I can not shake this feeling that keeps rattling in my mind. Could it be at all possible that my hydrophaelus is being caused by the slipped discs in my spine. The pressure is 25. I can as my brother has said just like him we could actually slip the discs back into place often an on whilst doing the exercises. However , since my hydrophaelus is being agrivated when I lay flat I can not do these exercises the neurologists have given me to do to strengthen my abs. So it is all a lost cause. Hmmm is there any other way? When walking down the street , if I walked too fast and I used to be able to walk the mile in 8 minutes, Now lucky if I get there in 25 minutes. If I walk too quickly my water pressure rises in my head. When I stop walking I need to grab something quick so as not to fall forward. This is because I have stopped walking but the water seems to swish forwards, thus knocking me out of balance. It is very scary. When sleeping at night must get the proper elevation for my head otherwise I feel myself slpping away. Which is also very scary. However , I am too difficult to operate on. The doctors do not do an lumbal puncture fearing the risks of an infection.
So far the only things that seem to have helped is the homeopathic medicine . These medicines help me go to the toilet . I can actually pee more which is simply amazing.
I had seen these shoes on Tv, with the rounded soles. They are amazing, at first , I found myself losing my balance and falling backwards. Once my brain got used to them, the shoes actually improved my backpain. I am standing up more straightly. However , they said that i would lose weight just by walking in them , I would also feel my calves. None of that has happened. Probably because I do not walk fast enough. However I do walk long enough.
Anyway I am all to happy just not to have that irritating pain in the lower back.
Its unlikely that the slipped discs could be blocking the spinal canal completely to account for the raised CSF pressure. Either the arachnoid plexus are producing more CSF or there is a blockage to the flow of CSF. The dizziness could be cerebellar related. Other symptoms symptoms related to cerebellum are difficulty walking, tremors, difficulty with fine tasks and an inability to talk.
Wishing you a Very Happy Healthy New Year in 2013. May all your wishes come true.
Itis not a dizzyness rather a passing out completely. The Neurologists didn't take me seriously the time I had visited them way back when. I am just not so up to going to see them ever again. They are way too arrogant for my tastes.
When I go to a Doctor then it is because there is something seriously wrong. I do not waste my time or others.
I seriously think that the two together are causing the problem. The hopeless pain in my right hip when I walk is caused by the pinching of the nerve. I know that for certain from a very early age.
However there is a pressure in my right shin , and at night my leg goes numb and goes to sleep hence giving me a tingling . I am forced to get up out of bed go to the toilet to have a wee, and walk around so that I can go to sleep. I do not feel the pressure on my bladder as much anymore. Still have a hard time when the pressure builds up and go to the toilet that the urine will not come out. Its so exasperating. Once it does come out, it is in little bits at a time. Only when I push it out as if giving birth , then it comes in a gush. Hence giving me pressure to the brain because of the pressure added when pushing.
It is so weird. You 'd think that when you sit down and you feel the pressure that it would automatically open just as it did all the time.
The nicest thing is, that today I have very little pain in my head. Now don't take this the wrong way, because I am in no way an alcoholic, I drink a glass of Vodka and 7 up every once in a whie. Bluemoon. Birthdays , Anniversary. but never any other times. The occasional glass of wine. Last Night I stayed up to 1:00 am could not handle any later.
The Hydrophaelus takes all the energy I have just to do the normal everyday tasks.
Anyways my head is numb...which means no headaches, I only have one glass of Vodca.
Thank you for answering. Good Luck
I found also that when my boules are not moving properly that they give me a pain in my right hip as well.
A while back I had a build up of fluids on my left side of the brain. Got that taken care of by other means. As the doctors do not take what I say seriously and think I am there just to jank their chain. I decided not to visit them anymore. It makes me more ill pyschologically. If you understand this.
Even went to a Pschocologist and man are they behind the times. Really got to get away from the brown sugar about everything coming from the youth. Get over it and move on. The only problem in my youth is that no one heard me and they still are not listening.
I am only telling you this because heaven forbid there may be someone out there in the medical world who will actually listens to me.
