The Unique Challenges of Adult Hydrocephalus
Posted by amandagarzon on August 24, 2012 · 30 Comments
By Dawn Mancuso
“The difference between children and adults is that they’re shorter – not dumber.”
― Mo Willems
Normally, I would agree with Mr. Willems. We adults tend to underestimate the intelligence of the children around us, assuming that our life experiences make us somehow smarter.
However, I’ve learned some important lessons in my nine months working here at the Hydrocephalus Association. Children are not just shorter versions of adults. And, the challenges faced by adults are not the same as those faced by our kids. I’m not talking about the general day-to-day challenges we all face, although that argument can easily be made at another time and another place.
What I am referring to is the marked differences between the cases of hydrocephalus adults typically face – especially those with adult-onset hydrocephalus – versus the cases of hydrocephalus faced by children. The impairments associated with adult hydrocephalus – such as gait disturbances, memory loss/dementia, and loss of bladder control in cases of Normal Pressure Hydrocephalus (NPH) – can be just as debilitating and disruptive to everyday living as the impairments associated with any other kind of hydrocephalus.
A complaint that the Hydrocephalus Association (HA) sometimes hears is that we focus too much on pediatric hydrocephalus, and that we don’t give enough attention to the adult forms of the condition. This perception always saddens me. We here at HA work very hard to serve anyone affected by hydrocephalus, regardless of age.
Over the years, we have developed specialized educational materials for adults, such as our two adult-focused educational books (Hydrocephalus Diagnosed in Young and Middle-Aged Adults and About Normal Pressure Hydrocephalus). We have expanded our web-based resources to include additional literature about adult-onset hydrocephalus. We offered many specialized educational tracks for adults at our recent National Conference on Hydrocephalus. Each day, our staff works with quite a few people who call because they or an adult family member has recently been diagnosed with hydrocephalus, and they didn’t know where else to turn.
As part of our ongoing commitment to adult hydrocephalus, one of our most exciting initiatives this year has been the establishment of a planning task force to develop a specialized clinical research network focusing on adult hydrocephalus. This research network, which does not yet have a formal name, will be built on the model established by our partner, the pediatric focused Hydrocephalus Clinical Research Network (HCRN) that was founded in 2006. The work of the HCRN has already started to produce findings that hold much promise for improved treatments for both children and adults.
The adult-focused clinical research network planning task force has already met in person twice this year, and meets via conference call twice a month to move the establishment of the network forward.
The Board of Directors of the Hydrocephalus Association is committed to supporting this very special effort. Staff and volunteer time and resources have been engaged in helping to keep the planning work going. I’m very excited to announce that just a few weeks ago, the Board voted to provide a grant of up to $50,000 to help advance the project and develop the resources for the research data collection effort through the use of a data coordinating center.
HA is proud to be a driving force in undertaking this effort on behalf of all those adults suffering with the challenges presented by hydrocephalus, a condition that could hit any of us at any time. We thank all of you who are so supportive of all of our efforts as we continue in our quest for better treatments and eventually a cure. We couldn’t do it without you!
Hi, I have hydrocephalus for 22 years now. 6 shunt placements so far. Many side effects of the condition have appeared in my life. I have very slow processing speed, short term and working memory loss, vertigo problems, depression, anxiety, anger problems, and more. As a result, I am now on disability from social security. I was working full-time, with benefits, until two years ago when I was fired for the third time in my career. Should have received disability through my employers insurance, if only I had known at the time of my total condition.
I would like to be a participant in adult hydrocephalus testing. Thanks for your consideration.
I am delighted to hear about the interest in adult hydrocephalus. My son is 50 and was shunted at 7 months. He tries to have a “normal” life but he continues to remind me that his world is different than mine. We are so interested in finding an adult social outlet for him in Philadelphia.
We would also be interested in participating in discussion groups for the edification of others.
