Ongoing symptoms Spinal AVM

Hi, new poster and AVM victim.

I had a thoracic laminectomy (T7) back in May 18 to bisect the fistula in my spinal cord. As far as my neurosurgeon is concerned all went well and my initial follow up showed a marked and significant improvement.

However, I’m still getting some issues with numbness in my buttocks, legs and feet. It’s not constant but is very regular and I have the most irregular toilet habits of my life (although thankfully no loss of control).

Additionally I’m still getting numbness/pain in my back, lower right shoulder and the front of my torso at the T7 ish site. My physio felt this was surgical damage but should it be going on this long?

I’ve tried getting some confirmation/reassurance from my GP/Consultant but they keep giving me vague that’s fine. I’m expecting a follow up in October as that’s my 18 month check up.

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Arawn,

While I don’t have the same ones, I have had some really “screwy” nerve connections and things happening. (My AVM has not gone in the spinal cord, but I’m living with a good bit of “stuff” because the docs don’t want to get close to the spinal cord because of potentially… well, you know.)

After my embolizations in 1986 (yeah, I know, I’m not young anymore), I had one of the most bizarre nerve connections going on - if you went about two thirds of the way between your left elbow and your left shoulder on the outside, I could lightly scratch there and I would feel it in the bottom part of my left ear lobe. No that is not a misprint…

That went away about 5 to 7 years later.

For the last 11 years, I’ve always gotten my flu shot on my left arm - because I never feel it. Nothing, zilch, nada.

I’ve had occasional numbness in the back and right side of my right leg and I have had that for, well, since the 1990s. It comes and goes and I can’t really nail down a “it always happens when…” And the doctors explained what might be needed if we wanted to try to resolve it. I said, “No thank you, I’ll keep my numbness and not run the risk of paralysis.”

And that’s the leg that since my January of 18 procedure has been much harder for my brain to control. Coincidence? I don’t think so.

I have two important nerves - the phrenic nerve - that controls your diaphragm. My left one was severed somehow with all of this. That means I’m basically working with 1 1/2 lungs. And my hypoglossal nerve - that has control of the left side of my tongue - those have both been irrepairably damaged.

Why am I giving you my broken nerve saga? Because I believe that it is of the utmost importance for every single one of us, that we realize that our pace and what we want might and probably will be substantially different than what your system will do.

Nerves, I’m learning, are very different and screwy things. They heal, if they do, at a pace that makes a turtle seem like a speed demon.

And you are not alone.

I’m not alone. Because we walk here together.

Thanks for letting me ramble.

TJ

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Thank you. Just hearing that its screwy for someone else makes me feel, if not better, just less anxious. :slight_smile:

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Then my “mission” here was successful. :slight_smile:

Arawn! Noswaith dda!

Its great to have you join us. We do have a growing team of @Spinal AVM victims. Do join the Spinal group (look under the three-lines menu icon for “Groups”) and I’m sure you’ll be among friends.

By including the @ label above, it messages other members of the team and I hope some will share their experience.

You are not the slightest bit alone :expressionless:

Richard

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Diolch yn fawr Richard.

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In 2014 my spinal AVM was embolized, and later I had a laminectomy at L1-L2. I have some damage, but luckily they are relatively minor compared to what could have been.

I have neuropathy in both legs/feet. The numbness in my legs is relatively minor. My feet are constantly numb/tingling/ burning, particularly the left. I’ve gotten used to it.

It’s been over three years and my bowel habits have improved. It’s not the same as before, but very much under control.

A few months after my surgery I could no longer urinate and self catheterized six times a day. After 4 months, I just started urinating again. Nerves can repair themselves sometimes, but it’s a slow process.

My doctors have told me that the condition is so rare, it’s not well understood. It’s probably why they are vague. Keep track of your symptoms and make sure you describe everything during your visits.

Good luck!

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Thanks you, except for the bowel issues we sound like we have similar issues with the legs/feet. Its a relief to see I’m not the only one. I’m glad to hear you’ve seen some improvements to.

Hi Arawn:
Believe me, you’re not the only one! I’m a spinal avm survivor too - it’s a tough one to deal with - stay strong. V

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I have the same issues with numbness and tingling in my legs and feet. It has been 9 months since my surgery and recovery has been really slow, but I am still progressing. It is a long road that no one really knows where it will end up. Just keep the spirits high and keep pushing to do better each day. I can get up off the floor now and am walking better with my canes. Love you all.

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Hi Arawn,

I had a thoracic laminectomy T9-T12 in March of 2017. I have weakness, tightness, and numbness in my buttocks and legs. The tightness and numbness has been helped by PT, the pain–burning, jolting, etc… is controlled with gabapentine and baclofen.
I now am developing high cholesterol, most likely from the gabapentin… :frowning:
I have my story in my profile.
I do PT: 60 visits a year. The NEMS electrical stimulation and exercises have helped tremendously with my strength and balance.
By bowel and urinary function are not normal, but manageable. No accidents, but if I HAVE to go, I better be by a bathroom…
I still deal with denial…but, I have improved so much over the last 2.5 years, I feel guilty when I complain.
PT and a clean diet help alot. I’m going to have to work even harder with my cholesterol climbing…I take B supplements. Vitamin D. Kelp and algae powders in my smoothies. I got that idea from a book call Mind Your Mitochondria. A doctor who suffers from MS wrote it.
Nerve damage is so slow to heal, but it does. I don’t know how much i’ll heal in the end, but I take what I can get.
I wish you well in your recovery.
~Joanne

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I had advanced spinal Surgery IONM for AVM in D9 D10. July 2017.