I know I am an extreme case. I do not put up with bad treatment or second guessing.
I know that the two are connected and the problem lies there. Whilst sitting behind the pc , because I have such short legs my husband had made a footrest. That helped a lot but the last while my toes are beginning to fall asleep more often.
I go for walks, I walk a 1.6 km or 1 mile back and forth. I have to sit down when I get home to rest, before I put away my groceries. Tried to do it right away one day, however, my legs gave way when I stepped down into the porch . You wouldn't beleive how happy I was. This time I actually fell on my hands and knees. Not falling face first. I usually fell head first. Meaning I had no control over my body at all. That I attibuted to the Hydrophaelus. Yet there is a gnawing in my head, that tell me the two are connected.
I can not do abdominal exercises because the water in my head sacks to the back of my head. If I lye flat on my back I feel like I am going to go into a coma. I have a feeling as if I am falling into a depth. Weird feeling., don't like that one bit. I hate this pain in my rightshin and the tinteling in my right leg up to the knee.
Hi.,..I am so sorry u r not getting answers to ur hydro issue....have u had the tilt table testing?...Ask about POTS as it is positional, and u did mention laying down u feel worse....
As for disks affecting CSF flow, it can if the area of the bulging disk u also have stinosis....which is something I have and my NS told me it could cause drop attacks which is the result of a stoppage of CSF flow.
What u describe sounds like a drop attack, u go out for a few seconds, but come back enuff to be aware u r falling, but can not react or respond....scary I know, and u can really get hurt, one such fall left me needing 2 surgeries for injuries incurred.
Do u have a copy if ur MRI? and the report?...as the Dr mentioned something cerebral can cause a CSF obstruction, so look at the report for low lying tonsils.....
I have Chiari and am very familiar with how u feel....and I also know how frustrating it is to get answers....
Thank you very much for your support and suggestions.
Oh the only thing that is so irritating is that the neurologists are so arrogant. More the men than women. I can not for the life of me think why people would stop, listen and learn from their patients before they form an opinion.
I have had it up to here with STUPIDity or Ingnorance from the health carers.
Come on already stop being a pain in the butt, if you don't know something it is Okay. PLease stop thinking that we patients do not know what is happening or unaware , After all it is my body, I klnd of know it like a road map.
Selma you said something about tonsils. I snore awfully bad, so badly that my hubby sleeps in the spare room. In the hospital they put me in a room with only one other patient. The poor old lady I pitied her so. It is better to keep only one patient awake instead of 6, but the old lady had parkinsons and could hardly get any sleep because of the violent shaking body, poor thing.
I was thinking , would my loud snoring cause me to have a head ache in the morning because with snoring one doesn't breathe properly at all.
I have flem in the morning. I used to have slight asthma attacks...peeping.
Found out by eating raw salted harring , It stops that. It is not the salt but the combination of the two, the raw salted harring.
For my arthritis which no one has tested me for yet. I eat smoked salmon. The salmon oils help with the stiffness.
NO i don't get to see any of the scans or reports. They just tell me about their findings. Until I went for a second opinion . There the specialists were like an open book so refreshing.
IThe thing is Selma I know the answers but there is no solitions.
Thanks for getting back to me with that! O and it is not worth asking for the doctors reports, I had done that once from my former Gp when he gave me a referral to finally get tested for my Hydrophaelus which at the time I didn't know I had for sure. He wrote everything in latin so I didn't understand a word that had been written. I fired him and looked for an older doctor whom did go to battle for me more than once against the Neurologists in the AMC. Especially when I had gotten a referal from my Neurosurgeon that he was the best.
Now I hope I got your eyebrows raised. Doesn't this seem odd, I was visiting my Neurosurgeon to get an assesment on my Hydrophaelus, which I had all the scans done. Even a full body scan. They did not find anything wrong with my back.
For further investigation on my back he reffered me back to a Neurogist in the AMC to get an accessment if I had slipped discs!
