Hi

[sandrawoodford]

Hi, i am new to this forum and about to browse through, i was diagnosed with Arnold Chiari Malformation when i was 23 (i am now 35) had the first operation when i was 25, went on to have 3 respiratory arrests and was then taken for another operation to drill burr holes to releive pressure and they also did a review of the foramen magnum while they were there.
I am still to this day getting quite severe headaches (not on the frequency that i did before the ops) and have other symptoms like a sharp pain in my head when i sneeze or cough and if i yawn or stretch i feel light headed, my vision goes all hazy and i feel like i might pass out.
I am hoping to understand a bit more about Arnold Chiari and hopefully obtain some answers to why i might still be feeling this way.

Thanks for taking the time to read this.

Sandra X

[sandrawoodford]

Hi all,

Thanks for the advice and comments and for the warm welcome,

I did check out my Neurosurgeon and as far as i can tell (me myself not being a proffessional either) he was actually an exceptional surgeon, i say was because i was discharged from his list a long time ago after being fed up of feeling like a medical trial.

I will however be seeing my own doctor soon and will be asking him to review my situation.

The other thing that i have been experiencing is depression and at times it has been quite severe, i am taking an anti depressant and that seems to be helping although at times i do feel hopeless and very sorry for myself.

On the other hand, in an effort to try and help myself i have just applied to headway which is a charity that deals with people with aquired head injuries so that i can do some volunteer work and hopefully understand a bit more about the brain and the way that it works.

I will mention the things that you have mentioned to the doctor when i see him so thanks for that.

Wish you all well

Sandra XX

[selmaS]

HI Sandra and welcome to the Chiari forum.

I have been giving what u describe a bit of thought and to me, and I am not a medical professional, but it sounds like u may have developed PTC which is pusedotumor cerebri which is increased intercranial pressure from the over production of CSF......most times a shunt is surgically implanted to help divert the excess to the stomach.

I feel u need another opinion from a true chiari specialist to see what other chiari related conditions u may have as Shannon and Ray have also mentioned.

And also like Shanoon said, there is no cure for Chairi , only treatments.And we will all respond to the treatments differently.

I pray u find a dr that can give u some relief.
"selma"

[rod44]

Hi Sandra and welcome. Shannon has raised a few important questions. It is important to keep following up with your NS as the surgery is not a cure. A full spinal MRI scan would be important as well to rule out other related conditions. I know the NHS is stretched for money and you may unfortunately have a bit of a fight on your hands but it is important to get some answers.....
From my own experience most doctors don't have much experience of this condition so research the NS you use and make sure they have good experience of Chiari...

Ray

[shanmomof3]

Hi and welcome to the forum! I'm sorry your still having problems :( but the first thing to understand about chiari is that there is no "cure" the surgery only helps relieve some of the symptoms and progression. Also, were you checked for any of the associated problems and disorders such as ... Tethered cord, a syrinx, DDD, or EDS? This is a great group of caring and supportive people! I hope find the answers and support you seek here :)Shannon