Spinal AVMs

I have HHT and am having a lung AVM embolized in a few weeks. If you don’t mind my asking, what symptoms did you have with the spinal AVM? I have had back pain/numbness since my teens (I’m 36), and recently I’ve noticed a dull ache where my right leg meets my torso. I at first dismissed it as “soreness,” but now I am wondering! How did everything go with your embolization?



Linn said:

Hi!

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.

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

Hi all,

I am from Singapore. I was diagnosed with spinal avm, type 2 at T10 in July 2016. I have seen many neurosurgeons and read many medical journals after being diagnosed. Finally, I found a good neurosurgeon to remove my avm. I’m 3 weeks post op now. Experiencing weakness and numbness in right leg. However, I am glad that I am able to walk just that abit slow. Hope to improve with Physio.

I will be doing 6mths post op MRI/angiogram to confirm avm is completely removed. Wish me luck!

I had a spinal avm diagnosis st 62 yrs old. We didn’t work so had open surgery. Mine was pretty high up so have basically no balance anymore. My surgeon was very informed about avms. I had my surgery at the General hospital in Hamilton Ontario Canada

I mean demobilization didn’t work. 3 months post op and lots of physio just barely walking with Walker but can’t stand without losing complete balance

I am 8 months post op. Had re-sectioning of cord from l1 to t 12. So glad to be walking. Using a straight cane now. But still no balance. Im 37 and went from working out and playing golf and tennis every week to working out by lifting dumbells while sit in a chair! Lots of life changes and adaptions. But keep me posted on anything that is new. Or any tricks you might learn or try in therapy to keep the balance. I just stopped PT, there was no more improvement. I have no feeling in the right leg and diminished in the right. I still have bladder problems and muscle spasms in the legs. And still have drop foot in both legs. I am going to get botox in my right calve to help with the spasms. I will let you know how that works. I did have my 6 month mri last month, AVM free! But now I have degenerative disc disease from l5 down (I am sure I have had it all along) but now that is causing sharp nerve pain.

Let me know how the healing is going. I would love to hear about the process of other and success. I love my team of doctors, but they do not have any answers for me.

Hi, my symptoms started in March with upper back pain so bad the only way I could stand it was to lie on a heating pad. My AVM is on T5 I had two unscucessful angiograms and finally had surgery at a brain/spine clinic who specializes in this. The symptoms expanded like a train wreck and got worse daily - hands and fingers numb loss of strenght and dexterity, muscles in legs, foot and ankle so bad could hardly walk and the upper back pain severe. I am now four months into recovery walking 4 miles/day and doing two sets of hand exercises and now working with a personal trainer. See improvement daily but is small improvements. You are wise to go to a specialist these things are SO rare few have the skills to work on them. My surgeon has done 4000 brain AVM’s in 25 years and only 100 on the spine. So clearly those with us are “special” in a way we wouldn’t choose to be. I wish you well as you get your treatment and hope they successfully cut it off. Anytime you want to talk I’m Nancy M

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