A place where adults suffering with Hydrocephalus can
discuss topics related to this condition.
second opinion referral program
by
I've been on a medical roller coaster that has finally brought me some information that I would like to share with anyone who could use it.
There is an Adult hydrocephalus center in Baltimore, MD that has a second opinion referral program. They will allow you to send your medical information, have it reviewed, and a team of specialists of Adult hydro will give you an opinion on course of treatment. There is a non insurance paid fee of $400.
I don't have the money to spend, but luckily I'm only 3 hours away and was told they would made a decision if they can help me before making an appointment. I'm in the process of sending my records to them and awaiting word.
I feel like this is a do or die situation. Either my neuro up here is correct and I'm nuts, or everyone that believed him instead of me is going to be in for an awakening. Wish me luck!
Lora
Ps. The hospital I referred to could be found on the web under Lifebridgehealth.
HELLO, I WENT TO MY LOCAL NEUROSURGEON AND HE SAID MY SPINAL PRESSURE IS NOT ELEVATED ENOUGH TO NEED SURGERY. I CALLED THE HYDROCEPHALUS ASSOC AND SHE SAID I SHOULD GET A SECOND OPINION AND SAID LIFEBRIDGE WOULD BE THE BEST PLACE. HAVE YOU SENT YOUR INFO YET? MY DOCTOR ME ON A A DIURETIC AND I AM WAITING TO SEE IF IT HELPS MY SYMPTOMS.
In over 15 years of me lurking on the board, I've never seen where anyone spoke of a neurologist that worked with hydro issues. I was surprised to receive a response from a neurologist who said they dealt with hydro patients.
My only dealings with a neurologist was 15 years ago, at least. He tried 4 or 5 migraine medicines on me, which never worked, then told me my pain was psychological.
...don't go together. Very, very few have more information than a definition of what it is. Neurologists aren't trained in matters that require surgery (growths and structural abnormalities of the brain) and therefore can only deal with symptoms. On top of that, most are so arrogant and bullheaded that it never occurs to them to tell the patient that hydro is out of their league. I will never see one again, even with an epilepsy dx.
Neurologists don't know the first thing about hydro or pain. They only push you to over medicate. My last neuologigist I saw for jerking(I determined to be an affect of Cymblta) put me on Cogentin and that made me realy confused. I turned all my parents burners and the stove on and don't remember it. I tossed it out. One neurogoist put me on something that made me sleep 20 hours a day. I slept all the way from Ohio to the NC mountions, just wakeing up enough to use the bathroom or eat - when my mom woke me up.
It's only NS who have training in hydro and treatment. Don't go to a neurologist. Your wasting your time.
My NSG told me I did not need to follow up with the neurologist. At the time, I felt I should, for symptom management. However, when the opthalmologist firstdiagnosed the hydro, the neurologist kept saying it was mild, and I didn't need a shunt, that we would just follow up with ct scans. THis was at a time when I was "wetting" my pants.
My primary physician says I know my own body well enough for him not to doubt when I say something is really wrong...so he referred me to the NSG, who wanted to act immediately (high pressure hydro) and may have saved my life. I can't say that anyone with hydro should not see a neurologist, just stating my experience. He is able to get me in with my NSG when I am having problems, sooner than I can get in making the appt. myself, and he has started taking me more seriously now. I call him before I go to ER sometimes, and he will contact NSG or go ahead and order shunt series and CT scan without added expense of ER. Plus meds short term if necessary.
One of his associates was the doc on call when I was admitted last May for what turned out to be high pressure build up again. I spent a week in the hospital before getting fixed, however, I was in no shape to be at home. He really pushed for the shunt tap, after the mechanical adjustment did nothing, and I was immediately better.
So I don't completely discredit neurologists re: hydro. Depends on who you get, I guess, and how much hydro experience.
Neurologists are inept. They would rather medicate you to death and see you so they can get money than to let you see a Neurosurgeon, the only person who can say whether a shunt is working or not and to what degree you have hydro. I will NEVER go to one again. I know my body and when I call Dr M, he takes me seiriously because I don't call him constantly. I doubt Neuroogists realy even know what hydro is.
