Scared newbie

[leonna20x]

Hello all,

Im a 20yr old female from the uk,and have been having bad headachs,dizzyness*altho i suffer from low blood pressure and an odd heart beat so im not sure if thats a symptom*,different sized pupils at times,ringing in ears,blurry eyes,fullness in the ears etc etc anyway i had an mri scan after years of suffering and i was so sure i had a brain tumor..turns out i dont have a tumor, but my neuro thinks i have Arnold Chiari Malformation..he is having a meeting with other specialists as he isnt sure how bad it is...I am TERRIFIED! As ive heard the only way to help it is surgery..Erm,ive been in hospital once,it wasnt pleasent,im now scared of hospitals,plus im agraphobic.

Anyway,i was just wondering how you lot got diagnoised? what symptoms you had and if youve had surgery ??

Thank you all
***
Leonna

[Jess]

I was diagnosed in March and had Surgery the next as it had gotten pretty bad. The surgery itself was fine because you are asleep the whole time. Recovery in the hospital is a little rough for the first few days, but make sure to keep on top of pain medication and muscle relaxants. I had surgery because I had really bad symptoms, like choking on food, numbness in hands and feet, bad headaches and blurry vision. If a person doesn't have symptoms that are severe and interferring with daily life then surgery is not always the answer. I just turned 25 in May and have been out of work recovering for the last couple of months. I feel so much better now, after having surgery. Let me know if you have any more questions and I will do my best to answer them.

[butterflyblooms]

I am having surgery in 10 days and completely understand your fear of the unknown. But if your NS decides surgery is the best solution then make sure you find someone that is a expert in Chiari surgery.

But honestly don't be scared of the diagnosis because now you have a reason for your symptoms and that is half the battle. Now, You can be treated and things will start getting better.

Take Care OF YOU
BB

[leonna20x]

Thanks for the replys :o) Butterfly good luck with the surgery,i will be thinking of you!!

Im just wondering, can you die from this illness?? :( And also, how risky is surgery?

I am terrified!! as i have low blood pressure and an odd heart beat,if i did have surgery,i would probley end up dying..Sorry for being so depressing but im genuinely worried.

Leonna ***

[Rozia]

Dont know if I gave you Caz's website , but look at it . She is in the UK and may be able to help you.

http://www.freewebs.com/syringomyeliachiarimal/pregnancywithsmcm.htm

[pringlec]

I had surgery two months after I was diagnosed, primarily because I had a very large syrnx (fluid cavity in spinal cord) that was causing damage. I suffered with many symptoms, the most debilitating being migraines, black outs, dizziness, numbness in limbs, and severe pain behind my eyes. I started having migraines eight years prior to my diagnosis (about age 24). The other symptoms two years prior. Although I still have some problems following the surgery, it was definately worth the risk for me. I wish you all the best.

[Rozia]

No you cant die from this .

Is chiari fatal?

There are no official numbers about mortality in CMI patients. The main reason is that most of the doctors see just small numbers of these patients.

The most recurrent pattern in Chiari deaths is the association of severe sleep apnea with extremely high doses of opiates (pain medications). The tolerance for the opiates leads these patients to enormous doses of these drugs, with a narrow margin between therapeutic effect and respiratory depression. (translated in English, there is a small difference between the dose that helps you and the dose that decreases your breathing). The drug-induced respiratory depression associated with sleep apnea is a dangerous combination, and can lead to respiratory arrest. Practically, it is a death by drug overdose in patients with decreased respiratory drive. Seeing from the other angle, it is not the Chiari that kills you, but the circumstances around it.

As a broad statement, and on the grounds of our large database, death due to Chiari is a rare instance.

Paolo Bolognese, MD

[cadensnana]

From all your symptoms,it sounds like you need surgery.It is scary but you will feel much better afterwards.I was diagnosed with a syrinx first and had a shunt put in.That was in 93.A few years later,headaches got worse,I was dropping things and having pain in arms and hands.I had the decompression in 2003.Recovery for me was slow.The worst part were the muscle spasms in my neck.With meds pain is controlled.
somebody wrote to make sure Neurosurgeon has done this surgery alot.Research and ask lots of questions.I'll be praying for you.
Andrea

[amanda20july]

Hi Leonna,

I've just been diagnosed, been diagnosed and am in the uk too!
I was being investigated to find a cause for unexplained tiredness and weight loss. Had MRI which showed ACM. Waiting to see neuro surgeon to see what next step is.
You are not alone
x