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AVM Survivors Network

Getting worse after surgery


#1

Hi ,I was diagnosed with a spinal AVM in 2016 after an hémorragie wish made walk with a cane and a lot of legs stiffness and pain .but side effected started slowly in 2010 with legs stiffness .
I had my first surgery in 2017 at lever t5 ,but my situation continued to get worse .i had another surgery in June 2018 at level t2 .I feel My motricité is a bit better after this second surgery ,but my pain and numbness increased and appeared on new parts of my legs and under my waist .
Does any one had an increase of pain and numbness in new body parts after surgeries …does it diseapear or decrease over time ?
Is it normal to feel worst before getting better ?


#2

Welcome @George3. I don’t have all the answers but maybe some of the @Spinal Group can provide some insight.

What I do know, is I experienced some loss in feeling below the waist and a significant setback in my ability to walk after surgery. My surgery was on June 20th this year.

I am just starting to barely recover some of what I lost due to surgery but am looking to make strides once rehab starts at the end of this month.

Don’t lose faith.

Brent


#3

Hi Brent
Thank you for your reply .do you have a spinal Avm and did you have a surgery or an embolisation?
From what I understood you’re walking pattern is good …
I my case I was with a cane before surgery and now I am using a walker since the surgery …I should try using a cane again with time when I start rehab
Wish u the best and good luck in your rehab


#4

My story isn’t necessarily the same, but I can definitely relate. I never had a rupture, but did have my spinal AVM removed in January 2018. I was able to walk without assistance before surgery, but with a limp and my knee snapping back. After surgery I had a walker for about a 4-6 weeks, and then went to a cane, and now I am able to walk without assistance but I will sometimes limp if I’m tired or not paying attention to my walking.

I still have pins and needles feeling on my right side and weakness on my left. I had a lot of nerve pain after surgery as things were beginning to repair and reconnect.

I hope that you’re able to see improvements. It can take time. LOTS of time. Years. Physical therapy will definitely help!


#5

Hi Laura
I am happy for you ,I hope you’re situation will continue tonimprove day after day .
Thank you for all the infos ,they are very helpful…
I am also was using a cane before surgery and now I am using a walker since my last surgery on the 27 of June 2018.new pain and numbness appeared in new parts of my body as an increase of same symptoms in other parts that I had before surgery …I hope that things will improve with time …i am waiting for rehab .thank you so much and good luck


#6

Just know that your surgery was still very recent and there is a lot of swelling in the spinal cord. It can take time to adjust and see improvement. Thinking of you!


#7

Thank you for the encouragement it gives me hope and strength .its nice to talk to someone who understands and live the same experience.i feel you are a strong and determined person…keep on and wish you to heal as much possible to get back to your activities and normal life soon …


#8

Hi George,
I had surgery March 2017 to remove an AVM that spanned T9-12. I had weakness from the waist down and I was having dizzy spells and a general feeling of weakness. I am lucky because symptoms began January 2 2017 and I had surgery March 14 2017. On January 28 my dr. called me to tell me to go to the ER. My MRI On January 25 revealed what he thought was an aneurysm so they gave me another MRI with contrast and an angiogram of my spine. From January 28 to surgery date I had a catheter and was really weak. After the surgery I couldn’t move without excruciating pain. I couldn’t sit up on my own, never mind walk. I could barely walk with a walker after 3 weeks. I do PT at the Rehabilitation Institute of Michigan (RIM) in Detroit 2x a week still and I now can mostly walk without a cane, I have balance issues, my left foot and ankle feel asleep and tight. My butt is numb at the top of my thighs, my right leg is a mosaic of numbness, heaviness, weakness, “dead” feeling. I have spasticity from my knee to my ankle, I take baclofen to help those, but i’m trying to wean off to see if my body will recover better without the med. I take gabapentin for nerve pain and it helps, but I wish I didn’t have to take it.
I attribute much of my recovery to the Functional Electrical Stimulation (FES) that i receive at RIM. I have to do the therapy or I get super stiff and sore, but I am improving over time.
So super long story short, yes, my pain and symptoms were much worse after surgery but I have made a great deal of improvement over the last year+.
I wish you all the best in your recovery.
:slight_smile: Joanne


#9

Hi Joanne
Your symptoms are very close to mine .and yes you are lucky to get your surgery very fast after the diagnostic .in my case symptoms started gradually in 2010 and only in 2016 after a bleeding in the spine that the diagnostic was made .before that they were not able to see any thing even after few mri and angeographie .
On my first surgery on level t5 I was not able to walk before three weeks with a walker due to pain and weakness .now on my second surgery 3 weeks ago at level t2 I walked the next day with a walker .exept like you said a new numbness appears under the waist area :wink: and an increase of pain and numbness in my caves and feet .i feel disappointed because new pain and numbness appeared while I was excpecting to get a little bit of improvement.i am walking now with a walker with difficulty due to the stiffness .i hope i can go walk to the cane but with fluidity and more stability than before .i tried baclofen and it did not work for me .i refused to take any medication in order to know what happening to my body ,and the neurologist agreed .we will see in the future .but I. An tell you it’s a weard disease among other disease and it affect a hole life .yes we don’t die from a avm in the spine but it makes life really hard .i wish you Johanne the best.stay in touch .


