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AVM Survivors Network

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#1

I had an incidental finding/diagnosis of AVF in my spine at T12. I am a healthy 54 year old woman with no symptoms. I had an angiogram 2 weeks ago. The neurosurgeon said it was not an AVF but rather, an AVM. He said that it was too risky to fix because when he tried embolize a vein, it immediately paralyzed my left leg. He did the full angiogram so that he has the full picture but recommended that I continue to live my life and hope that I am symptom free as I have been. It seems to be very rare to have this diagnosis after being symptom free. I am wondering if there are others out there who have had a similar situation. I am also wondering if it’s worth taking the angiogram results for a 2nd opinion. I am being treated by very reputable endovascular neurosurgeon in NJ. If I go for a 2nd opinion, it would likely be in NYC. It looks like Dr.Solomon at Columbia would be the right doc. On the other hand, if I’m symptom free, should I even think about risking the embolization knowing that there’s a good chance that it will cause paralysis?


Welcome, Broder18
#2

Hello @Broder18,

Let me be the first to welcome you to this forum. I think you will find this to be a wonderful resource no matter how you decide to proceed in dealing with your AVM.

My very best advice to you is:

  • Find a Neurovascular surgeon who is well experienced in treating Spinal AVMs
  • Get a Second Opinion
  • Become as well informed as you possibly can about AVM’s in general and yours in particular

A decade ago I was 54 years old and ‘healthy’. Just like you. I kept fit by moderate weight training three times a week and ran a treadmill every night for an hour & a half while watching TV. Two years later, I noticed the first symptom of something being wrong. It started as pain in the toes of my right foot as if suddenly I was wearing a shoe that was too small for my foot. Then I experienced the same pain in the toes of my left foot. I didn’t recognize them as ‘symptoms’ of anything. To me, the pain was just a baffling annoyance. As the pain morphed into numbness and tingling and started working its way bilaterally throughout my feet and up my legs, I started seeing doctors. Then specialists. Undergoing all types of tests and therapy in an attempt to combat the ever increasing spread of symptoms up the lower half of my body. I was misdiagnosed and treated for all sorts disorders – none of which I had of course. The doctors and specialists I had been sent to were left scratching their collective heads!

Unlike you, I didn’t know there was an AVM located at the T11-T12 area of my spine causing damage (some of which, I have been assured by neurovascular surgeon, is irreversible due to the late diagnosis).

It wasn’t until eight years after the onset of symptoms that my AVM was discovered. In the two years prior to its discovery in April this year, the symptoms had manifested exponentially. My choice was medical intervention or face imminent paraplegia. I chose surgery over embolization as it was the very best course of action for my particular AVM with the least chance of needing any future intervention.

One day, I hope to be able to walk unaided again.

I wish you all the best in your decision-making process and you will find great support from the group here at AVMSurvivors.

Brent


#3

Hi Brent,
My AVM symptoms started in 2009 by a back pain and a bit of leg stiffness .my main avm is located In my spacula at level t2 to t5 .the extention of this AVM goes all arround the spine between t2 to t5.for reasons I ignore they decided to operate me a first at level t5 after an angio and a second time at level t2 after a second angio wish did not show any AVM .And with reasons they found more avm at this level .i don’t know why they did not operate me or do any embolisation at my main avm located in my spacula and decided to go with a surgery at the avm extremity’s located close to my spine … now almost a month after my last surgery ,I don’t see any improvement and still feel that the stiffness and spasm are still increasing slowly .
Mean while I am on hold to see what decision will be taken for my main avm located in my spacula whether a surgery or an embolisation . I am using a cane and my walking is limited due to the symptoms of stiffness and spasms .the surgeon now is trying to stop any further deterioration while he is septic on any recovering ,only time will tell …last word you are absolutely Wright about time and having a surgeon with experience .


#4

You correctly need additional opinions before making any decisions. My AVM was at L1 It was embolized but another leak developed after a few months later and I had surgery.

Dr Solomon is a good choice. I used

https://www.nspc.com/physician/john-pile-spellman/

and

https://www.nspc.com/physician/jonathan-brisman/


#5

My husband was diagnosed pretty much incidentally like you since his symptoms were really mild, but many doctors told us his symptoms would get worse fast, so they recommended taking action. To make it short, he had about 5 unsuccessful attempts of embolization, then he had a surgery done (at Barrow Neuro - Dr Lawton and his team) and they were able to successfully remove his AMV T10 level. This was about 5 months ago. He still feels his feet a bit numb, bladder gets lazy from time to time but overall he is doing great. Definitely get a second opinion, at least to find a good surgeon on your side in case you start having symptoms. All centers in the Baltimore-DC area told us that my husband case was inoperable, that was way too risky to go to surgery, but luckily things were different. Cristiane


#6

Hi Broder18. My AVM was diagnosed in the mid-90s and I was advised to ‘leave it be’ and ‘go away and try to live life as normal’ just like you. I have brain AVM and its in a difficult place to get to. So the neuros felt any treatment would be highly risky. I’m also in the UK and we’re a bit behind the USA in the treatment of these things. Fortunately for me things are moving on all the time and my neuro now thinks GK may be an option for me. I’m having tests currently. All the best. Lulu x


#7

As a 54 year old, who just discovered a brain malformation and has 5 aneurysms associated with it, I want reach out and say hello. I can’t address your specific question as my treatment is vastly different from yours but I wanted to reach out and connect on some level with you. Wishing you the best as you explore the best options for treatment and gain support during the discovery and treatment stages of your disorder. I’m so grateful you have the advice and wisdom of people who have gone before you as well as a competent medical team.