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AVM Survivors Network

Successful Spinal AVM Surgery

Hi,

I wanted to share my story. I hope it provides others some insight, hope, or courage.

I had a spinal AVM removed surgically June of 2017.

My condition was misdiagnosed for many years. Starting with foot pain (burning, tingling, shooting pain). While never getting a clear diagnosis I tried treating as gout, arthritis, or broken bones. Nothing was resolved and ended up dealing with pain for +10 years. I was able to maintain an active life skiing, traveling, and no mobility problems.

Fast forward to about a year prior to surgery, I started feeling immense weakness in my legs. Going up multiple flights of stairs became very hard. At this point I went through a battery of cardiac tests thinking it might be heart disease as this ran in my family. Passed all tests cleanly. The issues continued to graduate to some balance issues and eventually temporary left leg paralysis. At this point I went to a neurologist who thought it may be a disc in my back and ordered a MRI. The MRI showed a 53 year old man’s back who grew up playing contact sports but no disc issue. The radiologist did notice a very minor abnormality at the bottom of the image. Several additional MRIs and my neurologist/radiologist were able to diagnose spinal fluid backup from T8-T11. At this point, the potential of a spinal issue was first raised. I was at this point referred to MGH in Boston.

After several additional mri’s and consultations it was decided to do an angiogram. My team of doctors believed it was a spinal avm but could only confirm via angiogram. The angiogram was scheduled. The angiogram concluded that it was a spinal AVM at T11-L1. Surgery was recommended and scheduled as if left untreated if would eventually cause an aneurysm.

I am blessed to say surgery was successful and that the amazing surgical team were able to remove the AVM and remove the risk. I have almost full mobility minus some minor left foot movement. Pain in my feet is still very strong and I also have some leg twitching but hopefully as my body continues to recover it will dissipate (I also get cold really easy now - ???). The doctors have told me that it will take a year for spinal cord to heal fully.

I have spent the time post surgery recovering and continuous physical therapy. The nerves to my feet are significantly damaged but I am very mobile and committed to attaining 100% recovery.

I truly am blessed that along my journey I was the recipient of some amazing medical care. From the neurologist and radiologist who initially diagnosed the issue to the phenomenal surgical team at MGH who performed the surgery, to the physical therapy team currently supporting me. I am lucky to have such a positive outcome.

I wanted to share as AVMs are rare occurrences and a lot of the information you find can be very frightening. I know going through this process it was hard to find information, especially positive information. I hope my story provides someone comfort or I can be a friend to someone at the beginning of their journey. At my beginning I was given the following advice by a friend who survived stage 4 pancreatic cancer (less then 1% chances of survival) - “Stay positive through the process and focus on what you want the outcome to be.” I reminded myself everyday.

Good luck to all. You have my best wishes and please do not hesitate to contact me if I can provide support.

  • Brian
6 Likes

Thanks so much Brian, you do have a great story. The importance of patience and perspective is so clear. The stories of perseverence, determination and courage appear so often in our community, it is always nice to hear the positive results. I love the saying “Stay positive through the process and focus on what you want the outcome to be"! I lost my dad to pancreatic cancer when he was 59 years old, please shake your friends hand for me, I’m so happy to hear of someone who came out on top of that battle as well! Take Care, John.

3 Likes

Brian,

Great outcome! Thank you for sharing!

I think spinal AVMs are undoubtedly among the most difficult to treat and get a good outcome from, so it is fantastic to hear that you’re doing so well. You do strike as an immensely patient person, as well though. I’m sure you’ve needed to be!

Do please join the @Spinal group. I hope you’ll be able to support and encourage others who are having a really tough time and some of whom I guess won’t get the great outcome you’ve had.

Many thanks for sharing. Do stick around. And I hope you continue to make great strides.

Best wishes,

Richard

3 Likes

Thanks and have joined the group.

Brian

I have a very similar story to yours. My AVM was at T12-L3. A laminectomy procedure was done in Aug of 17 to remove the AVM (Angiogram procedure was unsuccessful). Thankfully I have rebounded well. Surgery was successful and am still in physical therapy. I do have a question, has your foot pain (burning and tingling) dissipated or gone away? I still have those issues despite being on Lyrica. Right now my feet really only feel better when I wear compression socks. Thanks -Chris

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Hi Chris

So happy to hear you are bouncing back. My foot pain hasn’t really disappeared. I am taking 600-800mg of gabbapentin daily and a pain medicine at night. I am also very twitchy in my feet/legs. Especially when I get tired. I am going to switch to Lyrica as the gabbapentin causes some brain fog.

