Existing yet Maintaining :)

Mortality blows.

   Thu, May 1, 2008 - 8:31 PM
So some of you probably know l have hydrocephalus. lt was congenital, but for some reason the doctors reversed their originally correct diagnosis shortly after l was born, so l didn't find out until l was twenty five that l actually *did* in fact have hydrocephalus. Because there were 25 years of fluid buildup, my brain compensated for the growing lack of space, and is now actually supported by the fluid. While it's still possible, a shunt has been discouraged since they tend to malfunction regularly and overdrainage of the fluid in my brain could lead to much worse problems than what l'm having now...blood clots and such.

But for the first time in 32 years, l AM now having problems. l've had ongoing urinary incontinence, my migraines have increased in both intensity and frequency (from maybe two-three times a month to two-three times a week, sometimes for days at a time), l've had unexplained nausea and vomiting, and l'm starting to suspect that l'm having some memory loss. l've been drinking far less in the last year than l ever have, so l don't think it's the drinking, but l'm going to cut back to one or two a week to see if it makes a difference, but l'm not sure. l had a conversation with someone the other morning (as in, absolutely sober, on the way to work) that l don't recall having. l've lost whole pieces of conversations that l had days ago. And l'm having some balance issues here and there. The memory thing is tricky. l've always had a really good short term memory. My long term memory was never all that great, and l often remembered details wrong. l never remembered movie clips/phrases or books; this was often a blessing and a curse. l just took this as normal. But when l can't remember what l had for dinner three days ago, or that l saw someone on the street, it's worrisome. Apparently l had a conversation with my friend about one of her siblings a month ago, and l don't remember a shred of it. The only thing l remember is her saying l should marry him. l've been wracking my brain for two days about it.

So l made a neuro appt. My neurologist told me that it didn't seem like the fluid had increased since the last brain scan and the most recent one, but that sometimes the buildup is so slow that it's hard to tell by the naked eye that it's increased, even if it has, and even if that miniscule extra amount is enough to make a difference in physical or mental function. She says that since l'm clearly now exhibiting problems that are tied into the hydro, so we set up an appt with a neurosurgeon. He did some tests, said l was clearly having some coordination issues (l failed two or three of them, or at least wasn't able to do them properly, which was humiliating), and has ordered an eye exam to determine pressure, and a spinal tap. l'm absolutely terrified about the latter. l don't know why; maybe just because l've heard and read some horror stories about the pain. Side effects be damned, l'm scared about the pain. They better put me under, that's all l have to say. Depending on those results, we'll decide if l need surgery. This isn't fun anymore, and frankly, the only good thing to come of this so far is that it's helped me get some necessary priorities straight.

That's the *only* good thing. Did l mention that l've been discouraged from having children because it's likely this is genetic (since my brother has similar neuro issues) and that adoption isn't encouraged either in the case that l get worse and am drooling and talking to walls in a decade? l wasn't sure if l wanted kids up until this point. But l really fucking liked having the option.

l want to curl up and die.



23 Comments

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Thu, May 1, 2008 - 8:35 PM
(((((((((((((((((((((Ali)))))))))))))))))))))
Thu, May 1, 2008 - 8:58 PM
(((Ali)))

I can't help with much...but I've had a spinal tap and I can tell you that I was more scared then in pain. Infact I don't remember it really hurting. Some people get terrible headaches after but if you've been dealing with migraines all of the time that probably won't phase you much.

I'm sorry it's bad and scary and painful. I'm glad you shared it with us.
Thu, May 1, 2008 - 9:48 PM
I am sorry you are going through this *Hugs*
Thu, May 1, 2008 - 10:14 PM
oh wow, ali!
sending so much love and lots of big (((((hugs)))))
Thu, May 1, 2008 - 10:45 PM
As I have told ya before. It will be alright. It truly will be and it will all be as it is supposed to be.

That being said I understand the fear and anxiety not to mention the frustration of serious health issues.

Big hugs for you when I see ya
JSin
Thu, May 1, 2008 - 10:52 PM
(((((Ali)))))

SV is right about the spinal tap, I had one as well and as long as you're still when they do it, you should have no problems. I'm gonna send whatever I can muster of myself to encourage whatever powers that be to move things on your favor, darling.
Thu, May 1, 2008 - 11:25 PM
Hugs and stuff....
my best wishes and hopes for you.

