Treatment side-effects and recovery.

Last year my son(16) started getting periods of numbness in his left hand and foot for a period of 30 minutes every few days. I don’t know what these episodes are called but I’ve heard other members call them mini-strokes which appears to match the symptoms. His speech would also be affected during the episode. We took him to the doctor which led to an MRI where a large AVM was discovered in the right side of his brain. We met with the neurologist who went over the different options of treatment. Because of the AVMs location, a Craniotomy would be difficult. Embolization wasn’t an option because of the AVM size. Gamma Knife was chosen and he went through two rounds of treatment six months apart. Each round focused on a different part of the AVM. The second round was in January and over the following month, he started to slowly lose feeling and coordination in his left hand and foot. The doctor recommended Physical and Occupational Therapy but it was delayed because of Covid. We just started therapy a few weeks ago. The therapist believes he can get his coordination back but couldn’t comment on the numbness. The doctor believes the feeling could come back. I guess I’m wondering if anyone experienced similar side-effects and how their recovery went.

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Welcome to our site. A ton of experience here in all things AVM, but I quickly learned no two are alike. I had an AVM in the left side of my brain which ruptured leading to the discovery. Six months post bleed I had one round of gamma knife and 27 months later received the good news of obliteration. I had some fairly minor side effects 5 to 6 months after, neuro felt due to some swelling which is common after the fact. This included some"ice pick" headaches, which scared the daylights out of me the first couple times, but subsided and disappeared. A long way to say I didn’t experience similar but swelling after the fact can cause effects, the brain takes a long time to heal and recovery is continuous. I would definitely keep asking the questions, when is his first follow up?

I see you are from Wisconsin. I camped there back in 2008 near Wascott and then spent a weekend in Madison last September, great folks there! Take Care, John

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I can relate to his numbness in his foot and hand. I had it happen after my surgeries. My right hand was what would fall asleep the most. Doctors said that may get better after time but is common for me to have it on my right side because my AVM was on my left.

Thanks for the kind words John. His 6-month follow-up is in July.

Yes, Wisconsin, is great for camping. We try to make time during late spring/early summer.

I was 9 when I went through AVM in 1985 as the 2ND person to survive the surgery 4and they didnt have todays technology so Im left with a scar which took 359 stitches to close up on the back of my head in the former of a backwards C plus due to metal staples I have to be careful around powerful magnets. From age 9 to 20 I had 5 heart attacks, 4 strokes, a brain aneurysm, and many others. 20 times I have died and when I start to have a seizure, my body will stiffen my head will slowly turn to the right at this point I try to fight off the seizure because mine are Grand Mal but if my right arm goes numb thats my warning to lye down before I fall because shortly after my right leg will go numb and I’ll just fall. Learn to use it as your own warning system. I’m 44 now and when I went through surgery everyone said I probably wouldn’t live to see 10. I was much younger but I had to learn to walk, talk, eat. I learned sign language as I learned to speak again. Recovery was hard but “With time and patience everything comes to you if you just keep it up” Mrs. Hughes Children’s Hospital Panorama City."
She constantly said that to me. Now only 2 things make me different my seizures are uncontrollable and because so I can never drive.

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Have you, by chance, got a 2nd opinion from a neuro doctor?