Changes in Chiari at adulthood?

[Avocado Baby]

Hi everyone,

I was just wondering whether anyone has had changes in their Chiari/hydro in adolsecence or adulthood? I've recently had scans to check out my Chiari to see whether it's safe to go ahead with spinal fusion surgery.

I don't know whether my symptoms actually have got worse as I've got older or whether I'm just become aware of the cause of them from research over the last few years.

Anyone?

[Summer25]

My symptoms with chiari started at the age of 16, so yes. I never had any issues until that point.

[Avocado Baby]

Well, my short term memory is horrendous these days. The other day I took of my necklace and put it away. A few seconds later I had no recollection of doing it. I don't know whether my memory's always been this bad. My long term memory is brilliant!!

I saw the neurosurgeon yesterday and he said that I have 'large ventricles' but there's not much bone on the back of my skull so there's doesn't appear to be much pressure on the spinal cord and cerebellum. He's sent me for another MRI to see whether there's been any change since 2009. I doubt there has been, personally!

[LisaJoy]

Do you take oxybutinin? (Ditropan) It has been associated with short term memory problems. The research has only been done on people over 50, but if it can cause problems in that population, it seems like it could cause problems in younger people too. I worry about this because I'm pushing 47. My doctor says Botox treatment for neurogenic bladder is on the verge of being approved in the US, and it will be an option for me. (Approved meaning no longer considered investigational, therefore insurance will cover it. Some insurance companies already cover it.)

Also, I think some anti-depressants can cause short-term memory problems, too.

Anyway, just wanted to mention that some meds can cause that problem -- you should check on the possible side effects of what you are taking, as that could be the problem rather than Chiari. Doesn't necessarily mean you'd give up the med -- sometimes the inconvenience of the side effects is well worth it for the benefit (definitely the case with Ditropan for me, at least for now).

[Avocado Baby]

I have read that short-term memory is something that is affected by SB. I'm not overly bothered. It's annoying and embarrasing sometimes but I've lived with it for this long.

I tried Vesicare for a while but had to stop taking it because it gave me extremely painful acid reflux. The only drug I'm on long-term is Lyrica. I've read that memory problems and difficulty concentrating can be a side effect. I wouldn't be without it though because the pain relief is fantastic.

My urologist said he wanted to try botox on my bladder when I saw him in December. My leaking doesn't seem to be as bad since I've had a cystoscopy and seem to have got rid of the bout of recurrent UTIs I had (fingers crossed!!)

[LisaJoy]

If you end up with the Botox treatment, you absolutely need to let us know how it goes! I don't know of any adults on this forum who've had it, although I think a few of the kids have, with mixed results.

[Mustang Sal]

Lisa, I know of several people here in the UK who've had it done, and they've all been very impressed with it! It's still not officially licensed over here to be used on the bladder, but some PCTs (primary care trusts) will fund it - it seems to be catching on with more and more PCTs though i'm not sure if NICE (national institute of clinical excellence - the body responsible for approving drugs and treatments in the UK) are on the verge of giving it full approval or not. I've not considered it myself as I get on very well with Vesicare, but if anything changes then I would think about having it done.

[Avocado Baby]

Hello!

I went to the see a different neurosurgeon the other day. I got referred to him as he specialises in hydrocephelus and SB. I saw his registrar and he said that my scans show 'normal' levels of CSF. He also shone a torch in my eyes and asked me whether I get blackouts, visual disturbances or severe headaches. Other than the headaches related to tight neck muscles, no. I don't have any symptoms of Hydrocephelus but they want to do an Intracranial Pressure Monitor test. Not sure if anyone has had this, but it involves insering a 'bolt' into the skull and leaving it there for 24 hours so they can monitor the CSF.

I'm pleases they're being thorough but I'm a bit annoyed as I have no symptoms of Hydrocephelus and it means spending a whole day in hospital in London. Oh well!!:arrgh:

[Dodger67]

I could think of any number of better places to spend a day in London than a hospital!
At least you'll hopefully get a decent diagnosis out of the deal.

[Avocado Baby]

I could think of any number of better places to spend a day in London than a hospital!
At least you'll hopefully get a decent diagnosis out of the deal.


True, although I'm pretty sure the diagnosis will be Chiari II with normal pressure hydrcephelus!

[Dodger67]

True, although I'm pretty sure the diagnosis will be Chiari II with normal pressure hydrcephelus!

That's what used to piss me off the most about all the days sitting around in hospitals and clinics:
"Tell me something I don't already know or this whole day is just a waste of my time!":arrgh:

[Avocado Baby]

It was like that when I saw the spinal consultant and he told me I had a Chiari. Er...yeah....and...?

Surely I'd know about it if I the hydrocephelus was causing a problem??

[Avocado Baby]

Hello,

Well, I saw the consultant yesterday and I wanted to ask him about my short term memory problems, visual perception and eye tracking problems. He said that it could definitely be a sign of worsening Hydrocephelus and is another reason to do the test. We're looking at July now apparently.