When I said in this post, that one of the docs was on call...I meant one of the neurologist docs, who insisted the NSG do the tap, which pressure wise was way up. That's why I had said maybe some neurologists have more shunt experience than others. I did cancel my appt. with my neurologist this week, as I felt it was stupid to spend that time and money, just for him to say I'm okay, when I know I am.
I see one of those disliked doctor's, neurologist (I'm ducking).
I find this guy to be rather helpful! (hiding behind my computer screen!)
He has tried a number of drugs for my pain, not that anyone of them helped.
He has offered to try others or to see a pain specialist.
I have refused.
If Oxycontin and Absolute can't stop the pain, what would?
He has even recommended I see another neurosurgeon!
This neurologist has been a positive help for me. (ducking)
OH NO! Maybe now someone will want to know who he is?
Arnaldo Isa, M.D.
Maitland, FL
Sorry Doc.
I hope I hope I didn't open a can of worm for you.
BTW he has on the very best muscle crap drug I have ever tried.
I have muscle craps so bad that I've looked into having my toes removed
because the P A I N is so bad.
I used to cramp up so bad my leg muscle's would become damaged.
I looked like the actor in the move American Werewolf in London.
If you have seen the special effects when David would turn form human into the Werewolf, I looked like that.
The muscle's twitching under my skin was frightful and extremely, extremely
excruciating painful.
He is the ONLY Doc who has even addressed that problem and finally has me on a drug that works!
Interested but not surprised by the different responses.
by Janet Miller
Hi, Lora.
It is interesting to note the widely different responses to your message but hardly surprisng since we are such a motly lot. Admittedly, my experience with both nsgs and neuros is limited to 2 hospitals and set of doctors: it was forrible at one hospital and quite good with the onter. Currently, I go to Hopkins (Baltimore) where the nsg and the neuroligists in the hydrocephalus clinics work as a team and the later are very well versed with issues related to hydro. In fact, the neurologist from Hopkins moved over to another Baltimore hostial to start their adult hydrocephalus clinic and has done very, very good things regarding education/outreach and treatment. Maybe that's the key - instead of getting a nuerologist out of the yellow pages or from a local medical referral system, find one who is connected with a nsgs you trust? Sorry that you have had this bad experience, though.
Janet,
Thank you for your response. It shows me that I'm on the right path. I am currently in contact with the Baltimore adult hydro center and am pretty positive they can help me.
Which one? Hopkins or Cedars Sinai? If Hopkins and you want to chat personally, you can get my contact information from the clinic coordinator Lisa. HIPAA will make her call me - I'll say OK - and it should work. Good luck.
Which is with Sinia. It's funny to me that I've spent most of my life trying to explain to others that I was "different". When I was diagnosed with hydro, I felt I understood why I felt "different". I was introduced to doctor upon doctor who was suppose to understand me. The last diagnosis received from any doctor who was there to "help" me was that my problems were psychological. This being the case, my depression of not being understood, then thinking I found help, to find out they didn't understand me either, put me in such a depression that I've taken all these doctors advice and have been seeing a psychiatrist for over 6 years. Funny, I still have all my symptoms, plus a few more.
Now that I am on the crust of possibly finding people that believe me that my symptoms are hydro related, I don't know how to act. I still have my reservations, but I also have alot of hope.
Sorry not to have responded sooner - I was in TX on business.
I am sorry that you have had such a hard time lately. Hydro is hard enough on its own without having to deal with some members of the medical community who are uninformed.
I think you will like the staff at LifeBridge. They are smart, certainly understand hydrocephalus, and are trying to develop a good social network for their patients. I was actually at Sinai on the 4th - for their quarterly meeting of people with hydrocephalus. I stopped by on my way out of town and am glad I did.
Anyway, keep your spirits up - you may be very pleasantly encouraged by your experiences at Lifebridge.
Janet,
I've actually been on the quest to see a specialist in adult hydro for so long that when I had the opportunity, I grabbed it. I've done enough research and heard enough good things that I already feel this will be a positive step for me. It's them I'm concerned for.
