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AVM Survivors Network

New AVM member

#1

My name is Janice and I was diagnosed with having an AVM after waking up in Dec 2017 with stroke like symptoms. I’m a registered nurse and knew what stroke symptoms were. The ER doctor stated I didn’t have a stroke as I had left sided weakness and numbness including my face. Next day the numbness moved to the right side of my face. Blood was drawn and found I had B12 deficiency so they placed me on injections. The numbness and weakness continued for 5 months and my sister who is a nurse also kept stating I have had a stroke. I called my PCP and scheduled an appointment she referred me to a neurologist and I requested a MRI he ordered with and without contrast and found I indeed had a stroke. He then ordered a MRA and CTA and found I have AVM on my right side of my brainstem. I’m blessed to be alive… I’ve had two embolizations. My neurologist was able to successfully emobilize 25% the first time and 30% a week and half ago. My embolizations were 6 months apart. With this second embolization I have been having slight headaches and sometimes sharp pain in my head. I emailed both of my doctors to let them (surgeon and neurologist) both know. My surgeon is referring me to have radio-surgery but he says it’s something I really need to think about because of possible residual effects. I’m wanting to receive a second opinion and weigh my options. I would like to receive feedback from anyone. Thank you

#2

Hi Jstanfield:

I would like to welcome you to our family of AVM-ers. We are a wonderful resource group and we will share with you and give you as much support and encouragement as you need. Try not to get too discouraged when the doctor’s are giving you what sounds like conflicting information. Sometimes I think we know more than the doctors because we are living with AVM’s, and we know our bodies and we know what we feel. Never be afraid to question the docs. whenever, or as many times as you need to. Stroke or no Stroke, you’re one of us now and we’re glad you found us! Wishing you all the best.

Sharon D…

1 Like
#3

Hi Janice,

As Sharon says, welcome to our worldwide family!

My AVM was in my brain but not as deep as yours. What do I know or believe about a cerebellum AVM? I believe that they are often much deeper in the brain and involve critical functions, so there will probably be a difficult choice to make as to whether trying to operate on it will give you a benefit versus the risk of giving you problems from the operation. It is for this reason that the doctor is cautioning you that you and they will need to have a proper, balanced conversation about what and/or whether to do something about it.

There are definitely a few people here who have had some intervention on a cerebellum AVM and a few who have been advised to just keep an eye on it. If you look down the home page for the Types of AVM section, you should find a category for cerebellum and brainstem.

Ask anything you need.

Very best wishes

Richard

#4

Welcome Janice. Its great you’re here! I haven’t had any embolizations but have had radiosurgery, gamma knife in my case. My AVM was left temporal, deep but not at the brain stem for sure. Mine was also quite small. I’ve been advised it was gone following my angio a month ago. I have really no side effects from the gamma, but some from the bleed that led to the discovery of my AVM. I would certainly follow up on the possibility and get all the info you can to make your decision. In my case I was referred to the GK doc from the embolization doc, as sub specialties. They are both neuro surgeons. They looked at all my scans and decided what was best. I was very happy with both, and felt well informed to make my decision which was Gamma vs. Craniotomy for me. Take Care, John.

#5

I have an Avf the fistila is at my brainstem. I had two embolization attempts as well and I just had proton beam procedure done at Boston. I absolutely loved my Dr. His name is Dr Chapman and is well renowned in this fireld. I was told the results will take a couple of years.i still have so many fears and concerns but I really trust him. I had conflicting advice as well I started out at Albany Med and they wanted to do surgery. Dr. Chapman said that It was a good thing I went to him for second opinion because surgery would not have had a positive outcome and probably fatal. So please research your Drs. I know it’s alot but look up dr. Chapman and research him if you are on the east coast I highly recommend him. It my own personal opinion but I hope it helps.