Anyone with spinal cord AVM?

My AVM was in my spinal cord, T-1, T-2. It was obliterated with embolization. Still have an aneurysm that was embolized at the same time.


Anyone else here with a spinal cord AVM?

Tori
Welcome to the site ! try this
http://www.avmsurvivors.org/profiles/members/search?name=&country=&location=&q20_start_month=0&q20_start_day=0&q20_start_year=&q20_end_month=0&q20_end_day=0&q20_end_year=&q31=&q36_start_month=0&q36_start_day=0&q36_start_year=&q36_end_month=0&q36_end_day=0&q36_end_year=&q33=spinal+cord&q34=&q35=

Thanks Gordon - and wow, thanks for that list too. :slight_smile:

I have a spinal avm c2 c3 c4 I have been fighting for about 12 years waiting for next angiogram to see how it is doing.

Jeramy - why is it taking so long to be able to get another angiogram?

Jeramy Williams said:

I have a spinal avm c2 c3 c4 I have been fighting for about 12 years waiting for next angiogram to see how it is doing.

I have had several through the years and several surgeries and treatments just got to have another angio to check up on it

Tori said:

Jeramy - why is it taking so long to be able to get another angiogram?
Jeramy Williams said:
I have a spinal avm c2 c3 c4 I have been fighting for about 12 years waiting for next angiogram to see how it is doing.

Thanks, Gordon, was just about to suggest that.

Hi Linn,

Just one embo, both the AVM and the aneurysm at the same time.

Hope they can get the other 30% of your remaining AVM this next time around for you.

Linn N said:

Hi Tori!
I have a spinal avm T12-13. It was 70 % obliterated with embolization in october and in a few days i’m going back for another embolization. Have you had more than one embo?

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% releived and the chance of a bleed out is to great to not have them repaired. I would rather walk around with these headaches I ahev 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. 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

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 insight or advice. Thanks. :slight_smile:

Thanks for this. :slight_smile:



Gordon D said:

Hi Nanzeen,



Welcome to the site.



It moves when you breathe?!? Yikes. And it never occurred to me that an embo could be more invasive than micro surgery.



I have neuralgia like you have on your trunk on my entire trunk starting at just above the arm pit area and also all the way down my left thigh, leg and foot, and also on the right leg and foot.



I’m glad there at least some treatment options available for you. I’ve only had embo, so I wish I had something to offer that might help in making your decision, but my experience is rather limited in that way. I wish you all the best in making a choice and in the success of the treatment though.



Keep us posted on what you decide to do and how it goes for you.



Tori

i have spinal avm..and i used wheelchair and have bladder problem

Hi Norman!

I'm so glad you came to the site and have joined us - it's always a pleasure to see you around Facebook (I'm Victoria on your friends list =) ). I'm sorry it's necessary for you to need to join us, but since we're stuck with this we are so fortunate to have this site.

You'll find many caring and supportive people here, so I hope you'll feel at home. We also have a spinal group if you'd like to join that: http://www.avmsurvivors.org/group/spinalavf

Tori

Heh, Norman - I noticed that you've actually been on the site for a while now.

Don't worry about me, I eventually catch up. =-)