help

[danielleo9]

hi my name is danielle, i am a 24 year old mother too 2 children and in need ov help, last year i woz taken to hostpital cos i woz suffering severe pain in my head and woz showing sighns ov stroke after a CT and 2 MRI they said my head woz slightly too small for my brain (plz tell me the medical name) as a result i suffer from hemeplegic migraines once a month and also have exrusiating daily migraine, I cannot tolerate sound and light, i saw a neurosugon who adviced me to take 50mg ov topiramate and dihydrocodeine+paracetamol 20/500mg (they do not work) i have come of the topiramate as it only made me loose alot ov weight and made me ill, he also sugested i have regular spinal ingections for pain relif and regular LP to relive the pressure in my brain (i am not getting this treatment). I am in constant pain and not getting anyware is there anything u can sugest i do/try please. thank you
yours sinserley
danielle
                                        

[danielleo9]

thank you so much you have helped me loads x

[selmaS]

Danielle,

if u r sure u have intercranial hypertension and chiari....u need a chiari dr.I just sent a list of info to another person in the UK....I will PM it to u as soon as I dig it from my files.

I believe u can get info and support from our chiari forum here on medhelp.Please stop in.

As soon as u have ur reports, post them in the chiari forum......u will get some suggestions.Number one is u MUST have a chiari specialist as a dr or u will get more of the same of what u have been getting.....nothing that works..and they don't see chiari as the cause of the symptoms.


Good luck....I look forward ro seeing u on the chiari boards!!

"selma"

[danielleo9]

hi i am going to request my notes hopefully on monday i do know that in my report it said that i suffer all the symptoms and sighns ov chiari malformation they also said i had a very wide opening in the base ov my scull i also saw the word hydromyelia and i do have intercrainal hypertention thay said i had a  gathering ov spinal fluid also in the base ov my neck my doctors just keep throwing meds at me that dont work and i cant take it anymore if i do manage to get my notes and MRI scans wot would be my next step cos iv been discharged by my neurosurgen he gave his advise to the docs and handed me over to them and thank u so much for replying

[selmaS]

Hi Danielle,

Sounds like u r describing chiari malformation.....do u have a copy of ur MRI and the report?...if not u can request it.

We do have a chiari forum here on mdehelp, if u would like to talk with other's with the condition.

Y did they suggest the LP, do u have intercranial hypertension?(too much CSF fluid)

I really think u need to get ur report and see exactly what u have!

Good luck
"selma"