Im a male of 45 years of age diagnosed with type 2 Spinal AVM in my C2. Just had a visit with Dr. Snyder at Barrow and will have angiogram next week. My fist rupture occurred July 26th and I suffered problems with my left arm and muscle spasms on my shoulder/ neck muscles.
Once I have the angiogram we will sit down and discuss course of treatment. I hate to say this but I keep getting a fear of death is in the cards. Which I had some assurance that death will not happen.
I have a lovely beauitful wife with three beautiful daughters and I would hate to see my life ends before their eyes.
Any words of encouragement is great appreciated.
One other thing did any of you have high blood pressure? Are you on meds for that to prevent any future ruptures?
Macdaddy, you will get the best of care at Barrow. I had my Spinal AVM RESECTED C-4 thru C-6 over 5 years ago there. They are concerned with C-2 because it is near the brain stem. I can probably give you a good idea of what to expect. It sounds like yours is a small AVM. I did not have high blood pressure problems prior to the AVM. The reason you are experiencing left arm weakness and muscle spasms is because the thing has ruptured and it is giving your spinal nerve root fits.
The only way to prevent future ruptures is for them to block the feeders to the AVM and then either resect it or destroy it with cyber knife. My AVM was very large and death is always a factor, but, I would probably give you 99% odds that is not going to happen.
Thanks so much for the reply as for the size of my AVM I'm not sure however, what is a resect? Plus will I recover the sensations in my arms or the better word will my nerves in my arms heal? Its not numb just feels like my nerves went inside out where they are sensitive.
I do noticed the nerves under my chin and left side of my neck has been restored to normal they no longer have thats sensitive pain feel when touching them.
I have like Tina a avm at c4. Mine had a litlle rupture in jan 2011. Luckily there were no mayor problems. When they finally found out in juli 2011 that it was a avm that caused the pains in my neck in January. I first had a angio like you. Because of the difficulty where the avm was/is my only option was embolisation.
I had 3 embo’s and by the 4th they couldn’t get in anymore. So treatment stopped there.
In the beginning i was very afraid that i would have another bleed, i never wanted to be alone at night.
I talked to the doctor about what if i have a bleed and would be paralysed from the neck down. I made some arrangements that I don’t want a vent to keep me alive if i only can blink my eyes. I don’t want to have my family to deal with that. I gave me some rest.
I cant take you’re fear away. I can only say there’s just a litlle chance it would bleed today and a far bigger chance it won’t!
Hi and welcome to the site. I had an AVM excision C3 to C6 in 2010. After the surgical excision, gamma knife etc., was ruled out as too risky in my case, I had a lot of left arm problems with neuropathic pain and spasms etc., before the surgery I was comfortable just a bit weak on the left side as you are. As Tina has said this is a result of the bleed.
I understand your feelings re death etc., although mine was more about total paralysis, assisted breathing, I was quite calm throughout all the work up but about 3 days prior to the surgery I fell off the rails and had a complete day of panic attacks etc. It's all part of the process.
I'm nearly 5 years post bleed and in December I'll be 5 years post surgery. Feel free to get in touch and ask any questions.
Resect is when they cut the Avm off of your Spinal Cord. If they do that you will probably lose sensory nerves, but, not motor function.
Thanks Tracy!! Thats more comforting to know you're doing well. :)
Soo all in all, there is nothing really good to come from this surgery or what not. It sounds from all the comments there is an inevitable truth that AVM is not really curable and that there is always that ticking time bomb.
I have a question, Embolization, are there side effects from that? I mean if there is embolization and its successful, are there certain losses like motor movement, etc?
The problem with Embolization is they could puncture a vein. I had an Embolization first and they had to try 3 different needles before they found the one that worked. This is very important because it glued the feeders shut and cut off the supply of blood to the AVM. This is standard procedure. My side effects came from the surgery I then had the next day. If they can embolize it and stop the bleeding, then that is the first step. If they want to do surgery to resect it, then that means this is the only way to effectively get rid of the AVM.
Ok so let me see if I understand this right, The AVM is a bundle of veins with capillaries that connects to the spine which supplies oxygen to the spine. When removing the AVM this cuts off oxygen to certain parts of the spine which in turns causes these side effects am I right?
