AVMs (spinal in particular): what if I just do nothing at all?

Hello,


My spinal AVM was discovered accidentally and it's not causing me any terrible symptoms at this point. Is/was anyone else in a situation like this? If so, did you still seek treatment?

Also, I'm wondering from those of you with spinal AVMs if you've had symptoms all over your body or just below your AVM. My AVM looks to be about T-7 to T-12 (I've only had an MRI) but I've had lots of crazy neurological symptoms across my whole body for the last few years. Is it just a coincidence that I have the AVM? The only symptom I have that I think is/could be really linked to the AVM is bad leg pain.


KAK

I have a spinal AVM as well, c4-6. Mine was discovered only after I had hemorrhaged. I was also given the option of seeking treatment or letting it be. Since I had hemorrhaged, I knew that my chances of rehemorrhaging were greater. I decided to go for it. I have since been treated via laminectomy and cyberknife radiation; multiple embolization attempts failed due to the structure of my vessels. It’s a difficult decision and opinions vary widely on if/when you should seek treatment without symptoms. Many doctors felt that I should not seek treatment even though I had symptoms. What sort of symptoms have you experienced? Do you have a neurologist?

Hi Laura,

Thanks for your response! The only symptom I’ve had that the doctors agree is likely from the AVM is bad leg pain that I’ve had for about the last 1.5 years. Also, lately, I’ve had a little leg weakness, but nothing too bad. Besides that, I’ve struggled with migraines, small seizures, dizziness, numbness, tingling, sensitivity to heat, eye problems, autonomic dysfunction, etc. etc. etc. for almost the last 8 years. I’d be more willing to pursue treatment if I thought that the AVM was causing any of these problems.

I have a neurologist, but he is an autonomic specialist. He admits that he doesn’t know too much about spinal AVMs, but does not seem too concerned. He’s thinking of it like an aneurysm – plenty of people have them and they never burst, but when you know about it, you worry. I saw another neurologist who was not concerned whatsoever and a neurosurgeon who thought it was crazy for me not to seek further testing and treatment. All conflicting information.

I was actually supposed to move of the country at the end of January for my husband’s job, but we found out about all of this at the end of December and had to postpone. I just want to know if I’m ok to leave or if I need to stick around here for a while longer!

  • KAK

Hi Kathy,
I think that, as you are obviously and understandibly concerned about it, seeking the opinion of a neurosurgeon and a neurologist that specializes in vascular issues may be a good idea. I also got many conflicting opinions, and I think your decision really depends on whether or not you can let it be without obsessing over it. I knew that I couldn’t. Have you had an agiogram? Where are the rest of your symptoms? What is your pain like? I have chronic neuropathic pain following my injury. A neurosurgeon who sees a lot of these will be able to give you a better opinion on your risks. What part of the country are you from?

The neurologist and neurosurgeon I saw are both supposed to be “experts” in AVM, but that doesn’t mean that they’ve actually seen spinal AVMs too many times I guess. The neurologist was at Georgetown University and the neurosurgeon was at Johns Hopkins, so I would consider both of them to be reputable.

I haven’t had an angiogram. Both my normal neurologist and the JHU one said not to bother, whereas the Gtown neurosurgeon said I definitely needed to have one done. It seems like all doctors are very hesitant about the angiogram, saying it’s very invasive and somewhat risky.

My leg pain is like a deep aching/burning that can go the entire length of my leg or just part of it. I started having it on the left leg, but a few months later I started having it in the right leg as well. Both legs have NEVER hurt at the same time, which I find to be interesting. I used to have the pain almost every day (for over a year), but now I only get it a few times a week.

I’m from Maryland, so I feel like I should have some pretty good resources close by. However, like I said, the JHU and Gtown opinions have been complete opposites. I’m willing to go out to Rochester, if Mayo will see me. I’ve been waiting over a month to hear back from them.

Again, I would really advise getting a variety of opinions. I saw 4 neurosurgeons before I made my final decision. I also had my films sent to surgeons around the country with the help of my neurologist. I’m from PA, but I have been treated in Phoenix, AZ and Palo Alto, CA in addition to Philadelphia. I think the world of Dr. Spetzler and the team at Barrow in Phoenix. He is considered one of the best neurosurgeons in the world and has seen many AVMs. Because spinal AVMs are more unique, I decided to see the best and really do my homework. Since you haven’t had symptoms, you have time to carefully weigh all of your options.

Kathy K said:

The neurologist and neurosurgeon I saw are both supposed to be “experts” in AVM, but that doesn’t mean that they’ve actually seen spinal AVMs too many times I guess. The neurologist was at Georgetown University and the neurosurgeon was at Johns Hopkins, so I would consider both of them to be reputable.