I recently had a couple cortisone shots in my back which has help relieve but not remove the pain. I wasn’t expecting anything so I will take it. I used to wear compression socks but have now switched to very loose socks? No idea why but more comfortable recently.

My doctors said it takes a full year for rehab and to stay positive so I am trying.

What side effects do you get from the Lyrica?

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Hi Brian

Thanks for the well wishes. I am glad that you are doing well also. I too was on gabbapentin but was switched to Lyrica. Watch out as Lyrica is very expensive. Thankfully I have already reached my deductible and the price has come down. I am on a low dose of 75 MG per day. Because it is a low dose, I rally don’t have any side effects.

Thankfully I do not have back pain -only occasional issues. Advil usually takes care of it. Oddly enough I do get pain in my back side. I really have no feeling in my backside -at the surface, nor can I feel the backs of my upper legs. I do feel pain at deeper levels of my backside which can make sitting difficult at times. No sure if this is true for you too?

I see you are from NH. My daughter will be graduating from UNH this semester so we will be up there a few times this Spring. If you are interested in getting together to share info or swap questions, let me know. Thanks Chris

Hi Chris

Sorry for delay. Bee traveling for work. I just switched to Lyrica and had
a bad experience day 1. Got a strong brain fog and headache and just didn’t
feel well.!I switched back to Gabba but will try again. I hate the pain in
my feet but very happy to be mobile. On your legs - hang in there. I
initially experienced lose of bladder and had some sphincter (no easy way
to say) issues. The bladder issues stopped emmedaitely and I am able to
control the backside. I do lose feeling there as well.

What are you doing for PT? I took it slow initially but have now graduated
to a program to help with mobility. I don’t have a lot of nerve response
year. You would t know it unless you were a professional but it does affect
me.

Also - I actually live in Durham where UNH is. If/when you come up let’s
definitely meet and grab a cup of coffee!

Brian

Chris and Brian,
I had an AVM at T9-T12 removed March 14, 2017. I am almost at my 1 year! I still have constant nerve pain in both legs. My right leg still has paralysis and I have no feeling at all in my right shin. I don’t have issues with my bladder or bowels but my pelvic floor muscles are very very weak. I take 700 gab. 3x a day and 65 mg baclofen broken up into 4 doses. It took me many months to adjust to gab without being in a total brain fog. I still feel a little dull in the brain sometimes, but I feel so much better than I did.
I am in PT 2 days a week in Detroit and I do exercises at home as much as possible. It sounds like you guys both are doing very well for what you have been through!
I too focus on a full recovery.
I wish you both the best!

Joanne

Hi Brian

Sorry to hear about the issues with Lyrica. Maybe start with lower does and work up to higher levels might help? I will take your travelling for work as a good sign of progress. My surgeon cleared me for travel on a follow up in January. I had my first business trip since June 17 two weeks ago. It was an overseas trip, and it took it’s toll on me. It took almost a week to fully recover but I was happy to get back into the mix.

Thankfully I am past my the worst of my bowel and bladder issues. Still working with Urologist on retention issues. With regard to PT, I have been going roughly twice a week. We started by working on a lot of balance exercises, as well as trying to loosen up leg muscles. I can use the eliptical machine pretty well and have used the stair climber. A bigger challenge for me now is my hips. I think that stems form sitting for too long post surgery. I have difficulty getting going after sitting to long. it takes a while to find my stride. There are still good days and bad days. My good days are outnumbering my bad days, so I am happy for that.

It’s great that you are in Durham! I should be in Durham the weekend of April 14/15. I will let you know as the date gets closer. Coffee is on me.

Good luck with the meds

Chris

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Hi Joanne

Thanks for the well wishes!

As they say, a lot can change in a year. With regard to your current status, are your symptoms better, worse or the same since surgery? I know at some point I will have to stop PT for insurance reasons. I will talk to my therapist to determine what I should do after I stop coming to PT. What exercises are you doing at home? Have you done any pool therapy?

Congrats on coming up to the one year mark. Keep moving forward!
Chris

Thx for your post!
Had similar journey, wrong MS diagnosis and so on. My treatment was angios, angios with embolization and the final battle with laminectomies (2x). This was from 2012 - 2013. And there is the point: Many doctors say 1 year, 2 years and so on. This is wrong. I have improvements still after nearly 5 years. Know other SCI persons, they have improved after more years. So. There is now time limit. Good to know, never giving up. Best for you !

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