I am pretty positive that I'm one of a kind. I was born with hydro and developed a second blockage at a young age, neither of which were detected until I was 24. I feel extremely lucky that I lived. I have one shunt, and one of my vents seem to be back to normal size. My other vent, however, is still extremely large. My previous neuro seeemed not to be concerned as long as it didn't get any larger. That's what I feel is causing all my symptoms.
I don't know for sure, but I believe I probably shocked the doctors when they looked at my scans. I find it unusual that they are setting me up for a CAT scan on the day of my appointment. I thought it was normal practice to have my CAT cone at the same place I did previously for a better comparision. My opinion is that someone finally saw what I see and can't believe the scans are correct. Wait til they realize they are.
I am mixed about my surgery. I want to feel better and hope the anti-syphen devise helps. Dr M said it will not be perfect, but could help, and I said it's worth a try.
What scares me is the stupid IV. I'm such a hard stick; even with a baby needle. Then there's the anxiety of will this work. I have to get back to my life. Right now it's been in a rut. My stupid headaches rule the day. Then there's the fact that the surgery was delayed until 3:30. I have to be NPO all that time and I'm hypoglacymic. The day prior I will have to drink myself silly.
Call me silly, but I'm more afraid of the stupid IV than I am of surgery.
Your scheduled for 3:30 pm.
Count back 8 hours and have your last meal then.
Have a large meal at 7am.
I've been doing that for years.
No food after midnight with a operation scheduled in the afternoon is torture.
I have the same not eating disorder.
I get sick as a dog if I don't eat.
They only need you off food for 8 hours.
Joy,
If it helps any, I have the same problems with IV's. I can't stand them putting them in.
That and the razor to my head are the only 2 things that bother me about surgery.
I am a hard stick too, probably from all the times I needed hospital care in my life. Even though I am only 38, if any nurse knows my name and realizes me as a hard stick will feel bad about sticking me more than once. One time I got stuck eight times.
I seem to be having my share of the nausea and light headedness lately...starting around 5am, and lasting til about noon, or later. The usual motion sickness/nausea meds don't seem to help, in fact it gets worse after I take them, usually dramamine or antivert.
I am wondering if anyone knows of anything that works for these symptoms relating to shunts. I see the NSG next week, but sometimes I think I'd rather have a headache than this sick feeling.
Thanks
I have congenital hydro, but right now I also have "the curse". I suppose that makes headaches worse, but the forehead, temples, and back of my neck hurt too,which is too much to bear. My stomach where my incision is can be feeling like an upset stomach, full stomach, sick stomach, or empty stomach, all which can make me nauseous. Does anyone else go through this? I went to an ER yesterday complaining, but they gave me 1 Percocet there, and then sent me home packing with no painkillers for my pain at all. I had to ask my primary care for it. I also see my headache specialist on Monday to see what he will do with my Topamax dose.
frontal headaches since the end of March, along with back of neck pain the following week, and not this week the belly pain is more obvious, with "the curse" gone. My neurologist has gotten me off my birth control pills because they cause headaches. But my headaches are still here, even with the icrease in Imitrex and slight decrease in Topamax in case of overdraiange. Lying down is what I do most of the time, and sitting up can hurt badly. My neurologist, who I saw again Friday has finally sent me to a proper neurosurgeon to find out why all this is happening. Everyone please pray for me, I hope to see this surgeon Thursday, and see if my "slit ventricle symptoms" subside with his help, which might mean surgery.
I am having a MRI scan with gadolinium to look for intracranial hypotension (CSF LEAK). The MRI is schedule at 7:45 in the morning. My question is sense I have the most pain in the up right position. Should I get up very early for the test, like at 1:00 in the morning.
I have all kinds of trouble when I first get up, including pain and/or nausea.
Sometimes it helps if I get up a little early...no way at 1:00am...and sit in a recliner, gradually sitting it up a little bit at a time. Anyway, helps me some.
Good luck. I know what it's like!
Hey girl... Let me know when you are having your surgery. Message me on facebook or myspace if you can't find the anti-syphon info. Sorry I have not gotten back to you sooner...
