help required please

[Guest guest]

I am sending this again, because I am not sure if its getting out.

Hello every one:

hope you are all has well has can be, well I have come back to our help group,

with a lot to tell, and questions I hope some of you can help me with.

I will give a brief reintroduction to my plight, for the last 20 years I have

suffered

with at least 65 of the symptoms on the arnold chiari symptoms list, but my

familys dr had no idea, nor I what was wrong with me, this led to nuaral hearing

loss in both ears, poor vision, lack of power in my limbs, blood sugar drops,

dizzyness, rock hard muscles, pin and needles any where, pain in both eyes,

walking has if drunk, severe headaches, vomiting, headaches when bending, not

able to tolerate light, dizzy in badly lit areas, intermittent memory loss, loss

of saliva glands ( can not produce saliva any more ), and like many of you I

could fill at least 2 more pages with more symptoms but I wont.

So in 1996 I had a ct scan, this was reported has my brains ventrical were

inlarged, no action taken by anyone at that time, in 1998 I was then given a mri

of my brain, this was wrongly reported has normal in every way, so I continued

to suffer ( to this day ) I then requested a copy of my medical records in July

of 1999, in these I found the reports of the ct scan of 1996, and the mri report

of 1998, both had been reported has normal to my family dr, but the ct of 1996

reported that my brains ventricals were large, and the mri of 1998 reported that

I had arnold chiari malformation , because my tonsils were protruding through

the foreman magnum, so I took this to my gp, he got me a new nsc, I waited 7

months to see what he made of the past 2 scans, he agreed there was a herniation

but would not tell me anything, I was told I was to have a csr flow study

carried out soon.

Well. while waiting for this study, I sent all my med/records and scans to one

of your well respected top drs in the USA, he wrote back and confirmed a

herniation of 3 to 4 mm and said that looking at my med/records that all my

problems were because of this herniation, well I lossed faith in my nsc,

especially has because he made me wait a further 16 months for the csf flow

study, I had that on the 20th November 2000, 6 weeks later he wrote me a 7 line

letter below is a small bit of it.

Now my ventricals are not large, and he thinks that the craniovertbral canal is

within normal limits, but says that theres a " exceptional appearance of change

in the Aqueduct of Sylvius " and that an operation would subject me inconvenience

,discomfort and risk!!!

I am very worried, first large ventricals in 1996, which were not large in 1998

or 2000, intermittent blockage of the aqueduct sylvius is whats causing that I

think because its narrow in any case, then acm 1 confirmed by 2 radiologists,

and 1 of your usa drs, and now I have this problem with the aqueduct of sylvius.

Questions what the hell could be going on here

:: what relation with herniation could this have

:: what could be done to help me

:: what medications may help

any thing you guys can help me with will be of great help, my attorny is going

to get me another nsc, with a view to at least 15 years of medical neglegents, I

will give him any thing you write regarding my medical problems, so has to help

him to understand whats going on in side my head,I can no longer stand yet

another full year of suffering with no help or medications in the last 20 years,

so please help me.

from michael in England.