Spinal AVMs

I was diagnosed with a spinal AVM C-2 and c-5…and would like to know if there is any people that were diagnosed with somethinig similar just to know that there is someone out there that migth have gone through the same thing.


I have a spinal AVM within my spinal cord at the base of my brain from C1 down past C2. I was diagnosed in 1989. I would love to chat with you and share experiences.


That would be great Kim, i was just diagnosed last year but it feels like for ever…

Hey guys! Just wanted to point you to a few other members that I know have spinal AVM’s.

Jenspinalavm & Sheri Melander-Smith. You can find them both by searching their names on the member tabby.

Also, I just started a group for Extremity AVM’s to help all of the “no-brainers” better find each other. Be sure to sign up for that group as well.

Good luck with finding the support and info for your particular location!


1 Like

Well Thank You and i will surely look for them…

hey, i have an avm in my brain stem


I have a few questions for you. If you find you don’t want to answer any of them, that is OK.

What are your symptoms? What bothers you the most? Have you had a bleed? Has your family been able to cope and understand? Have you changed in anyway, like your physical and mental abilities?


I don’t mind at all if we can’t talk in here were else… thankfully I have not had a bleed my angiogram showed three different anurisms, but they were embolized on my first embolization… At the begining all that I felt was my right leg go numb… lost bladder control, bw control and after less than a month after the first symtoms appeared i was paralized from the chest down. I never let it get to me at first i could no take more than two steps without falling, but all I could do was to get back up called my wife not to help but to watch that noting else happened… Because they prescribed steroids to get the swelling down from my spinal cord (i was taking 8 mgof dexamethazone) i gained closed to 50lbs within a month… i have been fit most of my life… i had not seen the inside of a hospital before this and I was 30 when I was diagnosed… i love to dance and the hardest think i have to deal with, I lost my ability to walk for a few months have been goin to therapy and I am down to walk with a cane but I can’t stand for more than a few minutes and I have balance issues… another one of my problems is that if I am not looking at my feet I do not know where they are… my family has been more than supportive, but I cant really talk to them they are too scared of death and any thing having to do with hospitals or an illness… and to my two littles girls (7 & 8) all they know is that their daddy is sick and that they have to keep an eye out for him… I know that I will have to explain every thing to them at some time i just don’t want them to affect them at such an early age…

Kim Palmer said:


I have a few questions for you. If you find you don’t want to answer any of them, that is OK.

What are your symptoms? What bothers you the most? Have you had a bleed? Has your family been able to cope and understand? Have you changed in anyway, like your physical and mental abilities?


hi jaszi hope you are doing great today keep hopes up and hope that every thing goes good

Jaszi Rose said:

hey, i have an avm in my brain stem


It is good to hear that you haven’t bled. How did you find out you had an AVM? Usually people find out because they bleed. I’ve heard some AVMers were in for other medical reasons and stumbled across their AVMs. Not a nice surprise.

I can’t imagine what you’ve been through with your paralysis it’s so frightening. My AVM makes me a possible candidate for quadriplegia. I don’t think I could deal with that. I don’t have anyone that could take care of me. I take care of my Mom. She lost her right leg due to diabetes almost 2 years ago now. She has a myriad of other health problems so it was very intense for the past 2 years. She was in and out of the hospital about a dozen times. When she was at home I had to help her with just about everything. Thankfully, she is finally getting some of her strength back and can transfer to her wheelchair without much assistance now.

I haven’t suffered any major paralysis but my right arm and leg have been numb for sometime now. When you talk about not knowing where your feet are unless you’re looking at them… my experience has been similar. Back in 2000 when I bled last, I had a hard time walking (and talking) for quite awhile afterwards. I couldn’t control my legs without concentrating hard about it. I called them my Frankenstein legs and my right foot would drop so I would trip over my own feet. It still happens sometimes, especially if I’m tired.

How did you keep your spirits up through the paralysis?

I was also on steroids and I ballooned up too. I gained about 80 pounds. I had always been slim if not downright twiggy until then. I’ve since lost the weight; I did the South Beach diet. Steroids are a catch-22. We need them to reduce spine and brain swelling but they make you ravenous and even if you don’t pig-out, you still gain weight. My mom is on steroids as well and probably will be for a long time. With her diabetes, lost leg and steroids we have a lot to balance.

It’s so good to hear you are walking again, even though with a cane. I’m sure you’ll be throwing that cane away before you know it. You sound like a real fighter. I have movement problems somewhat when I’m tired, which is almost all the time. I always look down when I’m walking so I don’t stumble over my own feet so sometimes I bump into things. I also have problems standing for long periods, like doing dishes. So now I do a few and then go sit down and finish more later.