My surgery is April 15 at noon at Carolina's Medical Center. They will tell my I could go home the next day, but I expect a couple day to a week. I react badly to generial antitesia and tend to get sicker and stay sicker than the average person.
My mom and I went to see the troops(Ian, Mason, and Tanner, and thier mom and dad)and Tanner and mom are doing well. Tanner is already pushing up and lifting his head to look around.
I get sick too from to much anaesthesia.
I ask them to cut it back or at least get the same mixture from my past few operation's.
They didn't brother me at all.
My last double revision I was ready to go home after 1 hour.
I stayed 3.
Then left.
See if they'll adjust the mixture for you.
I asked and they did and wow what a difference it made for me.
To much of that stuff gives me the dry heaves.
Plus I have an aftertaste of that stuff for DAYS.
But not when it's done right.
They do give me a dumbed down dose of GA, and give me something for nausua in the OR, but I'll still be sicker than a dog. They will probably alternate Azmet and Zophram so I can have something ever 2 hours. I'm allergic to Phenegrin. As for leaving the hospital after 3 hours, I'm often still in rocovery for that long and then in a standard room. They wan't let me up w/o assistance till the next day. But I can't get up anyway w/o being so dizzy, I end up barfing. Thank goodness my mom can stay over night with me. I'd be calling the nurse station every 30 minutes if no one could stay.
And I thought it was a big inconvenience to my Doctor to be allergic to the contrast dye. Never again will I do the contrast dye unless there has been a HUGE change in it since 1999.(I think it was mentioned to him the second time it happened. (The first time, not so bad, but the seccond time, yuk.)
I try to avoid that contrast dye; my doctors do to. I makes me sick. They give me a dumbed down dose; but it still makes me sick. The last time I remember them using contrast dye is in the ER when I thought I had Appedasides(in 2003). But I was in too much pain to give a rats ass. I had a complex overian thiest and the next day I had a follow up to my gall bladder removal and they admitted me because I went through the roof when they tried to examin me; not to mention I was bent over in pain and not able to breath deepley. Thank goodness for morphene.
I had some of that on my last MRI a few months ago.
Usually it gives me a very warm feeling all over.
Like they put a giant heated blanket on me.
This time it did nothing.
I try not to show it.
I have a pain in my head on a non-stop never ending basis.
That is 24 hours a day, everyday.
I needed the MRI so I can go for a shunt tap.
If it helps me feel better he said he would replace my two fixed low pressure valve's
with a programmable.
To me their a waste of time.
I know I feel better when my pressure is low.
He said try pumping one of my shunt's 10 or 15 times so I pump it 200+.
I do feel a little better after that.
I have NEVER been told to pump my own shunt. I have been told not to as it could reset my shunt. They told me to only let my NS do it. You can do more harm than good pumping your own shunt.
I'm too always sick; always have a headache - at since March 22, 2000 at 8:34 in the morning(I was rear ended - hard). I've had umpteen million revisions since then(mostly emergency) and I will always have pain. Dr M says the anti-syphen devise will not make it perfect, but should help.
They tried putting me back to the standard shunt from the programmable, but it did not work. They tried switching from the Codman to the Menos, but that was a night mare and the NS had to put the Codman back in when the Menos fell apart in the doctors hands.
Please don't tell me the older you get, the more problems you will have.
by Angela Krycka
Just thinking about one aspect of my shunt system ties my stomache into knots. Though, one change might make it more tolerable.
Hmm... long shot, but I wonder if digestion jostles the end of my tube (where the pump is) and causes discomfort. (Simular to the comfortably to eat certain foods... sometimes.)
Or do you really mean your abdomen where the CSF drains into?
I ask because for the first few years the CSF caused a burning sensation in my abdomen
and lower, and eventually my body seems to have adjusted to it because it no longer
causes any pain. Once in a blue moon I do feel the burning from the CSF.
On my 2nd revision the neuro did shorten the length of the tube by pulling it through my body up on my head where the valve is located and that sure helped.