Only the Neurologists can give an referral to operate on the spine. However , When I had visited the Neurologist in question, whom was suppose to be the best in the AMC, he had met me in the waiting room and started yelling at me, I was apparently too late for my appointment, according to him.
Now , My hubby took a day off to travel by motorcycle to get to the hospital on time. We could weave in and out of traffic. It was an absurd early appointment when everyone knows coming from this side of Holland , the traffic is horrific. We managed to get there on time.
The Neurologists in question was shouting at me in the waiting room. Mrs. Threewheelmobile. Your late. In the Neurology department we work on time.
There was someone who cancelled so he had to wait for me. We were in fact 20 minutes early.
He hadn't read the report. He asked questions that were in the report for him to read and make himself aquainted with case. He had all the time in the world if we were so late as he had said we were.
He didn't ask any questions he rushed me threw all the tests , which by the way had already been done by the Neurology department. I went along with the stupidity.
Three weeks later we went back for the folow up.
He said nothing came from the tests. Now that is funny I said, They had done a nerve test on my right leg. The Neruologist in question was not present when these tests were done. I had someone else helping me. He was so excited with this new development of tests he asked me if I wouldn 't mind having a two of his colleges have a look. I figured the doctors are here to learn , so I agreed.
Now having said that; When I went back to get the answers, I had asked my Neuogist in the AMC whom was proclaimed by my Neurosurgeon to be one of the best ! I asked , what were the findings of the Neurologists when they had done that nerve test on my right leg, what was so interesting ?
He replied; Oh that," It was nothing!"
Now my question, If it was nothing why did three of the Neurologist think it was so interesting?
Now people out there , Do you have any doubt as to why people slug or beat up their physcians? I began shouting at him, and my husband began to warn him. We made such a racket that the Neurologist at the time said; I do not have to stand for this. I'm getting the proffesseur. I said go, go and get the proffeseur ! My hubby said; run and get him, He could use a lesson too! Where I had had enough crap to last me a life time. Me and my Hydopahelus could not take any more this worthless brown sugar. I told my hubby, get me out of here before I hit someone. NOw picture this a short canadian full of fire, I get that from my Dad. I would have hit him even if I had to climb on a chair to do so.
I didn't go back to the Amc for years I think it was 8 or more.
I think its been around that long now as well. Them and their stupid scans, not using their minds which god intented them to use.
Things are so simple so why in the heck do the doctors play these darn stuipid games. I really hate having to visit physcologists who think all my anger comes from my childhood....Who in the heck do they think they are kidding.
Its time for all the Neurology departments to wake up and smell the Canadian coffee for a change and not stick that black guck they are drinking. It is corroding their brains.
We are already ill and shouldn't have to become so ill mentally because of their misguided thoughts that just because they have studied for 11 years that they know it all.
That was by the way what the Neurologist told me. I have studied for 11 years and you are going to tell me that you know better. YES! was my answer, who in the heck has been living in this body ? Me or you?
I told my Gp this at the time, he referred me back to the AMC and told the Neurogist to give me his appologies and do a proper assesment. To which , He refused; Got a sort of an appology , If you call it, Sand over and a hand shake an appology?
I shook on it but man I still want to hit him ,like in the cartoons where his head turns three times round and perhaps when it come back to the right place that he get the brains back which made him a doctor in the first place.
Now who had the athority to do the proper testing on a back injury so as I have? I know it is ,an Neurosurgeon. So why in Gods name am I still playing patty cake with the Neuologists????
Who can not even afford a watch to see what time it is?
IIt time to wake up ladies and gentlemen and stop making our health care costs go threw the roof , with the shody work they call doctoring.
I do think I told you that it is not dizziness but rather a passing out , but not completely . I know I am going to pass out but can not do a darn thing about it, to stop me from falling. This is very scary.
Just thought I'd mention this just to clarify what I am going through,
I got my ears tested by a specialist. He said , I could go get a hearing aid but didn't think it would help much as he could not find anything wrong with my ears, It is the pressure on the brain causing the hearing loss.
Also my eyesight , It is hard to focus.
