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AVM Survivors Network

This Is My Second Posting 1 1/2 Years Post My Wife's AVM Rupture

Out of nowhere, my wife (55 years old at the time) had an AVM rupture within her Cerebellum with Brain Stem compression back in April 2018 (where she had a craniectomy and laminectomy to allow space for brain to swell and remove clotting). She had VP Shunt placement surgery in May 2018 and then had AVM resection surgery in August 2018. So 1 1/2 years in now and it has been a very slow road in terms of progress but my wife is certainly moving in the right direction. Doctors tell us that 90% of how you come back happens in the first year but I don’t believe that. My wife was significantly impacted by her rupture (movement, coordination, vision, speech, swallowing, lost sense of taste and smell). The only doctors my wife sees now are her neurosurgeon (who doesn’t want to see her for one year) and her neuro ophthalmologist (who similarly said come back in a year). We’ve already done the traditional rehab route (both acute rehab in hospital as well as outpatient rehab). Now we’re on our own to figure out next steps as part of my wife’s rehabilitation and that’s why I’m really posting here. We discovered a neuro acupuncturist based out of New York City who’s making a real difference in my wife’s recovery now. His treatments have been dramatically improving my wife’s mobility, reducing her numbness sensations as well as ability to almost effortlessly move her neck side to side. He brought back my wife’s sense of smell and they say that taste generally follows the return of smell. The whole premise behind his treatments are simply to increase blood circulation and flow back to the brain, which is problematic for my wife given all the scar tissue that has built up after multiple surgeries. I just want to share this with the broader community as a potential rehabilitative path to consider. It has truly worked for us.

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I really appreciate the update and am a huge believer in forward is forward. The speed of forward is often a source of consternation for sure. I think often the most visible improvements occur fairly early but know that it is a continuous journey withe many peaks and valleys but again focussing on forward.

I’m so happy to hear the results so far with acupuncture, that is fantastic. I know there are a lot of alternative treatments available and believe in them working in lot of cases and worth a try as we search. What works for me may not work for someone else but we need to keep trying, and posts like yours provide great encouragement to many of us. I found great value in something as simple as aroma therapy using frankincense. I hope you continue to see positive results. Take Care, John.

@determined I think most drs think if you dont recover in the first year you are not going to recover. I think we can continue to improve and there is still so much of the brain that we dont understand. I am so glad that the neuro acupuncturist is helping your wife I will mention this to my neighbor who also had a AVM rupture and is having a tough time with one side of her body.

Angela

Hi. I am so happy to hear that your wife continues to improve and is doing well. Everybody is of course different and everybody heals and regain abilities differently. I too was told the 90% first year info but found that for me it wasn’t true. I am six years out and continue to improve daily. Just keep pushing along. The cerebellum doesn’t like being messed with but I found it does heal. Best of good health to your wife. Howard.

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Just echoing what others have said really. We truly are all individual and our bodies and brains recover at different rates and in different ways sometimes. I think a lot of doctors try to generalise. But brain injuries just aren’t something you can generalise with. Very best of wishes to your wife. I’m glad she has found something that works for her and I hope she continues to improve. Lulu x

Thanks for your email and for your warm thoughts. Agree 100% - everyone recovers differently. You just have to be positive and persistent, and find what works best for you.

Thank you so much for your response Howard. It’s great to hear that six years in, you’re still improving and making gains on a daily basis. All the best to you.

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Glad to hear your wife is still progressing. My 12 year old daughter’s AVM rupture was in the same location and her recovery has been slow too. It will be 3 years in January. Was your wife’s speech affected? My daughter’s vision problems resolved themselves after a year but her balance is still poor, her speech is slow and she tires very easily.

My heart goes out to you. I cant even imagine with your 12 year old daughter. Yes, my wife’s speech was affected. Yes, her balance (vestibular system) was significantly impacted. Her vision is improving by way of wearing prism glasses. But she fatigues very easily each day. I really think it’s all about mindset, positivity and determination, fight to get better. I wish you all the best with your daughter’s continued recovery.

Thanks John for your email response. We just keep pushing ahead, staying positive, open minded and determined. Funny you should mention frankincense.That’s also part of my wife’s recovery regimen and does seem to make a difference. Wish you all the best moving forward.

Eric