My Mom is great, she sort of understands but she has her own pains and problems to deal with. What my biggest daily problem is is that I have hyper-audio sensitivity. I do not do sound well at all. It totally drains me. Loud unexpected sounds are physically painful to me. If there are many sounds in my environment, I have a hard time concentrating on doing the simplest of tasks.

My boyfriend really doesn’t understand. He tries to I think, but since our AVM’s can’t be seen, like a broken leg in a cast, I think people think there is nothing wrong.

It is sad for your young girls to have to deal with this, but children are stronger than we think. I know they will be fine because they have you for a Dad. Don’t let it get you down.

Sorry, I’ve written a novel here. It’s been awhile since I’ve talked about my problems. I thank you for sharing and listening. Write when you can.

Hi kim

I’m glad that you can get it off your chest. Know that I will always have a listening ear for you when ever you need it. I also whan to thank you for listening to me. I feel very lucky to have my ex wife still in my life she has been my angel… we had separated abot six years ago, but decided to remain friends I had kept the girls and about three years ago she was in a very bad accident and i had to take care of her. She had a shattered pelvis, two broken ribs and a neck injury. She is a strong girl. So we decited that we all lived at the same house for this would be better for the kids… to see both mommy and daddy at home. She made a full recovery several months later and started to work we had a decent life when i wanted to go out she watched the girls when she went i stayed home…

When I got sick she was there by my side every step of the way. The way my AVM wwas dicovered was i went to the doctor for numbness on my rigth foot, he could no find anything wrong with me (pull mustle, damaged nerve) so he sent me straigth to a neurologist. The neurologist at first though that it migth be some immune deficincy or a generic problem, because my dad and my grandfather both had a limping problem. He order like 10 different blood test and he sent me off to an MRI, and sure it was an AVM he said it was in my upper torso about a fist size.

I ha never heard of AVMs before so i got on line and research as much as posible on the subject.Within a week of the diagnosis I lost bm, bladder and leg control… but i have always said that i would not let it get one over me, so every time I fell I laught it off and got right up. Also thats when I was prescribed the steroids… and let me tell you something you have to be really carefull because sure they did helped me to move and got my spinal cord to unswell, but they reack havoc on my immune system. It got destroyed so be carefull wiit your mother…

I just can’t imagine having to take care of saomeone else while going tru this… you must be a very strong person. Taking care of my little girls is a bit of a challenge having to cook them dinner, making sure they get a shower at nigth and having to chase them around just drains the little energy i have. But i can’t complain they are very good kids and for the most part they try to help… when they are not getting their little “Attitude” problems pre teens and all of that. They make if fun, i just love to tease them till they get mad… they look so cute.

Thankfully I have a good family my mom and dad are the ones that have being helping financially and a few of my siblins here and there. But most of the burden has fell on to my parents. I have being having a hard time with the whole disablility thing. Apply… get denied… apply again… have to wait. but its all good Im alive and for the most part in good health. Other than the constant pain, but you learn to live with that its just pain.

Well thank you for listening. Is good to be able to talk to someone with out them freaking out… and knowing they understand. Hope you are well and if you have another novel i’ll be glad to read it.


Sounds to me like you two are still married. Not many divorced people would help each other out like the both of you have. And not many divorced parents can pull it together for the children. I commend you and your ex-wife. Your girls are lucky to have such caring parents.

You never had any other symptoms except for your numbed foot before the embolization? If I may ask how old were you when that happened?

Yes, even doing simple chores like dinner and dishes takes all my strength as well, but like you said it is worth it when our loved ones appreciate our efforts.

I know the steroids are bad, it is so hard to balance Mom’s different medical needs against the others. She has a great doctor and I’m with Mom during all her doctor visits. I ask loads of questions, and I worry if I’ve asked all the right ones, but in the end we do have to rely on the doctor’s professional opinion.

Your attitude is inspiring. Yes, we’re alive and yes we have the pain. I look back and sometimes I don’t think I can go another 20 years with the pain, but I’ve already done 20, so that’s something.

Family, it’s important. I don’t know where I’d be without family. In our family sometimes we fight like cats and dogs but at the end of the day we are there for each other. We may not understand each other sometimes, but we’re family.

I know for a fact that the folks out here have been invaluable to me, like a second family. Even if I’m not active on the forum I still get the messages in my email. Like you said it is nice to talk with others who know what you’re talking about, have experienced it themselves, don’t freak out on you and at the same time let you freak out when something is bothering you.

Take care of yourself and your girls. :slight_smile:


We are glad you have found this site but not glad that you have an AVM. This site has many people just like us who have ‘been there’. Do not worry about your spelling, we all know how to read spelling mistakes, and even those of us (like me) who only know english, make spelling mistakes all the time. Even so you had none.

You are just as strong! Do not ever let anyone tell you different. There have been many medical advances over the years and many AVM patients have been cured.

What have been your symptoms that you did not take seriously? Tell us about yourself. I have found that talking to others who have the same experiences is very helpful somehow.

