Arteriovenous Malformation (AVM) Survivors and side effects

Posted by auldcelt @auldcelt, Dec 16, 2016

I’m a survivor of an AVM in my right hemisphere. Since the surgery I am dealing wth migraines and wondered if anyone else has experienced this. If you have what have you tried to get back to normal living. I’m also interested in reading about studies and research on AVMs

@kiarastrong

Hello, I stumbled across this forum desperately looking for information about AVM. A rare disease that attacked my 18 yr old daughter the morning of April 6, 2019. She is in NICU fighting for her life. I never heard about this abnormality of veins she was such a healthy child nothing out of the ordinary. May God Bless You all I'm hear reading your posts and I'm in tears. God Give us Strength and Power to see this through.

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I'm so pleased you were able to stumble across this forum. I think you will find genuine support here. I’m sure you will experience sincere hope for your daughters full recovery. I went to Mayo's in January 2019. Had a craniotomy and lengthy surgery after couple of angiograms and coils for stabilization. No one is promised 100% in life. But I think you can expect your health professionals to give you their best medical treatment they can give. You will find sincere efforts on your daughters behalf. Best of luck. Let me know if I can help.

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Hi everyone,

I'd like to invite you to join us today, Wednesday, May 1 at 12pm CT for a video Q&A. Drs. William (David) Freeman and Rabih Tawk will be discussing all aspects of stroke, and will answer questions during the live broadcast.
Simply click https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ for details.
Drs. Freeman and Tawk will answer questions live. Post your questions before and during the broadcast.

Return to this page, https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ to take part in the video Q&A live on May 1 at noon CT. It will also be archived on this page.

Liked by Lisa Lucier

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In February I had a craniotomy to deal with my AVM. Recently, I have developed deepening ridges along where they cut my skull. Anyone experience this? Thank you for any ideas.

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@mockinbrd

In February I had a craniotomy to deal with my AVM. Recently, I have developed deepening ridges along where they cut my skull. Anyone experience this? Thank you for any ideas.

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Hi, @mockinbrd – wondering if some of the others in this discussion, like @avmcbellar @nusmal @ad_walker @levity have experiences to share about developing deepening ridges along where the surgeon cut their skull. @kariulrich may also have some thoughts or information to share.

@mockinbrd – did you have a chance to talk with your surgeon about the ridges and see what he or she thinks about this?

Also, @nusmal, are you still experiencing the floating sensation you'd mentioned before?

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@lisalucier

Hi, @mockinbrd – wondering if some of the others in this discussion, like @avmcbellar @nusmal @ad_walker @levity have experiences to share about developing deepening ridges along where the surgeon cut their skull. @kariulrich may also have some thoughts or information to share.

@mockinbrd – did you have a chance to talk with your surgeon about the ridges and see what he or she thinks about this?

Also, @nusmal, are you still experiencing the floating sensation you'd mentioned before?

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Hello Lisa,
So good to hear from you. I was hoping to hear others say that deep ridges are normal. I was looking for that no-need-to-worry, a deeply lumpy skull is fine. Just wondering. Hope you are soon enjoying being outside in beautiful spring and soon to be summer in Rochester. And Maybe another will post on my question. Thanks.

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Hoping to catch up with some of you who have posted here about your experiences with Arteriovenous Malformation (AVM) and see how things are going. I think it will be beneficial for all in this discussion.

@mockinbrd – did your doctor provide you any insights on the ridges you were noticing on your skull?

@avmcbellar – how is the neuropathy you talked about developing during your AVM treatment? You might also be interested in the Connect Neuropathy group https://connect.mayoclinic.org/group/neuropathy/, Have your migraines recurred at all?

@kiarastrong – thinking of you. How is your daughter?

@nusmal – are you still experiencing the floating sensation you mentioned?

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@lisalucier thank you. I will get in touch with the neuropathy group. I still have neuropathy on my left side. Sometimes the pain and burning can be difficult to deal with. Drinking ice cold water and keeping the room temperature about 75 or lower seems to help. The Florida summers can get pretty warm so I briefly stay outdoors to enjoy my flowers. Somedays the intensity of the neuropathy seems decreased. When I feel better I do more around the house.
With the headaches, I do still get them but not as often, maybe once or twice a week. Caffeine does not seem to matter in eliminating the headache. I tried using omega 3 oil as a blood thinner but I did not see any improvement. I am not sure if moving around with poor vision is the cause. I did that in the past but now I do more. I still have the double vision. It has improved slightly. The dizziness and nausea stops me from several activities. I do what I can. Outpatient and home care physical therapy has helped me learn to walk again. I plan to do more physical therapy outside my home in the fall to learn to walk on uneven surfaces like the lawn.

