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!

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

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!

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

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?

I didn't think anyone understands causes of NPH, might even revolutionize diagnosis.

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.



Sent from my iPad using Tapatalk

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 :)

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.

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.



Sent from my iPad using Tapatalk

Hey kitkat and Glass,
Don't you just love the medical profession, instead of making a direct answer of 'we don't know' they give it a label of "idiopathic in nature". For many, many years I was told it was all idiopathic or I was imagining it, I was a hypochondriac. Then 20 years on and I'm driving down the road and the lights went out, couldn't see. Had a scan and the doctors come out all surprised, like "ohh look what we found" There had been signs, there had been symptoms. They called them all idiopathic. It is BS, don't accept idiopathic as an answer.
Post op I saw a naturopath who told me that he may have been able to help, so I implore you to investigate. If you think things are not right, then ask the questions, follow through with all the advice. You are the one dealing with it, no one else. Do not be allowing them to minimise you. Investigate every option open to you because, you never know, someone might have an alternative option.

Merl1n

Merl1N - thanks for your comments and encouragement. I actually got called today and the hydrocephalus specialist that I was supposed to go see on the 17th of December can now see me tomorrow. I am hopeful I get some answers and some additional studies ordered to figure out what is going on with my head. Thanks all again for your thoughts. I will let you know how tomorrow goes!

I saw the specialist and she doesn't think I have hydrocephalus. I guess the shape of my ventricles is not what you would traditionally see with somene with hydrocephalus and she think my symptoms are not specific to the disease. However, she is not sure what would be causing them. Her guess is I have some sort of genetic mutation that is making me tired and more prone to fatigue, bladder infections, heart rate issues, etc. She mentioned if I wanted she could do a flow study but I would need to first do another MRI because it looks like my cerebral aqueduct is very thin or potentially even closed. I guess the flow study will not work if that is the case? It concerns me that mine might be closed but the specialist seemed to think that would just mean that by brain has developed another way to move the fluid...She mentioned also with many people who have hydrocephalus their aqueducts are wide, so that was another reason she was not leaning towards a hydrocephalus diagnosis.

Hey Kitkat,
Hydrocephalus can have a number of causes and effects from stenosis of the aqueduct (narrowing of the aqueduct) all the way thru to a blood clot causing a blockage. Some causes can be congenital or prior to birth, some can be due to trauma. There is also a condition where it can be due to a lack of reabsorption of CFS within the brain. Depending on the cause will depend on your symptoms. I would have to agree with your specialist regarding the closed aqueduct and the brain developing another route to move the fluid. I say this because your brain produces around 1 pint (600ml) of CSF(Cerebral Spinal Fluid) daily. If that fluid cannot get out, eventually it can lead to a coma (worse case scenario) as there is only so much room within the skull. There must be a balance of CSF, blood and brain matter within the skull for everything to work in harmony. One thing out of balance can cause symptoms.
I have a growth within the 3rd ventricle, blocking the aqueduct. At first they did a CAT scan, which did not define the growth very well and they thought that the hydro may just have been caused by a simple blood clot. But upon completing an MRI with contrast dye it was found to be a bit more than a blood clot as the growth was more defined. I was told that depending on the location of the start of the growth would depend on the symptoms, which have been numerous over the years, many like yours ie fatigue, bladder infections, heart rate issues, etc
Personally, I'd be getting a flow study(and any other tests suggested) done. The more information you and your medical team have, the better and more defined your diagnosis will be. From there an appropriate treatment plan can be made if it is deemed necessary.

Good luck with it all and I hope you can get a bit more clarity from the drs. Keep us updated.

Merl1n

Hello kitkat
First let me say you should read up on aqueduct stenosis. Narrow or blocked aqueducts can cause hydrocephalus. Second not all neurologists know about hydrocephalus even specialists. Hopefully your Dr is knowledgeable. The new MRI with contrast and flow study will not only show blockage or narrowing but it will also show how your fluid is flowing. I'll look but I have not read anything anywhere about people with hydrocephalus having a wide aqueduct. Everything written says narrow or blockage causes hydrocephalus I strongly suggest that you do more reading and contact the hydrocephalus association for more information.



Sent from my iPad using Tapatalk

Thank you all for your responses. I will continue to push foward a bit and get a second opinion and likely get the MRI completed. The Neurologist just seemed very convinced that I did not have hydrocephalus and I actually went to see her out of state because hydrocephalus is her specialty. (She worked at the John's Hopkins Hydrocephalus center in the past then moved off to another local hospital) I was confussed too though by the aquaduct narrowing or potential closure with no concern other than, "if you want to make yourself feel better you can get a follow up MRI to check the narrowing on you aqueduct but that will really just tell you if the passage is open and if it isn't open that just means we cannot do a flow study becaused the fluid isnt moving through that passage. " Again she said my ventricles were on the large side but I guess there didn't appear to be any pressure in them becaused of their normal shape...so not sure. I submitted paper work to get an appointment actually at John's Hopkins...I got a message today with a number to call to schedule an appointment so I will do that...

Hi kitkat33
I have aqueductal web and stenosis with NPH. Which means my aqueduct is narrow and I have a web of some kind partially blocking the opening of the aqueduct my CSF pressure is a high normal. 3 out of the 4 ventricles are full of fluid. The contrast MRI showed the web and the narrow aqueduct and the flow study showed that the fluid was being squeezed thru at a high rate. A base line MRI didn't show all that as well as a 8 mm lesion that was missed the dye lit it up (they said its nothing to worry about). I'm glad you are getting a second opinion. It sounded to me like everything she said was the opposite of the information for diagnosing hydrocephalus (didn't want to scare you lol) I hope you did some further reading about narrow or blocked aqueducts and hydrocephalus just so you know how wrong the information she gave you was. Good luck


Sent from my iPad using Tapatalk