A place where adults suffering with Hydrocephalus can
discuss topics related to this condition.
Embarassing Question
by Leslie
I'm a 44 y.o. female with congenital hydrocephalus, and was diagnosed and shunted at the age of 42 (about 2 years ago). At the time of my surgery, I was totally incontinent, and had to wear rather thick diapers and plastic pants, and even then experienced leaks. I also wet my bed fairly heavily every night. At the time of my surgery my gait was so bad I could barely walk, and I slept in a coma like state for about 12 hours per day. The NS who performed my surgery was amazed that I had done as well as I had, given the severity of my condition.
However, after my surgery, my gait certainly cleared up, but I'm still incontinent - just not as bad as I once was. It's bad enough that I still need diapers 24x7. I've tried Detrol and some of the other meds out there, but they just made my mouth dry such that I would drink more fluid. I'm an active girl with advanced college degrees, and have a good job, so the incontinence does get in the way at times.
Are most hydro patients incontinent before and after surgery, or is it just me? I don't see that many people talk about this issue on this forum.
For those of you following my saga, this one tops the cake. I applied for disability in 2001 and was turned down. I reapplied this past May and was told recently they did not have enough information for a determination and required me to go see one of their shrinks. What's another doc in the mix, right?
Anyway, I go to see this psychologist. She is now my best friend. She asked me questions noone else did, got the story noone else cared to hear about, and made a diagnosis.
I now am diagnosed, at age 43, with post-traumatic stress syndrome, and the traumatic event in my life is my birth.
I know this sounds funny. I'm still amazed. The doc is probably still in shock. She did tell me I had enough medical for disability, and didn't think I should be having to deal with this too, but I think it's for the best.
I am having a really hard time with this. How can something like this have happened? The signs were all there. Why did noone see them?
I am not suicidal, amazing enough, but I am emotional. Thanks for letting me into this circle.
I too suffer from post traumatic stress disorder. I dianosed myself because I had the majority of the symptoms; but I was never suicidal. I can not visit people in the hospital, work in the hospital, talk about it, avoid the issue, have bad dreams, and so forth. I will even change the subject if it comes up, or just clam up.
I wan't go to phycatrists any more; the last one; in high school, diagnosed me with agoraphobia and put me on medication that made me sleep all the time.
headaches continuing for the past month see surgeon next week, again!!!
by
I've had 2 head CT's, the first showed overdrainage the second, did not. On the same day as the first head CT, I was in the ER, and my NS saw me and changed my VP shunt valve setting from 12 to 15. Less than a week later, the beginning of last week, I called for head CT # 2 on Monday, and was seen on Tuesday, where he "manipulated the settings" from 15 to 11 to 14 to 15. My forehead still hurts inches away from my shunt on the left side of my head, on my temple side of my head, also inches from my left eye. Anyone else get these headache problems for two weeks? My last surgery was 3 and a half months ago. Again, the troible has been happening for two weeks. Anyone know anything? Last time my NS did a shunt tap I had meningitis!
Well, I have them all saying WOW now. My surgery is considered a success since this was the first time I have ever had to tell a medical professional I do not have a headache. That being said, they are more amazed than I am in my improvement. This was only an initial check to make sure the stitches were healing, and I am pleased to say that everything in my head is going right.
Of course, that is not the end of things. As a matter of fact, I get to go see my prime physician in the morning to report to her about my sciatic nerve issue. I did talk to the neurosurgeons about it, and they feel they will be working on my back next.
I came to the point where I finally had to map everything out. I am now up to 6 doctors, on a waiting list for another, and have 7 diagnosed conditions with numbers 8 and 9 on the way.
I have no choice but to believe I am meant to go through all this for a reason. My attitude has been nothing but positive since I woke up from that surgery, and I'm actually happy that I have these doctors behind me now. It feels great to have someone not only believe I'm sick, but find out why and FIX IT!
I know we all have our issues, and I feel for anyone having to deal with not only pain but the stress, anxiety, and depression these issues cause us all. If anyone ever needs a pick up, give me a shout. I'll always try to send my positive energy to others.
Well, I didn't think it was possible, I was hoping for the pain in my hip to somehow be from the steroids, but I think I know what my newest issue is. After talking to my aunt, I realized that I have been probably been ignoring sciatic nerve pain and it decided not to be ignored anymore. Now I will say the pain from this has actually been almost more unbearable than the head issues ever were. I do go to my doc on Wed morning to deal with this issue.
As far as my head goes, I see the neurosurgeons assistant tomorrow to see how I'm doing and I cannot wait for them to see me. As far as my head goes, I do feel fabulous. I am not dealing with too much discomfort. There is still some since my head is still readjust the water pressure, but it's to be expected. I left the hospital with 20 percacets and am proud to say that as of today, 7 days later, I still have 10 pills left, which I am now using for the hip/leg pain, and informed my prime physicians office of that fact.
