New Spinal AVM Member - Emergency diagnosis/surgery

Types of Avm's Spinal AVM
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Hi, I had a brain surgery for an AVF on my spinal cord (neck area) late in October 2020 at the Civic Hospital of Ottawa (Canada). It was an emergency surgery which lasted 10 hours. They had to make a hole in my skull in order to reach the fistula.

Everything that happened was/is a shock to me. I never suspected that I had a more serious problem than a regular back pain and constipation until my bladder stopped working and I couldn’t walk, which brought me to the ER.

They first tried steroids but I ended up not feeling my legs any more, reason why they had to operate on me. I still don’t’ know if the avm is removed completely though, since I need to undergo a follow up angiogram.

Almost 4 months post surgery: I can walk 2 km with walking sticks but I am in pain all the time. My back is painful, I have spasms in my legs, back and sometimes in my intestines. My legs swell and my back burns when I sit for more than 30 min. I can’t stand or sit for too long; lying too much is not better since I can also have spasms.

I no longer use a catheter but still have some bladder issues (retention/incontinence); constipation is still severe, but I don’t use laxatives since they were worsening my condition. I use an enema (and digital stimulation/removal when nothing works).

I don’t eat cereals, bread, rice or regular meat; I eat lots of veggies, a few fruits, seeds, nuts, sardines, algae, fish, giblets, tofu. I can’t digest broccoli, cauliflower, beans (but chickpeas are ok). I drink a lot of water and herbal teas. Gluten is NOT part of my diet. I also eat dark chocolate almost every day.

The pain around my neck disappeared, that’s the only improvement!

For some time after the surgery, I couldn’t feel my butts and now they became so flat that they hurt; my core is weak; I am extremely tired all the time. I just started to be able to sleep for 2 hours in a row at night, hoping it will get better and I’ll be able to sleep 6 hours in a row some day.

Presently, writing, using the computer/Internet and reading are difficult to do. I can’t focus and my body gets tensed/achy quickly.

I was quite upbeat until 3 months after the surgery, but now I have to deal with depression because everything seems like a huge task to do: waking up, eating, walking, taking a shower, etc. I’m tired of the endless pain. I take Tylenol pills as needed (prescribed by my neurosurgeon) but they don’t’ help much.

No specialist really took care of me after I left the hospital, I really felt like I was abandoned. Thankfully, a rehabilitation center accepted to take care of me following a referral from my GP. I’ll see a physiotherapist next week (almost 5 months post surgery!).

How do you deal with the spasms? Do you know of herbal remedies? I was not prescribed any meds but Tylenol when I left the hospital. I have high blood pressure, but I monitor it with my diet.

Is being constantly in pain common for this condition?

No health specialist I saw knew about dural arteriovenous fistulas (but the neurosurgeon), even less in the spinal cord! My GP just helps me find resources and does not know anything about my condition.

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@Karine

Welcome to AVM survivors and the @Spinal group! I’m sorry you’re going through such trauma. However, is great you found us and I can see you’ve already found the Spinal AVM area.

I’m a brain AVM survivor so my experience doesn’t correlate with yours – continence etc are more rarely an issue for brain AVM folk – so I hope some of the Spinal guys & girls will join the conversation to help you out. I have to say that what you are going through is quite common, I think, so you are definitely not alone and I think you will get to a better place. 2 hours a night is really quite dreadful! :scream:

Lots of love from me. I hope some of the spinal folk can join in.

Richard

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Thank you for your reply Richard.

AVMs are mysteries for many heath practitioners in my area, and Spinal AVMs are completely unknown. Nobody was able to help me so far.

This site is a life saver for me. Thank you for being here.

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It’s fair to say an AVM anywhere is a rare thing and when going through my diagnosis, I met a number of doctors who had never encountered one. My AVM could be heard as a whooshing sound as the blood coursed from artery into vein in the back of my head. Two doctors asked if I would mind if they had a listen to it (through a stethoscope) as they felt they might meet just one other case in their professional lives. I consented.

Spinal AVMs do seem quite rare. Pulmonary AVMs similarly rare (if not rarer) but hopefully some of the Spinal folk can share a bit of their experience with you.

You. Are. Not. Alone.

Richard

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Hi Karen,

I had the same fistula in the neck cranial area. I had the surgery 2 years ago. I also had a lower back stenosis. It was hard for them to figure out the problem as they look at everything else first. I had the back surgery and the pain was gone, but my walking was getting worse. They did a nine hour surgery on my neck and this stopped me from getting worse.

