I believe I have mentioned that my shunt revision in April has failed. I am scheduled for another revision this coming Thursday.
I imagine none of us enjoy this part of our lived experience. Personally, I am resigned to the conclusion my reaction to it is probably an undiagnosed traumatic response.
So this is why I ask, what are some pre-op rituals you do to keep your mood, or positivity up?
Curious what the longest duration it has taken you to heal from a shunt revision.
I had one in April, and I'm still experiencing symptoms of hydrocephalus. That said, I incurred two brain bleeds during the surgery, so I expected it to take longer.
Latest CT shows enlarged ventricles. I certainly feel that's the case. My head pain manifests with a persistent pulsing that increases with any sort of straining.
My surgeon suggests we go back into surgery. I have a second appt to see a second surgeon.
A little back history: In 2022 I had an entirely new shunt put in on the opposite side of my old one at 39. I'm now 43. That new shunt failed last year in Oct. I was in denial and endured until April of this year.
The last time I got an entirely new system at the age of 9 it lasted 18yrs. Then that revision lasted another 11 years.
I have lost a considerable amount of trust in my surgeon despite his very impressive resume. I haven't had this lack of success since birth which obviously I don't remember.
I'm frustrated as hell. This surgery especially is traumatic for me due to previous experiences. While I have endure a couple of long durations of good flow, this surgery just does something to me...
If you have any guidance or support, I'm all ears, or eyes.
Back in April I had a shunt revision to replace a clogged valve. Unfortunately, I incurred a brain bleed during the operation. One ocular, and another near the site of the catheter.
I'm still experiencing vision trouble, and a persistent pulsing in the back of my head. Both symptoms have certainly improved.
What I was wondering is if anyone has had similar experiences, and how long should I have to expect being patient?
My surgeon has said due to my age (43) that the intensity of the pressure will not show up on CT. Determination of whether the shunt is working is largely based on how I feel, or, a surgical pressure test could be performed.
Also of note, I had a fully new shunt put in in 2022 after the long catheter in my torso literally fell apart into pieces. The hope has been that I soon won't need a shunt at all since the amount of CSF declines with age.
Anyway, could use some stories to relate to if anyone has them.
Back in April I had a shunt revision to replace a clogged valve. Unfortunately, I incurred a brain bleed during the operation. One ocular, and another near the site of the catheter.
I'm still experiencing vision trouble, and a persistent pulsing in the back of my head. Both symptoms have certainly improved.
What I was wondering is if anyone has had similar experiences, and how long should I have to expect being patient?
My surgeon has said due to my age (43) that the intensity of the pressure will not show up on CT. Determination of whether the shunt is working is largely based on how I feel, or, a surgical pressure test could be performed.
Also of note, I had a fully new shunt put in in 2022 after the long catheter in my torso literally fell apart into pieces. The hope has been that I soon won't need a shunt at all since the amount of CSF declines with age.
Anyway, could use some stories to relate to if anyone has them.
Back in April I had a shunt revision to replace a clogged valve. Unfortunately, I incurred a brain bleed during the operation. One ocular, and another near the site of the catheter.
I'm still experiencing vision trouble, and a persistent pulsing in the back of my head. Both symptoms have certainly improved.
What I was wondering is if anyone has had similar experiences, and how long should I have to expect being patient?
My surgeon has said due to my age (43) that the intensity of the pressure will not show up on CT. Determination of whether the shunt is working is largely based on how I feel, or, a surgical pressure test could be performed.
Also of note, I had a fully new shunt put in in 2022 after the long catheter in my torso literally fell apart into pieces. The hope has been that I soon won't need a shunt at all since the amount of CSF declines with age.
Anyway, could use some stories to relate to if anyone has them.
I have read that barometric pressure causes some people discomfort. I have certainly found this to be the case for me as I've gotten older.
My cognition slows, and often is accompanied with a migraine. I am on my second month of trialing Emgality for the migraines. I did receive some relief.
I was wondering what some of your experiences, and step ins are if this also applies to you.
I have also found that taking a B Complex supplement is helpful, though not for very long. If you have found any relief that is pharma-adjacent, I would love to know.
I've been lurking here for a while reading posts and interactions to see if this is the right community to seek some support and guidance.
I'm cis-male, 43, T12-L1 incomplete manual wheelchair user.
I grew up playing sports. Excelled at them. I played basketball for the University of Oklahoma and still reside not far from there.
I have been extremely fortunate most of my life. Lately, shit's been really hard. It began with bladder issues. Recurrent UTI's. I found a solution, which luckily was just behavior habits with what I was consuming.
Where things have gone awry that I haven't found solutions for is the bowel issues that began about 5-6 years ago.
I have digi-stemmed since about age 6. By the time I began exercising and playing sports in my teens, even that wasn't always necessary. Now, I don't have conscious control, but I have sensation enough to know when I need to go and how urgently.
In hindsight, the bladder/bowel thing happened in pretty close proximity in time. I don't know if, or how they may be related. For a long while now, stemming alone does not result in a BM. Only the use of dulcolax + stemming does. It takes FOREVER. At least in comparison to my earlier experiences, and I hate it. Additionally, I always feel urgency, and do not pass gas voluntarily like I used to leading to constant abdominal discomfort.
I have been a hobbyist, sometimes paid wildlife photographer for years, and this has wreaked absolute havoc on my lifestyle. Being in nature is how I manage my mental health. I feel like I'm losing the things that mean a lot to me and that which makes me...me.
I have never wanted an ostomy. Doctors just throw laxatives or stimulants at me which are too aggressive and change nothing. I am planning to see a rehab doctor who can hopefully guide me to some therapies.
Does anyone have a similar experience, and did you find any solutions to recover your independence?