Am I the only one with this rare T4-7 AVM condition?
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Ed,
Definitely not. We do have a handful or more of active @Spinal AVM folk, some of whom may have their AVM around T4-T7.
I hope some of them will find your post and say “hi”. I’m a brain AVM chap myself.
Very best wishes,
Richard
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I had an AVM three years ago at T1 and T2 and had vertebrae removed in the neck C area including T2. I have never been the same since. I can get around in a walker but I can’t shower myself or stand on my own at all. I went for tons of therapy but the nerve damage had already been done before they operated. I was told by the neurosurgeon that the higher up the AVM is the more nerve damage you have.
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TQ Richard!
Sorry to hear this but u are still alive and well M’am! Guess some of us undergo life changing experience. And you can walk with the walking frame what a blessing! Looking forward to that myself! Blessings!
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Hi Richard,
In February 2020 I got an ITB pump implanted to reduce my spasm. I tried to update my profile summary, but not able to find a edit button.
Best regards,
Franz
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Hey!!! I had the Spinal AVM on T9 to L1 - it was tightly wrapped around my spinal cord. It has taken me a few years to recover but this past year, I’m feeling so much better - at least I’m joining life! Please know it will get better - mentally and physically - I had problems for years before they found it - most doctors told me I was crazy and there was nothing wrong with me. Being a women, we are quickly dismissed - it’s really frustrating to keep begging for help and no one will listen. But I was blessed and found a doctor that actually looked and as soon as he did the MRI, it was right there all along. I will keep you in my prayers - God is a strength like no other. Blessings Vickie
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Dear Franz,
Good that it works for you!
Blessings!
Vince
Dear Vikki,
TQ for reaching out to me! Appreciate it deeply! I am still undergoing physio therapy to walk again post 5 months. Today I do an assessment for intensive walking rehabilitation also. Do pray for each other! God Bless Your Kind Soul!
Shalom!
Vince
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Hi
I had a mid spine AVM too . Problems started early 2016 . Operated by July 2017. By then neural deficits were noticed in my lower limbs.
Spasms, spasticity and loss of balance and inability to raise my legs as before. I am still on aggressive physio and much better. Stopped using the cane recently. Getting in / out of a car is a killer. But am able to manage to out in full days at work.
The shower is still a dicey place. I still have spinal pain at the surgical site ( advanced open surgery) especially while BLT.
But I can tell you one thing for sure. This gets better!
We have to work consistently at it.
Prayers and Best Wishes
karthik
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Great to hear from you Karthik!
Blessings!
Vince
Thank you Vince!!
Greetings and Regards
karthik
Awwww, Shalom, remember it’s takes time - it took me three years. My biggest mistake was thinking I would be back to normal in no time - that was a joke - some people do I suppose but for me it took three years and a new feeling of what normal is for me now. So take each day and love yourself more - God does❤️. Also, Remember that most people around you - family and friends will not understand what you’re really going through. But that’s ok because there is no way for them to understand unless they have gone through it. I’ve met some awesome people on this site that really helped me. Please take care of you and move slowly through the process - I don’t know how long it will take you to regain strength and some abilities back but it will come in time. I’m serious when I say it took me a long time. I look forward to your continued healing. Thank God the doctor found it and you’re alive moving forward. Blessings and many prayers. Vickie
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Guys, can I just say “thank you” for rallying round Vince so quickly. It really helps to have people share their experience.
THANK YOU
Richard
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Shalom Vikki! U are indeed an Angel in my midst; one who came at a time I need some inspiration moving forward! Today I start on the next stage of my rehabilitation at SPD Ability Centre where I was assessed thoroughly. I came through with flying colours and will soon begin intensive OT and PT sessions there! It’s. Long Long road to Freedom. The winding road is deep and Long. I will walk for my Lord Jesus! Amen
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Dear Richard and fellow AVM Survivors,
A big heartfelt THANK YOU to everyone for appearing in my life at just the moment I needed to pick myself up and press on! I just finished a great assessment at Singapore Physically Disabled Ability Centre where I will be starting intensive OT and PT to get back on my feet firmly, to walk and return home from the nursing home I am now in. The road ahead is Long and winding but I am determined to soldier on and I thank Heaven for giving me new friends in all of you! Rock on!
Blessings!
Vince
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To EdDroid1065,
Hi,
My operation per AVMs at T2 and T5 was on Dec 18 2014, my 64th birthday. The downhill probably started when I was a teenager but was so slight and gradually increasing that the symptoms were annoyances for a fairly active person and only became something that needed addressing in 2003. Even then though a concern I was still biking to work ( four miles and over a 500 foot hill) and it was not till late September of 2014 that I realized that the issue was really serious. By Thanksgiving, and after three more neurologist, I finally found one that said while I was waLiking out of the office, “wait a sec, let me try that leg-knee reflex test again” when the light bulb hit and diagnosis was on its way. A couple of scans IN THE CORRECT SPOT found it. By early December I could barely get up a flight of stairs, the neurosurgeon at Penn Med, after we tried some less evasive procedures, said we had to do the surgery ASAP as I was really close to becoming a quadraplegic or dead if I waited much longer.
After two days of intensive, three more in regular and hospital PT I could barely walk with a cane. By three weeks I could walk around a large island in my home. My balance was almost gone and I started learning the process of using ones eyes to balance. And yes the pins and needles are still awful, I take no meds but have learned not to let my mind think about it.
I am not back to pre AVM and honestly I do not know what that really means. I was very active when I was young but athletically just slightly below the middle of the pack. Probably the AVMs were the issue. I can bike now, I can hike, but again when I compare with the other active people well I am a bit below the rest do to my balance and pins-needles issue.
In December I will be six years post surgery and hit seventy. Exercise is the key. And every week I am still getting better. My methodology includes 1) never skip a day (you slid backwards by up to a week if you do), 2) when you can increase the level or type of exercise and establish a new base. When you get muscle cramps, which you will if you push yourself, take the correct muscle relaxer–the extreme pain will go away. That is the price of increasing the exercise level. The cramps will only occur for a day or two. But now you are better and closer to what you were pre AVM.
Well that is part of my story. I hope it helps. We are alive. Thank you.
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Thank you bro for sharing your story!
Appreciate it! Yeah! We are still kicking!
Let’s push on! Cheers!
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I am also recovering from SDAVF. It has been 1 year and several months since my surgery and I am still walking with crutches. At least it stopped getting worse. I am fighting every day to get better and do not let it get me down. I do things that most people would not try in our condition. We travel, go out in our boat and work around the home. We spend lots of time with the grandkids. I do work full time at home and am very thankful for the life I have. Hang in there. It will get better with Gods help and a lot of faith.
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TQ Dave! Let’s push on!
Cheers! Vince
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