I still have tingling and burning in my legs and feet. Gabapentin helps with this. 3 times a day
The stiffness is helped with baclofen 10 mg three times a day.
And the spasms are helped with ropinirole .5 mg at bedtime.
My spinal damage happened quickly and my walking is improving very slowly. I walk with two forearm crutches and not very far at all. Each day is a challenge and nothing comes easy. I have a recumbent steper that I exercise on and keeps my legs toned. It is important to not get down and fight everyday to get better.
We are in this together. You are not alone in this journey. I am from Abilene, Texas.
I had great Drs in Dallas Texas. They were top notch.
We are praying for you.
David

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Thank you @Daveshill for the information. I’ll ask the physiotherapist about those meds. As she works at the rehabilitation center, I guess she’ll be able to forward my questions to some specialists.
In the meantime (since I’ve been dealing with the pain for more than 4 months without help), I’ve started yoga exercises for beginners. It doesn’t help with the spasms but I can feel some relief when my body get stiff.
Each day is a challenge, and no day is the same. Presently, I have more bad days that good ones (if any), and it’s exhausting. I know I have to be patient, but the pain is killing me.
I had a great surgeon and the neuro specialists were good too, even if I didn’t chose them since it was an emergency surgery. The sad thing is that I have to look for ressources myself, since I am from another province. Therefore, the follow ups are almost non-existent.

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I hope you get some relief. What kind of pain are you having. I was just wondering as I would not call what I feel as pain. It is more of a discomfort. The meds I mentioned help relieve the discomfort. Yoga is great. I like to stretch every morning and afternoon. It helps with the stiffness in my legs.
Hang in there and be patient.

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Hi all,

We all know this but I am not sure if I ever posted—this site has made my life better. Knowing other’s experience has helped me understand my own. Briefly my AVM history is associated with a pair of fistula’s at T2 and T5 that chocked my spinal cord. The operation occurred 7 years ago at Penn Med by the head of neurology, seven years ago—but even today I recognize improvements. They are little things, small little things but when you think about it 2 to 3 thousand little improvements is very big. So do not despair, it takes time.

One thing I am not sure I mentioned before—was how the AVM was discovered. It was during a visit to a neurologist, I think the fifth I had gone to to figure out the problem, and she did that test where a light hammer is used to tap right under your knee cap. Well the jerk was way above what is normal. To me it was normal as it was the same response that I had for years—well maybe a little more that time. I was leaving the exam room and the Doctor said, “wait a second, let me check something again”. I could see the light turn one. What a day that was—years and years of not knowing and the start of the solution was at hand. And every day it gets a little better.

Oh here is one more. So I am talking to the Professor, Professor to Professor and trying to get more information and details about AVMs and by then I had read a lot and he says to me, “You know you are really the expert on this.” What he meant, I believe, is that it is my body that is going through the whole thing and it is my nerves and my brain that has to figure out how to process the nerve impulses, the feeling that I alone have. So yea, its different but it really is mind over matter.

Duke

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Hi Karine,
Yes, it’s true that spinal DAVF are rare & most Doctors don’t know about them. My DAVF was really low on my spine S-2-S-3. I didn’t have back pain until after my surgery. My Dr. sent me for PT after my surgery because I couldn’t walk by myself. That really helped to strengthen my legs & helped me with my balance. Then I tried acupuncture for my back pain & my nerve pain in my feet. It really helped my back pain but not my nerve pain in my feet. I also take gabapentin 3x a day for the burning and the pins & needles from my waist down. It helps. I also take Cymbalta which really helped me with my depression.
I also had constipation & urinary issues. I used to take benefiber in my coffee everyday & that helped me. You could also try a stool softener. As for the urinary issues I went to a women’s health for pelvic floor & they helped me. You could also go to a urologist they might be able to help.
I hope this will help! Things will get better, hang in there. Sharyn

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Hi Karine, I’m sorry you are in so much pain. I’m glad they finally found your AV fistula but to be in so much pain to the point that you cannot sleep sounds unbearable!

I had spinal AV fistula on spinal cord T11 and surgery in 2018. It took time to come to terms with the new reality of my life, and I also felt like, the doctors had no idea what I was feeling. That’s why I came to this forum, it’s only here that I met others who actually understood the specific circumstances of what I was going through! I personally hope that some of your pain is related to your back surgery which will hopefully dissipate over time, but it’s probably also related to nerve pain from the AV fistula.