The tubing was touching something in me which caused me to jump up and squirm around.
but I wonder about the connection to certain foods and the set up. Did you know I can feel my pump pumping along when I place my had over my belly button. (Sometimes I can feel it in my belly button.)
This a great thing to know. If I have a string of days where I don't feel like me (If I am that lucky to get to have a time period to watch for things. The last time something happened I sort of had a hunch SOMETHING wasn't right, but I was under stress to get my last HS exams done, so I kind of attributed it to that. DUMB move on my part. I probably should have been hospitalized douring them or at least the night I graduated. I held on two weeks later. (A day after my graduation party.)
I was never told to pump or not pump.
Seems like pumping could bring some old liquid back into the tube, but since the end is open anyway, it shouldn't make that much difference in chance of infection (?)
If the draining were slowing down, for whatever reason, seems like an occasional "pump" (almost sounds obscene, sorry) might get things moving along. I just pump mine to make sure it still works. If it were to get too tight I would think there was something obstructing.
Interesting to hear about. "to pump or not to pump, that is the question" LOL
I haven't been without this pain in my head since January 31 1997 or 1996 I forget now when I received my first shunt.
On that scale the doctor's like to use so much, I have a level 5 pain 24 hours a day, everyday since back then.
I've had more then one neurosurgeon tell me to try and pump it to see if it helps me feel better.
MY BIG problem is that I feel somewhat, what normal used to be before 1996 when the CSF level in my head is so low that is causes my spine to be very sore and my neck cracks when ever I turn it.
Like when you crack your knuckles.
I've had low pressure, medium pressure, high pressure, anti-back flow, non or standard flow vale's, two shunts. I have two shunts. I'm in stereo.
I've had a 3rd ventriculostomy, a ventricular-spinal shunts. OUCH!
The latest neurosurgeon wants to tap my shunt in an OR and if he doesn't like what he sees he said he would put in a programmable.
I don't see any advantage to a programmable over a non-programmable valve because what I need is a super low pressure in my head which brings on the spinal pain and neck cracking or creaking.
I am in shock. I am 42, diagnosed with hydro and shunted at age 24. I do not remember any length of time beyond a week that I haven't dealt with hydro related headaches. My neurosurgeon has sent me for numerous CAT scans over the years and told me each time that the size of my vents have not increased, so my shunt appears to be working. I have also gone for shunt studies with the results showing no blockages. All is working fine, go home. At my last visit to him over 2 years ago, he decided that my headaches were probably never hydro related and thought my issues were all "in my head".
Since I've been seeming to have more and more issues, I decided to request a second opinion. My prime phsycian told me a neurosurgeon will not see me without me having issues with my shunt, so I decided to contact the hydro association to see if they could help me.
After reading some of the information, it appears to me that if a shunt is placed, the enlarged vents go back to normal size. I have NEVER had a CAT scan show anything but large vents.
For those of you who have been shunted after showing enlarged vents, have they gotten smaller?
My vents never change. I have what is called as non compliant vents. Usually the only way to show truely if a shunt is flowing and working is to have a shunt flow study. It's a scan that takes about an hour and a half. They watch it drain from your head to the distal end. I'm bad to not check my message boards as much since most of my hydro peeps have a facebook or myspace...Feel free to add me
Monica Ball on facebook or www.myspace/monica_denice
I have enlarged vents also.
13 years after being shunted my latest MRI shows my vents slightly larger.
I have had a headache each and every minute of every day of the past 13 years.
As to the vents going back to a normal size that is one thing I have never heard would ever, ever happen.
Besides the neurosurgeons warn against trying to shrink the ventricle because that can cause a brain hemorrhage. The brain can pull away from the skull.
They all tell me that's a bad thing.
George,
I do not know how much faith you have in your neuro, but I've lost trust in mine since he looked at a CAT scan showing my very enlarged vents and told me my headaches were not hydro related.
My neuro also told me he could not drain the vents for fear of my skull crushing, but I'm starting to find information that is making me question his opinion.
If you can follow my logic, when the vents in the brain enlarge, room is made for them by "squishing" brain matter. If the vents contract, the brain matter re-expands, which relieves the headaches.
