I had a spinal Arteriovenous Malformation removed from March 14, 2017 which also included a laminectomy of T9-T12. When i went into the hospital I was able to walk with mild numbness in rt leg and general weakness in rt and lft leg. When I woke up from operation I could not move my right leg at all and I have numbness, tingling, and tight feeling in my left leg. I am in a rehab facility in Michigan and see improvements daily, but I cannot move my right leg from the knee down and have no motor function in calf, foot, or toes on right leg. I was told my spinal cord was not damaged during surgery and that they were able to remove 100% of the malformation so now my hope is PT will help my body restore itself.
Welcome to the site! Thank you for telling part of your story. I hope you continue to make good progress. I’m sure PT is the key but time is also a big factor. Today is very soon post op, so I hope you’ll get good feeling and function back once any post op swelling or trauma has calmed down.
It may be better to create your own topic to start your story and get support. If you’d like me to move you into your own topic, just say.
Welcome! And very best wishes,
Thank you so much for responding to my post. I would appreciate you helping by moving my post to my own topic, I tried to figure out how to do that but I just couldn’t.
Thank you for the well wishes too 
… For info, to create a new conversation or thread click on the “+ Topic” button in one of the category pages, or the home page.
Joanne I have same thing 2/8/16 laminectomy was l1 to t 12. I was in rehab for one month. Went from wheelchair to walker to straight cane. By bladder was also affected and I have to retrain myself for using the bathroom as well. I still can’t feel any sensation (hot cold dull sharp) on either leg, they are 100% numb, and I have drop foot in both feet. But I get up everyday and go to work! I walk with the straight cane for balance and stability. I can now ride the stationary bike and use the elliptical for over 30 minutes. Do the PT all of it, and then do extra on your own. When PT is over and you are in your room waiting for dinner, do more exercises. It will come back slowly, very slowly in my case, but I think in time I will have full mobility (even if I can’t feel my legs: or when I have to pee :)). Build the strength in your legs and over time they will start to work for you again. Most importantly, keep a positive attitude and picture your self walking again and doing activities with both legs.
Hi Kathleen, thank you so much for sharing your experience with me I am keeping positive but I haven’t been exercising in my room, I’ll start that today!! I feel like I have to pee, and if my bladder is full I pee a little on my own, but usually 50-100 ml (?) only but it’s a start! Each day I can see a difference either in movement or strength or feeling. I figure each tiny improvement will stack up and eventually i’ll be back to my old self or maybe a new self but I’ll be mobile either way! I wish you the best and keep up your hard work!!
I am glad to hear you are making progress, keep it up and you will see the
results. Slowly but surely! Keep me posted on your progress. You are the
first person on this site, that I have found that had the same surgery as I
did. So I am interested to see your updates and also to share any
experience that might be helpful to you. I am not sure if you have spams,
but my leg spasms were terrible and happened all day and night. We treated
them with muscle relaxers, that did help a little. But about 6 months ago,
I started getting Botox injections in my calf. Let me tell you, it is
night and day. I now spasm in one whole day what I used to spasm in one
hour! If you are experiencing muscle spasms, keep that in mind. I hope to
hear from you again.
I am glad that you found my post because I had searched and wasn’t able to find anyone who had the same thing as me.
I do have muscle spasms but I don’t have them every day. So far they only happen at night. I am still in the rehab facility until April 7th so when I experience the spasms I call the nurse and I am given baclofen which helps them go away. A couple of times the baclofen didn’t work and they gave me valium which helped make them stop. I will ask my doctor about botox tomorrow when he comes to see me.
I am glad that you were able to find relief from the spasms. They are terrible!!
I also would like you to keep me posted on your progress and hope to hear from you soon.
I had a laminectomy at T10 to fix my DAVF (Dural arteriovenous fistula) on 29/10/2015. Please see my story that I posted in my profile of this AVM site. There are not many people who had the spinal AVM problem on this site. The majority are brain AVM’s. I had also responded to Kathleen post on 1st March 2017 and told my story. Please let me know if you can not see my profile or my previous posts on this site. I can cut and paste my previous post on this conversation. Wishing you a good recovery … it is a long road to become mobile again. In my case I will not able to get to the stage of before the issue started … but I am happy that I can walk again. Even it is not perfect. Happy to see other people who has the spinal their experience of the illness. It’s help my healing process and encouraging. Greetings from Melbourne, Australia.
What is [quote=“Joanne66, post:1, topic:17065”]
[/quote]? I too have Spinal avm T10 to L1 and I am meeting for the first time with my nuero tomorrow June 29, 2017. To discuss what to do and I think they want to do angiogram. I am sorry to hear of your recovery complications. Stories like yours scare me and then I wonder if I should not get any treatment at all? Are you happy you did the treatment? Did they explain the risks? Were you better before or after?
