New to this group. Wanted to introduce myself

[Guest guest]

Hi I'm new to this group. I was diagnosed with chiari 1 and syrinx

about 5 years ago following a car accident which left me with lots of

problems with my back and neck. Following a routine MRI to try and

find out why the Chiari and syrinx were found. I was told at the time

that these conditions were not attrituable to the symptoms I was

having with my back and neck at the time but they were significant

enough to warrant annual check ups. My life has not been the same

since I had the car accident.

My main problems started 2 years ago, when suddenly out of the blue I

suffered a very strange turn. I started to go dizzy, then found out

my co-ordination was gone as I couldn't use my phone, was unable to

stand up or walk. When my husband managed to get me to my feet to

take me to hospital, apparently I was walking like Mr Softy from the

Soft Mints advert. I felt as though I had lead boots on. I was also

very cold and shivering even though my body was warm to the touch,

and I was having involuntary jerking of my arms. By the time I was

seen by a Dr at the hospital the symptoms were subsiding and they

just told me that I'd had a funny turn.

The following day I phoned my neurosurgeons secretary and informed

her of the events of the previous night and then a week later I

received a letter form the neurosurgeon stating that he felt these

symptoms were related to the chiari and that it would be sensible to

consider surgery which totally freaked me out. When I went to see him

a few weeks later he then told me that he didn't feel the symptoms

were totally attributable to the chiari and that surgery was not

recommended. He then referred me to a neurologist who diagnosed

migraine and muscle tension headaches and referred me to a physio.

Upon seeing the physio I was informed that the symptoms I was

describing were related to the chiari and that there was nothing that

the physio would do to help.

Over the last two years I have only had a period of 4/5 months where

I was able to get on with my life and ignore the chiari. I joined the

gym and was going every other day to the gym doing an hours workout

each time which consisted of running on the treadmill, x trainer,

exercise bike, and rower plus an assortment of different weight

routines which were advised by the gym trainers. Since April last

year we started to go downhill steadily until we reached a point in

November where I couldn't carry on any more with anything. I've since

been off work and not able to do very much without causing an onset

of symptoms which mainly consist of severe headaches where the only

way I can get any relief is to go to bed for several hours, neck and

shoulder pain, aching arms (most days I am unable to brush my teeth

without my arms feeling as though I've done a ten minute workout with

weights), tingling in hands and feet, buzzing sensation, floaters in

eyes, nausea, extreme fatigue, clumsiness etc. I have an appointment

to see a chiari specialist neurosurgeon on 12th of this month. I have

adjusted my life considerably over the last few months which has

helped but I'm still dealing with the symptoms. I can't go shopping

alone, I can't do much housework, I can't drive very far. I feel as

though my quality of life has been taken away as I can no longer do

any of the things I like doing without making myself feel ill

afterwards.

Well I do apologize for this being such a lengthy posting, but that

is the complexity of my life with chiari. If anyone has any comments

or suggestions which may help then please please let me know. I do

know that there are people out there with far worse symptoms than my

own and I really do feel for you if you are one of these people. It

is this thought that helps get me through the day and stops me

feeling sorry for myself.

Hope you are all having as pain free a day as possible.

Take care one and all. God Bless.

Sue (Chiari sufferer in the UK)