I just saw a CAT scan from someone with hydro before and after shunt surgery. The before CAT shows enlarged vents, but the after shunt surgery CAT shows normal size vents. That's when I looked and wondered if my self-appointed-god-like neuro treated me incorrectly for the past 20 years.
On the other side of the coin, if he's correct and my vents, because of their size, cannot be drained, they why can't he understand my head "pains" would come from the enlarged vents, or brain matter pushing against my skull.
They have tried treating my headaches as migraines, psychological, tension, eye sight, you name it. I am not a medical professional but would like to know why none of them ever work on the effects of the pressure the enlarged vents cause.
I am on a crusade to find out the answer to my questions, and I'll keep you updated with my findings.
I walked away from my first neuro after he couldn't find a way to relieve the pain in my head. He sent me to a neurologist, who did all sorts of tests and different drugs including putting me on some drug that he said I would be on for the rest of my life.
He contacted the college he trained at for assistance.
Did a number of revisions before I moved on.
The next guy at a different hospital tried a few revisions then said to me,
George I don't know what else to do.
Try this guy. He worked at the same hospital.
He tried his best also.
Revisions, two shunts, 3rd ventriculostomy, 2 ICP's.
A ventricular-spinal shunt. OUCH.
I moved to Florida.
The first 5 or 6 neurosurgeon's I contacted down here after reading my medical history didn't want me as a patient.
My last neuro in NY has a friend in Orlando who is also a neuro & he had been discussing my case with him over the years and he took me on.
I wasn't sure about him and contacted another neuro down here but after 2 visit's with him I went back to see the first Dr.
He wants to put me in an OR to do a shunt tap.
If things don't look good he said he would put in a programmable valve or two.
Remember I have 2 shunts.
He suggested I try pumping my shunt 10 to 15 times once or twice a day.
I pump it 200+ times.
It hurts some but at the same time it makes me feel better.
Enlarged vents as far as I was warned should never shrink.
I wanted the first neuro to drain all the CSF out of my head because I felt so poorly but he warned me that that could cause them to do more harm. Bleeding in the brain.
Long store but after a number things that went on I got my chance to drain all the csf out of my ventricle. I developed an infection in my CSF and had an external shunt for a short while.
That was my chance to over drain my ventricle.
I drained out in 10 minutes what should of taken all day.
Hurt real bad. But I didn't care. I wanted it drained.
They sent me for a CT the next day to see what if anything happened from drianing my brain like that.
Nothing. Not a thing. My ventricle stayed the same size.
At that point they said I had a stiff ventricle and most likely had hydro from either birth or developed it shortly afterwords.
I have tried many migraine meds, Oxycontin, Tylenol & codeine, Vykdin, and many others all without any relief from this non-stop never ending pain.
OK they work better with a glass of Vodka& OJ.
I'm fond of the Polish potato vodka.
The only time I really feel no pain is when they put me out for an operation.
Other then that. My head hurts.
George,
Your situation sounds close to mine, but I have a few questions. You state you have 2 shunts, do you have 2 blockages? I only have 1 shunt but I do have 2 blockages. (I think that is part of my problem)
Let me also ask you about the type of pain you experience. I've grown accustom to use the term migraine to convey the amount of pain I feel, but I don't feel that term is accurate. I have recently decided that my "pain" is the equivalent to what people probably feel during a head cold. It's pressure pushing out, not blood vessels, or nerves. Can you relate to that description?
To describe the pain as being like a migraine is probable misleading.
Pressure sounds more accurate. A times it feels as if my skull is to small for my brain.
Sound familiar?
Of course their is the guy inside my head with a Stun Gun and he likes to sap me once in a while. The ice pick man seems to have died. The big guy with the railroad spike and large hammer now takes long vacations. Good for him.
Trying to describe the pain to someone who has never experienced it is a very difficult thing to do.
I have two independent shunts because it seems like I need to have a lot of CSF drained out of my 3rd ventricle. Having a 3rd ventriculostomy along with one shunt wasn't enough.
I caused my 3rd neurosurgeon to almost fall out of his chair when I asked him to pu in a 3rd shunt.
