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Why is a hydrophaelus so hard to detect?
Why when I tell my mother when I was just a young girl that my head was filling up with water she didnt beleive me. It is so frustrating that when I tell people exactly what is wrong with me I have a huge struggle to get things properly looked at.
I am better off not telling anyone anything and thus avoiding all the disappointment throughout my whole life.
For example even now when people see me on the street say to me you look fantastic and lucky you don't have to go to the doctors any more. They  are sure surprised when I tell them that is because they can not help me any more only moniture my symtoms. I am so tired of people not knowing anything about the true effects of my hydrophaelus is it so heart breaking .
When I told my mom she said well it was a long bus ride to school that is why you were so tired. It s like banging my head against a wall. When telling the specialists my symtoms.; they say I am not saying that you don't have these symtoms I am simply saying that we don't ha\ve this on record.as a symtom. Yet when I visit this site I get people telling me the same symtoms.
It's enough to make me scream. Which I can not do because my headache would only get worse.
I am so dissappointed with the whole lot of people who are suppose to be supporting we people with our Hydrophaelus problems .
This is a good site one of which I am glad to be a part of because we patience can exchange problems and ideas and dissapointments.

The most dissappointing of all is being in a family who do not listen to anything I say , then csay to me ; why didn't you tell me what was happening?
then going to the Neurologists and they put up a grand stand and say ; you know more than I do and I have just studied for 11 years. In other words they know everything and I should just be quiet. One dissappointment after another which has turned many of us looking to other ways of getting help.
There are always other paths to walk down, in my case run. I have been helped with homeopathic remedies which has me being able to walk without falling face forward.
I also know that when doctors tell you to do exercises for your abdominals that they didn't belevie me when I said I can not lye on my back and the water swishes to the back of the head.
Then as stupid as it may sound rushes to the front of the head much later around 15 mi-20 mins later to really make me sway back and forth. That is the most scary feeling I have had.
I have learned not to listen to the doctors telling me to do exercises. Rather go to a homeopathic who actually open the urinary track to empty the bladder because the brain had not been giving the signal to the closing muscle to open . I'd be sitting on the toilet with a sore kidney and a full bladder but yet could not get the muscle to open. Even telling my body part open , open , and nothing happened.
Frustrated I asked my homeopath what\s up with that? He said; It doesn\t help the brain get the message. The brain has been damaged in areas and has to find new paths to connect to the bottom half of your body.
Yet the doctors all seem to thnk that that all works apart and doesn't need the brain to give the message. How wrong is they are. I am the living proof  and yet no one listened to  what I tell them.
My mom seems to think that if I walked more I 'd feel better. God, please give these people insight.
The more I do the less good I feel. My brain is 3/4 full of brain fluid. People still have no idea of what that means, even the doctors don't.
When I tell them I walk a dog in the street which makes walking more pleasant and tell him how much , the only question was.; Is it is a big dog or a small one. I had to laugh , I am like the dog whispher on tv , all the dogs whether they are small or big all listen to me.
Which is more than I can say for the people I have around me be it family or doctors.
3 Responses
1340994 tn?1374197577
If you are saying you have hydrocephalus, or water on the brain, then there are proper treatments, including shunt.  Walking is certainly not  an effective treatment, and it would be difficult to get on a healthy exercise plan when you have such headaches and discomforts and pain from this condition.  Let's face it; pain that is in a person's head or neck is impossible to ignore.  It needs to be fixed for the person to have any quality of life.  Have you had an MRI or other tests to properly diagnose your hydrocephalus so proper treatment can be started?  

I understand about people being clueless, including family members and doctors.  My problems were all digestive, but everybody wanted to sweep the problem under the rug and I was to just deal with it and not bother them.  
Avatar universal
Will agree with Caryopteris.  
Avatar universal
I have had all the treatments that are humanly possible to get. There are no other treatments available in the doctors world and yet they do not accept that homeopathic remedies are far better than taking an asprine or other pain killers . As that is the only option they have to offer. Other than replacing the shunt.
It is time that they smell the coffee. Get with it and stop fighting the homeopathic remedies as this is working far better than one could ever hope for. It is simply amazing that there are other ways than going for yet another scan and after telling me that my water levels were the same for yesrs. Once I took homeopathic remedies the hydrophaelus started to drain. I knew that it had drained because I began to feel different.
The only thing was that I began to feel better after I got a different food plan. Which for me is a bit hard to stick to as I grew up eating potatoes as I grew up on a farm. Moved to Holland and again they are potatoe eaters.
I do like polenta but do not have many recipes for that.  Hubby does not like it and then I end up cooking two seperate meals. He didn't like eating paella but after I fished out all the tiny muscles which I gladly ate . He ate it.
I love fish and he doesn't.
I also found out that I have a slipped disc which the doctors would not take a proper look at. Had to go to another hospital about it got the correct diagnosis. I do have a slipped disc however they will not operate on it because of my hydrophaelus.
Also found out that I have inheritted the rheumatism from my grandmother on my moms side of the family. To top things all off I am going to the change of life and that involves a lot of hormons. My hydrophaelus is smack dab in the middle of my head where the hormones production is found.
I am the overall winner of the lottery.
Since I have been drinking Nettle tea. At least the toxins from my misfunctioning right side of my kidney and liver have  been working a lot better.

I must of ate something wrong the day before yesterday because I was all bloated. I felt bloated the whole day. My face was thick , around my eyes felt as if water was under my eye lids.  
I must of had a lot of toxiens in my body . Now to figure out why  this has happened.
I am wondering if it came because I have gull stones.  Or just perhaps from the abnormal feeling of water in my body that was every where yesterday.
I was supper tired all day.

A shunt is not the only answer for hydrocephalus patients. There is more to it than just placing  a shunt in the brain and to think that that is the only answer to address the problem.
What about the not normally working kidneys. I have had the shunt put in since 1995 the one that works that is. The shunt works okay when the fluids don't turn thick. After all the fluids that are in my head have been in there since I was 12 only got an experts opinion after I was 32.
For digestive problems I went to a homeopathic physical therapist whom has helped me tremendously.
Doctors know very little about those kinds of problems.
My MD wouldn't even do a  test or send me somewhere to have it done.
He said ; that would involve a lot of time and if they get results that is the question.
So I know how Caryopteris feels.

Good luck ladies
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