I had mentioned all these things to the team that were testing me for my slipped discs at the time. The answer I got , was I seemed to have eveything wrong with me didn't I ! Which simply to me came over as stop whinning.
I was so disgusted that the physcians didn't take me serious.
My hubby keeps saying; he hopes that one of their family members will get this illness or themselves, then maybe they will take what was said to them more seriously.
Many of us here in the states have come across Drs like that too...sad really...y r they Drs if they do not want to help...or listen....sigh
I am so sorry u have to go thru this as well it is so frustrating......and it does not help how we feel either ,.
Too many people take the defensive when the Drs tell us it is anxiety or all in our head, but many times it is in our head and we need help with it...they just do not get it,.
Have u had the tilt table testing for POTS?
Here in the states we get our reports and copies of our MRI's etc...from the facility that does the testing not our Dr as they charge...and the facility has it worked into what they charge our ins.....
I was told I was getting older...nice huh?....made me mad as H^%^.....
My feeling is we know our bodies the best, and Drs have to listen to us....granted there r a few out there on half a beam, but what would it hurt for them to listen and look further...???
I will have to look into that test you mentioned. POTS. I know ,, they are suppose to release the tests or give us copies , but these Dutch doctors are so arrogant, probably afraid of being wrong. PLus having t o answer to the NHI.
I am going to tell you something. I am a paranormal or at least I have this gift. Although I don't use it much as I am unsure of it as yet.
I know what the doctors are going to say before they enter a room. I always have had ths gift if we can call it that.
I usually have dreams at night, or feelings during the day. Or just walk up to my neighbor and asked her if they were trying to become pregnant. Yes , she had answered me. Well I said you will find out late October or beginning November.
I walked away. This was 3 months in advance. She came up to me when I was getting our roll bins to put behind the house.
She said , Three , do you remember that you told me I 'd hear about it around this time. Yes. well you were right.
Another lady I had met taking a French course. We went swimming together. Her husband had passed away from cancer. Time passed . She said ; I am ready to move on with my life. I said, you willl meet him at your dance class.
I had said to her; If this comes true, give me a ring on the telephone. She said ; I can not afford it because she had a 06 nr. I said all you have to do is speak into the answering machine Three you were right , I 'll know its you.
Three weeks later she rang me. You were right Three and hung up.
I have since then , improved on my ability. I can use my hands to take away pain. However , not to help others because of my water on the brain.
We got tested , my hubby and I ; My hubby is very good. So am I but I am at a lower level.
I was put on this earth to teach the MD's a lesson. It is a long hard road. They really have thick skulls. It 's hard to get threw to them.
When I went to get my drain adjusted it slipped backwards, causing the headaches to come back more severe. I told them , my drain slipped but they didn't hear what I said, ignored it , what ever . It took them 7 days to figure it out.
I knew because I had heard it slip, I could associate the sound with the sound that my hubby's motorcycle made when he was adjusting the electronical system on his Ducati. It was the same noise.
THey are such nuckle heads not to listen. All they had to do was to take an exray of the drain on which number it was. I would have not to have feared of dying.
I wasn't scared because I knew my spirits were there to help me.
Although the pain was not at all great.
We had a paranormal come to the house as I heard a voice. He came, It shook him up because he heard the voice as well. For some reason I was not afraid. I was kind of surprised that this man was shocked to hear a voice.
The spirit to the voice is here to take care of me.
When I sleep at night and I end up laying to flat. I go into a deepness that is none to pleasant. I then feel someone kick the mattress and wake up.
So , even when the doctors are not taking me serious there is someone taking care of me.
Only thing is I have only got 3 years left. Someone is going to find out something to help me. During this time , I am so trying to keep on the up and up.
When I go to the neurologists they think I am fine because I am on the up and up. I crack jokes with the other patients. I am happy. It does not mean that I am not in pain.
The last time I went to the neurologist they did a shameful exam on my back. Skipping over the painful disc. They even made me hop on one leg. That was there proof that I did not have a problem.
This problem with my spine is herittary. wrong spelling. My brother and I have it.
