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AVM Survivors Network

Condition worsens with no answers

Hi everyone,

I am the daughter of a CM survivor, my mother - Kathe who is now only 54 years old. I am writing to see if anyone else is dealing with the same issues and if they have received any better information or help unlike my mom.

She had her surgery in 2009, and continues to deal with more challenges everyday. Not only does she require a walker to walk short distances, she is confined to a wheelchair outside of the house. She has what the doctor describes as phantom pain in her legs. The pain started in her feet and now has moved up to her lower back, and she has the same pain in her right arm. Basically was told with physical therapy, this would help but yet only makes her pain worse. She has been on medical marijuana pills for the past year but even that doesn't seem to really help her. Each time we visit her family doctor, she really cannot help. The neurologist, who has been very good to my mother and our family - says she is doing well for what she has been through and says as they have tried different pain medications, there is not much more left to be done.

I may be preaching to the choir here, but it is hard to see your mother in pain and have no concrete solutions. Is anyone else going through this, and have you had any luck in finding a comfortable solution?

I’m not a Dr. But I would wonder if it’s another CM besides the one that got surgery. Somewhere in the upper spinal cord/ brainstem. I don’t know anything about your situation but I would want a mri or ct with contrast from chest up to rule out pressure being put on nerves from another source. I think pain medicine just helps to deal with a problem not fix it.

Thank you for your reply Jeremy. Sorry, I should have included more in-depth detail. She has continued to have MRI's done on a yearly basis and they have all come out clear. Her original bleeding was in the brainstem area, and the vessel had been replaced and all the blood that leaked had been removed. She has just requested another MRI as she was concerned there could be another bleed - just waiting for it to be scheduled.

Aakbar87, First of all, Good for you for being so caring about your mom - she is about my age. I was touched by your situation.

My Cav Mal manifested itself publically in 2009 with a Complex-Partial seizure. My wife and children watched their husband/dad go from a healthy person to a man who could barely navigate the stairs and even had difficulty walking. We saw our Primary Care Physician who referred us to a Neurologist and a Neurosurgeon. We were all being nice to one another, even after two brain surgeries and numerous rounds of anti-seizure meds. And I was still having seizures, still having coordination issues, still having mobility issues, still not driving, and on and on and on it went.

I thought why in the world was I still being nice to nice doctors. My family and I were the ones who had everything to loose. So we chose the path of going to the experts instead of staying with the local medical community. My insurance company covered Vanderbilt. (There are probably some in your area of the country.) Nashville is a three hour drive for us. That's where my wife and I went. Our nice medical friends were not so nice to us after that. The MRI from Vanderbilt showed that the local Neurosurgeon did NOT get the Cav Mal or the hemorrhage. So my Neurologist was just throwing rounds of ineffective anti-seizure medications at my medical situation.

I have had surgery at Vanderbilt since then. (My third neurosurgery.) The Neurologist and Neurosurgeon are working closely together, since my condition has improved somewhat yet is not completely resolved. We even talk on the phone to get into more precise descriptions about my most recent seizures and make medical decisions based on that information.

Am I being critical of my local Neuro Community? YES. But seriously what did I have to loose? My health. My life. Did Vanderbilt "solve" everything? NO. They are, however, working closely with my wife and me and giving us hope.

Again, Good for you for being so caring about your mom. So don't let being nice to your primary care physician and neurologist stop you from doing all you can. I wrestled with many of the issues you're dealing with right now. What you read is just one Cav Mal survivors continuing journey with his seizures. It's just - right or wrong - my experience that I offer to you.

I am so sorry to hear about your mother’s pain. Unfortunately I don’t believe most of what most doctors say. I have heard that you only have a certain amount of Aneurysms whereever in your body! That is not TRUE! You can cause more to happen if you lift weights, have tremendous stress that raises your blood pressure.
After my craniotomy in my brain. I now also have neuropathy because they cut the nerves in my brain. As a result of that I now get fluid build up on the left side of my neck. I now have a new brain aneurysm that is about the size of a pen dot. My neurolgoist is from Japan and they do laser surgery that only lasts one hour then you can go home! Compared to staying in the hospital 2 1/2 months for my craniotomy in 2001. This new doctor just watches this new aneurysm. PLEASE QUIT TORMENTING US!!!