I would also like to say that my whole family has really pulled together and has been really there for me. This operation has changed alot of things for me, including my attitude, and that has been extended to my family in the most positive and unexpected ways imaginable. My 2 daughters are growing up a bit, my older son is looking at life differently, and my youngest son is getting an experience of a lifetime.
Anyway, I hope all is going well for everyone. Just food for thought that's helped me alot lately. There are times when you do things for others just because that not only makes them happy but makes you happy for being able to do that for someone else. I feel that happiness makes our bodies produce "happy feelings", and the happier we are, it is catchy.
I have had extreme headaches for almost two weeks. I have spent alot of time resting in bed, until my head hurts of course, then wondering what to do with the hurting headache that never seems to go away. I have been to the ER, where my NS said my head CT showed overdrainage, and reset my shunt valve from 12 to 15. My pain is still here, so I went for another head CT today, and another shunt valve resetting will take place tomorrow. I cannot work like this, but I am considered a "disabled" person by the government, getting SSDI funds, which will allow me to stay out of work for a couple of weeks. No one should have this kind of pain, even if it is a malfunctioning shunt!
Beth,
I agree. Noone should have to go through the pain, especially if it's from a malfunctioning shunt. I am just glad your doctors are on the ball and you are getting the help you need in a timely manner. It took Over 10 years for me to get the doctors to agree my shunt was malfunctioning. And since they didn't beleive my shunt was malfunctioning, they didn't beleive I was in pain. I have them all in shock now that I not only survived this ordeal, but now they are finding a bunch of other stuff wrong with me because I didn't trust my body.
Anyway, one week after getting my valve replaced, my head feels pretty good. I did go through a hell of a first few days with pain and nausea, but that was to be expected in my case. During the time my shunt was malfunctioning, everything in my skull, including my eye sockets and ear drum shifted downward. (talk about pain) So, when they replaced my pump, we have to allow the pump to put the water pressure back in my aquaducts, and that in turn reshifted the inside of my head. At least I was given percacet this time around, and no, I didn't abuse them, but I did use them. I am now able to see quite clearly, although I'm not done healing yet. I do know that I was born with lazy eye, and I can finally say that seems to have been taken care of by this surgery.
You also have to know when to lay down to allow the pressure in your head to gain some kind of balance. Sometimes it helps. Just trust your body. It will tell you what you need.
I wish you all the best of luck. Just go in with a good attitude. That is my best advice.
I agree. No one should have to put up with constant pain. I get so frusterated when my head hurts too much to function. I over drain, big time. I had an anti-syphen devise put in on April 15 and that has helped; but sometimes I still get bad headaches; but that's when the weather is foul. Right now, we are getting the outer bands of Tropical Storm Ida. So my head is not too happy. I live in Charlotte, NC. Hang in there.
Well if you have read either of my last two post you know that the last couple of months have not been so easy for me. I have not been feeling well and have been trying to go along with the treatment plan that my neurologist had for me which included putting me on topamax and increasing the dosage up to 100mg per night.
I have been having my difficulties with it's side affects and have finally had to turn to the neuro surgeon for help. I have found out in this last week that I am facing another shunt malfunction. The valve is shot yet again. (I almost made it a year without surgery this time. 11 months) Apparently my shunt is blocked up again due to a build up of protien in the CSF. I had no clue that this was a problem that I was having.
The Md. told my boyfriend that this had been a problem for several years and that it would be a chronic problem. It sounds like it is just how my system is set up.
I am wondering if anyone here knows anything about high levels of protien in CSF and if there is any way to control it.
This being the case the surgery is set for wednesday the 11th of Nov. I will be doing all of the pre-op stuff on monday and tuesday and then wednesday it will all get fixed. I am hoping that it will be simple. It sounds like they will just have to take out the valve and replace it with a new one. So just a scalp incision. I hope they are right and that nothing else has to be re opened or replaced.
I am sure all will go well and I will be back on here to let you all know the latest.
Any information on high levels of protien in CSF would be greatly appreciated!
Thanks,
Linda
I am ery interested in going into the air force, especially to USAF Academy. That is my main goal. Is it possible to go into the Air Force with e VP Shunt or will they not accept me?
Bailey,
I agree with Liz that the military would not accept you based on the fact that you are at a higher risk for alot of different issues. Not to mention that most of us on the board are effected by weather changes, and I believe are discouraged to fly, because the increase and/or decrease in air pressure can cause major headaches, possible equalibrium issues, and a few other fun facts we get to accept in our medical journeys.
Now, accepting the fact that the military is not a good idea, why not think in other areas that are just as important as the people in the plane. See what other options could interest you, and keep you medically safe. I know it's hard to accept things we cannot change, but if we learn how to do that, it makes it easier to find things we can change like our attitudes, and find something that will work even with our unfortunate limitations.
There are always plenty of ways to make yourself happy. It's finding the ones that work for us that can be viewed as an adventure, and growing tool in itself.