The medication that helped me the most with nerve pain is gabapentin. Also baclofen is supposed to help with muscle spasms. Can you ask your doctor about those medications? I really hope they can help, especially if you are having trouble sleeping. I still have numbness and tingling in my legs and feet which seem to get worse in the evenings. I think the gabapentin helped, though personally I stopped taking it because I didn’t like the feeling when I didn’t take it. I totally understand what you mean - standing hurts, sitting hurts, lying down hurts! Everything hurts. It helps to move around, even micro movements like I try to move my ankle around when I’m watching TV. I used to be in pain / extremely stiff in the mornings when I woke up, and also would often wake up in some weird/awkward position, but in the last year or so I think it’s gotten better.

I still have bowel and bladder issues, my new thing is I’m really into various Always pad products (My favorite for every day use is Always Discreet #6 pad, and Always Discrete underwear if I’m going on a long trip or something). I also went to see a uro-gynocologist for bladder issues, who prescribed oxybutinin but I don’t really see that have an effect. Like you, I’ve played around with my diet to see what helps/hurts the “neurogenic” bladder issues. When I get really constipated, sometimes I’ll order takeout Chinese food (stir-fried mixed vegetables). That’s my secret weapon, besides prune juice. Also sometimes taking a short walk around the block or going on my exercise bicycle helps to get things moving. Being constipated was one of the worst feelings, but now, nearly three years after my surgery, I have to say that the constipation is definitely not as bad anymore as it used to be. I love that you’re eating dark chocolate, we have to have some enjoyments in life! Oh also I was taking Omega-3 supplements after my surgery, to be honest I’m not sure how much they helped with recovery though.

Good luck with the follow-up angiogram! Also I’m relieved to hear that you have physiotherapy. I think it should really help. I also do short tai-chi videos on YouTube, personally I found that tai-chi helps me more than yoga since well, first it’s easier (haha) and also helps me with balance and also is slow movement which is somehow easier for me than yoga which involves either staying in one position for a long time or difficult balance poses that are impossible for me.

Also, below is a link to a free mindfulness meditation course. I have a love/hate relationship with meditation, but I have to admit there are probably benefits to meditation to help alleviate stress/depression.

You are not alone! I and others on this forum support you and we know what you are going through, even more than the doctors can understand. Finally, I just want to say, it sounds like you are already doing so much to be healthy and recover. Be kind and forgiving to yourself and your body, take as many breaks as you need, be easy on yourself and your body. Pamper yourself as much as you need!

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@Daveshill I mainly have pain in my lower back (tailbone area and pelvic floor), my upper back (shoulders area) and my intestines (the pain is not constant there).
I’ll start stretching twice a day too, it’s a great idea.

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@dukestur, that’s true, we are the experts on our condition. My neurosurgeon said a similar thing to me when I asked him when I should resume driving, doing exercises like yoga, etc.
I sill can’t drive because my core is too weak and I have cramps/spasms/burning/swelling in my feet when I seat even only for 20 min! It’s still painful for me to sit in a car.
I handle the tingling and burning quite well, they come and go. They are piece of cake compared to the constant pain and the stiffness/spasms.

Thanks for the tips @Stylist. I tried many different kinds of laxatives, but they didn’t help, I always had to use the enema even when taking them. I forgot to mention that I saw an urologist at the hospital: I have a prolapsed bladder (a referal to a specialist has been sent, but I’m still waiting for an appointment), and they’ll do some other tests in March to see if my bladder works properly. I do exercises for the pelvic floor that my regular physiotherapist advised me to do (she is not specialised in neurology; she helped me with my bunions and knee problems years ago).

@Gumlan I am in pain and stiff every time I get up from my bed after a long time lying. I’ve started to change positions during the nite, but it doesn’t help much. I have to be very careful when I get up, otherwise I have strong spasms and I hurt for many hours after that. I self-massage many times during the day.
I use different kinds of pads too for the incontinence. However, for now, I need to be near a washroom, because my bladder issues are not under control yet.
Thank you for the link to the mindfulness meditation and the encouragements.

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Karine,

When the cramps come I use Tizanidine HCL. The doc gave me 2MG Tablets. I am very lucky in that frompretty much after the operation to now I have gotten cramps but they are almost , not zero, but near zero now. To get cramps I have to do one of three things and they are all under my control.

