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Old 10-21-2015, 08:10 AM #1
kitkat33 kitkat33 is offline
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Default Hydrocephalus - New

Hello,

I am new to the board and joined after I received a call from my neurologist last week letting me know that a brain MRI I had showed that I had enlarged ventricles and potential Normal Pressure Hydrocephalus. I am 33 years old and looking online I can find very little information about anyone who has been diagnosed with Normal Pressure Hydrocephalus around my age. I was curious if anyone on here potentially could have this condition and be around my age? Also, if so, I am curious what your main symptoms are? I am having issues with fatigue, muscle weakness, continued bladder infections and some short term memory problems (but not sure if the memory is anything new, I have felt my short term memory hasn't been great all my life).

So thanks for anyone who has any thoughts or may be able to let me know I am not the only one out there with this type of condition around my age.

Thanks!
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Old 10-21-2015, 06:47 PM #2
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There is a triad of symptoms that sound a lot like what you may be experiencing. It could be a great thing that they find this early, means they are really looking and not blowing things off, less chance you lose functionality. NPH is often missed, even in older populations.

It is young. Not sure how they would differentiate between having mild hydrocephalus all your life and NPH, or it makes a difference in treatment.

www.hydroassoc.org is the Hydrocephalus Association
www.ahcrn.org is the Adult Hydrocephalus Clinical Research network
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Old 10-22-2015, 08:14 AM #3
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Pogo,

Thanks for reading my post and for your thoughts. I hope that looking into this will be a good thing and I will get some symptom relief. I just am hoping that there is not something else going on and the root problem is never solved and things keep getting worse. I had a brain MRI in 2010 after I slipped on ice and hit my head. At that point everything looked normal. I am wondering if maybe that could have done something to cause this problem. I did have a list of neurological symptoms before that though. I also have postorual orthostatic tachycardia, were I deal with an increased heart rate upon standing and some other variouis neurological issues since 2003. Its not fun to add something else to the list but it would be great if maybe this diagnosis helps to improve my most bothersome symptoms with treatment.

Thanks again! Any additional thoughts from others would be great too. I am just feeling very alone right now with my list of symptoms increasing But am happy to have founds this board

Thanks!
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Old 10-25-2015, 08:37 AM #4
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Quote:
Originally Posted by kitkat33 View Post
Hello,

I am new to the board and joined after I received a call from my neurologist last week letting me know that a brain MRI I had showed that I had enlarged ventricles and potential Normal Pressure Hydrocephalus. I am 33 years old and looking online I can find very little information about anyone who has been diagnosed with Normal Pressure Hydrocephalus around my age. I was curious if anyone on here potentially could have this condition and be around my age? Also, if so, I am curious what your main symptoms are? I am having issues with fatigue, muscle weakness, continued bladder infections and some short term memory problems (but not sure if the memory is anything new, I have felt my short term memory hasn't been great all my life).

So thanks for anyone who has any thoughts or may be able to let me know I am not the only one out there with this type of condition around my age.

Thanks!
Hello ,
Well I was diagnosed of Nph hydro at 44 years old .I was having serious issue with short term memory ,balance ,gait issue ,urine incontinence....and severe intra cranial pressure .As well I did loose hearing on left side for several months ...sinuses were under severe pressure ...I was quite lethargic (sleepy .no concentration ,severe low back and top back radiating pain.I suffered seizures a few time .One time after being at the hair dresser and had received a capillary massage ...I fainted ...looking back I understood why lol.Blood pressure was dangerously high,i could not feel my feet at times etc
one lumbo peritoneal shunt was put in in 2000 ...it failed after a month and half ....was out 4 years on fluid pills which we do know is only or should be only used on a short term basis ..Anyway they finally decided to operate and put in a ventriculo-peritoneal shunt {brain area}In 2015 I am still with the same shunt ...it is not a programmable one but I guess at the time the neuro surgeon made that decision for me .I do go through severe head aches with change in barometric pressure but I have learned different ways to cope .Art therapy has been a true blessing ..When I paint ,I focus on painting and concentrating which gives me a sense of accomplishment and joy .I am preparing for a art showing this November ...it sure keeps me focused lol...Lowtide
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Old 10-26-2015, 08:37 AM #5
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Lowtide,