Barrow is excellent at removing AVM'S. In my case, they removed my AVM which I suspect was much larger than yours. I went from being totally paralyzed from the neck down to walking and feeling both feet on the ground in about 8 weeks. It took me two years before I drove a car again. All the nerves in my left arm and hand have regenerated and I am working on getting it back. You will experience numbness if you have surgery barring any complications. Your AVM could be a ticking time bomb if you don't do anything about it. Mine was on track to kill me in about 3 years and by the grace of God I found Dr. Spetzler at Barrow. We are all hesitant to say anymore because we know you have to have the angiogram like we did before you know what your AVM looks like and how many feeders it has. Because I had a huge AVM that took up half my Spinal Cord, they thought I would never walk again. BUT, they do say what ever deficits you develop before surgery are still obvious after surgery until your body can begin to repair itself. I have spoken with those who put off the surgery until they lost the use of their legs (AVM had also bled and was in the cervical area too.) They are all walking now... What is important is to do the Angio and let us know what the Doctors say. I can tell you that Barrow has some of the best equipment to view the AVM. None of us wanted to have an AVM, but, this site allows you to receive the best support and we are all happy to answer your questions the best we can. I have followed some other patients who stopped posting over a year ago because they were progressing so nicely, they did not need the support anymore. So keep in touch and let us know, we are here for you.
Tina, I have every intentions of having the AVM removed one way or another. I just hope I'll have good results and as far as what Dr Snyder says is that if a surgery is necessary, Dr Spetzler will be the one performing the surgery along with Dr Snyder along side. I live here in Phoenix so I guess I'm lucky to be close by Barrow.
You are in the very best of hands with Dr. Spetzler!! He only operates on the rare cases. Once you find out the size of it, let me know and I will contact two people who I believe had similar ones and let you know their deficits after surgery and what they have recovered. I prepared them both before their surgeries and they both told me they only experienced about 1/4th of what I did. That was good news to me!
Yes and in my case, my AVM was so big ( 3.9 centimeters long, 1.9 centimeters wide)it was pushing on the cord an stretching out the Spinal nerve roots at C-5 and C-6. Mine was a type 2 also, only difference was that mine had not bled and could have killed or paralyzed me. It was causing some pain and definite mobility issues. I also had been unable to type with my left hand for over 20 years prior. Spinal nerve roots regenerate and when the oxygen supply is cut off, then the signals get mixed up. The brain has to work on rewiring and they believe right now that the spinal cord does not regenerate. I have seen some now speculate that some of the cord whether it is white or gray matter might regenerate, I cannot remember which. Also, there is a kink in some of the muscle reflexes in that some of them stay contracted. This is called "tone". I myself no longer have one leg that is weaker because I did stretching exercises to build it back up. I do have a lack of dorsiflexion, that they now think might be because my brain does not understand how to initiate the reflex in my soleus. I am getting ready to do a 3 month research study on this. They just tested it and said I had the reflex! So, they are going to see if they can train my brain to initiate it. Anyone who is paralyzed for a while or knocked out because of a brain injury or stroke (or Spinal injury) can have this happen to them. Some call it "drop foot".
Thank you so much for your kind words and support! Ill let you know what happens after the angiogram :) God bless your heart :)
You're right that it is a bundle. The arteries drain directly into the veins without first reducing through capillaries. They are also weaker hence the tendency to one day bleed/rupture. They have additional abnormal, often large, feeders and in themselves they feed oxygenated blood to parts of us in an abnormal fashion.
During surgery they will clamp off vessels and will monitor your body's response to this before making a formal decision to tie off and remove any vessels. This is because AVM's can be so complex they cannot always be 100 percent certain what each vessel is feeding. They are facing an abnormal structure and abnormal plumbing. They will do all they can to retain as much sensory and motor power for you as they can whilst ridding you of this thing and the risk of future catastrophic bleeds.
I lost a lot of sensory functionality, temperature awareness and reflexes but pretty much retained all motor power in my arms and legs. Personally I'm grateful for that.
Being without sensation has some issues re injury etc., a bit like a diabetic neuropathy, but I can walk, work and drive.
It's hard to rationalise putting yourself through surgery without any real guarantees of what your outcome can be especially now when we expect so much and cast iron guarantees but it is a process. How I was post op to how I am now 5 years on is worlds apart, but the AVM has gone. I am completely free of it and have been since the angio a few days post op and the confirmatory one at 6 months post op.
Just being without it is a comfort despite all the other trials and tribulations you have to get through, it is also something not everyone is lucky enough to achieve.
Oh there is, getting rid of that AVM is GOOD, better than GOOD it's fantastic if you can. Not all of us on here are able to under go surgical excision and removal or obliteration with embolisation for one reason or another. To be stuck with it is really to be living with the ticking bomb.
My surgeon had to leave a little behind at surgery as it was becoming too dangerous for me. Four days later this had disappeared on the check angio (Phew), at 6 months it was still gone (wow) and at 3 years - still nothing there, that is such a relief. :)
Could not have said it better myself.