Actually that wouldn't of helped much. The only way for me to feel slightly better,
nowhere back to normal is to lower the CSF level so low that it causes my spine to become extremely sore and my neck cracks (same as cracking ones knuckle's) and that spinal pain is worse then living in a dizzy dits world.
The ventricular-spinal shunt I had for 14 months offered some relief but with the same side effect. That and I couldn't use my left arm much. It hurt so bad to move it.
That is why we went back to two VP shunts from one VP and one VS shunt.
George
George,
I've had all the sensations you mentioned. Do you also have a consistant "pressure" pain that lies underneath all the other ones? I suspect you do. How about issues with your eyes and ears? I'm having stiffness in my neck and back but my xray shows I'm fine, so I just deal.
I'm tired of just dealing with everything, but you make me afraid to let them "play" now. I feel that if they can't allow my vent to decrease in size, don't tell me it isn't causing me pain. And if they accept I have pain, try to work on the problem causing the pain. Pressure.
I thought of this last night. I have an extremely difficult time in really hot, humid weather and in really cold conditions. Can they cause these extremeties to happen while doing a CAT scan or MRI? Maybe that will help "prove" where my pain is coming from.
Yes that is what I feel.
A constant non-stop never ending pressure.
My eye's took years to finally setting down.
My vision would change throughout the day.
I couldn't go for new glass's because I would of needed at least 3 pairs depending
on the time of day as my vision would be different during the day.
Nothing ever shows up on a CT or MRI to explain why I am the way I am also.
I hurt.
The bottom line. I HURT all the time and they have no idea as to what to do about it.
Too much heat or sun on my head is very bad.
The extreme cold also hurts.
When we lived in NY I had to wear 2 hats to keep my head warm.
With those two valves just under the skin, they would transfer the cold into my head and that hurt.
George,
I only have one VP shunt and do not feel it's the valve that causes my head to get hot or cold. I feel it's the fact that I have 2 blockages, which I am shunted to where the shunt sends the CSF to my intestines. To me, the non-medical professional, feel that compared to people without hydro, my CSF is alot lower that flows through where it's needed.
What I am trying to say is that since I have less CSF flowing through my head and spine and body, my body has less water to get hot or cold, hence I get cold or hot alot faster than others.
I also feel this is the reason I've been the same 110 lbs since I've been 13. My body is constantly "feeding" off itself.
You spoke of drinking liquor to help, somewhat. I can't do that. I pay dearly the next day. Liquor seems to lower the water pressure in my head more which causes me more headaches in the areas the water is already low.
I'm sorry I feel like I'm ranting and not making sense. That's part of the hydro too. My thoughts do not ALWAYS connect, but they connect enough for people to think I'm somewhat normal.
George...one of the side effects of alcohol, that contributes to the hangover, is dehydration. Could that possible be lowering the fluid pressure in your brain at times? It doesn't take much to have an effect, (my thinking only, may not be the case.)
It is awful when the pain is 24/7. Been there, not there now, fortunately.
I am careful about what I drink and how much.
I haven't had a hangover in over 13 years.
I guess I'm lucky.
I know some people can't handle pain meds and alcohol.
I take them together and go on looping roller coasters.
Round and around I go. Yippee!!!
It could be because of the amount of pain I live with and the fact that I am never pain free I can tolerate what would make some very ill.
If my wife hurts SO BAD that she has to take just one T3 she hates it.
Makes her nauseous.
Me. I go ride a coaster.
Soon the new ride at Seaworld will be open and I'll be flying.
Oops I guess in more ways then one.
Manta simulates being a Searay or is it a Stingray?
My ventricles were "mildly" enlarged when I was diagnosed...however, because of double vision and incontinence issues, my NSG felt I had high pressure, and so the shunt.
I've had lots of CT scans since the initial shunt and revisions. Diagnosed 2006. My ventricles have always been read as "stable, no change since preoperative CT scan." When I've questioned my NSG about this, he explained that it was important to keep on top of the pressure problems, and he didn't want to drain too much. Haven't had too many problems lately, so I am more comfortable with the ventricle sizes not being any smaller. I am seeing NSG every three months, plus opthalmologist, neurologist, to stay on top of things. And I understand about the importance of not overdraining the ventricles, so feel okay about it.
