Just posting an update as to how my recovery is going so far and would appreciate some input from all of you.
As per my initial posts - T7 Spinal DAVF operated on in June last year; first 6 months of recovery quite erratic with flare ups of numbness in lower extremities and saddle anaesthesia, also general constipation related problems. By end of December though, things were looking on an upward trajectory.
Since turn of the new year, I have started suffering from neck pain, with change in hand sensation, a muscle weakness in my arms, and in the last couple of weeks, a general brain fog/light headedness particularly when standing up and trying to walk anywhere. Today, I’m also starting to feel a strange change in sensation on the left side of my face as well. Initially, I had attributed all of this just as another phase of the recovery, e.g. nervous system rewiring itself. Neurosurgeon team aren’t overly interested, almost as if they are viewing this as something different to the initial condition, I.e. above the site of surgery therefore not their problem. Return trip to the doctors this week had him sufficiently worried so as to put in a separate neurology referral (because who knew neurologists and neurosurgeons were different disciplines!), although I have no date for this. As it stands though, I feel the same as I did last year in hospital in terms of not knowing what on earth is going on. Am I staring down the barrel of a different neurological issue entirely here (e.g. MS, or would that have been obvious on the many spinal MRIs I’ve had), or in any of your experiences, is it common to get symptoms such as these so many months after a fistula/avm repair lower down? Feels as though theres so many different pieces to the puzzle here (including the constipation - had my appointment with the colorectal unit they ordered further tests, agreed that it sounded neurogenic but also said it was unusual to have it like this without any real bladder issues), and nobody in the system has pieced them together yet.
I’ve not personally heard of new symptoms like these being experienced so many months after the surgery so I think you and your doctor are doing the right thing with the new referral, hopefully new scans etc and treating it in isolation of what has come before so as to see things with a new perspective. I hope you get to the bottom of it soon.
Hi David
Yes i agree with Danny as it seems a different Issue not related to your last t6-7 spdavf removal as i also went thru same spdavf t6-7 surgery in March-2022.
You need get seperate investigation on new development you feeling N can go to ER for fast process if feel sudden Issues.
Regards
Syed
I, too, had a spinal DAVF removed from my spine at the T7 level–back in 2008. I regained about 90 percent of function, albeit with residual symptoms like tingling/numbness/etc. The bowel issues are called Slow Transit Constipation, which you learn to live with, although I also suffer from what’s called Urinary Urgency.
In 2023, I began to lose function again, going from walking independently, to using a cane, to using a walker. On the theory that If You’re a Hammer, Everything Looks Like a Nail, everyone assumed that my SDAVF was emerging again. Two angiograms, and multiple MRIs later, my arteriovenus system was given a clean bill of health. The best my doctors could say was that my loss of function was due to old age.
Well, a diagnosis of old age is less a diagnosis than an admission of ignorance.
I had to start from scratch and find a new team of doctors. I reached out to Weill Cornell in NYC, sending them all my imagery. They believe I have developed what’s called an arachnoid cyst in my spine, which could be responsible for my symptoms. I’m being scheduled to go up north for a specialized MRI and possible surgery. One can only hope.
My point is, go for the best. Local doctors, including neurologists and neurosurgeons, have limited experience with such arcane diseases as we have. You have to go to those with the most experience–those in big cities.
If you don’t mind me asking- what sort of things did you end up with to manage the slow transit constipation? I was initially discharged from hospital without it being an apparent problem, it took 6 months to get a referral into a colorectal unit to help look it it and I’ve tried to see 2 different gastroentorologists. Second one ordered a colonic transit study and told me it looked like classic slow transit constipation (he prescribed a drug call prucalopride which I’ve been reluctant to start as I’ve heard bad things about the side effects), currently awaiting a proctogram and potential biofeedack sessions. Been pretty much taking 3 sachets of laxido (macrigol basically) and senna daily for over 8 months now, with an added reliance on glycerin suppositories since January, really not sure what the nerves at the rear end are doing, I.e. whether I’ve lost the proper urge/reflexes to go or if I’ve become over reliant on the many laxatives.
I go the traditional route. I eat a lot of oatmeal. And I use glycerin suppositories on occasion to help the load go the extra mile. Generally, I have 1 or 2 bowel movements per week on this regimen, which works for me. Stool softeners never seemed to do much. I’ve tried psyllium husks on occasion, with erratic results. Also metamucil, which is basically just psyllium. Too much fiber = too much flatulence. Like you, I really can’t tell what’s going on down there–nerve loss, I guess. I’ve learned to identify when a load is coming through–a feeling of heaviness in the rectum, as well as increased flatulence, which means stuff is fermenting in there, and it’s time for a suppository. Never tried stronger drugs. After 15 years, I’m accustomed to the process. Not fun. Probably the best thing is to change your diet: lots of vegetables and grains, low meat, you know, a healthy diet with a fair amount of fiber. Wish I had better advice, but that’s it.
Hi David,
Y immediately after my spine surgery no major change except buring sensation in pee as Neurogenic bladder after i get a uti but later after a month Constipation.
Although never require need use suppository Initially i start Colace clear tablet 100mg od then felt much improvement n later off and on use matemucel or flex seed , silium husk etc .
Now adays i use 1 table spoon Restorolax and i feel much better, My Dr said u can take restorolax for long term use if need.
So it seems good results .
David / Danny : If want share further experiences n how to mange n Due to very similiar Spdavf situation i like to have yr email or whatsapp # so we may share n help guide each other but only if u people agree.
Thanks N Regards
Syed
From ModSupport- please use the private messages to share private information
I had a spinal DAVF fixed at T10 in Oct 2015. A few weeks after the surgery I was able to walk again, with residual issues like pin & needles at my foot and balance. I had a few falls and to avoid that I walk short distances with a walking stick and longer distances or un even terrain using a walker. In 2017 I start to getting spasm on my lower legs which was treated with Baclofen tablets. Due to the high dose of Baclofen 80mg/day, the specialist told me at the long run might cause kidney damage. In Jan 2020 an ITB pump was implanted in my tummy and supply the Baclofen using a small catheter to my spinal cord. My current dose of Baclofen is 500 micro grams/day, far less Baclofen than the tablets. ITB = Intrathecal Baclofen.
The symptoms you described look like a very different issue and not from the DAVF. Please check with a neurologist to diagnose.
Hi Franz,
Whats result of baclofen itb use And did you get relief from spasm in lower limbs, i also have same issue of spasm esp in knees and foot souls with unbalance like standing on bubble zig zig funny feeling since spdavf spdavf surgery. Just curiuos to know as i dont use any such meds due to many side affects.
Regards
Syed
After ITB pump implant I can walk much better. Baclofen tablets has many site effects, but not Intrathecal Baclofen, because of very small dose used directly where it is needed in the spine cord.