I haven’t had an angiogram. Both my normal neurologist and the JHU one said not to bother, whereas the Gtown neurosurgeon said I definitely needed to have one done. It seems like all doctors are very hesitant about the angiogram, saying it’s very invasive and somewhat risky.

My leg pain is like a deep aching/burning that can go the entire length of my leg or just part of it. I started having it on the left leg, but a few months later I started having it in the right leg as well. Both legs have NEVER hurt at the same time, which I find to be interesting. I used to have the pain almost every day (for over a year), but now I only get it a few times a week.

I’m from Maryland, so I feel like I should have some pretty good resources close by. However, like I said, the JHU and Gtown opinions have been complete opposites. I’m willing to go out to Rochester, if Mayo will see me. I’ve been waiting over a month to hear back from them.

You have a avm in the same position as my son…though his goes down a little lower. We found it because he was having back pain about a year ago. He has had 4 embolizations. How old are you? He is 16 and it is very scarry. The leg pain is from the avm he used to have leg pain but the last embolization got rid of it. This is very rare and I have been looking all over for others with the same type of avm do you know what type it is they have numbers. His is a juvenile which means he has has it since birth and they are very hard to get rid of. I am praying that the Almighty will heal him.

Hi Shelly,

I’m sorry that you’ve had to deal with this problem with your son – I’m sure it’s been very scary. I’m 29. I haven’t had an angiogram yet, so I don’t know all of the details of the AVM, but according to the MRI, it looked to be about T7-T12. If/when I end up doing the angiogram, I’ll know more.

  • KAK

Laura,

Thanks for the advice about Barrow and Dr. Spetzler. I noticed on here that a LOT of people had seen him for treatment. I think I’ll give Barrow a call today to see if someone there can look over my films. I’d obviously rather have treatment close to home, but I’m willing to go wherever to get this taken care of, as long as the doctor is good!

  • KAK

Kathy,
There are not many people that I can find who have a spinl avm especially in the area that my son has his avm. Have you found out what type of avm you have? My sons is juvenile. Have you found out anymore information? Please keep in touch. Matt is doing pretty good now he has no real pain and can walk. He was trying to slide step but it hurt his back and I don’t want him to get any swelling. I wish I knoew how to keep that down when it happens. My email is shel35j@comcast.net. Also where do you live?

Kathy K said:

Laura,


Thanks for the advice about Barrow and Dr. Spetzler. I noticed on here that a LOT of people had seen him for treatment. I think I’ll give Barrow a call today to see if someone there can look over my films. I’d obviously rather have treatment close to home, but I’m willing to go wherever to get this taken care of, as long as the doctor is good!




  • KAK

Hi Kathy,

Something I’m curious about - if your Dr. doesn’t think the symptoms you do have are related to the AVM, does s/he have any thoughts about why you DO have neurological symptoms? Have you been tested for perhipheral neuropathy or any other possible causes? There has to be some reason why you’re having symptoms (pinched nerve? etc.).

I had an AVM in my spinal cord, T-1, T-2, intramedullary, that ruptured. I just think that, if it were me, I’d want to have an angiogram done, to be on the safe side. There are risks with any procedure, but I think I’d rather have the angiogram than to risk having a rupture if the rupture could be prevented by having some kind of treatment. But that’s just me.

Have you sent your films and reports to Dr. Spetzler? If you haven’t yet I highly recommend you do so. He and his ‘team’ are EXCELLENT.

For four years after my rupture I saw several neurologists and neurosurgeons - including an excellent, well known neurosurgeon at Stanford. ALL of them said what had ruptured was a cavernous angioma. And they said nothing could be done to treat it since it was almost right in the middle of the cord.

I was not willing to accept that nothing could be done for me and I kept looking for someone who could - I did not want to live with the possibility of another rupture. Finally I heard about Dr. Spetzler, and at that point I kind of felt like he was going to be my last chance - I thought if he told me nothing could be done that I might finally accept it.

Within four days of receiving my films and reports someone from his office called to tell me they didn’t think what I had was a cavernous angioma (also called a cavernous malformation). They wanted me to go there for an angiogram (there’s no one in the city or state where I live that can do spinal cord angiograms). So I went and one of the Drs. on Dr. Spetzler’s team did my angiogram - Dr. McDougall - and that’s when it was discovered that what had bled was an AVM, AND that I also have an aneurysm close to where the AVM was.

The next day they embolized both of them, and I am SO grateful to them for finding out what I really have and for doing something to help keep me from having another rupture.

I know there are quite a few excellent neurosurgeons in the US, but I can’t ever say enough about the care I received from Dr. Spetzler, Dr. McDougall and the Barrow. I’ve had three (or is it four? Can’t keep track anymore!) angiograms there and have to go back every three years for them to keep an eye on the aneurysm, to see if the embolization is holding up or has to be redone.