#10

Hi all

Like Joanne66, my surgery was last year in August. 1st attempt was for embolization but the AVM was wrapped around my spinal cord. They had to do a laminoplasty procedure to remove it. Unfortunately, 6 months later they found that the artery that was a problem inside my spine had formed another AVM outside my spine. That was fixed by embolization in April this year. I also still have pins and needles in my feet, and sometimes I get the zingers -sharp shooting pain mostly on left side. I can walk without aids and my balance can be off slightly. I certainly don’t have the stamina I used to but I am hopeful that will come back with more exercise. My numbness has resolved in some places but also also increased in others. My feet still have numbness. i have regained feeling in some parts of my legs. However, after the last emboliztion I seem to have more numbness on the left side of my waist and in the saddle area. It is a really odd sensation when your fingers can feel your legs, but your legs can’t feel your fingers. It is even harder/weirder to explain that to people when they ask about your condition. I have seen improvements since last year and am hopeful they will continue. The neurosurgeon tells me that it can take 18 months to two years for nerves to repair. So I am still on the clock for nerve repair :wink: Hang in there everyone. I hope you all continue to improve and keep pushing forward!
Chris


#11

Hi Chris
Thanks for sharing your experience ,it helps us all to situate ,comparing and understunding this disease even si that it’s different for each person .
Your situation seems positive and like you said with continuous exercice your improvement will continue .
I was also happy to hear that improvement can go up to ±18 months for nerves to repair ,it gives me hope ,because I am on my third Week after surgery and since day 2 my numbness and pain increased in my feet and new numbness appeared under my waist to my knees .Good luck in your recovery ,all the best .


#12

Hi George,

I’m sorry that you are experiencing new symptoms of numbness and pain. After going through two surgeries especially that must be so frustrating and demoralizing!! I had embolization and laminotomy surgery both in July 2018 and I definitely have gotten worse since surgery. I walked into the hospital without a cane and now I have a walker to be safe by myself. I am wobbly on a cane. I heard that after surgery there may be increased swelling which can cause increased symptoms but what does your doctor say?

I also heard that nutrition is important for nerve regrowth. I’m a vegetarian but now I’m taking omega 3 fish oil tablets for example. My neurologist also said the physical therapy is critical.

I’m with you and totally understand what you’re going through right now. From reading the other responses it looks like other spinal AVM survivors have seen improvements after decline after surgery but overall improvement can take months or even years. Be strong, we’re in this together.

Stephanie


#13

Hi gumlan
I had two surgeries with Laminectomy with each one on lever T5 in sep 2017 and one this year on June 25.yes I feel worst and I barely walk with a walker due to old and new mix of pain ,numbness and stiffness from my waist to my feet.
My surgeon said that the swelling period is about two weeks that’s why they give me decaderon for this period of time to remove the swelling .and from my own experience I was told that the biggest improvement appears few weeks after the surgery and it continue months after but in a slower manner .i did Physio two times and now I am waiting after the rehab ,but I d’identité feel big improvement maybe because my medical situation was not resolved completely and maybe because my spine has deteriorated since 2010.concerning nerve regrow there is two opposite theories …one stating yes they can and one stating the opposite meaning irreversible …for sure good food helps …thank you for your cheerful words …and keep in touch …and don’t give up …


#14

Hi again

With regard to nutrition, check out a book and TED talk called Minding Your Mitochrondria. I don’t follow it strictly but I do try to keep up my intake of greens, fish, and colorful fruits and veggies. Berries are supposedly good for nerves too. This diet also calls for drinking bone broth and eating liver- not a fan.

Chris


#15

Hi Chrisd ,It’s been few months I am on that kind of diet by using a vitamix for the fruits and green veggies by doing smoothies.
And for sure b12 found in red meat is beneficial for nerves . Bone broth is good for immune system and muscles ,and fish rich in omega 3 .
I will take a look on that book you suggested .thank you so much
By the way did your symptoms of numbness ,pain …increased after surgery before you get better ?
And it’s very encouraging when you said that the improving can go up to 18 months after an Avm surgery ,because from my understanding from the neuro surgeon is that the big improvement is few weeks to monthes,and after that the improvement is Insignificant .


#16

Hi

My numbness and pain have improved since surgery. However it is hard for me to pinpoint milestones in my healing because I am not sure what healing came as a result of the surgery and time, as opposed to what healing may have occurred with an embolization 6 months after surgery. I hope this makes sense.

Chris


#17

For sure it’s clear :wink: because nothing is predictable and clear with spinal Avm and how the spine and nerves will recovers after surgery and or embolisation …only time can tell …wish you the best recovery


#18

To you as well! Thanks


#19

Hi there,
Hope you feeling good. As in myself 29/07 will be 7 months from surgery.my fistula was behind my spinal cord, t7.i will start Physio at a chiropractioner. Hope all goes well for you
Regards Joseph


#20

Hi Joseph
In my case ,it’s been a month from my second surgery .I just switched few days ago from using a walker aid to a cane ,but my smom ability is still an issue .
My feet are continuously swollen ,and I still feel maybe a bit less numbness and pain in my feet as well in my buttocks .i take only me action for pain from time to time .my stiffness is maybe a bit less but not a big difference than before .why it took 7 month to go for Physio ?did your situation is better after 7 months?thsnk you for your reply