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Spinal AVM/F - surgery and bowel issues


#1

Hi I was recently diagnosed with spinal dural av fistula (T11). I just had angiogram and embolization but the embo didn’t get the entire fistula so surgery may be an option.

I’m reading these posts and it almost looks like for some people the AVM symptoms became worse after surgery before they became better. Am I understanding that right?

My other question is about bowel issues. I’m having fecal incontinence. What are people’s various experiences after surgery? I don’t want to gross people out but I kinda want to get advice for what to expect.

Thanks so much. This forum has really been a great source of information and positivity for me.

Stephanie
San Francisco


#2

Hi Stephanie, you are right. Symptoms do seem to get worse before getting better, at least mine seem to. I am 1 1/2yrs since angiogram and ablation. I have burning all the time and balance issues, uncomfortable at best. I empathize with your fecal incontinence, I have the opposite issue. It can be debilitating sometimes. The best advice I know of is to retrain your bowels. Set yourself a schedule so your body becomes accustomed to going at certain times in the day. It’s not foolproof out may help. All the best.


#3

Thank you Jolan! I just had the surgery yesterday. Well see how it goes. The anesthesiologist (who is actually my sister’s friend) talked about how important diet is to help nerve regeneration. She talked about omega 3 and fish oil a lot. Also one of the nurses suggested warm prune juice for helping


#4

Hi
Your anesthesiologist is so right diet makes all the difference. I try (most of the time) to adhere to the whole30 way of eating and find I feel much better. I think I have less inflammation. I eat fish high in omega 3 several times a week.

Glad to here you got your surgery. How are you doing post op


#5

How are you doing? I hope you’re doing well.

Very best wishes,

Richard


#6

Hi Gulman,
I hope your surgery went well and you can begin your road to recovery. I walked into the hospital on my own and after surgery I couldn’t feel my legs. I had a catheter and I honestly don’t remember having a BM the first week after…however, when I was sent to UofM for inpatient I had an accidental BM when they were beginning a PT session. I was so embarrassed! I had to do intermittent cathing and they had me do a “bowel program”. Empty my bladder every 4 hours and every evening a suppository after dinner. I stopped the suppositories and manage to control things. BUT if I wait too long when I know I have to go, I will have an accident. I’m 1 1/4 years post surgery. I only cath at night and in the morning to make sure my bladder is empty, but I go on my own.
Things do get better over time and I have slowly changed my diet to include tons of veggies and fruit and I think that really helps too.
I wish you all the best in your recovery and do your best to keep your thoughts positive.
Sincerely,
Joanne


#7

Hi Joanne, Richard and Jolan,

Thanks so much for your responses! Its so helpful. The more details the better so I really appreciate it!!

I had my surgery on 6/20/18. Today is 6/24/18. I had another angio 6/22/18 which showed all of the fistula was cauterized. So the Doctor calls the surgery successful which is great news.:smile::sweat_smile:

Post op thoughts:

  1. My back hurts! Duh… I had a laminotomy which is supposed to be less invasive than laminectomy. Nevertheless even minor motions are very very painful. Had catheter and drain tube in my back post surgery.

Im still supposed to ask nurse to help me each time I want to get to commode. Ive mastered the “logroll”. It isnt easy bc I still have pain in each femoral artery that they used for angiograms. I learned I have pretty low pain tolerance threshold. :sob:

  1. 1 day after surgery the nurses asked me to sit in a chair for an hour. Getting out of bed was really difficult, my head was spinning and I felt nauseous. Sweat dripping down my face. Was told all this is normal.

  2. 2 days after surgery was asked to go on a walk with a walker. Very slow and tentative moving down the hallway post surgery with walker. I
    walked into the hospital on my own on 6/7/18 for angio/embo and in rehab after embo, graduated from walker to cane. Now I’m starting over but I understand surgery is more invasive than embo so that makes sense.

