Hydrocephalus

[nikkib_72]

I was just diagnosed with hydrocephalus due to aqueductal stenosis. For about a month or so I have been suffering from annoying headaches daily. These headaches are not painful, but annoying. They would start usually during the afternoon. After 4 CT scans (one of which said I was fine) and 1 MRI I was finally diagnosed. I really have no other symptoms but these headaches, occasional lightheadedness and this funny warm sensation that I get sometimes in the back of my head. But to make a long story short, I was told that I need a would need a shunt and that's the last thing I want to do. Has anyone heard of any alternatives to shunting? I would appreciate a less invasive alternative beit natural, herbal, etc. Any hope would be much appreciated.

[jwise]

I haven't my husband has it he is 33 he has had a shunt since 2000. It took them almost 3 years to find out what he had. Since then he has had 21 shunt revsions, and still has headaches and we are now trying all these different medications. Don't let the shunt scare you it sounds so much more worse than it is. My husband has a very rare case his CF is very low, so he is now seeing a Pediatric Surgeron. So if you find anything new let me know and if you ever have any questions let me know, I am also a surgical assistant.

Jen

[nikkib_72]

The only thing that I have heard of was craniosacral therapy. Right now I am seeing a homeopathic doctor to try to remedy my situation. I am trying everything that I can to avoid a shunt. I maybe being vain, but I don't want to have part of my head shaved, and all these things I am hearing about revisions and things are really scaring me! If I have to have this done, I will drive myself crazy when I have the slightest headache! Is the remedy worst then the problem?

[sierras mommy]

HI, my name is Andrea. Im 28 and have had a vp shunt since Sept. 15 1999. I was 19. Almost 10 years later I am still with the same shunt. It works and Im glad to say my neuro doesnt see me needing a revision. However, I have headaches and sometimes horrible migraines. Not to mention dizziness is a lot of fun but I like it, its kinda like a ride. just kidding...
Anyhow, My neuro has told me that the only way to stop the headaches/ migraines is to put in a programmable shunt. The reason I have the headaches is do to the buildup of csf of overdrainage of it, I get both. With a programmable shunt my dr would be able to adjust the pressure accordingly just by going in to the office for a casual visit.

All this said, there are many option out there, when you read about all those revisions and what not, you need to also take into consideration that they are more in regards to the kids. Adults arent growing anymore so we dont have to have the amount of revisions a child would to accomodate their growth. The only reasons we would have revisions would be due to a shunt obstruction, malfunction or infection. If the dr gets it right the first time you have the shunt placed then its not a problem. My best advice is to research your surgeon more than researching the other stuff. I would not change having had my shunt placed for anything. It saved my life. Good luck and please if you want to talk anymore my Yahoo IM is [moderator note: personal contact information has been removed].

[nikkib_72]

Thanx for the info. I guess if I have anymore questions then I'll have to contact you here for they have taken off your IM info.

[hydro]

You are crazy for not getting the procedure done. Would you rather have health problems for the rest of your life or be healthy with a little scar on your head. It actually adds character. I am a 32 year old athletic male who has been living with a shunt for 14 years. It did take 3 tries for them to get it right due to my age (18) and height (6'05).
The weird part is that I do not think I suffer from headaches at all, since the shunt was placed properly. I was a little insecure about the scar on my chest and abdomen area, not to mention the small lump protruding from the shunt in my head. But overall, it adds character to your personality, makes you more humble, and gives you an extra push to work harder at whatever you do.
Even with my scar, I am still able to do fashion shows. And physically, I work out eveyday, so people focus on the positive qualities on my body rather than the scars. Good luck! Wish you the best!

[hydro]

please contact me. you seem to know a lot about this condition.

[nikkib_72]

Thanx for the reply. Since I have posted I really have been having concerns and decided that maybe I should get it. But then I came across a mother whose daughter has the same symptoms I have and her neurosurgeon told her not to let anyone try to shunt her because her hydro was too big and it may cause a collapse. Now my neurosurgeon told me that I wouldn't "benefit" from a shunt. Is he saying the same thing that her neuro is saying by saying that I wouldn't "benefit?" This is scaring me cause now I feel that I have run out of options where there really was probably only one..... Please get back to me with your opinion.

[hydro]

In my opinion, everyone is different. Especially when it comes to gender. Thats the one downfall about talking to several people about the same topic. I only do it because it's nice to know I am not the only person to have this condition. And I would love to re-assure anyone that I can that everything will be ok.
However, you seem to have your mind made up about being anti-shunt. If your neuro said not to get it done, than I guess he knows best. Your body is the only one that can tell you what's right. Listen to your neuro, however, once you start suffering from bad headaches (and i dont mean one or two), constantly tired, vision blurred, than thats the time to seriously set up an appointment to have the procedure done.
I had doctors tell me that it was nothing serious, just psychological. My body told me otherwise. Just dont make your decision based on pride. Keep me posted!

[nikkib_72]

Beleive me my pride is now coming 2nd to everything. Now that I have been doing some more research and asking ?'s, pride is now coming in last place. But I went to my neurosurgeon to clear some things up and he still feels that I would not benefit from a shunt due to the fact that he doesn't see any pathological reason that my ventricles are a little larger than normal. The 1st neuro I seen seemed to have this questionable look on his face when I told him my symptoms and he seemed to be guessing that I had hydro due to acqueductal stenosis. The second neuro seems to think that I may have just been born with larger than normal ventricles and that the mild symptoms that I am having are due to lower than usual blood pressure, stress and a sinus infection that I have since been diagnosed with. So I am praying that he is right and if not I will be taking advantage of all options.