One compensates for the memory stuff, there are tricks and techniques that a good neuro/psych doc can teach you (take it from one who's there). Cutting back on boozing is a probably real good idea. I don't know how it affects your condition, you might do some homework on that, but a little alcohol has a number of physical and mental health benefits if it's not a problem for some other reason.
Fri, May 2, 2008 - 12:21 AM
(((HUGS)))

Wow, so much to try to adapt to. Sad that they didn't catch it or reassess it again until you were an adult. So many what ifs to come to race the mind. My heart goes out to you <3 You have so many great things to share. I know you will continue to do so as well. I hope all of your assessments go as well as possible. I'll be sending positive energy to you.

Namaste,
~Wednesdey
Fri, May 2, 2008 - 2:09 AM
Blessings
Fri, May 2, 2008 - 5:44 AM
when i worked as a surgery orderly in my youth, i helped do a number of spinal taps. the procedure is a bit of a drag, but more uncomfortable than painful. please get this done soon! and don't marry your friend's brother yet. at least not until you can remember the conversation.
Unsu...
 
Fri, May 2, 2008 - 6:46 AM
I'm so sorry to read this!! I hope that the doctors can do something to help you!!!
Fri, May 2, 2008 - 7:26 AM
((((Ali))))
Fri, May 2, 2008 - 10:30 AM
Ali
I shall be thinking about you and sending the positive hippie energy your way.
Fri, May 2, 2008 - 10:44 AM
love you girl.
here if you need me, you have my number.

xoxo
Fri, May 2, 2008 - 11:36 AM
(((((((((Ali)))))))))))))
Fri, May 2, 2008 - 11:36 AM
i'm putting a big ball of love in a gigantic slingshot and aiming it at you. ready? look out, here it comes!!!
Unsu...
 
Fri, May 2, 2008 - 1:27 PM
No wonder you've been so quiet! I thought it was your brother that had this, not you. If you relieve the pressure, it should relieve the symptoms, and then you can get back to normal life, and it will be worth going thru this stuff to get that, and keep it as long as possible. Please do post the specific day in advance when you're going to have procedures so people can really ramp up and bless you. You've had some really rough events this past year, too. Lately so many people have been having shocking events and especially physically scary events but I have found that so far, they're all coming thru them fine. Especially when people are sending healing energy and blessings their way, and I've been the recipient of that too, and I can tell you it makes a huge difference, especially when you actually go to your surgery - it takes away the fear so much. So please do let everyone know - having received this energy, and knowing its power, the more we practice on each other the better we will get at it, and it's an awesome feeling both ways. You're a feisty and powerful girl, Ali - trust that. How many people could even go 20 years with such a condition and have nobody suspect it?
Fri, May 2, 2008 - 3:13 PM
"l want to curl up and die."

Please don't -- you're just too cool for that. Much to do, much to do!

Do you have buddies with you up there, people who will go with you to the hospital?
Fri, May 2, 2008 - 8:00 PM
oy veh
I'm sorry Ali.
You know, twice in my life I have finally given in and gone to the allopathic docs, and each time it felt dreadful, and each time I emerged feeling so much better afterwards that I wished I had done it years before. I hope this is one of those.
Giving up the booze might be a big help--I'm cutting down because I realise it has more and more adverse effect for less and less as I age.
Getting older is scary when the body starts to pack up. It's a foretaste of death. As well as terror of pain and needles and that kind of horribleness. I hope it is less bad than you fear, and I wish you lots of luck and that you will feel load better after they finish whatever procedure is recommended.
Get valium. It helps with The Fear.
Fri, May 2, 2008 - 8:38 PM
l'm feeling a bit better now
l was feeling a bit dramatic yesterday, so whatever energy you sent must have done the trick cuz l'm in a much better place today. l'm still concerned about the spinal tap, but did some reading on it and am hearing from most people that it sounds worse than it actually is.

l think what's really got me right now is the fear that this is the tip of the iceberg, and l'm realizing l really don't like that uncertainty. l'm probably somewhere close to the bargaining with deities stage; l have several appeals on the table, lol!!

l really appreciate all the love. lt has just been a rough year since the get go, and l'm a little worn out. l'm just ready to get this shit over with, and hopefully, there's a way to relieve it.

Thank you guys SO much for the kind words and hippie energy. :) lt already seems to be working. Much love to you all, and l'll keep you posted.
Fri, May 2, 2008 - 8:40 PM
Edward
"Do you have buddies with you up there, people who will go with you to the hospital?"

Yeah...several people have offered so l think l'll be okay; it'll be nice to have someone there.
Sat, May 3, 2008 - 3:23 PM
(((((((((((( Ali ))))))))))))

love you

i am here..
Mon, May 5, 2008 - 7:01 PM
I'm so sorry your going through this! You're in my thoughts!