A place where adults suffering with Hydrocephalus can
discuss topics related to this condition.
Good bill of shunt health
by
I had my post op check up this morning. Dr. M was pleased with how I am doing and said he hasn't seen me this me feeling or looking as good as I do for a long time. I go back in a year and will have a routene CT scan.
I think the anti-syphen devise is working. I hope anyway/. i really want to get back to life in some sort of fashion.
my scalp and chest are getting itchy at times... yikes!
by
my chest is red and itchy after a shower now. My head shocks me with brainwaves that itch. As you know, I have had headaches for a month or so. The back of my neck is possibly stiff from fluid filled CSF, caused by the possible overdrainge of my VP shunt.I go for pretesting in two days, and get my ICP monitoring diagnostic test in three days. My last shunt revision was August '06, so I don't know why I am getting all these thing wrong so quickly. I hope it is not infection too.
anyone every have ICP monitoring before on your shunt?
by
I may need it due to my really bad headaches I have had all month long. the NSG I saw today is setting that up for 1 week from today to see if low pressure is the cause. Again, has this ever happened to anyone? I have to stay overnight in the hospital for this diagnostic test.
It's not bad. The biggest problem is sleeping.
If your a tosser and a turner the wire could get twisted up.
If you sleep flat on your back then it's not a brother.
You can get up a walk around with the ICP in place.
You'll have to drag around an IV pole they attach the recorder to.
I had ICP monitoring in 2000. I'm not going to lie, the numbing shot hurt. I'd ask for a valume. I was sceduled for monitoing for 72 hours, but it ended up being a week because my NS was puzzeled. It showed I overdrained. They let me walk around the next day. I did have to push around an IV pole and make sure the pole did not run the paper readout off.
But, I've always had a shunt; except for my first 4 months of life in 1974. I wish you luck.
I went to my ICP monitoring test... I'm home again...
by
my NSG raised my shunt valve level from 2.0 to 2.5, a pressure I have never been at before. I hope it works. Does anyone's lungs (coughing) get funny after the test? Maybe due to the throat tube or anethesia? I have no idea. My PCP said I could use cough syrup to stop the hacking cough. I hope it stops soon. My sutures come out next Thursday when I see my NSG for an update. I hope I don't need surgery from a broken valve. My stomack and back of neck are still questionable. I'll post more next week when I know more!
I wish they would have put me to sleep for the ICP monitior to be inserted. They did give me valume, but I remember the shot.
But antitesia always gives me a sore throught and I always have a cough after it. It's normal. It's also important to cough to get all that junk out of your lungs so you don't get phenonia.
I will never do that test again. I know I overdrain; but we did not know it then. I have a codmen in with an anti sypen devise and am set at 150. I had the menos, but it did not work, and my doctor gave up on it when he was revising it for the umteenth time in a year, and it fell apart in his hands, and he put the codmen back in. I can't tolerate the highest settings on a shunt. I'll just end up in an urgent appointment with my NS or in the ER.
Re: I went to my ICP monitoring test... I'm home again...
by Susan
I was wondering if they would put you to sleep to get the ICP monitoring device in place.
Itchy throat usually only lasts a few days, along with some hoarseness, Unless you were on your way to getting a virus right before the monitoring started.
Glad it's over.
does anyone have a VP programmable shunt like mine?
by
I see the NSG tomorrow and I have a progarmmable VP shunt that reads from 0.5, 1.0, 1.5, 2.0, & 2.5. Right now it is set at 2.0; my last setting six months ago was set at 1.5. I am suffering from overdrainage symptoms of headache, nausea, some sensitivity to light, dizziness, stiff neck, painful forehead and temples, and some tummy soreness near my distal end. It has been almost a month of this; I have been to an ER 4 times, I have been to my headache doctor twice, I have been to my primary care once. I have been out of work since April 6th because the pain is so troubling. If anyone knows anything, please write back.
I briefly had that kind of shunt. That sounds like a menos. I did not work for me. When my doctor went to revise it, it fell apart and he put the Codmen back in. The codmen just works better for me because it adjusts in intervels of 10. I'm at 150. It can go 30, 40, 50, and so on up to 200. I just had an anti-syphen devise put in and it appears to be working. My doctor was just going to reposition the upper part and put an anti-syphen in, but when he went in to pull it up, it fell apart, so he put in a new one. I have a VA shunt. When I had a VP shunt, the distel end would get sore at times/
what kind of valve in any VP shunt does anyone have?
by
I'll listen to VA shunt stories too, but I have a VP shunt w/ a programmable valve that is getting replaced soon due to headaches for eight weeks. I think the cause is overdrainage, but it was not diagnosed that way yet. I was diagnosed with slit ventricle syndrome, but my ventricles are small as well. My mom does not want me to wait two weeks to see if my headaches persist like they have for the past two days. She want me to call the NSG office on Monday, not the 28th. I hope I can get relief sooner instead of lying down all the time and putting ice on the area to get that relief!