  3. I was taking narco and morphine for pain. They ended up making me extremely constipated. So constipated that I couldn’t pee. So now I have bladder catheter again. They also gave me double dose of laxatives plus stool softeners, milk of magnesium, suppository. Now Ive had diarrhea for 2 days and having accidents in bed bc I cant get up soon enough. Sorry if that’s tmi. Today I stopped taking narcotics for pain, just tylenol.

  4. I’m waiting for insurance to approve rehab.

That’s it for now. Thanks again for all the responses. This forum and the people on it have been a godsend for me.


#8

Stephanie,

It’s great to hear from you and it sounds to me like you’re doing brilliantly. Do share your recovery story – the ups and downs – because I think you could help others in future by their finding your progress.

Very best wishes!

Richard


#9

I am sure you will be ok, things will start clearing out after 2 weeks. I had my op last December and the strength I have today is amazing. Keep postive as it is 50per cent of the cure.


#10

Hi Guze thanks for the words of encouragement. Indeed I’m 2 weeks since operation and back pain from surgery has all but disappeared. I’m trying to eat more fiber so that helps w/ constipation. I think a lot of those issues were caused by the narcotic pain meds post surgery. Most of all I’m so happy to read about your results!!! I think about your words often since right now I feel like I’m walking worse than when I entered the hospital. I’ll definitely try to keep a positive attitude as I enter the recovery/rehab phase. My neurosurgeon said he’s done his part, the next phase is up to me.


#11

Hello again Stephanie,

I thought this would be a good place to reply to your topic and update you on my progress since being released from the hospital.
As I mentioned briefly, I too have had a set-back in my ability to walk since surgery. I notice my balance is a tiny bit better because I have a slightly better sense of feeling in the soles of my feet. A positive sign. On the other hand, my ability to control my leg movements are sluggish compared to my pre-surgery state and requires a lot more of a concerted effort to complete a stride which leaves me looking for any external form of support for fear of stumbling. Prior to surgery I could, slowly, negotiate stairs by firmly grasping the handrail. Now I need both the handrail and a cane.

I actually collapsed going up my hardwood staircase three days after returning home. Half-way up, gravity and my leg muscles came to a stalemate, with gravity slowly winning. I knew if I went straight down on my knees I would risk sliding down the 6 stairs I had just climbed. I also suspected if I rotated to sit on the closest step I could risk injuring the incision site on my back by scraping against the next stair up from where I would be sitting. I elected instead to abandon my cane (it was of no use at this point) and grabbed the handrail with both hands and “crumple” into a ”side-saddle” position on the closest stair. Now, what to do?

I had no power to lift my legs up, but could feel I had the ability to push upwards by digging in my heels. So my plan was to pull my feet up to the step below where I was sitting by grabbing my sweat pants below my knees and pulling my feet up into position and then, with the palms of my hands on both sides of my body on the stair above me, simultaneously pushing my legs straight through my heels and pushing my arms straight through my palms and thus lifting my butt to the next stair above. And repeat until I got to the top landing. Great theory! I quickly discovered my arms were about one inch too short!! I was able to quickly modify the procedure by reaching up and back with my right hand, grasping the handrail and while pushing with my legs and left arm while hoisting with my right arm, manage to get to the next stair above me.
Once on the landing, and after a few failed attempts, was able to roll over to a position where I was on my hands and knees and could then crawl to my bedroom and ultimately to the footboard of my bed. Fortunately my bed frame is made of a very solid hardwood and I was able to push up to a standing position and then maneuver myself to the side of the mattress and flop down into a prone position on top of the mattress. That was 30 minutes of hard work. I was sweating profusely and breathing hard, but I made it. So much for the “No Lifting, No Bending, and No Twisting” instructions I received when discharged from the hospital :sweat_smile:. I have had no re-occurrence while negotiating stairs since that episode.

But enough about my legs and back to the topic at hand – Surgery and Bowels.