Now I know , that the clicking of his jaw when he eats comes from the discs. Why do I know , I have it now too.
I was thinking it was from clenching my jaws because of all the brown sugar I have been told. God , I pitied my brother, now I know what kind of a hell he has gone threw.
He is still going threw hell. The operations did not work . One because he kept on doing work that he shouldn't have. The neurologists are now investigating his back further. The don't know what the problem is.
He says he feels as if his spine is twisted. Only time will tell/
As for me, I could have drunk a whole bottle of Vodka yesterday as my back when I lay in bed was so horrific, and my headached like I had a rubber band around it.
Look further Selma , are you kidding, Do you know how much it costs, or how much time they would have to spend? Remember that one Neurologist couldn't even afford a watch that worked?
OH well I hope i can sleep better tonight.
Thanks for being here for me and thanks for the prayers. I need him more than they know.
Thank you Selma,
It is not odd Selma. I would not of told you this if I wasn't certain I could trust you. I have a gift , which is highly in tune. Even now whilst I am writing this to you, my vision has blurred. That means that my spiritual guide is here with me.
I am suppose to write a book but don't know how to start it or what I am suppose to write about exactly.
It must have to do with the hydrophaelus to pave the road for others to follow.
Just don't know how to start it.
Costly,, this darn country threw out the health care because people kept going to the doctor. Dah not getting answers. Going for a second opinion.
and a third.
I am suppose to smarten up these physicians. They took an oath but are not upholding it. Money takes presedence!
One thing for sure is , they all are offensive before I come to them. None of them doing their homework before I get there, Asking me simple questions that was already written in the report.
It is so infuriating
My brain is so saturated with brainfluids that I am not suppose to be able to do any of the things I am doing.
I am not suppose to be able to talk or walk, Not only do I talk, I have learned three languages, I learned english that is my motherlanguage. Mum didn't teach us the Frence even though she herself is French Canadian. Learned a bit at school but still apprehensive to speak it , there are very little Dutch people that can converse in French. More people speak English now than when I have moved here.
I was in the AMC and they had a nurse practice the English language just to be sure that when I came to from the first operation , I might be speak in English.
NO sir re I spoke the dialect from this town .
The nurse knew this because he just happened to live here in his youth.
He said; all his work was for nothing. He spent three weeks practicing his english and what do I do. I spoke West Friese.
Then the doctors made their rounds. To kill time in the hospital, I bought a small table cloth to embroider. It is fine work as people keep telling me.
I didn't have any problem with that at all. I just loved to do that.
Went to the Vrije University he needed some surgury on his hand.
Took my table cloth which was not yet finished.
Josh told him that I had a Hydrophaelus, he looked at what I was doing and he no she can't have a Hydrophaelus. You wouldn't be able to do any of these tasks with a water head.
My mum used to tell me I can do anything what I put my mind to doing.
She didn't know about the Hydrophaelus back then.
I just can not walk a straight line without falling over. Should I get a mention on my drivers licence of that? If they ever stop me for a breathalayser test should I need to drive a car? My hubby says; they'd haul my butt off to jail , I would never pass that test if I paid the officer. Also shouldn't I carry around something that would alert the doctors or ambulance drivers not to lay me flat?
As no one sees on me that I have a Hydrophaelus.
My PD before this one said not to tell anyone I have a waterhead! I looked what
the meaning of the word Hydrophaelus meant. Simple terms - waterhead.
I said , if I tell them that I have a Hydrophaelus they all ask what is that?
I just answer them water on the brain. Or waterhead.
Our Goddaughter picked up on a conversation between her mom , my sister, and our mother. Now this really cracked me up! Do you mean that Aunty three is Brainwashed?
Oh and one other thing, when going for the tests for my brain functions. They give you words to remember and repeat later. So I couldn't remember a word so I took a Westfriese word that is the language from our area. put it in its place to help remember it. The Neurologist testing me said , your making up words. I said no I am not . trying desperately to search my brain to remember what word I had used. I remembered it and said sorry that was Westfriese.