Liked by Lisa Lucier

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@stellgma

Hello! I recently had open brain surgery (craniotomy) at Mayo to treat a 2nd fistula that couldn’t be safely reached by embolization. At day 23 I am pain free! No headaches, pressure or nausea!! It was a rough 22 days after surgery-lots of Tylenol and icing my head. It was discovered during surgery that I have a 3rd lesion that will probably need gamma knife radiation. It’s been a real rollercoaster ride the last 11 months, but I have total faith in my Mayo Clinic neurosurgeon in Rochester.

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What were your symptoms prior to finding your diagnosis

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@aadgloria1401

What were your symptoms prior to finding your diagnosis

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I had no symptoms just headaches my entire life.

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@karla401

I had no symptoms just headaches my entire life.

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Hi, @karla401 – welcome to Mayo Clinic Connect.

Here is some Mayo Clinic information on arteriovenous malformation https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260.

What have your headaches been like?

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@karla401, @aadgloria1401, @avmcbellar, @mockinbrd, @nusmal — I was hoping to hear if you have had any change in your symptoms or treatments that you can share with other members. I ran across a recent study that I thought might be of interest to you.

Multimodality treatment of intracranial arteriovenous malformations in South Island, New Zealand
https://www.sciencedirect.com/science/article/abs/pii/S096758681931985X

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@johnbishop

@karla401, @aadgloria1401, @avmcbellar, @mockinbrd, @nusmal — I was hoping to hear if you have had any change in your symptoms or treatments that you can share with other members. I ran across a recent study that I thought might be of interest to you.

Multimodality treatment of intracranial arteriovenous malformations in South Island, New Zealand
https://www.sciencedirect.com/science/article/abs/pii/S096758681931985X

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John, thank you for your inquiry. Very kind of you to ask all of us. A couple of days ago I was able to celebrate my one year anniversary since my craniotomy for my arteriovenous malformation. I believe I'm doing very well and able to do much of what I want. I see slow, steady, but continued progress in most areas. More than occasionally I wonder how others who have posted here are doing. I found the support from members and moderators very very helpful and important at various times. Again thanks to all. Would like to hear how others are doing.

Liked by Lisa Lucier

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@johnbishop

@karla401, @aadgloria1401, @avmcbellar, @mockinbrd, @nusmal — I was hoping to hear if you have had any change in your symptoms or treatments that you can share with other members. I ran across a recent study that I thought might be of interest to you.

Multimodality treatment of intracranial arteriovenous malformations in South Island, New Zealand
https://www.sciencedirect.com/science/article/abs/pii/S096758681931985X

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Hi,@johnbishop thank you for asking. I had made a few dietary changes and saw an improvement. My neuropathy has become more manageable eating a Keto diet. I eat much less food now and try to consume foods less acidic. The bloating has decreased as well as the burning sensation in my stomach and esophagus. I feel much better. As for the Home Health physical therapy I will start in a month to learn to balance while walking on my lawn. I feel my eyesight has not improved because of the burning pain from the eye strain. I still see double. I feel it contributes to my motion sickness and headaches. I will see my neuro ophthalmologist in June. Turning my head quickly still causes dizziness. My ability to see well reflects on both simultaneously, turning my head and my eyesight. I am hoping a pair of glasses with a prism will help. My disability is all physical from my AVM rupture. I have no cognitive deficit. I have learned to use my left hand more often instead.

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I have had an AVM rupture with repair 3 years ago. Since my last surgical repair I was left with neuropathy on one side of my body. At the time the surgeon told me it would go away but I still have it. I have difficulty losing weight since the AVM. Before my AVM I had no weight issue. Not sure exactly why when I switched to a Keto diet 6 months ago. Has anyone overcome the same experiences?

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Hi, @avmcbellar – I wanted to let you know I moved your post here to this discussion on arteriovenous malformation (AVM) survivorship and side effects where you've posted before so you can connect with others dealing with post-repair side effects and get their input. Hoping members like @mockinbrd @aadgloria1401 @karla401 will have some thoughts for you on the neuropathy that has not gone away as projected and the weight loss difficulty since the repair. @kariulrich and @johnbishop also may have some insights.

avmcbellar – has anything made a difference in the neuropathy? Have you had the chance to talk with your surgeon about her or his opinion on the weight loss challenges since the surgery?

@kiarastrong – thinking of you and your daughter.

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