Hello everyone. My name is Brent. I joined this forum a week ago. I have been reading various posts and getting a sense of the community.
Firstly, I commend all of you for the willingness to share the ordeals you have endured and the support you give others as they reach out with their AVM struggles.
Secondly, I feel fortunate I stumbled upon this forum but, at the same time, am saddened this forum needs to exist at all. Prior to April 11th, I didn’t even know what an AVM was let alone how devastating they can be to an individual’s existence.
I provided a synopsis of the onset of symptoms in 2010 through to the diagnosis a month ago on my profile so I won’t rehash that in this introduction. The MRI/MRA showed spinal cord swelling from T7 to the Conus; enlarged veins surrounding the spinal cord from T4 to the Conus; and the SDAVF likely positioned on the left T11-T12 intervertebral cord passageway. The angiogram slated for June 19th will delineate the malformation so my neurovascular surgeon can properly plan his surgical approach on June 20th.
The intensity and severity of the symptoms have been accelerating in recent months and as late as three days ago I stopped driving due to an increased loss of sensory perception and control in my legs and feet.
My surgery date in June seems like an eternity away.
I don’t know what post-surgery will look like. I don’t know how much permanent damage has been done, but the statistics are not in my favour due to the length of time between the onset of symptoms and treatment.
But, I have a rather strong “Don’t give in - Don’t give up” mentality which I trust will carry me through the post-op physio process.
I doubt I will have much, if anything, to post until after surgery but I plan to post regular updates in the Spinal Group as I recover. Anything I learn I plan to share.
Welcome to our world! It’s a place I think we’d all rather not be but actually, the people found here are just great. It’s great to have some folk to turn to. Back in (2006 I think) Ben Munoz, founder of Ben’s Friends, found he had an AVM and there was just nowhere to go for support and set about creating this as the first of what is now nearly 40 communities. We are all in a similar position. It is great to be able to lean on one another.
Well done for joining the Spinal group. I’m hoping that other spinal members will have received a prompt about your initial post and will join the conversation. Fortunately spinal AVMs are rare among rare; unfortunately that means we don’t have so many to support you.
I agree that June feels a long way away. I hope you get there without any unnecessary damage. Your positivity will get you there – keep it up. I am sure it is one of the greatest assets we can have. And determination to get out the other side.
It would be great to hear your story unfold and it could become a reference for others, ages and ages hence. Whatever you need us for, we are here – just say.
Thank you Richard for welcoming me and your well-wishes.
As you could probably tell from my background, I’m more accustomed to being in the role of providing support rather than reaching out for it. And I will continue to do so where I can. But I also realize my limitations. I am strong but am fully aware we are stronger together. I won’t be shy in seeking assistance (whatever that looks like at the time) when the going gets rough.
Great you’re here Brent, for sure it is a little different position, most of us have had to adjust a lot of ways. One of my big points was experiencing being down right scared and not knowing how to deal with it. Came out as a little bit of snapping at the family who were also scared but trying to take care of me. Once I recognized it was okay and probably normal I was able to deal with it a lot better. Take Care, John.
Thanks for the greeting, John. You are absolutely correct. It can sometimes be overlooked that not only you are affected, but your family and those who care about you are affected as well. Always good to keep in mind.
Very similar experience. First - just need to get through surgery. Once that is done and you have recovered you will start light (very light in my case) physical therapy focusing on strengthening your core. It will likely be slow but everyone is different.
Keep the faith, take the time to heel, and figure out what works for you. Mine has been a slow recovery (1 year now) and at times it doesn’t feel that way but it is. I actually skied this winter.
Thank you for touching base. Your story brings much needed encouragement because, as you know, those of us suffering with SDAVF symptoms over a prolonged period before treatment aren’t usually picked as “Ambassadors” for successful recovery.
I’m doing what I can to set myself up for success. Staying positive and learning as much as possible. My Neurovascular surgeon is confident (not arrogant) and, among his impressive credentials, completed a two-year clinical fellowship at the Barrow Neurological Institute in Phoenix, Arizona. He spent one year with Dr. Robert F. Spetzler, and an additional year with Dr. Cameron G. McDougall, both of whom have been touted as among the best in North America and highly regarded within this community.
But you’re right … get through surgery first, then assess. As you said, everyone is different. I’m sure there will be disappointments and frustrations ahead but I may reach out to you, if you don’t mind, for some insight should I bang against a wall or two.
Congratulations on your ability to ski again. I don’t ski, but it would be nice to be able to say to someone, “I don’t want to”, rather than, “I’m not able to”!
