I just found this site and for many years I have felt like something was wrong with me. I had been told by my Mom and family that I am fine. I had my surgery 28 years ago and through this site I finally understand my crying or anger or anxiety spells, and my short term memory are from my AVM. In 2010 I had completely different symptoms and discovered that I have 30 cavernous AVMs in my brain. I have “lived” with them but never understood everything I am going through.
Jenn
Welcome to our little community! It is great that you found us. If you’ve got any questions or concerns, just shout up. It’s what we are all here for.
We do have a number of members with cavernous malformations rather than AVMs so I hope you feel among friends.
Welcome!
Richard
Richard,
Thank you! I am very glad I found you guys. I feel a lot better knowing I’m not alone in this.
Jenn
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In 1989 I did have an AVM the size of a plum, I was a teenager then. I had surgery to remove it. Then 20 years later found that I have the 30 cavernous malformations. I am going to have them checked next month.
Well, you’re among friends on both counts!
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Jenn
I have/ and had, both cavernous malformations and AVM’s in my spinal cord and my brain. I had my first surgery in 1994, it was on my spinal cord; they removed a rather large cavernous malformation that left me paralyzed on my right side. I again had surgery the following year in the same area (T-3); then a last one in 1999 in the same general area. The first two surgeries took about 8 months to recover the 3rd took about 3 years before I was able to return to work. The paralysis did not last, I fully recovered.
I also have cavernous malformations in my brain; they cannot give a count. They say they are numerous in number; like star clusters. In 2003, I had gamma knife radiation on the 3 largest ones. They have to be of a particular size before they can target them. In 2016 I had an AVM rupture in my brainstem underneath my cerebellum (they performed a craniotomy). That one, unfortunately, was more involved and I am still recovering at this time. These cavernous malformations and avm’s for me were hereditary; as my dad, and his dad had them. They usually develop during conception. They are doing MRI’s currently at the 6-month marker; as I have a rather large AVM in my right PONS, in the brain.
If they see considerable growth in the avm in the pons we are looking at cyberknife surgery as an option; this is because of the location of the avm and it would be too hazardous to do traditional surgery.
I cannot predict when and if you will always have problems with yours, as each case is different. The only advice I can give is; have patience. The problems I did have were more manageable when I was younger. As this last one was more involved and I am much older; patience is helping me get through the toughest parts, along with lots of love from my closest family members. If you don’t know any of the abbreviations I used above, don’t hesitate to ask. I have a extensive healthcare background and sometimes I use terminology that is confusing to people not familiar with it.
I am a Paramedic with 30 years of experience. I’ve personally transported 2 patients like myself during my career; I have worked with one person also like myself. Each person has a different journey. But myself, I feel thankful; because the 2 people I did transport did not have a happy outcome; so when I think my day is bad, I reflect on those two individuals. I hope this helps you understand a little bit; I also struggle with the “why” that’s why I educated myself on the pathology of cavernous malformations and avm’s to understand them a little bit better. I know it won’t change anything but it helps me to manage my illness and live a better life.
- Bob
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Brm8027,
Thank you every bit of info I can get helps me… so again thank you for sharing your story.
Jennm
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im curious how did they not originally see these when they did your initial craniotomy? & was there an angiogram done? they just grew? educate me … i cant imagine going through this again. i have anxiety but it gotten worse since my seizures due to the scar tissue from where they removed my mass.
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same question:
how were those not seen during your initial craniotomy? & was there an angiogram done? they just grew? educate me … i cant imagine going through this again. i have anxiety but it gotten worse since my seizures due to the scar tissue from where they removed my mass.
They weren’t there during my initial surgery, they appeared 20 years later. My uncle had the same thing happen to him. In our family AVMs are hereditary.
so AVMs are hereditary? i thought it was still unknown.
There is definitely some inheritance of conditions that carry AVMs. I was rather interested to see this article about Nikki Christou the other day, which rather strongly indicated a genetic link, in her case at least:
http://www.avmsurvivors.org/t/nikki-lilly/16765/4
Whether all aspects of AVMs are inherited, congenital or developed may still not be clear but this is the strongest thing I’ve seen 're inheritance (though I don’t read widely outside this site).
Richard
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Jessica_P
The AVM in my Right Pons was not present when I presented to the ER with the hemorrhaging AVM on my brain stem. It did not appear until 10 months later. They do not appear until they develop a blood supply which then they appear in a CT or MRI scan.
After it presented on an MRI they did an MRA which is a magnetic resonance angiogram, to determine what type of intervention would be best to do.
I know it is easy to tell someone to control how much stress they have it their life, but seizures are precipitated by anxiety. The more anxious you are, the more likely you are to have a seizure.
Some other info, seizure medication causes me to have loss of coordination, dizziness, and headaches, among other problems, confusion being the biggest. I took the neurologist’s recommendation and took anti-seizure meds for 1 year; supposedly to help my brain heal. But once the year was up; I challenged his recommendation, since I had so many more medical problems with the medication. I had only one documented seizure, that was in 2004 and it was a small focal seizure only, just after I had gamma knife radiosurgery; so I decided to forgo the seizure medication. So far I’ve been lucky and haven’t had to start taking seizure medication again.
This shows that everyone has their own journey; I’m not sure if other people have experienced problems with medication like I have, but my personal preference at this time is to proceed without the intervention of any meds. I am trialing a few rounds of botox because I have spasticity in my lower extremities. The other medication they have tried caused various problems that led to a decline in my recovery from the craniotomy and it was decided that no meds were in my best interest.
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Interesting and great to hear the rest of the post, too.
@Artem you may be interested,
Richard
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My neurosurgeon did some extra MRIs before and after my surgery. And he told us that in our family they were hereditary. They believe the misdiagnosed my grand mother and that she had them too. My uncle has them, 2 of my aunt’s, 1 cousin, my mom and then me.
I also had an AVM show up about 6 months after my craniotomy during my MRI follow-up. They wanted to keep an eye on it and they reimaged me 2 months later and it was gone. It was originally in my left parietal lobe; this goes to show that the brain is somewhat plastic and changes all the time; also called neuroplasticity. All they said was that the brain probably reabsorbed it, and it was passed out of my system.
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