I am experiencing some issues with my bowels as well post surgery. I have had a mishap and as a result take full advantage of trying to relieve myself on a regular basis whether I “feel” the urge or not. Apparently I have lost some control/sensation of my sphincter muscles. I was told this issue is not an unexpected result after this type of surgery due to increased swelling and spinal cord compression (in my case from T-11 all the way down to the Conus). The doctors carefully refrain from using the terms “normal” or “temporary” as they have little meaning since everyone is different. But the expected result is improvement as the swelling subsides. They are also attributing my collapse on the staircase to the increased swelling as well.

Now, my bladder issue is a different story. Certainly some of the intermittent incontinence can be attributed to the after effects of spinal surgery but in my case, there may be another underlying issue. Due to the AVM having not been diagnosed for so many years and the “good” doctors chalking up my ever increasing bladder issues to “just old-guy enlarged prostate” problems, further testing is warranted. In fact, I am going for a pelvic ultrasound (including kidneys) in about two hours from now. I am forced to self-catheter 4 times a day and track the residual amounts as mine are way above normal. We’ll await results!!

On another note, I am keenly interested in what your physio/occupational therapist prescribes for your rehabilitation regimen and please update with your progress once you commence your program. From all accounts I am several weeks away from knowing anything concrete about a rehab program for me. However, yesterday, I was given the go ahead to use a stationary bike (absolutely no resistance of course) in order to start training my body to produce a rhythmic leg motion.

As always, stay the course and setbacks are only there to have something to overcome!! As Sir Edmund Hillary once said, “It is not the mountain we conquer, but ourselves”.

Brent


I think I am an AVM Survivor Now!
#12

Hi Brent I love your literary style! I’m so sorry about your fall. It must have been so painful but for some reason it impresses me how thoughtful you were about how to get up again while trying your best to avoid the “no bending lifting twisting” rule. I also am feeling slightly more sensation on the sole of my left foot compared to prior to surgery. However I’m still waddling around. I fell once going down stairs during rehab. I think it’s because I was wearing socks and lost my footing.

Thanks for the bowel/ bladder info too. That’s really so helpful to me. I also feel lack of sphincter control. Have been told to try kegel exercises to help with bladder issues. Like you there’s more than one thing going on with me. Hope the pelvic ultrasound went ok. How are you doing with the self catheterization?

I’m attaching my exercise sheets. These were originally for after my embolization. They were modified after my surgery. Instead of “on your stomach” exercises I do “lying on side” exercises (side leg lift and clamshell). I don’t do “on hands and knees”. I don’t have any exercise balls at home so I just do the exercises as if I had a ball. I try to do these exercises every day while I wait for outpatient rehab to start at the end of July. I also looked up hamstring stretches on youtube. Another stretch I do is lying flat on my back I push my knees down as far as I can and hold. I’m lucky also to have at home physical therapy which is supposed to start next week. Will let you know how that goes.

In the hospital I had 2 rounds of in-patient acute rehab (one after embolization and one after surgery). Basically they consisted of 4 sessions each day lasting 45 minutes each. 2 were physical therapy and 2 were occupational therapy. PT was usually stretching then walking and stairs and various terrain. OT was usually how to manage every day living (e.g. dressing myself, kitchen) and getting me outside (sidewalks, crowded environments, bus). I liked something called “light gait treadill.” I also never stayed in rehab long enough to do pool therapy. Sometimes I would take tylenol or ibuprofin before the sessions to “pre medicate”. The part I liked the least was a “safety belt” I would have to wear.

Now that I’m at home I like going to stores to use shopping carts (I think a walker would provide the same function) in order to practice my heel-toe and also straightening legs without worrying about falling.