"Not to mention that most of us on the board are effected by weather changes, and I believe are discouraged to fly, because the increase and/or decrease in air pressure can cause major headaches, possible equalibrium issues, and a few other fun facts we get to accept in our medical journeys."
I'm happy to report that this is often not the case. I have always flown without difficulty, and I know many people who fly with no problems, or only minor effects. However, there are some who can't.
Sorry for the misinformation. I only had flying brought up once in my life and I was told by a medical professional that I should never fly. I never had a reason to fly, so I've never fully looked into it, just took the docs word for it.
I do know that I have a massive amount of water in my head and that's probably why I'm effected so much by the weather. I also thought we had discussion years ago and a few people gave flying horror stories. But, my memory is hazy on it.
Anyone, always the case with hydro, no two of us react the same.
I've noticed how the commercial airline planes do have to pressurize and depressurize...while we are aboard, which can affect us. However, I have flown a few times, with no problems. Maybe I'm just lucky! I would not fly in a smaller private plane, or helicopter.
Most important thing first, I FEEL FABULOUS!!!!! I still am amazed at how much eye sight I have regained. I didn't realize how much I was missing. Second, and more amazing, I am not dealing with that much pain. I took 2 pain pills today. One at 1pm and one and 9pm. My head doesn't have the feeling that it's "shifting" anymore, and that was most of the issues I had.
I did see my blood doctor today and she was amazed. She told me she didn't realize how severe of a state I was in until today. But, she is happy that my head issues are going well. As for my blood, it's bottoming out again. My count today was 88. It is still safer for me to go off the steriods at a gradual pace, which is going to take a month. When I get off the steroids I get to see the doctor who has to decide if my gall bladder needs to come out or not. If it does, I probably will have to take the steroids again.
Anyway, as far as disability is concerned, I have a mental history along with the hydrocephalus. Now, I will not say I am mentally disabled, but I will say I'm mentally different. It may, or may not, be because of MY case of hydro. There is actually quite a few contributing factors. But, what I think is funny is that they have 6 medical conditions to go on, but want they psych eval.
The easiest way I have found to explain why I feel I think different is like this:
Everyone believes that 2 and 2 is 4, but I will always see 2 and 2 being 22. I see outside the box and usually can't understand why someone else can't see what I do. On top of that, my mother had a nervous breakdown when she was in her twenties. My sister, the same thing. I grew up hearing voices and never realized it until later in life.
My mother's great-aunt was a very good fortune teller. I feel there is a very fine line between mental issues and "special gifts". This may sound weird, but I had a really hard time with this surgery because I kept getting bad omens. I dealt with more death than I have in the previous 2 months. I was scared that I was being told something, and I planned on not making it through surgery. My dog had a liter of puppies 2 weeks prior to my surgery and one of the pups had issues. She had neurological issues and developed respritory problems. I hated leaving the mother because she is a very emotional dog, but I found out after I got home that my brother stayed with her during the ordeal and the pup died while I was in surgery. Talk about freaky to me.
Sorry for the long story, but I'm still hyped on steroids.
I understand completely. I do believe there can be some mental issues with hydro. I was extremely depressed with mine, am doing better with the shunt in working order.
Steroids have been known to add to the mental issues, if there are any. However, I also believe in special gifts we may or may not have.
Take care!
Susan,
Again, since I'm so abnormal, the steroids actually helped clear up some of my mental issues. Since taking them, I've reorganized not only my entire house which should have been done 3 years ago, I've taken charge of the people around me and have more positives coming out of all this than negatives. The only negative thing is the issue I'm having is massive leg cramps. But, I've given myself a much needed reward by spending the night in a hotel jacuzzi that's a mile from my house. It would've been nice if my husband's schedual allowed us to spend time together here, but he has to go into work. Instead of being stingy and enjoying this all to myself, I'm going to spend some quality time with my 7 year old son and allow him to enjoy an adventure. He deserves it too.
I just can't beleive all the positives that have happened since Monday. I feel good being alive and it's catchy to the people around me. I hope some of my good will escapes out to people who need it on the board. I'm more than willing to share!
I have to say that what I have been feeling while my brain readjusts itself is kind of wild. I knew this was going to be different. My aquaducts have to refil to "normal" levels and while doing so the rest of what is in my brain, eyes and eardrums included, are also readjusting. It has to be the weirdest feeling I have ever had.
I now have a blood doc appointment on Friday, waiting to set up the gall bladder test with that doc, have to see my prime physician in 2 weeks when she comes back to the office, and social security set me up with a psychologist to see if I'm mentally incompetant. (I'll screw with her good!hehehe)
Anyway, just thought I would put my experience so far out there.
Mentally Incompentent? You? You are so articulate and well reasoned - I hope you make this what ever you want it to be but that you have lots of fun with this one.
Mentally incompetent indeed! I would put on a show they wouldn't forget!!!
Good luck...LOL...just kidding. That's all we need...people thinking if we have hydro that we might be mentally incompetent automatically!
