Hi, my name is Kirsty. I'm 17 and live in Norfolk England. I've been with AVM survivors for a couple of weeks now and i am finally starting to get used to how things work here. I have been looking for something somewhere for people with AVMs for a long time as i have always been referred to birth mark support groups until recently. So, i have a right wrist AVM. I'm going to try and blog once a week (Fingers crossed on a Friday) to share my story, experiences and life with like minded people. So just a quick hello to introduce myself,
Kirsty!:)
Hi Kirsty
We are from Stanmore in Middlesex, UK. I am with AVM Survivors for my daughter Mia who is 13 years old and has AVM's in her right leg and ankle. I will be so interested to follow your 'adventures' and wish you loads of luck. xx
Hi, we live in Rochdale, Lancashire. Our 9 year old son was diagnosed with Cranial AVM after a bleed in Sep 13. We have joined the group since then and it is really very comforting sharing the story with people who have been through the same. He was operated in Oct 13 in USA and the doctors are very confident of complete removal. 3 months down the line he is perfectly normal with God’s grace. Miracles do happen, keep up the faith.
hi there,
i'm from deep south texas, and when i say "deep", i mean 4 hours south of san antonio. i don't know much about avm's in other parts of the body (my avm is in the brain) so look forward to your blog. you can tell people you have a friend in texas :) good luck to you!
mari
Welcome to the group. I live in the Midwestern USA and have an AVM on my ear and head. This group is a great place for support and information. Glad you found it! Wishing you well on your journey!
Hey! I just joined a couple weeks ago too. I’m just outside toronto in canada. I have a left wrist/forearm avm. I am seeing a specialist next week to start the process of healing or at least getting better.
I’ll post on my threads when I get an idea when and what the doc plans to do. Good luck!
Oh and what if any treatments have you received?
Welcome!
Glad you finally found us. And thanks for your plans for sharing your experiences. Every experience shared add to the information that this site provides.
Take care,
Debbie.
Hi Kristy, you have found the right place for support. I am in California. My boyfriend age 52 just had surgery to remove an AVM from his brain after a bleed two months ago. He is recovering well with some speech deficits and mobility too. Please keep us updated on your progress. You do have age on your side for resiliency.
Deb
Hi Kirsty, I am from Paris, France. My AVM was discovered by chance, and bleed 3 years latter. It was successfully treated. I will follow you, and wish you the best. To share experience with this group was of help for me, and I hope it will be the same for you
Hi,
I live in Oz in the sunshine state, Queensland. I had an elbow AVM - quite large. I had a long wait to see what could be done as the drs were very wary. My dr explained to me that if the AVM is contained then there is a better chance of successfully operating. I was lucky with that one and had a vein resection back in 2011. Not so lucky with the diffuse ones on my foot. Have had schlerotherapy three times and am still having heaps of trouble. The reason I told you this was that the drs will not operate unless they can be sure that they will be able to remove the area. if they are not sure they have to leave it because by operating they could cause more problems. Keep your chin up though because new things are being found out every day.
Welcome Kirsty..I'm so glad you found us! There is a wonderful sub-group on the Network..Check it out!
Welcome Kristy! Glad you've found us. I'm Jaz. High flow diffuse AVM in the face. In the states, Originally from Memphis, TN and living in sunny LA. Look forward to getting to know you :) Blessings!
Welcome, Kirsty, and congrats that you found us here!
Hi Kirsty. And welcome to the site. I joined last week having previously been a member of a UK AVM site that seems to have closed down. I am English and live in Milton Keynes. When my neurological problems first showed themselves I was 14 (I'm now 40). CT scans revealed a lesion on my brain which I was told was a birthmark. So I can identify with you being referred to birth mark support groups. I was 27 before learning that the lesion was actually an AVM. But the good thing is that elsewhere things have radically moved on in the medical world. I look forward to reading your blog. Good luck!
hi from Pennsylvania had mine in my brain stem almost 4 years ago double vision cant walk myself but doing ok I quess
Hello,
I'm still trying to get a grip on this thing.I feel like this must all be a big mistake.I am a patient care tech been one since 1988.I often have a patient ratio of 19:1.I am at a lost I am going to my second neurosurgeon in March to schedule a brain angiogram I've had so many MRI I think I can build one I have 46% blockage in my right carotid and an enlarged heart I've lived with knowingly for four year now but this has really thrown me I'm always tired and have the worst headaches I go back to work tomorrow on light duty I pray but I'm scared I know God doesn't give the spirit of fear but how do I tip toe through life
oh I'm 45 mother of 3 grandmother of 5 and news also
HELLO, KIRSTY!
Around 1980, I found out about my brain AVM, but back then, practically no neurosurgeons would even touch my AVM, because it was so large. So, I waited a decade later, where I found Dr. Robert Spetzler in Phoenix, Arizona, who was willing to tackle mine!! He told me my AVM was a very risky surgery, but I was willing, because my grand mal seizures were getting worse and worse. Altogether, I suffered 2 strokes during 7 brain surgeries!! I was like a baby starting over, yet I was 29 at the time. Do not be scared for me, because this is a gorgeous 2nd Life of mine. HERE IS THE BOTTOM LINE: Power/Strength From With In is the KEY to dealing with it, and if you need to, do something about fixing it.
Good, good luck to your future!!!
Lisa A. Stuckel
Hi Kirsty, I am from Hemel Hempstead, and have a Cerebral AVM. Good luck with your blogging. I can just about manage to post/reply to blogs here. I was in the last year to learn typewriting using aged pitman typewriters so computing is somewhat of a mystery to me.
I hope you have a great weekend.