The exercise sheets might not be totally self explanatory. Let me know if you have any questions. I always enjoy reading your updates. :slight_smile:


#13

Hi Everybody,
I had an angiogram & embolization 1 year & 4 months ago. Yes, I had to learn how to walk again after my surgery. I found that using a walker really help me until I got my balance back. PT really helped with my balance & strength in my legs. Keep positive & do your exercises,
it will pay off. As far as bowel issues your diet is very important, but I also found that putting Benifiber in my coffee in the morning really helped me.
Does anybody have a lot of pain in the bottom of their feet when standing or walking on hard surfaces for 15-30 min? Sharyn


#14

Hello Stephanie,

Thank you so much for the exercise sheets you shared. They are a welcome resource. I have had a lousy few days so I haven’t started trying the exercises as yet but the plan is to begin Monday. For some reason the heat during the day (reaching around 30 degrees C / 86 degrees F) has just been sapping my strength. That, and the spasticity from my hips to my ankles, has caused me quite a bit of grief over the last several days. Speaking of spasticity, I think I’ll post about that issue later today or tomorrow.

I have an appointment with my general doctor this coming Monday to go over the Pelvic Ultrasound results. The test itself was routine but I won’t know any of the findings until my appointment.

The self-catheterization has been proceeding fairly smoothly albeit a bit of a bother when it comes to logging the results. My schedule for catheterization is every 6 hours at 12:30am, 6:30am, 12:30pm, and 6:30pm plus keeping a log of the amounts of any interim voids outside of those times. Thankfully, the logging comes to an end at 6:30pm today, by which time there should be enough data that a proper analysis can be extrapolated.

On a positive note, I received a call yesterday that I have my first appointment at the Neurological Sciences Community Accessible Rehabilitation clinic on July 31st.

While I was in the hospital, I did not have any structured rehab. I was encouraged to get up and walk around the hallways, always accompanied by a nurse or nursing aide of course. Because of the uncertainty of incontinence, I was “fitted” with a pair of Attends briefs during these walk-abouts. I’m sure it wasn’t planned, but the Attends were never cinched tight enough around my waist so, without fail, around half way through my walk, the Attends would end up falling down around my ankles. After the third time, I threatened to get a pair of suspenders in order to keep the Attends in place. My comment made for more than a few smiles from the staff. I wasn’t in the hospital long enough to make good my promise, but I think it would have made for a “Kodak-Moment” for sure. :astonished:

Keep me posted regarding your in-home therapy as well as your other progress. I find it so fortunate to have found someone, in of all places – a forum for AVM Survivors, who is in relatively the same stage of recovery from such a similar and rare medical condition (both type and location), and to be able to “trade” stories of that recovery. Even if I’m neither Asian, nor American, nor a female. :wink:

Keep smiling!!

Brent


#15

Hello Sharyn,

I find using my walker, (or more correctly- my rollator) a necessity to get around outside my home since surgery. Hopefully with physical therapy I’ll be able to get by with just a cane and eventually won’t need either (just some good old common sense)!

I’m finding diet will play an important part in my recovery. After 35+ years of working unorthodox shift-work my dietary habits are atrocious and it was clearly emphasized proper diet will be crucial to a speedier recovery. Trust me, at present I am no Nutritionist’s “poster-child” :roll_eyes:

I can’t give you any feedback regarding the foot issue. I can only wish I could stand or walk on any surface for 15-30 minutes at a time (after 5 min. I’m fatigued already). But right now, I have little feeling in my feet at all (pain or otherwise), but I have noticed a very slight improvement as to “knowing” where my feet are since surgery.

Brent


#16

Hi Brent,
I know I had to learn to walk again after my surgery too. It was like my legs were disconnected from my body. I had to really concentrate on how moved my feet & legs. Your PT will also help as long as you keep up with the exercises at home too.
Try to stay positive! Good luck!


#17

Hello
I am the same I had two surgeries for spine avm at t2 in 2017 and t5 on June 2018 .i. Âme back home on July 11 waiting for rehab .and I feel I am worst than before or someways better and other ways worse .the surgeon doesn’t say much when I tell him that I have new pain and numbness under my waist and more in my feet …
I don’t know what to think or beleave …my situation of leg stiffness started in 2010 and my diagnostic in 2016 after I had an hemorrhage in my spine .before my last surgery I was walking with a cane for shorts distance and after Surgery I am now using. Walker with more pain and numbness than before surgery as I mentioned …