Hey Liz. Did you see CBS National News last night? There was a story on unlocking the mystries of Autism. You can get the report online at
cbsnationalnews.com
Thought you might be intrested in it. A couple of weeks ago, I also watched something on Discovery Health on Autism. They said a lot of Autistic kids have large heads, with the front temperal being the most prominant. I thought I recorded it for my mom, but I either did not or brought the wrong tape home with me when I was packing stuff for a stay at home after the hospital.
They put in an anti-syphen devise and were going to just reposition my shunt, but when my doctor pulled it up, it fell apart, so he put in a new one. He used the scar from my VA site to put my anti-syphen devise in so he would not have to go in through my neck, which is more painful, and makes me unable to hold my neck up. I got into a room at 10:45 pm, because housekeeping took their time cleaning a room/. That and my surgery did not happen until 5:30 because Dr M had an emergency surgery case come in at 12:30, that bumped the 1:30 to 3:30, and me to 5:30. I could have gone home Thursday evening, but I opted for Friday morning, because I go downhill quickly at that time of day, and my parents live an hour away, and if I had to go back, I'm a hard stick. They gave me Versaid in pre-op when they were about to take me back, so I don't remember the OR much.
I'm feeling OK. So far, I think it's working. The positional thing is not so bad. I've been taking easier than normal. I hold my dog's leash with my left hand and don't do lifting; at least I try not to. They told me nothing more than 5 pounds. I made an excetpion for my 1 month old nephew. I just had to be careful and not hold him much while standing up. When my mom saw me getting tired, she took him.
I go for my post-op on Tuesday. Dr M will probably be pleased and will ooh and ahh when I show him pictures of Tanner, my new nephew.
I guess I did it. I've been focusing so much on the fact that I know I have hydro that I never considered my hydro could be a symptom of something(s) else. Until I was hit with it today.
I received my MRI orders in the mail today and was stunned when I saw they were testing for chiari also. And now that I am reminded, I never looked into the fact that my gyno found signs of spina bifida when he was doing an exploritory on my insides. Nothing was ever checked into that possibility either. So, I get to make another couple calls tomorrow.
Now I start wondering if my mother had the right idea. She prefferred not knowing if she was sick. She got her wish and lived probably a good 10 years with issues, and enjoying life, then 6 months fighting a losing battle with an anyrism around her heart, and being miserable.
Am I about to start a long medical journey that may leave me less and less time to enjoy life, and my children, or will I spend alot of time in hospitals, and in recovery, being a burden to those who actually need me.
I know all these things that MAY or may not happen are the answers I've been seeking for a very long time. It just hit me hard today.
I have done really well with my hydro for years and years, but I know this concern. Over the past two years, I have been hit with one autoimmune dx after another, and now I think I finally know what is causing nearly all of it, but solving the problem will take a LONG time and a horrifically strict diet, which, quite honestly, is daunting to me because of my oral sensory issues, but I know I have to do it to FINALLY get healthy, so I am...just not holding my breath about it.
Lizard,
If I remember correctly, haven't you been diagnosed with chiari? I know someone on the board is and I keep thinking it is you.
I found alot of info on it, but would like to hear a personal experience with it.
Liz,
I couldn't remember exactly who spoke of chiari before, but at least I remember who posted it.
It has just took me off guard that they now suspect not only the weird hydro I know I have, but now they are thinking chiari and I know of possible spina bifida.
I'm just trying to get a handle at what, if these conditions are found, I'm looking at. I'm starting to wonder if these pains in my back and legs, upper back and neck, are going to someday completely disable me. That idea scares me.
George,
Since I think you have the most similar situation as mine on the board, I would like to ask you just a few questions to help me figure out if there are things that are hydro or hereditary related for me.
First off, I've been the same weight since I've been 13. I usually range between 105-120 lbs. My mothers family is bigger framed and my fathers is thin like me. I was always curious if I can't gain weight because of hereditary, or is my body feeding off any water produced, which causes me to stay thin.
Also, I've always had low blood pressure. Both of my parents had high blood pressure and I feel like an odd ball. Is my blood pressure low because of hydro? Maybe.
I'm curious if you have any of these issues, or maybe others that you wonder are hydro related.