I will pray for you and that your procedure goes well.


Hi Kim

Hope you are doing well today, yeah alot of people tell me the same thing towards my ex, but I think you should always do what is best for the kids. Dont take me wrong I still have lots of love for the exwife and I did not want my girls when they are older why I didn’t help their mom… and we will always have to be in each others because of our kids. When we separated I decided to do it when we still loved each other, so that when our kids saw us together they wouldn’t see us figthing. Now she is the best friend I have ever had.

Ever since I have been a kid I had chest pain, the doctors sent me off to get EKGs. And since those always came back as normal they always used to say they were nothing but growing pains. My back in between my shoulder blades has hurt for as far back as I can remember. But also doctors just said growing pains… nice doctors rigth.

I was 29 when everything just started to go bad. At first my foot just dragged and by the endit was like you said frankenstain leg… well I used say it was dead weigth. Funny, I turned 30 in the hospital it was ok my brother sneaked in like 4 boxes of pizza into my room.And my sister baked a nice little cake and all of my family sneaked in. It was a fun day the parts I can remember. For some reason I have been forgeting a lot of things, not really important things, for example how to spell some words and useless facts.

I hope that your mom is doing better. And I just think you are such a strong person, I don’t think I could deal with both of the thing you are dealing with. Tell your mom that my mafily and I will be praying for the both of you.

Hi Linn
Im so sorry about your AVM. And Im glad you found this website… It is so good to talk to people that have gone through some things that we are going through. Keep strong and know that we are here for you. If only all you need is to vent some frustration, we will always have a good word for you.

Linn Norén said:


I was diagnosed with a spinal AVM, T12, two weeks ago. I’m from Sweden and the specialists here found it too complicated to treat so they are sending me to Paris for embolization in october. I have had symptoms for years but never really took them seriously. I never heard of anyone who has this before so i’m very glad i found this website. I read your posts in this discussion and i’m amazed how strong you both are. I would love to talk to you and share experiences.

(sorry for spelling mistakes. i’m not used to writing in english!)

Hello. I am new here and just found this post. It is an older post but I had to reply. I had an avm in c-2 c-3 area in the cord. Surgery was in 1993. I have had many months of therapy and have symptoms somewhat like a stroke patient. I live in Cincinnati, ohio I hope you are doing well. Looking forward to keeping in touch.

Hi Edmundo and everyone else.

My AVM was in my spinal cord, intramedullary, at T-1, T-2. I also have an aneurysm in the same area. They were both embolized three years ago. The AVM was obliterated, but I still have the aneurysm.

The AVM ruptured in 2002. I didn’t know I had it, and I had been given a mis-diagnosis of cavernous angioma. I had been told by several doctors that it could not be removed without making me a quad. I kept looking for someone to help me and in 2006 I had my first angiogram. That’s when it was discovered that what I really had was the AVM and aneurysm.

If I hadn’t kept looking for a doctor who could help me I may never had known what I really had, not had the embolizations and it is possible either or both of them would have ruptured again. I was so relieved to find out what was really going on.

The rupture caused a lot of damage, mostly to the left side of my body. Everything from just above my chest is numb, my leg and foot are very weak, my foot drags sometimes, I have a lot of neurological pain, my ability to feel heat and cold were altered, I have a hard time regulating my body temperature, get very tired when standing or walking and have spaciticity in both legs, feet and abdomen. I get around the house pretty well with a cane or holding onto things, and use crutches for distance walking.

The embolization surgery caused the symptoms to worsen somewhat, and I also developed the same symptoms on the right side of my trunk, right leg and foot.

I have angiograms every three years to see how the embolization of the aneurysm is holding up, and to see if the AVM has regrown.

The plan is to keep the aneurysm embolized for the rest of my life, because the neurosurgeons have said that to try to remove it would probably make me a quad. They’d also have to go through my chest, remove some ribs and deflate a lung to reach it. THAT is something I definitely want to avoid.

For the most part I do alright - you know, you learn to live with what you’ve got, to do things differently when you need to. But sometimes I get a little frustrated because it seems that I just don’t have enough energy and strength to do much, certainly not what I want to do. Just trying to do stuff around the house, cleaning, taking a shower, etc., takes so much out of me. But I generally have a good attitude and outlook. Mostly, as long as I don’t have another rupture, and don’t have another AVM or get another aneurysm, I’ll be happy.

I started a new thread, asking if anyone else here has a spinal cord AVM - I had looked around some, but didn’t see this thread until after I’d posted mine. Oh well. :wink:

I’m sorry we’ve all had, or have AVMs, and that we’re meeting like this. But since we do, it’s good to encounter other people who have the same thing as me. I’m so glad someone posted about this site at another one I’ve been to!

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!


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.

helo torri

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 doing better, and i’ll be here if you need to talk or just blow some steem off.