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
xxx
Leonna

[socialdkitty]

Hi Leonna.. I'm 25 and from the US. I am having the same problems as you.. I havent been formerly diagnosed with Chiari yet, but I do have a syrinx in my spinal cord. Im pretty sure I have chiari too though because I have all the symptoms - Im waiting to hear back from the doctor about it right now. It is scary and I don't really have any info or anything to offer since I'm quite new at this myself, but if you ever need someone to talk to let me know!

[Leonna20x]

Hi Leonna.. I'm 25 and from the US. I am having the same problems as you.. I havent been formerly diagnosed with Chiari yet, but I do have a syrinx in my spinal cord. Im pretty sure I have chiari too though because I have all the symptoms - Im waiting to hear back from the doctor about it right now. It is scary and I don't really have any info or anything to offer since I'm quite new at this myself, but if you ever need someone to talk to let me know!

atleast i know im not the only one! I am happy in a way, as i was told none stop by a doctor that i just have sinus issues,i knew it was something more tho! But...Then im terrified as if i do have it,i will probley need surgery.

how are you dealing with it??
I try to forget about it, but in the back of my mind im thinking 'im going to have to have surgery and i will probley die during the operation'.. sorry for sounding morbid...but i have such low blood pressure and my heart rate is sometimes really low, so i think there is even more risk? Im not sure.

[socialdkitty]

Yeah, everyone I know says mine sounds like a sinus issue too, so I FINALLY went to a sinus specialist and asked if sinus could cause pain in the back of my head like I'm having and he said no absolutely not... like you though, I knew it was way more than that.
As for dealing with it, I try to forget about it, but like you I'm constantly worrying and thinking about what might happen if I have to have surgery.
Do you happen to have myspace? If so add me there because Im on there way more than I am here and I'd love to talk, hear more about your symptoms, etc.
my myspace account is www.myspace.com/elanathaxton

[AFleming05]

Hi Leonna (btw I love your name)

I am sorry for all the pain you have suffered and pray that resolution is at your doorstep.

I don't know where in the UK you are located. I have a friend who went to the National Hospital of Neurology and Neurosurgery. She's doing well and hadn't mentioned a bad experience there. Perhaps you can research the facility if you are close and even if you are not it could be worth further examination.

Please keep us posted. You'll be in our prayers.

Be kind to yourself,
Mandy

[Gracie Rose]

Hi Leonna,

Love that name too, it was my grandmothers. I have had all your symptoms and I had two surgeries last summer and did well. Was it hard? Yes, any surgery is. In the US we have an awesome institute just for this condition so I wasn't worried about death since they have a high success rate. Maybe they could give you a good referral there in the UK.

You'll love this site because everyone has lots of symptoms and there are things to help, and just get some encouragement. Out of our 8 children 5 have Chiari's and the others have the symptoms too. All 8 have Ehlers-Danlos with the accompanying autonomic issues of heart rate problems, BP problems, nausea etc. With your autonomic issues, any good anesthesiologist will be prepared for fluctuations in your vital signs.

We have been dealing with ACM for years, and it gets a bit easier once you get to know the terminology and get familiar with your condition. The new and unknown can make you just crazy!!!!

Ask lots of questions here, there are many, many folks to answer you.

Lisa in WA,USA

[MrChiari]

To answer a few of your questions..

I was diagnosed on accident. I was in a car accident and I complained of a headache. I got an MRI and came back with the Chiari. Then I got more MRI's of the spine.

My symptoms are the headache mostly. I have other symptoms but I think they are related to something else..

I was diagnosed 5 years ago and didnt have any surgery or anything. I'm too worried that I will come out of it with problems I never had, or scared that my symptoms will get worse as time goes by rather then keeping thinks the way they came from the factory

[Leonna20x]

Thank you for all your lovely replys! it is good to know that after suffering from so many symptoms,i now may have a name for what i am going through. but it is so scary aswell! i do try to relax and keep my mind on other thing's , But it keeps poping back in my head!! Like Oh my god,im going to have to surgery etc etc.

Anyway,i will let you all know what happens once i hear anything!

xXx I hope you are all ok xXx

[Gracie Rose]

Hi again,

I reread your post and relized I didn't answer your question. I was diagnosed after a lifetime of symptoms. Our son was diagnosed with ACM and a syrinx. It's a long story but that led to mine and most of our children's diagnosis'.

You can learn to live with some of your symptoms but it takes adjusting activity. Years ago my doctor sent me to a physical therapist to deal with some of the headache issues. Also, for other pain we didn't realize was EDS. He really taught me strategies to deal with it all since there was no name for it all.

As the years went by the neurological problems were increasing. I always knew something was wrong but felt I just had to deal with it after having a headache work-up 20 years ago and being told it was all in my head....HA!! IT WAS after all !!! However, that visit to the doctor made me very gun-shy and I said I would never ever say I had a headache again.

I am NOT saying you can make all symptoms disappear, or that there aren't folks out there that are in such bad shape coping with symptoms they need surgery now. But I am saying that depending on where you are in this journey it may be years before you have to have surgical intervention. For some they never need surgery.

Chiari doesn't have to be all bad , you'll see that on the boards. There is a lot to be learned when you suffer. A person with a chronic condition like ours develops a keen compassion for others. There are blessings under this diagnosis.

Lisa in WA