Honesty i don’t think that there is one, that i have heard of bit there are a lot of really good doctors. I was treated at the Emory Hospital in Atlanta GA. All my doctors were real good and had my wellbeing in mind while treating me. One thing that i can say is that all AVMs are a serious thing, and they should not be left unchecked there are so many things that can go wrong. An angiogram is always good to know to what extent your AVM reaches. You should also consult in a neurologist and he can tell you the best way to deal with it.
Kathy K said:
Hi all,
I just came across this forum and wanted to take a look! I was diagnosed with a probable AVM about 2 months. I had a spinal MRI done to rule out MS, due to weird neurological symptoms I’ve had for years. That’s when they saw the AVM. The doctor who found it (actually a physiatrist) told me it was very serious and something that I should deal with immediately. Since then, however, most doctors I’ve talked to have be like ‘eh, it’s not that big of a deal – just live your life.’ Over half of the doctors say I shouldn’t even bother to have an angiogram, saying that even if it proves I have an AVM, the treatments are too risky to consider unless my condition worsens significantly.
I have yet to find a real spinal AVM specialist – does one exist?
I’ve sent my MRI to the Mayo Clinic and am talking to the Cleveland Clinic and Duke, where it seems like they have some knowledge.
Any advice, especially on where to seek treatment, etc. would be great!
I don’t think I’ve ever heard of any AVM Specialists, per se. But my embolizations were done at the Barrow Neurological Institute in Phoenix, AZ. My neurosurgeon there is Dr. Cameron McDougall, and he works ‘under’ Dr. Robert Spetzler. The BNI, of St. Joseph’s Hospital, is one of the leading neurological, for brain and spine, treatment facilities in the country.
I was so pleased with the treatment and care I received from Barrow and Dr. McDougall, and I always feel like I’m in the best hands with them.
I just came across this forum and wanted to take a look! I was diagnosed with a probable AVM about 2 months. I had a spinal MRI done to rule out MS, due to weird neurological symptoms I’ve had for years. That’s when they saw the AVM. The doctor who found it (actually a physiatrist) told me it was very serious and something that I should deal with immediately. Since then, however, most doctors I’ve talked to have be like ‘eh, it’s not that big of a deal – just live your life.’ Over half of the doctors say I shouldn’t even bother to have an angiogram, saying that even if it proves I have an AVM, the treatments are too risky to consider unless my condition worsens significantly.
I have yet to find a real spinal AVM specialist – does one exist?
I’ve sent my MRI to the Mayo Clinic and am talking to the Cleveland Clinic and Duke, where it seems like they have some knowledge.
Any advice, especially on where to seek treatment, etc. would be great!
Yeah i do also think this is not the best place to meet, but for people like us is a great place to look for support. I have just spoken to some of my doctors and we came to the conclucion that it was better to live the AVM alone as it will cause more problems if we do anything else to it. I hope that you are doingbetter, and i’ll be here if you need to talk or just blow some steem off.
Thanks for the welcome. How are you doing now Edmundo? Are things improving for you?
I have had some recent trips to Dr’s. More tingling, numbness, pain down arms and back. Took MRI’s and MRA’s. Said the cord is bent oddly after my cervicle plate ends at C-5 so now waiting to see spinal surgeon. Not sure what my choices are yet. The Dr did say my AVM looks good though which I should be thankful for, right?
If you have a minute I would like to know more about your story and what they did to avm and how you are progressing. My first surgery was almost 17 yrs ago. I started out in wheel chair for months and quad cane, tri-cane, then regular cane. I walk most of the time without assistance though I am very clumsey! I fought this each and every day. I hope I don’t have to put the gloves on again.
Thinking of you.
Connie
Edmundo Rodriguez said:
hello connie i’m glad that you have found this forum, i apologize for not answering before, but i was out of the country visiting some family. and yeah i have the same problems i overheard one of my doctors mentioning to another that i look like a stroke victim the way that i walk and the way that i move. but i’m just glad that i am able to move around. i’ll be conected if you need someone to talk to. i know that it is hard to talk to someone that has not beeing tru this.