The aneurysm can’t be removed as they’re afraid it would make me a quad (they’d also have to go through my chest to get to it - through the sternum, remove some ribs and deflate a lung. The plan is to avoid that for as long as possible).

They are incredible, excellent there. If I were you, I’d at least let them look at your stuff and see what their advice is regarding having an angio and/or treatment or not.

BTW, the rupture left me with severe damage to most of the left side of my body. The Drs. at Barrow told me I was very lucky - I could have been paralyzed from it, or worse. I AM NOT trying to scare or frighten you. I’m just letting you know that I’ve been through a rupture. My left leg and foot are very weak, I have extreme neurological pain - I can barely stand to have bedding, clothing, socks, shoes, etc., touch me, my ability to feel heat and cold was altered and I have spasticity in my legs and abdomen that have to be ‘controlled’ with medication (I can’t get any sleep at night without it), and I walk with one, sometimes two, Loftstrand crutches. In the last year, year and a half I’ve also developed the same symptoms on my right foot and let, but won’t really know if it’s related to the aneurysm until my next angio.

So you can see why I want to avoid another rupture, and why I’m so grateful to have had the treatment and now don’t have to be nearly so concerned (hardly at all, really) about another one.

Shelly and Tori,

Thanks for writing. Incidentally, I just got a call from Reina at Barrow, who works with Dr. McDougall. She said that he wants me to have a spinal angiogram done and that I should NOT leave the country until I do (supposed to have moved for work about 1.5 months ago).

I’m a little concerned about the angiogram, but would kind of like to know the extent of the AVM.

I’m also concerned about any treatment. I’m just not sure that it’s worth it to me to undertake a risky treatment, when I haven’t had any symptoms. Obviously, many of the people on this board are proof that there is risk, but I wonder how many people live their whole lives with spinal AVMs and never know. This is something that I figure the people at Barrow can talk to me about, but I just don’t want to feel pushed into embolisation or surgery.

Also, I had sent my films to Mayo and just heard back from them last week saying that they will not take me as a patient. I was taking this as a good sign (they didn’t see much to be concerned about), but now I’m not so sure.

KAK

Tori said:

Hi Kathy,


Something I’m curious about - if your Dr. doesn’t think the symptoms you do have are related to the AVM, does s/he have any thoughts about why you DO have neurological symptoms? Have you been tested for perhipheral neuropathy or any other possible causes? There has to be some reason why you’re having symptoms (pinched nerve? etc.).



I had an AVM in my spinal cord, T-1, T-2, intramedullary, that ruptured. I just think that, if it were me, I’d want to have an angiogram done, to be on the safe side. There are risks with any procedure, but I think I’d rather have the angiogram than to risk having a rupture if the rupture could be prevented by having some kind of treatment. But that’s just me.



Have you sent your films and reports to Dr. Spetzler? If you haven’t yet I highly recommend you do so. He and his ‘team’ are EXCELLENT.



For four years after my rupture I saw several neurologists and neurosurgeons - including an excellent, well known neurosurgeon at Stanford. ALL of them said what had ruptured was a cavernous angioma. And they said nothing could be done to treat it since it was almost right in the middle of the cord.



I was not willing to accept that nothing could be done for me and I kept looking for someone who could - I did not want to live with the possibility of another rupture. Finally I heard about Dr. Spetzler, and at that point I kind of felt like he was going to be my last chance - I thought if he told me nothing could be done that I might finally accept it.



Within four days of receiving my films and reports someone from his office called to tell me they didn’t think what I had was a cavernous angioma (also called a cavernous malformation). They wanted me to go there for an angiogram (there’s no one in the city or state where I live that can do spinal cord angiograms). So I went and one of the Drs. on Dr. Spetzler’s team did my angiogram - Dr. McDougall - and that’s when it was discovered that what had bled was an AVM, AND that I also have an aneurysm close to where the AVM was.



The next day they embolized both of them, and I am SO grateful to them for finding out what I really have and for doing something to help keep me from having another rupture.



I know there are quite a few excellent neurosurgeons in the US, but I can’t ever say enough about the care I received from Dr. Spetzler, Dr. McDougall and the Barrow. I’ve had three (or is it four? Can’t keep track anymore!) angiograms there and have to go back every three years for them to keep an eye on the aneurysm, to see if the embolization is holding up or has to be redone.



The aneurysm can’t be removed as they’re afraid it would make me a quad (they’d also have to go through my chest to get to it - through the sternum, remove some ribs and deflate a lung. The plan is to avoid that for as long as possible).



They are incredible, excellent there. If I were you, I’d at least let them look at your stuff and see what their advice is regarding having an angio and/or treatment or not.