Surgeon said surgery was successful. Before surgery I could hardly walk 500 feet without pain.
Post surgery I slowly practised walking and now I can walk 1.5 Kms before discomfort sets in. Cannot stand for more than 20 minutes. Pain sets.

I went for my second year review. Neural deficits pretty much the same. The AVM has caused some damage. I am spastic in both legs more so in the left leg. I have been advised baclofen and gabapentin for spasms and spasticity both of which I have not taken.

Mornings are the toughest. Spasms at night have been severe and painful. I get this abdomen pain and pull around my belly in the mornings. Bowel movements once every two days with suppository . Urination thankfully normal … Once it did kind of build up, but was quickly reset.

I lost my income (photographer). Now trying out other things to sustain myself and my family.
Trying to be cheerful. Going gets really tough on some days.

24x7 tingling, numbness/paresthesia, hypertonia. Legs go hard as stone.

I walk 2.5 Kms / day every day. Neurologist says nothing much can be foretold about this condition.

Lots of Love

karthik

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Hello
my name is Ignat Romi Ionel, I am from Romania.
I was diagnosed with avm T10 in May 2018.
the evolution of the disease was extremely fast, being accelerated by the fact that my spinal puncture was made.
I have had symptoms since 2017, but very poorly expressed, in the sense that; I had problems with urination, I defecated hard and incomplete and problems with ejaculation. With the displacement I did not have very big problems; I was hospitalized for consultation and then I was punctured in the spine.
This was the moment of horror.
Two hours after the puncture they started to numb my legs the next day
They put me a urinary catheter so that I could not urinate, and on the third day I could no longer walk, I did not control my defecation, in the sense that I did not feel my ass, I felt as if I had a huge ass and I had a big ball between my legs, and I had a urinary catheter.
In these conditions I was transferred to Cluj Napoca University Hospital.
Here in 2 days I was diagnosed and informed that it cannot operate in Romania,
I searched and found the hospital INI Hanover, where Prof Baltsavias made me embolized on 7/16/2019.
6 hours after the embolization, I was taken to the salon, they opened my bandage and told me to walk … and I walked.
The next day I walked more, and after two more days I was discharged.
Every day I could walk longer, but the urinary catheter was removed only after 8 weeks.
We control the defecation only with suppositories and enema.
A difficult road followed, the recovery is very slow, I had psychic falls but today I am recovering in the proportion of about 85-90%.
I can work, I can travel, I urinate almost without problems, I control the defecation with some teas, even the sexual side is satisfying.
I wrote you these things because I want to make you hope and believe that comeback exists, the right ones are very slow and it lasts a long time, but they exist.
I also lost hope several times during this time, I was treated for depression, but unfortunately the recovery in this case is possible
if anyone wants to talk to me, I’m willing.
I wish you all good health

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Hi Roni

Your post is certainly inspiring to read. You have been very stoic right through the process.

Wish you Good luck and keep posting every few months or weeks with anything that may be useful to other patients .

Best Regards
karthik

Hi my name is Ed I’m new here and have just read your post I’ve had help from a moderator to get here on first impression yes you are not alone. My fistula is at T9 as a result of a cycling accident 9 years ago I had 2 symptoms after accident couldn’t breathe and it felt like I’d been kicked up the bum after hospital I went home went to bed then did not get out of it for 5 days everything had swollen up at night 8 years on I have had paralipsis 3 drop foot at times lost control of my bowl if you include the 5 days in bed it hert from my neck down to my feet even my arms and hands and yes I’ve had some crazy pains to like I was paralazied in bed and at the same time had a cramp in my right leg. The pain is like turning a light on ,it comes and goes day and night I had to learn to keep calm because if I paniced it would go worse I can’t run, my bowel and blader have has slowed the Doctor said it is rere where my fistula is with a 50% of success if I take that statement and reverse it I then have 100/50 which is the opposite of his statement which is 100% failed so 100 divde by 50 is 2 add index 2x2=4. 4x4=16 16 is as far as we go so add % so now we have 16% the 16% difference would be best explaided by a neurosurgeon so 16% off 50% = 34% chance of success, every statment is equal and opposite ,l think the technology is not there for me yet ,although I am greatful it can be seen by an MRA scan but it has took 8 years , I did not even know about nerve damage pre accident , took me 8 years to get here my damage is at T9 thorasic part of the spinal I have found a relationship between what I eat and pain levels. And yes the body can repair itself at a snail’s pace ,if you help it

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I totally agree! I have had back pain and surgery and multiple treatments over the years but until I got my spinal AVM (T5) two failed angiograms and finally surgery. I had never experienced nerve damage - it’s a whole new ballgame! My Dr. put me on gabapentin which is getting me to what I call “pain manageable” so basically I can function without having to be on a heating pad all day. But I have also been getting acupuncture treatments weekly which have helped immensely. As I was getting a treatment last week it suddenly occurred to me that something was different. I finally realized I was experiencing NO PAIN anywhere in my body. It lasted then entire hour and wished I could leave the needles in. It gave me hope that one day I could feel something close to that. I did acupuncture 35 years ago - a neurogsurgeon actually sent me when I herniated C4-7 and surgery was very risky. I hope your nerves continue to improve and your life continues to move toward “normal”! best wishes

It keeps getting better over time, slowly. My AVM rupture in spinal artery T10-12 and surgery was 25 years ago and even though I live a mostly normal life it is still something that affects me. I experience some numbness in right foot, some spasms and pins and needles in right knee. After surgery I received acupuncture and drank Chinese herbs, as soon as I healed from the surgery I started practicing yoga again. Now, I have some issues with balance but I do Pilates a couple times a week and find that it helps keep me in line and keep my nerves awake. Stay active and focused on healing and bringing back feeling.
I wish you health and healing,
Hannah

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