Edmundo,
I had one from T-3 to C-3. It was treated by a Interventional Rdiologist in Tucson Az. He used an Angiogram an glued it shut it took two times but has resulted in 98% success in the majority of the pain and symptoms are gone and I can walk again without a cane. The only problem I have left is headaches at the base of my skull and no one at this time seems sure where those are coming from.
My prayers are with you
dale
I have been diagnosed with Type II intradural spinal AVM in the T7 area inside my spinal cord. I am currently looking into options of treatment as I have been suffering from persistent neuralgia on my left flank in the abdominal section as of January 21st this year.
So far I’ve had a few thorough MRIs and a spinal angiogram done to confirm the specifics of the AVM.
The doctors have said that the less invasive options available - embolization and radiation are not viable as the risk is too high. The AVM moves when I breath and it is located inside my spinal cord.
The options I have available are microsurgery, cyberknife or waiting to see what happens.I not very keen on microsurgery, as it is too invasive and it feels to risky as this point. I am chasing up options for cyberknife now. It is difficult to wait as I taking medication for constant pain, both of which is are constraints to leading life normally or pre-AVM health. I would really appreciate any advice or insight on this…or if there’s anyone who’d ever had this.
I wanted to let you know that in addition to the Extremity group here (for those of us who aren’t ‘brainers’), there is also a Spinal group too. Please join, if you’re so inclined. =)
I wanted to let you know that in addition to the Extremity group here (for those of us who aren't 'brainers'), there is also a Spinal group too. Please join, if you're so inclined. =)
I had a spinal AVM in cord from c-2 thru C-5. Mine was surgically removed in 1993. I have numbness and loss of location sence and weakness on left side. It was a long recovery and have had some surgeries since then but I am hanging in there!
Let me know more about your case and where you are located in the US? Hope we can help you here!
OK EDMUNDO
YOU MUST THINK im mad wrighting all the time forgot to tell you these pains im geting now has realy started
bothering me the last twelve months but tonight are really bad iv been in a wheelchair since the opp in 2003
i cant walk or stand which makes it worsei went for an mri about 2006 they said there was nothing wrong
but im still suffering because i dont no what im doing on this compter please dont think im a nusence on this all the
time it justs help a bit ervry thing is far from here and the docs around here dont now enogh ron north wales united kingdom
Hi, I also have spinal AVM, a huge one, it seems from T to C1. I still dont know exactly from which toracal vertebra, but I will get the details soon. All I know is that mine starts on the left side from the aorta / heart area and keeps till the brain stem, part of it is inside the spine.
Sorry for the long time it took me to respond, I can understand how you must feel I too can feel the AVM some days more than others. I was left with almost the same prognosis as you. Radiation and Micro are to risky I was just left with waiting to see what happens. I have a great team of doctors, but I feel that all our hands are being tided. The good news is that i have regained a lot of my mobility I can now walk with a cane and for more than 10 minutes at a time. I too have to deal with the pain medication, muscle relaxers, and nerve pain. I tell people that it is amazing at the things that the body can get used to, including living with pain. There is not one day that I (we) don't have pain. Well I seem to have gone on and on, if you need anything or just need someone to talk to let me know and I will try to help
Nazneen said:
Hi
I have been diagnosed with Type II intradural spinal AVM in the T7 area inside my spinal cord. I am currently looking into options of treatment as I have been suffering from persistent neuralgia on my left flank in the abdominal section as of January 21st this year.
So far I've had a few thorough MRIs and a spinal angiogram done to confirm the specifics of the AVM.
The doctors have said that the less invasive options available - embolization and radiation are not viable as the risk is too high. The AVM moves when I breath and it is located inside my spinal cord.
The options I have available are microsurgery, cyberknife or waiting to see what happens.I not very keen on microsurgery, as it is too invasive and it feels to risky as this point. I am chasing up options for cyberknife now. It is difficult to wait as I taking medication for constant pain, both of which is are constraints to leading life normally or pre-AVM health. I would really appreciate any advice or insight on this...or if there's anyone who'd ever had this.
