Hi All,

My name is Andy. I'm 42yo. 8 weeks ago I was diagnosed with a Posterior
fossa Arachnoid Cyst. For reasons unknown the cyst, after sitting there for
42 years decided to reek havoc on my brain. I literally woke up one morning
and had lost my low range hearing in my left year, my balance got way
out of wack, with what I call waves of vertigo...

2 weeks ago I had my peritoneal shunt system installed...

I need to mine the groups brains for some insight.......

Since the surgery, I've been really tired. When I say tired, what
I mean is brain tired, I feel mentally exhausted, not physically. I just
can't get motivated to do anything. It's like my brain is telling me to
stop and rest. I'm fine in the morning, but after a few hours I go down hill. In the evening if I sit down for an hour or so, I feel more energetic for a short while....

I thought about depression, but it's not the same feeling. I'm generally in a
good mood. I've been depressed before and I know that feeling. This is
different.

Has anyone else experienced anything like this?

I didn't feel this way before the surgery. My uneducated guess is that I have all this foreign tubbing in my body, so my body is using all it's energy making those killer t cells to eradicate it from me....

My other question is... since the surgery I've been experiencing minor cramping in my mid section. Not where the end of the tube was placed but
on the opposite side and in the middle... anyone out there experience
similar????

Yes, I do admit I'm a typical whiny male, but I would still appreciate any and
all comments/insight.....

Thanks!
Andy

(((((((((((((Andy)))))))))))))).

I posted to you under the New Members forum, but I'm glad you posted here, too. The fatigue may be a drainage issue. Even if your pressure is "within range," you probably have some sensitivity to varying pressure, so a change in position or even a change in air pressure from weather can make the brain whine. A slight adjustment in pressure setting (if you have a programmable shunt) may make all the difference. Mention it to your nsg. You don't have to live like this. It could also be, as you mentioned, a "getting used to" issue, which should be overcome in time, but mention it, anyway, to be sure.

I have lived with hydro all my life, so I can answer other questions for you, just holler. (I haven't had the opposite side abdomen irritation prob, so I can't help with that. someone here or on another forum may be able to, though.)


Good luck!

LIZARD

Lizard....

Thanks so much for your reply....
You put my mind at ease... I already feel better.
I had my second after surgery benchmark CT on Friday.
I'll be seeing him this come Friday to look at the difference
and adjust my flow (that sounds so strange).

I'll definitely bring it up with him...

Hey.... congrats on the weight loss. 91 is freakin awesome. You
should be very proud... I need to jump on that band wagon myself..

Andy

Hey, Andy.

Thanks for the weight loss congrats. I still have about 65 or so to go, but I'm prepared to take awhile to lose it. I just went to an endo yesterday for suspected hypothyroid, and she thinks I may have Secondary Hypothyroid due to hypothalamus damage from a lifetime of hydro. I have noticed I'm having a much tougher time with my blood sugar crashing, but I can say WW is the best program out there. The treatment may involve ACTH (a hormone we all make), which appears to be deficient, and it's possible I could gain some back from it, but at least it's a temporary thing. The weight should come off again once I get off of it.

Oh, the joys of living with a middle-aged screwed up brain...


LIZARD

Andy,

I too have had a shunt put in to relieve the presure of an arachnoid cyst. The headaches are finally gone, but has left me with this horrible vertigo. Felt really good 3 weeks after the surgery, then tried to go to work and fell over?
Still dealing with the vertigo.
Hope you are feeling better.

Hi Andy,

I thought I was the only one having such symptoms after my surgery a few years back! I have had Hydrocephalus all of my life (I was born with it). I don't however, have the other condition you mentioned. Even still, it's good to know that there's someone else out there that knows how one feels. It's not the same when a medical professional who does not experience the same issues, says they know how you feel. I do not say this to put medical professionals down at all (Lord knows we need 'em around! )! It just seems as if they are understanding, but from a *knowledgeable* point-of-view...which isn't a bad thing. They just *possess experience* of such things from a scientific stand-point...

I had this after my surgery in '03. The thing that got me was when I first ran water over my head to shampoo a few nights later...the vertigo actually hurt!


I can relate to the mental fatigue as well. I have been living with this type of fatigue since my surgery in late '03. When my brain "gets tired" like that (for lack of better words...! ), I just have to sit down or crash-out on the couch, and let my body relax too. Because I think that if one's brain is trying to *take a breather,* then the body should too in order to avoid other issues (such as any possibility of injury from staggering or falling et cetera...).

I do not even try to think when I get this way at all. I just (after making sure the doors are locked and so forth) let myself go for a bit. If a thought happens to cross my mind, I just notice and continue to either be still, or take a power-nap for a bit...

This could very well be... I wondered the same thing after a full replacement of my VP shunt back in '03...It almost seemed like my body had never been *acquainted* with a shunt before ... I asked my nsg about this, and he said that this (accompanied by phantom pains) was normal...

I had severe muscle spasms in that area too! My nsg gave me a muscle relaxer and pain killers for it -- this helped very much!

In this case/situation, I wouldn't say, "whiny" at all, but concerned. If it hadn't been for your post on the topic, I would have felt lost about quite a few things...! There's never a thing wrong with asking when concerned about your health. Sometimes we just need to know that there is someone out there who understands...

Thank you for the post!

Yours,

DC

Andy--Hi, do not have much time so this will be short--Surgery in 1992 to remove colloid cyst in Foramen of Monroe--never felt the same--Hydo back in 2006-scare tissue from first surgery-May 2006 vp shunt installed--do not feel good most of the time--I always have cramping--one side or the other-it is better then right after the surgery--i am 53--sorry but that is all I have time for right now--hope you are doing better--keep in touch--Tom in hershey PA

Welcome to our little group!

Many of the issues you mention are problems for most people who have hydro. I think that most people would say they have "pains" (for want of a better word) in their abdomen, which are almost certainly from the shunt. Although I must say my pains have always been on the same side, not the opposite side. I can understand when you talk about the tiredness, because I am tired almost all the time too, and become more tired towards the end of the day. I sometimes feel as though I'm in a "fog" . I have had my shunt almost all my life though, so I can't really compare a 'before' and 'after'.

With any shunt revision it will take time for your body to adjust. A shunt is a foreign body, but the materials used are known to be safe for use in shunts. Quite a lot of research has gone into developing appropriate materials.

I wanted to give you some reassurance, that you are not alone on this "journey", and it is quite normal for you to feel the way you are .

Nat.