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AVM Survivors Network

New Kid on the Block :(

#1

Hi everyone! Recent AVM diagnosis....right cerebellum. I have no idea the grade or size just the radiologist reading from ER MRI finding stating a "prominent AVM on right cerebellum" Wanting to see who else is/has been in similar shoes. It has not ruptured. I've had headaches as long as I can remember, but on December 30th I went to the ER with the worst headache of my life, plus facial numbness, nausea,slurred speech, foggy head.

The ER physician didn't make a big deal out of the findings and never even told me to follow up with my primary. I didn't feel right about that so followed up with primary this past Tuesday. She was extremely glad I did and referred me to neuro surgeon in St. Louis. I don't meet with neuro until Jan 30, but am curious to connect with others in a similar boat and see what you have done for treatment and coping. Thanks in advance and I am so happy to have found this site!

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#2

Ho Jackie, I’m in the uk so treatment and processes will differ slightly but my story is the following: I started to get facial movement problems in august (2014) so eventually I saw my doctor in September. she immediately diagnosed a condition called hemifacial spasm. just to be on the safe side she ordered an mri and I was given the results about 2 weeks later. They found a large avm in my right cerebellum. It turns out it’s big (25 cubic cms)and after meeting a neurosurgeon In october I learnt it was inoperable due to size, location etc and the risks of removal were too great. Embolisation was also ruled out ( they don’t seem to like that procedure here in the uk too much as risks are high) so i was referred for gamma knife. i had an angiogram in december for the gamma knife team to look at to help make their decision. (if your avm is too big they may not treat it here in the uk)I learnt yesterday that I will get gamma knife but due to the size it can only be done in 2 treatments and not one. I have been told to expect the treatment to start mid- end of

February. I have found the process of getting a treatment plan really slow and sometimes very frustrating but that may just be the uk



feel free to ask me any questions

thanks

caroline

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#3

Hi Jackie. I'm in the UK and also have an AVM of the Cerebellum. When I was 14 (1987) it caused me to have recurrent Hydrocephalus and I had an operation to fit a Shunt. I have since had 4 further operations to revise that when it became blocked. Then in 2007 doctors diagnosed an AVM after I had an MRI and angiogram. Luckily for me it doesn't cause much of a problem to my everyday life and it is unruptured. I have very low blood pressure and maybe this has helped the situation. I don't know exactly but have been told the AVM is large. Doctors here seem to think any treatment would be very risky for me and would be unlikely to cure me fully anyway. So for the moment I have elected not to proceed and will take my chances. If I can be of any assistance to you please do let me know and best of luck in how you choose to move forward. I think the discovery of an AVM can be very shocking but rest assured you aren't alone (as I once felt I was before discovering sites like this).

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#4

Understand about what you described my problem started April 2014 with sinus and ear infections and facial pain and headaches. After several rounds of antibiotics and steroids shots and no relief was sent to ENT who thought it was TMJ but did send me for CT scan. This was the beginning of CT scans with and without contrast, ultrasound and MRI with and without contrast. Then my AVM in my cerebellum was discovered in April 2015 also that the headaches no one could explain were caused by the bleed that was found. Then had to find a neurosurgeon to take my case. No one in the area does AVM care so had to travel 2 hours each way to Phoenix. More CT scans, angiogram, MRA with and without contrast and MRI with and with contrast. Only to be told my AVM is deep in Cerebellum and surgery would damage good brain issue. Radiation is the option that was suggested as best for me. So May 7, 2014 Radiation was done but had to be a low dosage to not damage healthy brain tissue, this means will have more than one treatment.
This has been a life changing event and you need to fight for your care and answers. This website has given me information and support to continue to get answers and understand what we are dealing with now. Hoping you get the doctor and care you need so very important. Julie

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#5

wecolem aboard

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#6

Hey Julie I live in az too Tucson my son has avm in brain right side they are planning radiation treatment for him he had a great neurosurgery team how did u feel after radiation. He is 27 and I have to deal with his anxiety stressful for me and he lost his job due to FMLA runs out he works for a call center the lights bother him has constant leg jitters I am tryin to do this for him but can’t get h to cooperate its a battle but he has to help me with filling out paperwork all he wants to do is sleep had a seizure last yr on keepra and I am dealing the best I can what can I expect after radiation treatment

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#7

Hi Jackie:

Welcome to the most valuable site any AVM-er could ask for. My 4cm AVM in the right cerebellum ruptured on 11/13/14. I was in a coma for a few weeks, and had significant short term memory loss. The location of my AVM affected walking and coordination. Because of the location, Gamma Knife was my only option. I had the G.K. procedure in April 2014. My doctor’s had to wait until the brain swelling subsided, and for the brain itself, to heal. Next week I will finally have my 18-month MRI & Angiogram. I am so anxious to find out if my AVM is shrinking. I don’t have much pain. When I have a headache, I take one extra strength Tylenol and that usually works. My balance is still a little off and my short term memory has greatly improved, but thank God, I’m almost as good as new. This disease will make you re-think your entire life! I now have no time for negative people, idiots, or jerks. I’m about listening to my body, living right, living well, Prayer & Patience. I wish you all the best on your AVM journey. No two journey’s are the same, and we are all here to help and support you.

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