The first is to increase my physical level of activity, more than I probably should, from the previous day or days. At the beginning my activity level was very low. When I relearned how to walk I would get cramps a lot. I had this rather large island in my kitchen-living room-dining room where the kitchen sink and dishwasher were located. I started by slowly walking around the island once one way and once the other and pretty slowly as my balance was near zero and I really had to think what I was doing so as not to fall. Over a three month period I learned to walk around the island faster and more times each way around. But as I increased I was prone to cramps. And the cramps would come usually in the middle of the night. I do not want to go through all of the details but now I am at three miles a day around the neighborhood and the path includes a few elevation gains and losses varying from 100 feet to five hundred feet. If I skip a day I am tempting increase pain levels and possibly a cramp in the next few days. Skipping two days in a row is more than likely going to cause me a cramp the next day after a walk. It took over a year to get to that level. And yes it hurts. The first couple hundred yards is where I have to fight back my body saying not to do it. The endorphins kick in at about a half mile. And two or three times a week I try to do it as fast as I can.

The second way is to turn or move in a way I have not done before or recently. It’s like the nerves have to relearn the motion. It happened today when I turned my upper body around to point out something to the person sitting behind me of something behind them. I was lucky in that I felt the cramp coming on so I stopped the motion before a full cramp occurred. I only got a baby of a cramp and it was gone almost before it started. The cramps I mentioned are almost always in my legs but I do get them in my hands. Anyway this brings me to the third way I get them and ties back into the first way.

The third case occurs when I am asleep. I have trained myself to wake up when I feel a cramp coming on and then when I am awake enough to know I have one coming on I get out of bed (sometimes while in shear agony) and stand up. Slowly, and usually, the cramp subsides. Depending upon my thoughts of if and when it will come back I walk around for a little while. Maybe just to get a sip of water but then at times I need to walk for half an hour.

These cramps range from small little things that go away quickly to cramps I manage after an hour to get to go away. Most of the cramps require no medication, a few require a tablet of tizanidine and I think I have been up to two tablets followed by another two fifteen minute later followed by another two a couple of hours later. And in those more intense cases I needed to be on a cramp watch for a day or so.

So in summary, for me I know the root cause of the cramps and that is increased physical activity. One of my neurologist said not to increase my activity—and I decided never to see that neurologist again. Why? Because I want to live my life as close to how I lived it in the past. The neurologist that did the operation said do what you think is right. And that is what I think is right. The more I press my body, of course only increasing a little at a time, the more I can do the next day, and the next day and the next day.

I am a very lucky person. I worked hard all my life and moved back to Hawaii, where I was born, a year ago. I live on Maui and most days of the week I paddle a one man outrigger canoe from three to ten miles. It is whale season so there are for around two to three months each mother is with their calf teaching it how to live, from feeding, to swimming, to diving to rolling, flapping its fins, diving and all the things whales do. There are pods of them and on a the peak of a few days ago I saw ten to fifteen of these whales swimming around and doing what whales do. Usually when I paddle it is very peaceful and calm. Sure I worry about cramps and I remember when I could bearly stand. I remember the day I awoke from the surgery wondering if I was a quadraplegic, a paraplegic, would I feel anything, could I move. Yea, we all have been there. I remember the very slow progress that I made to be able to stand, to walk, to carry a small item in my hand under the increase in pain in my legs and without falling over because of my poor balance.

It is hard work to get better. I am still getting better but it is still hard work. I know it is scary. But it is within all of us to do what is needed.

I apologize for being so long winded.

Duke

Duke

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@dukestur thank you for all the information about how you get cramps. It gives me a better understanding of my own situation.
Sleeping at nite is not easy for me and the fact that I get cramps lying on my bed and when I get up doesn’t make it easier. However, I want to believe that I’ll find a way around this with time, because I am a very active person usually, and I’ll be miserable if I can’t walk (even if it’s a few meters) and dance while listening to my favourite tunes because of cramps. Dancing and music are my antidrepressants of choice, especially in a very cold place like Canada.
Enjoy your life in Hawaï, you deserve it!