I have lost count of the number of shunt revisions I've had over my 35 years of life. It's well over 20. I guess I'm an unusual case. But that's the way my whole life has been - unusual.
What makes me scratch my head is that my very first shunt - when I was 4 months old, was a VA shunt. That guarenteed needs of revisons because in the VA shunt, there can't be any slack, and babies grow.
Dr M did remember you. he said he's going to have to get onto the Adult Hydrocephalus Discussion Board to see what people are saying about him. I told him, people are saying good things, and I've given up spelling your name and put Dr M down. He chuckled.
I was half delerious by the time I got back to the OR. My surgery was postponed to 5:30 due to an emergency that came in about noon, and bumped the 1:30 to 3:30 and mine to 5:30.
I could have gone home Thursday evening, but my parents and I were hesitent becasue I go downhill fast at that time of evening, so I went home Friday Morning.
On Thursday, food service still had me down as NPO at breakfeast, so I did not get a tray, but that was cleared up. Since I'm such a picky eater, food service went to the restraunts at CMC and got me food. But, it's not like I have to foot the bill. That's Medicare and Medicaid's task. They can't make me starve to death.
but where I go, once in while there is something called a fruit,veggie, and cheese plate, it's actually very good. Strawberries, cantaloupe, honeydew, grapes,cheese, and some sort of dipping sauce to dip the fruit in. It's probably yogurt. They alternate that out so it's not constant.
I've been off the board for awhile but am awash with curiosity - in what hospital were you? If I didn't eat the food from the hospital cafeteria is was too bad, tootsie. Seriously, what part of the country? Maybe I should move.
I live in Charlotte, NC. That's in the southeast United States. I go to Carolina's Medical Center, main. There are several hospitals under CMC, but that's the hospital with neurosurgery capabilities. I refuse to go to the other hospital with ns capabities There is another hospital with that in Charlote, but I hate it with a passion. I've had 2 procedures there. The first was to remove a huge tumor in my lower jaw, and all CMC was booked for a couple of weeks, and had I waited that long, my jaw could have broken. The second was when they removed a cataract and they sent me home when myo blood pressure was through the roof.
I had to stare like that. they don't want you throwing up while your asleep. That would not be good because you could asperate into your lungs.
I got home from the hospital Friday. On Wednesday, Dr M had an emergency surgery so my surgery was not until 5:30. I was beyond hungry and thirsty. They got my IV on the first stick. The lady who took me back had, had me before and remembered what a hard stick I was.
They were going to reposition the valve, but had to replace it altogether when the valve broke apart in Dr M's hands. He used my old scar from my VA shunt to place the anti-syphen devise in. He set me at 150 because he said that had he left it where it was at, about 200, my ICP could go up to 320 when sitting up with the anti-syphen device. I was home Friday Morning. He could have released me Thursday evening, but with it being so late in the day(past 7 pm) me and my parents were hesitent so I stayed till Friday. This has been the quickest I've revovered in a long time. Usualy, I'm in the hospital for a week.
I was in the recovery room until 10:30 because they were cleaning my room from a late discharge.
There was something differant this time. When I woke up from surgery they had me in the hospital bed already and I did not have to transfer from gourny to bed once I got up to my hospital room. It must be something new because I did not see many gourneys at all.
I'm glad things went so well for you Joy! I know you were worried about that IV stick!
Your comment about no guerney for the ride from recovery room to hospital room...reminded me of something. My stepfather got an itemized bill for his cataract surgery once, and was commenting on all the little detailed things that cost so much. This was in the 80's. There was a guerney charge of 100.00 for use of the guerney from his outpatient room to the OR. He told the billing dept. "next time, I"m walking down to surgery, forget that (blankety blank) guerney charge!"
When I broke my hip in Feb., I was so grateful that they brought a bed to take me to my room, then I didn't have to be moved from the bed until I was in surgery and asleep! Very kind.
Joy,
I'm glad things went somewhat smoothly for you this time around. Lets all help you pray this will work for some time for you.
As far as the gurney thing, my last surgery was over 15 years ago and I remember them using my hospital bed for both before and after surgery. I think they may have finally discovered it's not always good to move someone around so much after surgery.
Good luck with your recovery. Sounds like you are well on your way.
I'm feeling astonishnly "normal" for just over a week out of surgery. I think I can tell a differance now that I have an anti-syphen devise. My head is not quite so bad at night. I still have post-op soreness going on, but that's to be expected. It's driving me crazy that I can't lift anything over 5 pounds. that includes my 1 month old nephew and my own baby, my dog.
Its good to hear that you were feeling well and recovering quickly from the surgery, by the way you might want to visit and support other baby hydrocephalus and give them another chance to live
