It all started when I noticed hearing loss on the right for about 15 seconds during heavy exercise, went from doctor to doctor (Juli 2020) and had an MRI on the first of October 2020 resulting in an AVM Diagnosis (AICA cerebellum). Angiography was in November and it was thought that it was a single feeder and that a single Embolisation would suffice. Operation was on the 26st. of February and during the procedure an additional small feeder was discovered and they wanted to abort to re-evaluate the treatment strategy. However that is where all hell broke loose, as the catheter was already glued to the vessel and in an attempt to remove it, it was torn in half leaving 10cm of catheter in my neck. I was transferred to Neurosurgery and opened (Suboccipital Craniotomy) and a Doctor had to risk her driver’s license to get my MRI images for the operation. Operation went successful and AVM as well as the catheter was removed. Due to the severity of the incident I had to stay 4 days in intensive care. immediate Morbidities were strong Ataxia, strong Nystagmus and strong hearing loss on the right ear. fortunately however, now 2 Months after the Operation, Nystagmus is gone and Ataxia has regressed by about 85% and I am no longer impaired. Hearing loss is still persistant but gradually better and improving. All in all I got very lucky regardless of what happend
Welcome to the board, and wow!
Good to hear that you’re doing fairly well - considering
How old are you, if you don’t mind me asking
How are you feeling? Any other probs?
That’s quite intense of a story there
I am 19 years old but I was 18 during Diagnosis. And overall I am doing surprisingly well I believe that the Rehab and my age really accelerate my recovery and progress. (As well as the cerebellum, which can regenerate fast [not always])
Most issues are on the decline and the only thing that may be relevant in the long term is my right ear, but I would be fine if I would not make much progress from now on as I can work pretty well will everything that I have gained back.
That’s awesome! Wow, at your age to handle what you’re going through this well is nothing short of amazing!
I wish your luck & others like “us” - this is all very intense. And, at 1/2 my age you’re handling better than I have.
You give people hope - and, that’s very important around these parts.
Thank you so much for sharing your story!
@Zenheizer Welcome to the group so glad you found it and that you are recovering so quickly! I hope your hearing does come back. The brain is amazing - So sorry this happened to you ! Do they think you were born with it? Angela
Thank you very much Angela!
Yes they think I was born with it but it seems as if it expanded more aggressively last Juli when I started getting symptoms
Your story is amazing! And, the fact that you have been progressing so rapidly fills me with joy! The cerebellum (as well as much of the brain) is such delicate tissue. So much could have been worse. Kudos for displaying courage and optimism while facing this!
Hello, thank you for your kind words!
Yes I can hardly be pessimistic about the outcome since the AICA often has feeders into the brainstem, so what was my ear, could have been my brainstem and therefore my life. I really hope everyone here gets that as much luck as I had and even more.
Have a great day!
Update: It has been now a bit over 2 months since surgery and walking is about 93% and hearing has improved a lot. My right ear only feels like it has a bit of water in it but hearing itself seems to have come back by maybe 80% so I am even better off than how I was when writing my original comment
@Zenheizer wow that is wonderful news - I am so happy to hear you continue to improve.
Great to hear!
Amazing to hear, just amazing!
Keep slowly(as low as you feel necessary)pushing - it’ll just get better
That’s great to hear. My AVM burst occurred on the right cerebellum when I was 18 as well. It took several months, possibly the better part of a year, but eventually I went back to 99%. I hope your recovery continues to be strong.