sarah's spinal avm

sarah morhun · #1 (**permalink**) 09-01-2009, 12:55 AM

Hi, my name is sarah and i am currently 22.
i was diagnossed 2 years ago with a spinal avm, due to a bleed. which i suffered paralysis down my right arm. its was extremely painful.
ever since then ive been in pain. my symptoms are numbness through my arm and bak, tinglin threw mr right arm. i cant feel hot and cold in my right hand due to nerve damage. (this causes problems sometimes as i do have a little girl). constant pain threw my spine, chest pain, shortness of breath. and much more. to many tolist. recently i have had stange pains dwon my legs, this is worryin because i cant live without them.
after bein told i could not have any treatment i was discharged and told i would be dead or quadraplegic by the time i was 35. i was 19 at the time.
finally we found, through referrals that there may be a surgeon that could help, he was a professor of the brain and worked at the royal melbourne hospital.
after months of speculation they finally made a diagnosis and decission to operate because there was no other option for anything else. i was told i would suffer long term effects and alot of rehabilitaion.
my operation was asuccess, no long term effects, a miracle the surgeon said. it was very painful but nothin that strength couldnt help. the pain and numbness got a little better, but i just thought it was post op pain.
i had a post op angiogram for the 3rd time all up, 3 months after the operation, they found the surgoen didnt get it all. but would be no reason to stress as they ussually dnt grow.
i then fell pregnant and had a beautiful little girl whos almost 1. she was delivered by c-section, because i could not have an epidural and my surgeon was worried id have another bleed. everything went perfect.
a couple of months after my daughter was born, the numbness and tinglin, all of my symptoms came bak. i had an app co0min up with my surgeon so i waitied til then. i explained wat was happenin and he said to have another angiogram just to be safe.
that was the worse news of all, my avm had grown again and was now the size of my avm before i had surgery...
currently myself and my surgeon are discussin options of what to. he is not confident that he will be able to operate again with no paralysis. its a 1in 10 chance of complete quadraplegia on a ventilator and a 2in 20 chance of being partially paralised. thats not includin all the other risks, such as a spinal stroke or bleed.
im currently waitin for an app with a professor in radiation to see wat his opinions are. my surgeon said its very unlikely radiation will be an option but he wanted to check everything.
my surgery is currently goin to take place in january, 2010. i hope it hurrys up (well not really) because this pain is gettin alot worse. im on medication, but all they seem to do is knock me out and i cant have that with a 1year old little girl.
im more scared this time because i do have someone i may have to leave my daughter behind. this site has really helped me im hopin my story helps someone.

sarah morhun · #2 (**permalink**) 09-08-2009, 09:38 PM

sorry for the short update but finally have recieved my appointment with a professor in radiology, its booked for the 23rd of september...i post an update once i no exactly whats been discussed..

manosj22 · #3 (**permalink**) 09-22-2009, 03:06 PM

I had surgery roughly two months ago. Woke up in the AM with pain in my back. My AVM was actually bleeding out. Best of luck and keep your head up. Will be checking back for your progress...

sarah morhun · #4 (**permalink**) 09-23-2009, 06:55 PM

Hi, its sarah...thankyou for your reply, how did your surgery go?, & have u any lasting effects from your bleed, sorry for the questions but this site has really helped me...
hope everything goes good in the longterm....
take care and would be great to hear more...xx

sarah morhun · #5 (**permalink**) 09-23-2009, 07:00 PM

Sorry but this will be a shorty update....
i had my appointment with mike dally the radiologist from the alfred hospital yesterday, after him goin through all of my scans, he decided that radiation was not an option in my case because my avm is inside my spine as well as outide....(just my luck)....
the risks would've have been to high and radiation is rarely used on the spine without complete quadraplegia....
im waitin for an app with my surgeon to discuss a surgery date...
i will update again once i have seen him....
i hope this helps somebody....

manosj22 · #6 (**permalink**) 09-25-2009, 01:12 PM

Then you can have a cool scar like mine!

sarah morhun · #7 (**permalink**) 09-25-2009, 07:40 PM

Funny that i had surgery 2 years ago and was left with a long scar down the middle of my spine... Havin to go in again makes me worry about the size of the scar im left with this time around...i no its only a minor worry with everything else im worryin about but that keeps runnin through my head..
Thanks heaps for your reply...
By the way where r u from?

manosj22 · #8 (**permalink**) 09-28-2009, 08:22 AM

I am actually from Jacksonville, Florida in USA. I did notice your use of "Heaps" a lot so I am assuming you are from Australia! My sister and her Fiance live over there. What part are you from?

sarah morhun · #9 (**permalink**) 09-28-2009, 07:58 PM

LOL... Yeah i do live in australia... i live in victoria, melbourne... ive never been out of australia, do u like livin in florida... how long have u lived there..
hope all's well for u and i guees ill speak to u on facebook wen we get a chance..
take care and speak soon.

Marea · #10 (**permalink**) 02-05-2010, 01:46 AM

Hi Sarah I was wondering how things are going? I had a car accident 9 years ago and have suffered terrible pain all that time and it gets worse and worse as time goes by. Approximately 18 mths ago they found an AVM on my C4. Luckily mine has not bled yet but according to my neurosurgeon it is now suitable to operate on so I can possibly avoid paralysis etc.
I just wanted to know how things are going for you and have you had another operation? :-)