that they watch for in evaluating the need for

interventions .

This clearly doesnt add up to a modern understanding of sm well ...nor acm .

What I'd consider doing , is sending your MRI's to Dr Heiss or Oldfield at

the National Insutute for Health for evaluation and possibly going for

treatment there in the sm study . All care there is free , so insurance

coverage isnt an issue at all . They are able to evaluate the MRIS pretty

quickly in most cases ...on average within a month ( based on my own , and

other list members experience ) .

If they feel you fit the study crteria and they can help ...they will offer

to have you come on back , and can help with both transportation and motel

costs ect . If they feal that they can't help ...you can ask for , and they

will provide sugestions who to see , or where to go and what may help ect .

It will give you a better idea of whats up ...with an impartial opinion ,

from neurosurgeons currently at the " cutting edge " of acm /sm knowledge .

they prefer a doctor ( any doctor including your primary care doc ) write a

short letter of referal ...but perhaps 50 % of the folks they treat , are

self refered .

Dr Heiss was a presenter at the asap confrence outside portland 5 years ago

.....there is an asap tape of his presentation on using CINE mri in studing

what causes sm ....it inlcudes examples of MRIS < xrays , charts and graphs

ect ....an excelent way to gain his understanding then ...he has published a

couple papers since then too , that you could track copies off .

you'll find info linked to the nih /sm study at the wacma offsite pages ...or

copy and paste the entire link below into your browser ...its long , so check

for any spaces the wrap around line effect may create .

http://clinicaltrials.gov/ct/gui/c/a1b/screen/ResultScreen/action/GetStudy?ord

er=1 & xml_file_id=xmlfiles%2FNCT00011245.xml%40csdb & JServSessionIdzone_ct=hwymf

h0ho1

if you have trouble , go to the http://cinicaltrials.gov address and enter

syringomyelia as the search term . it will be the first study of three listed

..

best wishes ...hope that helps ....do follow that moto of Dr M ...and " stay

out of harms way ! " ....use common sense please , don't start water sking

....seek better guidance .

sarah in paradise