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Comment by Michael on January 31, 2012 at 12:53pm

Comment by Tina on January 31, 2012 at 11:11am

Michael, the important thing is if they can eliminate the AVM, it will restore your circulation to normal and eliminate the swelling in your legs and ankles. My AVM located C3 thru 6. It has been 18 months and I am slowly regaining the use of left arm and legs back. I am walking, have spascity in legs and arm along with the numbness, tingling, etc.. My diagnosis was Spinal Stroke which lasted 6 weeks then Transverse Myelitis which lasts two years. Sounds like you will have use of your arms and yes Nerve Damage in legs from the loss of blood flow. But Peripheral nerves do regenerate. I saw my Neurologist yesterday and they are very happy with my progress. Keep in touch on this site and we will be here for you. It will get better, nerves regenerate very slowly.

Comment by Tina on January 31, 2012 at 11:01am

Comment by David D on January 31, 2012 at 5:51am

Every case is different. In my case, the nerves had been damaged due to reduced blood flow as I understand it. The remaining symptoms suck but you deal. I think you're lucky they caught it and are on top of it. Reading some of the cases on this website I feel lucky and a bit guilty for whining about my problems. Good luck Thursday. Btw You are the first person I have found with similar facts to me.

Comment by Michael on January 30, 2012 at 9:25pm

So, You still have some of your symptoms??? Thats My fear...Maybe I'm expecting too much!!

Comment by David D on January 30, 2012 at 8:56pm

No worries. Your experience is very similar to mine. My numbness started in August 2008 in toes and progressed to mid thigh. Mild tingling. I could walk and drive. Thanksgiving 2008 it leapt to my mid stomach in matter of hours. Misdiagnosed as TM and then a spinal Cist. My avf was discovered at T9 and then glued shut via spinal angiogram. Woke up feeling like I was sitting on grapefruit. I walked out in 2 weeks with a walker but used a cane a little. My current challenge is spasticity which impacts my gait and neuropathy from mid thigh down. Ankles and calves get sore and tired. All in all. I feel very lucky. Happy to provide more detail if it will help. Hospital for Special Surgery in NYC.

Comment by Michael on January 30, 2012 at 7:08pm

Sorry Didnt realize I was posting my story on this thread...
I am scheduled for surgery this Thursday. I would love to hear from someone that has had surgery to remove the AVF...
Do not know what to expect... Recovery, Operation, etc...

Comment by Michael on January 30, 2012 at 8:23am

Hi all, July of 2010, I started feeling numbness in my feet, when the numbness did not leave, I sought help from my family Doctor.
He then began doing routine tests and blood work, checked for diabetes, etc etc.. He referred me to a neurologist, he repeated the same tests over a period of several months...

In the meantime, my symptoms progressed, numbness in feet, calves, burning in thighs, feels like 10,000 hot needles going through my skin everytime I moved my legs, worse at night, going to bathroom got more difficult, urination, constapation, feels like I have a tennis ball stuck in my rectum...
Some leg weakness..

One night my youngest daughter was walking on my back as she has done since she was young..she is 15 now, when she stepped on the center section, I felt blood rust to my feet.

My next neurologist visit, I shared that with Him, He immedieately orders MRI on Thorasic w/o contrast, they found a spot, then orders MRI on Thorasic with contrast, and alos Lumbar, this confirmed spot.. He then told me I had an AVM..

At this time he ordered a Spinal Angiogram, this located the AVM perfectly.

I met with Neurosurgeon this past Friday, and I am set for Surgery this coming Thursday...

In the past two weeks, walking has become very strenous, and my feet and ankles are swelling very badly!!!

I am excited, nervous, scared, happy, sad,,,just about every emotion there is, I have concerning this surgery!!!

Thanks to this site I can read about others like me!!!

Comment by David D on November 30, 2011 at 8:26am

On another front: anyone know anything about acetyl-L-carnitine and its role in nerve regeneration?

Comment by David D on November 30, 2011 at 8:21am

Can anyone explain the difference between a spinal AVM and a spinal AVF? AVM symptoms seem much more serious. I had a spinal angiogram that repaired my AVF at T9 in 12/08 at the Hospital for Special Surgery in NY (Dr. Pierre Gobin). I am still dealing with neuropathy and spasticity of the legs resulting in a awkward gait and leg pain. Anyone out there have a similar situation?

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