I am glad to hear that you are doing so good, sorry for the long time it took to answer. Wow that is a great story 98% and walking almost normal, something that most peole take for granted and the only time you rhink about it is when you can't do it or when it hurts when you try. How have you been lately, are you able to run now? ;) Keep us posted and enjoy the holydays. Dale L Wamsley Sr said:
Edmundo, I had one from T-3 to C-3. It was treated by a Interventional Rdiologist in Tucson Az. He used an Angiogram an glued it shut it took two times but has resulted in 98% success in the majority of the pain and symptoms are gone and I can walk again without a cane. The only problem I have left is headaches at the base of my skull and no one at this time seems sure where those are coming from. My prayers are with you dale
Don't worry I would never think that, I have said it before this is a place where we can talk to someone that can actually understand. It is always better to talk to someone that has gone through this before, someone that may have similar pains someone that has been in a wheelchair and that understands that it is not just not moving your legs. It comes with every thing else that that entittles... hey Ronald when ever you need a helpful ear just come here and unload. I'll try and conect more often and try and be here for you.
RONALD HUMPHREYS said:
OK EDMUNDO YOU MUST THINK im mad wrighting all the time forgot to tell you these pains im geting now has realy started bothering me the last twelve months but tonight are really bad iv been in a wheelchair since the opp in 2003 i cant walk or stand which makes it worsei went for an mri about 2006 they said there was nothing wrong but im still suffering because i dont no what im doing on this compter please dont think im a nusence on this all the time it justs help a bit ervry thing is far from here and the docs around here dont now enogh ron north wales united kingdom
Try and stay strong, I always said that as long as I knew what I had I could prepare to figth it. Keep up the fight don't let it get you down always say to your self that you can beat this and that it is not stronger than you. Elena said:
Hi, I also have spinal AVM, a huge one, it seems from T to C1. I still dont know exactly from which toracal vertebra, but I will get the details soon. All I know is that mine starts on the left side from the aorta / heart area and keeps till the brain stem, part of it is inside the spine.
No worries about the delay in response...thank you for responding though.
I am always amazed at the courage and tenacity of the members here, I would say that in comparison my pain and AVM is not as bad as some of the stories here.
I am so glad to read that you are walking, I can't imagine how difficult it has been/ is for you.
Again, thank you for responding. My prayers and best wishes. And, also, if you need any kind of assistance...please feel free to ask, I will try my best to help.
Nazneen
Edmundo Rodriguez said:
Hi, Nazneen
Sorry for the long time it took me to respond, I can understand how you must feel I too can feel the AVM some days more than others. I was left with almost the same prognosis as you. Radiation and Micro are to risky I was just left with waiting to see what happens. I have a great team of doctors, but I feel that all our hands are being tided. The good news is that i have regained a lot of my mobility I can now walk with a cane and for more than 10 minutes at a time. I too have to deal with the pain medication, muscle relaxers, and nerve pain. I tell people that it is amazing at the things that the body can get used to, including living with pain. There is not one day that I (we) don't have pain. Well I seem to have gone on and on, if you need anything or just need someone to talk to let me know and I will try to help
Nazneen said:
Hi
I have been diagnosed with Type II intradural spinal AVM in the T7 area inside my spinal cord. I am currently looking into options of treatment as I have been suffering from persistent neuralgia on my left flank in the abdominal section as of January 21st this year.
So far I've had a few thorough MRIs and a spinal angiogram done to confirm the specifics of the AVM.
The doctors have said that the less invasive options available - embolization and radiation are not viable as the risk is too high. The AVM moves when I breath and it is located inside my spinal cord.
The options I have available are microsurgery, cyberknife or waiting to see what happens.I not very keen on microsurgery, as it is too invasive and it feels to risky as this point. I am chasing up options for cyberknife now. It is difficult to wait as I taking medication for constant pain, both of which is are constraints to leading life normally or pre-AVM health. I would really appreciate any advice or insight on this...or if there's anyone who'd ever had this.