Hi Gina, as you can see from my bio, our symptoms are very similar. An angiogram will confirm your doctors diagnosis. Don’t wait to get the angiogram; symptoms scan spread rapidly. My AVM was outside and inside my spinal cord which was confirmed with angiogram. I’m not sure if removing the AVM itself caused my paraplegia or if it was the part of the AVM that was within my spinal cord that caused it; the doctors can’t/won’t say if there is a difference. I don’t think they know really. My bladder is recovering; I no longer use a catheter on a daily basis and I can slow down my stream and stop it sometimes so that tells me my pelvic floor muscles are beginning to recover. The doctors told me it will take up to 2 years for me to fully recover. I didn’t expect that. I thought I was going to be able to walk the day after the surgery! I can now walk without a walker or cane, but I use a cane outside of the house to reduce my fall risk. I am still very numb on my right leg and from my knee down feels like it is asleep. My sitz bones also feel numb. My left leg is MUCH better than the right. Numbness in left foot is improving. I can move my right leg and foot voluntarily, but my range of motion of leg, ankle, hip is not full. I can’t lift my toes up, my big toe is still 90% paralyzed. I notice tiny improvements daily, but this whole thing is way bigger than I ever thought it would be.
*I was told that if I didn’t get the surgery I would be permanently paralyzed eventually
*I am glad I had the surgery, but I am sad about the outcome. I am trying to be positive because my recovery has been outstanding. I feel fortunate with my healing especially after hearing some of the others stories…
*They kind of explained the risks, although, like I said earlier, I thought I would walk the day after the surgery. I didn’t walk on my own, without a cane, until June 1st (Ish) so 2 1/2 months after surgery
*I thought I would go home 4-5 days after surgery but I was in the hospital and rehab from March 14 through April 7th
*I went to U of M for inpatient rehabilitation but now am at Rehabilitation Institute of Michigan (RIM) for outpatient therapy 2 days a week 3 hours each day
*I wish I had gone to inpatient at RIM–EXCELLENT FACILITY
*Dr. Ghaus Malik Henry Ford West Bloomfield Michigan did my surgery
Please keep me updated on your diagnosis and treatment.
Thank you for responding to me and sharing with me your story and feelings. I’m so glad to have you to talk to. I will update you later today after I meet with the nuero at The Nuerological Institute. I’m terrified of my AVM and all the procedures. I don’t think I can deal with life if any of what I already have going on gets any worse. I’m sorry that you having so much troubles with your recovery. I am glad your able to be positive regardless. I feel like god only gives people what they are strong enough to handle. So I’m praying.
I hope you get all the answers you need and a good path forward. I’m sorry you have to go through this, but you are not alone. I will keep you and your family in my prayers.
Thank you for checking in with me Joanne! I was thinking of you today hoping you were still progressing forward in a good positive healing way! I am even more confused then I was before I went in. I really need to have the angiogram apparently and I now have that scheduled for July 28. I could have done it July 11 but I have to do “pre op” testing and go to work and get pre with from insurance and it was a bit stressful. They are apparently not sure but think it’s a type 4 based on my gender and age abd how the veins on the surface of my spine look. So I don’t know. He told me not to exercise like bicycle or running etc. to take it easy for now. He also told me about other patients who are paralyzed and how sudden it can occur so I was aware to take signs seriously abd not to dilly dally if something big starts happening make sure I head to ER. So I will just continue as normal for now and distract myself with books and work.
Hope all is well and your having a good day.
my story is very similar to yours.
i had my spinal AVM T9-T11 removed in Aug 2016.
preop i had numbness in the left leg and slight weakness in my right leg.
post op, i could not move my right leg. after rehab i could walk normally within 1-2mths. but 2 years post op now, i still cannot run. even though i had 2 yrs of intensive physio. how are u now? any progress?
i have just started on baclofen recently. it helps with my back pain and tightness.
my pain doctor has suggested to do muscle injection. has anyone done this before?
Hi Glad. I am improving over time. My worst thing is spasms in my calf, but baclofen seems to help although I would like to be drug free. I can’t run either, however, I am using a new “device” called the New Gait. It is a set of straps with bungy cords that connect to each other that assists walking and, from what I’ve seen on the website, running. https://thenewgait.com/newgait-products/
Check it out. It’s crazy how it helps me walk.
Also, I saw a “functional medicine” doctor last week. She has me on some supplements and wants me to go on an elimination diet which I am going to start after Labor Day. She believes gut imbalance is not allowing my inflammation to heal. I see a pain management specialist next week. I’ll ask about the injections but I’m going to try to get help getting off the meds. Maybe. I’m only 1 1/2 years out and have a lot of healing left to do.
I still do physical therapy at RIM 2 days a week and ti’s pretty intense. I’ll keep it up as long as my insurance will cover it.