Thanks for your response and for sharing some of your story. I am glad it sounds like you are feeling somewhat better and enjoy doing art work. I like to draw as well. Did the doctors ever determine a reason that you developed the hydrocephalus? I gues the main thing to worry about is getting it treated but, just curious if they ever found out a cause? Right now my number one symptom is my bladder. It is driving me crazy today! I also am always so tired and do have a very hard time concentraiting on anything. I am very much looking forward to getting some help !! It just seems as if I am in a waiting game right now as my next doctor's appointments are not for a number of weeks! Are there any behavioral things or diet tips that you have found worked at all to help with your symptoms?
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Old 10-26-2015, 05:27 PM #6
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I didn't think anyone understands causes of NPH, might even revolutionize diagnosis.
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Old 10-27-2015, 05:02 AM #7
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Hello,
I'm new to the forum. I'm 44 I was diagnosed with NPH at 37. If you have just gotten the diagnosis then please get a MRI with contrast and a flow study. Most NPH is caused by a blocked or narrow aqueduct. My symptoms are pressure that builds up during the day and severe fatigue, my gait has changed and urinary frequency and urgency. I had a sleep study which said hypersomnia. I don't have a shunt and I am not on any medication. However with recent vision changes and finally getting diagnosed with hypersomnia neurosurgeon said its time to do ETV. I have had to find information on my own and most DRs don't know about it. I don't have headache or swelling of optic nerve ( that's for people with high pressure) if you have questions just ask and I'll try to help you. I don't want anyone to go years waiting on treatment like I did.



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Old 10-28-2015, 02:00 PM #8
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Glass100. Thanks. I had an MRI with contrast (Beg Oct) that showed the enlarged ventricles but I have not had a flow study. I have an appointment with a specialist with Hydrocephalus on December 17th and I also submitted a package to John's Hopkins Hydrocephalus center in hopes of getting my case reviewed there - (I have been told my case is currently under review). I am just nervous waiting. I have some other potential autoimmune symptoms - rashes, heart rate changes (POTS), etc. that I have had for 10 plus years that have me worried something related to an undiagnosed condition could be causing this but, all my blood test have been normal not showing an autoimmune diseas. I also had a Brain MRI done in 2010 that I was told was normal. So, just curious if hydrocephalus was somehow missed then and that could be the cause of all of my symptoms or if I now seem to have two issues going on, the hydrocephalus and something else. I guess time will tell but I am just very nervous waiting around. Thanks again for your comments
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Old 10-28-2015, 02:22 PM #9
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Hi Glass100,

Do you have a reference for the known causes being mostly blockage or narrowing, because that doesn't jive with what I've read. Everything I've read says most NPH is idiopathic and shunts are still the primary treatment. I know I've mainly read about NPH due to my child having low compliance and since her hydro is communicating and may be similar cause. I know infections can cause issues with absorption. As with kids, anything that can avoid someone being shunt dependent is something to consider so I do hope ETV works for you, there just aren't many options. Diamox or repeated lumbar punctures are temporary options.
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Old 11-01-2015, 10:25 PM #10
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Hello pogo
From the mayo clinic list of causes of NPH .... #1 obstruction #2 poor absorption #3 over production.
This is what I have found out
A clue that the problem is a blockage is if the lateral and third ventricles are full of fluid look for a blockage at the aqueduct.

Do not accept the idiopathic BS. I was quote idiopathic for 5 years. Mri with contrast and flow study not only showed the narrow aqueduct but a more rare condition called aqueductal web. Technically I'm partially obstructed but still communicating just not to the best ability lol kinda like a car that needs a hose replaced car runs just not great. The problem with NPH I don't get the headaches very often. what I have is just an overwhelming sensation of pressure that builds up all day and I get very sleepy. When my head hurts I go to sleep which is why they diagnosed me with hypersomnia. My gait changed but not in the way the books describe and there is no swelling of the optic nerve ( i was told mine is long and skinny) I do have sudden onset pigmentary glaucoma however, they say there is no connection ( one day I could see in any condition or print size the next everything is a blur) I keep looking things up. Like I constantly feel the need to crack my neck... Right where skull meets spine. Pain that runs along the shoulder blade (un relieved and it's not from sleeping wrong)
Anyway I didn't like the IDIOTS saying idiopathic which is a big word for I don't know.........if they had done further testing instead of the diamox and wait and see approach for 5 years I would have had a better quality of life instead of sleeping thru and being in a general fog not getting much of anything done.
Keep fighting for further testing there is different test to monitor the absorption rate if they suspect that. I agree with you shunt is not an option that sounds good to me. Too many post op revisions and problems for me.



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