Here is the thing, when your pc gets overloaded with so much to remember, What happens? You need to defragment it. We can not do that with our minds, unless we have a different means of help. Meditation is one, probably the best kind. Only the western world is more opt to giving medicine. A person such as myself can not take medicines. Painkillers and especially not calming medicines. The brain is fighting everday just to stay awake and alert as it is.
Now brings me to the part of the phshcologist, who prescribe medicines to calm people down. Be Aware of what damage they can do if the person in question does has a hydrophaelus , The damage could cause more damage to the brain.
I know I have taken paracetamol. The Neurologists said; I could take 4x 1000mg per day. Who were they kidding, I was like a zombie.
I sat in my chair in the living room waiting for my brain to wake up so that I could actually do something.
So when I the drain slipped , I was readmitted to the hospital. Again no one listened and it took 8 days to take a look at the drain via an exray . What number it was on. It slipped backward.
I refused to take any painkillers much to the annoyance of the nurse who desperately wanted to help with the pain. I wanted to be aware of the sounds my shunt was making.
The first time I had the electronical shunt put in , my second operation, It made so much noise,. I said , to my husband, we need to buy a new fridge because that is the sound I thought I was hearing. They both made a highpitched noise.
Now my hearing is going down hill.
I have become jumpy. Especially when my husband comes upstairs and begins to talk an I am unaware of him standing there. Talk about a bloody ghost lol.
When I mentioned all these things to the professor I had last visited in the AMC there were three of them , the professor a neurologist and a trainee. They all did these shody examinations.
Almost drove me mad! I am too strong of a lady to let a bunch of overpaid knuckle heads get the better of me.
It does make life more difficult than it already is . Not being able to put your trust in the people whom are suppose to be helping us.
You had given me an email adress for a neurologist in the AMC going by the name of Cathy. This program only showed her first name but the rest of her address was blocked. Please send it to me via my email address.
***@**** . Not feeling at all well.
Hi Good afternoon,
Well my doctor had contacted the AMC and made an appointment for me. They were debating of they were going to send me to see a Neurologist or a Neuroloog.
This morning an assistant called me up and said that they do not know me and I am not listed in their hospital. They had probably wirtten me out as I hadden kept up the control appointments and I had asked for my info to another hospital to get another opinion.
It was luck that my hubby has a free day on the thursday . I just handed the telephone over to him. He can remain calm. I can not. The druk in my brain can not take stupidity, or going into lengthy conversations just to get an appointment with those king and queens in the health services department.
Everyones voices sounded as if they were shouting today. Man life ***** big time, when the Neurology department plays these foolish games with me.
Selma I am in no means scared of what is going to happen, as much as going threw a ridiculous round with the neurologists again.
She said to my hubby; yes well she has new problems doesn't she?
I am thinking , Of course they are new problems. The pressure in the brain is on the rise and I am getting myself worked up over making an appointment . How stupid is this country, or rather the ones who think they can treat people like dirt?
I had pain in my jaw. I could hardly shut my mouth when chewing. I found out what was causing it; It is because my jaw is cramping up because I am so darn angry , to have to work with a bunch of dumbells. Hiding behind the sisters to get rid of me.
I keep falling forward, that is because the pressure on the brain is on the rise. Working myself up about getting in for an appointment is just a waste of energy.
The energy I have so little of.
You know it is one thing being sick with something that no one knows how to take care of. It is a total different story to have a desk nurse say that they don't know me. Then she asked what is wrong with me? Hubby said; she has a shunt; she asked ; what is the shunt for? Josh asked ; What do you need a shunt for? She said ; Does You wife have a hydrophaelus ? So then she was Dr. LS patient.! Correct; was my hubby's answer.
Until my hubby said ; I was a patient of doctor L S
Now I am still waiting to see how long they will make me wait just to get the drain checked?
Then hubby said ; if you don't know what of who; get in touch with her Gp.
He hung up.
I am thinking gees now if I didn't have the paranormal world watching my back I would have been dead a long time ago.
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