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I am SO sorry you are going through all the pain and spasms. I am just starting my 6 month of recovery after surgery on an AVF on T5. I have experienced all of the symptoms you have described and more. I am now doing acupunture once a week and taking chinese herbs. I know for sure the acupunture is helping to loosen the muscles in my back and helping with blood flow. Whether the herbs are helping or not is hard to know but I know they aren’t hurting me. Gabapentin is helping a lot with the pain. I had been taking a muscle relaxant but haven’t needed it lately. After I was released from OT and PT I now work out with a personal trainer 3 times a week concentrating on strengthening my core and my legs and back muscles. I walk 4 miles a day (but still in the house and half barefoot. I now do two miles in shoes but am not steady enough to walk outside. I still have spasms but not as bad as before. Pain builds as the day goes on but now tolerable lying on a heating pad. I also still do hand and body exercises with the walking every day which averages about 5 hours a day. I take one day off a month which I look forward to immensely. I’m trying to celebrate every little improvement to keep me going. Hang in there and keep doing as much as you can every day. You aren’t alone! This site has been a great source of inspiration to me and to hear people’s comments as they progress. I have the bladder issues but not bowel which sounds like it is very common. Mine is difficulty emptying my bladder so a constant feeling of needing to urinate. I have tricked myself into making a habit of walking when I am talking on the phone. It has become so natural I actually get out of bed when someone calls and start walking - even if I’ve done my miles for the day. Talking to someone is a great distraction and keeps me going. Keep going I know you will see improvement even if it is slow as it seems to be for all of us. Hang in there and no you aren’t alone!

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Thank you @nancym for your reply. Wow, I’m amazed by all the things you’re doing.
I had a very bad time these past couple of months because I wasn’t monitored by any specialist and I felt lost. Now that I am part of a rehabilitation program - it hasn’t started yet, but I hope the waiting list won’t be too long - and I have been assessed by two specialised physical therapists, I feel motivated and a little less discouraged.
I am seeing my GP in two weeks, so I’ll ask for a muscle relaxant.
In the meantime, I bought a TENS unit to help me with my back and knee pains, and the spasms too. Its helping. I stopped taking the acetaminophen since they are not useful. I can handle the tingling and needles mostlty in the lower part of my body and I hope it is a sign of healing.
I use a heating pad too.
While waiting to be integrated in a PT program, I’m doing yoga, pilates and very low /slow cardio training exercises for beginners (on YouTube), since I have no endurance. I have to rebuild my muscles too. There’s so much to do!!! Like you, I exercise every day but I have no trainer.
I also just started to go to a perineal clinic for my bladder issues and the exercises I’m doing are helping me already.
The constipation issue is the hardest and I hope I’ll find a way to manage it better because it affects my quality of life a lot.

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Karin, have you tried Benifiber for the constipation? I have learned if I lean forward as far as I can and use my stomach muscles, I do better on emptying my bladder. I bought a new mattress today that will allow me to adjust the bed like a hospital bed and has a four zone massager. I get it next week so am hoping changing positions will help with the leg, foot and ankle cramps I get at night. Usually I have to get up and walk them off.
I certainly understand being cold in Canada - I grew up in North Dakota. What province are you in?
Glad to hear you will be getting into a formal program soon I have found both my PT and OT to be fabulous and helpful.
It is easy to get discouraged because we are all on a long recovery journey. I’m trying to celebrate every little improvement even if it’s small to keep me going! Send a note anytime and warm regards
nancy

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Nancy, I live in the province of Québec, and yes I speak French, but I was born in the West Indies.
I wish you’ll have some relief thanks to your new bed. Virtual hugs,
Karine

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I was diagnosed with a spinal AVF this July 2023. I had a spinal angiogram to see if it could be treated. Four days later I underwent a spinal dural embolization to shut down the AVF. Thankfully the procedure was successful. 14 platinum coils were used to shut down the AVF that occupied my entire neck region (base of skull to C8). I was in ICU for four days and monitored hourly as the doctor was afraid I might become a paraplegic - if the surgery was unsuccessful. Thankfully it all worked out. Its been a journey but five months post embolization and I’m walking, I can feel my hands and feet again and I’m living with much less pain. Its been hard for sure…still on dexamethasone steroids to help with the inflammation and pain but almost weaned myself off of them. Other than that I’ve been taking tylenol and Advil when needed. Doing lots of walking, qi gong and just started going to the pool to strengthen my arms/shoulders. This has been the hardest thing I’ve ever had to go through. So thankful for this community and knowing that others have made it through. There can be happy outcomes! I had my embolization done at the University of Alberta hospital in Edmonton, Canada. It was the first time the doctors had treated this sort of condition. Beyond thankful of the outcome.

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Hi @hmg, welcome to this wonderful community and congratulations for your prompt recovery! You are doing great! I had my craniotomy+embolization at the Ottawa Civic Hospital and was taken care of by a great team of neurosurgeons who were used to treating AVM’s, which was a blessing in my case, as my fistula was aggressive and complex. I had my last yearly follow-up with my neurosurgeon today, who gave me a maintenance plan for the rest of my life.
I live in Gatineau (Quebec), near Ottawa (Ontario); I cross the bridge to get to the Ottawa Hospital.