That's just my story. I know they can get a measurement on the size of the ventricles to see if there is any change either way. Pressure was the main problem with mine. I may have had the hydro for some time without symptoms.
Good luck!
I'm 35 and have been shunted my whole life. I have never been told I can't see my neurosurgeon unless I'm having a shunt issue. I've been told I need to see one at least once a year, even when my shunt is working. How else are you supposed to know if it's your shunt not working or something else?
You can also have what they term as Slit Ventricle Sydrome. That happens to people who have been shunted a long time. The ventricels get very small and on a CT scan, they can look normal to a doctor who does not compare the new scan to the old scans.
I have severe slit vents. they are basicly non-existent. My doctor is concerned if he turns down my pressure any, my vents would collapse. I am very sensitve to any increese in pressure.
Joy,
I can definately understand what you are saying, unfortunately for me, my one vent has never changed in size. It has always been large. My neuro just always checks to make sure it doesn't get any bigger. I think he is missing the fact that it's still very large.
I was diagnosed and shunted at 21. After the first shunt became blocked within a month of surgery, another surgeon removed and replaced the original shunt. Too much pressure was taken off which caused bleeding between the dural layer and my brain (subdural hematoma), squishing the brain in the middle of my skull. Since draining the hematoma did not solve the underlining problem, my original surgeon tried something unique. He left the too large valved shunt in, and, after manually washing out the hematoma, he inserted a dual shunt on both sides of my head. This created the same vacuum of fluid on the perimeter as already existed in the ventricles. The result was my brain expanded to normal size over the next several years.
Before the last surgery I experienced unreal headaches. For the last 20+ years, headaches have not been a problem. They usually consist of a sharp pain which dissipates within a minute or two. Seldom do they last longer.
Since my surgeries where over 20 years ago, they did not have programable shunts as they do today. I would assume they have more control over pressure now. I believe once an equilibrium has been established, they should not mess with it again.
They have sceduled my shunt surgery for April 15 at noon. That's on a Wednesdy and kids in Union County, NC are on spring break so it's good for my mom who is a Licenced Professional Counceler, and has clients who have kids in school. It was originaly sceduled for March 30, but since my sister just had a c-section, she can't lift Ian or Mason, who are 4 and 2.
I just hope this makes my life more tolerable than it is now. I get tired of living from pain pill to pain pill and my head being a barrameter when foul weather comes. That might not change, but maybe it can be less of a hinderance; especially since I'm trying to go back to work.
I AM 80 YEARS OLD AND HAD SURGERY FOR HYDROCEPHALIS. THE SURGERY WAS DONE IN NOVEMBER EVERYTHING WAS FINE EXCEPT THE HEADACHES ARE LIKE A VISE SQUEEZING MY HEAD. I HAD A PAIN IN MY NECK FOR A WHILE AND NOW I HAVE NUMBNESS IN MY HAND AND NUMBNESS AND PAIN IN MY OTHER HAND ON THE SIDE WHERE THE SHUNT WAS INSERTED IN MY SKULL. ANY COMMENTS????
Have you checked with your NSG? Feeling the vice grip was a symptom that took me to the NSG in the first place. Is your hydro normal pressure, or resulting from illness or injury to the brain? I occasionally get the vice grip still, but it goes away. Maybe a Cat scan and xray to confirm pressure setting etc. may help deterine cause. Sometimes a tap might need to be done.
I don't mean to alarm you, just telling some what I have been through.
Good luck.
I'm anxious to see how others respond to this.
No advice about the numbness unless your taking Diamox.
by
The vice like pain.
Your head feeling like it caught in a giant vice and one of Sadaam's son's is squeezing it for his pleasure!
Yep. I can relate. My head feels like that also.
13 years now.
I think you ought to call your NS. He would know what to think. The numbness in your arms can be a real worry and a red flag for other condations that might make themselvs known only when it becomes urgent or the shunt might be pressing against a nerve. I would suggest calling your doctor.