BTW, the rupture left me with severe damage to most of the left side of my body. The Drs. at Barrow told me I was very lucky - I could have been paralyzed from it, or worse. I AM NOT trying to scare or frighten you. I’m just letting you know that I’ve been through a rupture. My left leg and foot are very weak, I have extreme neurological pain - I can barely stand to have bedding, clothing, socks, shoes, etc., touch me, my ability to feel heat and cold was altered and I have spasticity in my legs and abdomen that have to be ‘controlled’ with medication (I can’t get any sleep at night without it), and I walk with one, sometimes two, Loftstrand crutches. In the last year, year and a half I’ve also developed the same symptoms on my right foot and let, but won’t really know if it’s related to the aneurysm until my next angio.



So you can see why I want to avoid another rupture, and why I’m so grateful to have had the treatment and now don’t have to be nearly so concerned (hardly at all, really) about another one.

Hi KAK…

I just had to respond to your post. My husband just spent 58 days in two hospitals due to a ruptured spinal AVM…his was T-10 to L-1. He became paralyzed from the waist down in a heartbeat. We are in PA and although the surgeon saved his life, he admitted he had only seen this a handful of times in his career. I would certainly pursue this with the physician I’ve been reading about in this forum…Dr. Spetzler. I’ve done a lot of reading about Mayo and Johns Hopkins. We are closer to Hopkins and perhaps IF my husband want to pursue a repair of this we will go there. He’s 72 but a very young, healthy 72.
He had all sorts of complications after the bleed; hence the long time in the hospital. From there he went to Moss Rehab under the care of Dr. Harry Schwartz. He’s made wonderful progress but he may never walk without a walker again…or drive. But that’s ok…he’s alive.

I don’t want to scare you, but this thing was a monster. He never knew he had it. Our family’s life changed in a heartbeat.
You have the knowledge of yours being there so you can protect yourself.
It’s so confusing when you get contradicting information, BUT, these things are NOT to be ignored.
Best wishes to you…
Take care of yourself and good luck.

Kathy,
I would recommend anyone with a spinal AVM see an Interventional Radiologist and a Neurosurgeon and ask them if they can glue them closed. It worked for me and although it took two attempts with angiograms my symptoms were 98% relieved and the chance of a bleed out is too great to not have them repaired. I would rather walk around with these headaches I have now than not be able to walk at all. My AVM was a result of an accident in the military in 1982 and grew from T-3 to C-3 and caused me to end up witha multitude of problems to the point I was walking with a cane and going down hill rapidly last year in 2009. The MAYO Clinic, Johns Hopkins and a lot of other clinics and hospitals are doing the procedures. My doctor was Creed Rucker here in Tucson az From Radiology Limited. HE is a wonder skilled docor.
Dale

Helen,
My son is 16 and has an avm probably about the size of your husbands…we really do not know the size but it is big and after 4 attempts we have only gotten a small portion with the glue. After the last embolization he has been symptom free PRAISE YAH for this wonderful event. But I am concerned and want to keep on top of it. My problem is the only way to see it is through MRI’s and my son is still young and I am not sure how much radiation I want him to have, so I am waiting on the DR. to see what they want to do. They say it is a marathon not a sprint we have to take it as it comes. I was in contact with Dr. Barenstein in NY but he really did not help or seem to be wanting to. I wish I could find someone to help and take an interest to tell me the best direction to go with my son. This is such a scarry thing. Someone on the other thread just lost their 12 year old son to an avm in his brain. Dale our Dr is an intereventional neurosurgeon. But he also said this is very rare and it is a learning experience.

Helen,
I would seek a second opinion if possible. Search the web contact John hopkins, Mayo Clininc, the hospital - St jude’s, Maybe they can help. The clue I couldn’t remember the name of it was calle donyx and Dr. Creed Rucker in Tucson az at Radiology Limited did a wonderful job for me.
My prayers are with you.
Dale

Shelly Cardamone said:

Helen,
My son is 16 and has an avm probably about the size of your husbands…we really do not know the size but it is big and after 4 attempts we have only gotten a small portion with the glue. After the last embolization he has been symptom free PRAISE YAH for this wonderful event. But I am concerned and want to keep on top of it. My problem is the only way to see it is through MRI’s and my son is still young and I am not sure how much radiation I want him to have, so I am waiting on the DR. to see what they want to do. They say it is a marathon not a sprint we have to take it as it comes. I was in contact with Dr. Barenstein in NY but he really did not help or seem to be wanting to. I wish I could find someone to help and take an interest to tell me the best direction to go with my son. This is such a scarry thing. Someone on the other thread just lost their 12 year old son to an avm in his brain. Dale our Dr is an intereventional neurosurgeon. But he also said this is very rare and it is a learning experience.