Hello,
My father is 87 years old. He has dimentia. He was getting worse where he didn’t know who my youngest nieces are. He’s never done that before. He was also having problems standing and was getting many dizzy spells. My brother took him to the doctor and they decided to do a spinal tap on him. After the spinal tap he was able to stand straight up and walk without feeling dizzy. They drained 4 tubes of fluid out of him. Now the decision is wether to have the shunt put in to drain teh fluid. Like I said, he will be 87 in December. We don’t know what would be best for him and we certainly don’t want him to be uncomfortable or get worse. So we are trying to see what can or shouldn’t be done. Should we get a second opinion or should we have him go through the surgery and have them put the shunt put in?
Hello,
My name is Kyle and I greatly appreciate hearing your views in regards to both child and adult Hydrocephalus HC. From my experience with Hydrocephalus, I am what “my” doctors told me was unique in that I didn’t acquire Hydro from birth as it came on Spontaneously at the age of 12yrs old. I had no injury or accompanied illness.. As a child, I lived a normal life in that I played Soccer/Baseball and never had headaches or pressure until I cam down with hydrocephalus.
II had Hydrocephalus as a child, but now I am an Adult. I had 15 revisions from the age of 12-15 with a fixed valve along with a stroke due to a Brain Hemorrhage during surgery… All of my challenges have created in me a very humble and thankful heart towards others who suffer.
To you message above, here is a little about my story and I am curious how the HA can support people in my situation. I lived a normal life and spent 20yrs in the Sales Field. I last worked for Sprint/Nextel as a Corporate Sales/Service Coach when I had my last 2 revisions fall 2010. Because of the problems I had during surgery when i was a kid, my memory was impacted, but I never let that stop me… but after the bleed in 2010 my working memory has declined so much along with my balance and daily headaches that I am no longer able to work at a Job… ( i would find my self forgetting what I was supposed to do at times). I am finding many physicians wouldn’t rather take on cases like mine because they feel the shunt is the solution to my problem, but then they will see me again a couple of years later. They like to succeed and one Doctor told me that “I was his worst nightmare”. So what types of improved shunt technology are the doctors receiving information about and do you have any improved stats on the success of these new shunts that will help build their confidence that “If they placed one in me, they won’t see me again for a long time”… I hope this message reaches you and makes sense… thank you for your time
Kyle
What about the Headaches?
I am fairly new to Hydro about 4.5 years now the whole time I have lived with Headaches and had numerous doctors tell me its not Hydro related, however the number 1 complaint I hear on all the web sites dedicated to hydro is headaches. Is the Neuro community doing something about this issue?
I have a partner with hydrocephalus and I have a difficult time getting up to date research. In fact, on this website, a search in the resources on NPH brought up hundreds of articles but MOST of them are 5 years and older. I found some that were over 10 years old. How relevant can they be?
Please refresh your resources for Adult Hydrocephalus. Thank you.
my family history is interesting to say the least. my Great Uncle on my mom’s side of the family . Her mom’s Brother. Developed NPH when he was in his 80′s . I Contracted hydrocephalus when I was 6 weeks Old in 1981 .
I was wondering if there is a support group for adults who were born with
hydrocephalus? I was shunted at 4 months old with a VP shunt and
my first revision was @ 5 years old to an LP shunt. I lived a pretty normal
childhood with no problems until I was 12 years old. I had problems
from age 12 – 17, but am now 37 and have been asymptomatic for the
last 20 years.
I still have an LP Shunt in place, and never know when a problem might
arrise, but I am able to live and function on my own and feel lucky to be
able to say that.
Would be nice to share medical experiences and insights about living with this
condition from childhood to adulthood as I have.
i was diganosed with Hydrocephalus at birth.that was in may of 1976.ive had a couple of shunt replacements and yeah it makes me feel different from other people but i know im just as normal like everyone else so for those who hear bad things about this condition Dont Let it bother u. Keep Your Head Up because u are normal just like everyone is,ive been there to and i learned a long time ago not to let things get to me.
The best way to get access to recent research on adult (or any type) of hydrocephalus is to look it up on PubMed. This is a product of the National Institutes of Health (NIH). Abstracts of research articles are free, and some of the full text articles are free. Other full text articles can be bought from the publishers.
In addition, it pays to look at the type of research that is going on by checking out http://www.clinicaltrials.gov, which is also managed by NIH. I was able to find a neurosurgeon who understands the fluid dynamics of shunts. He was able to determine that my shunt was running too fast, which was causing my severe headaches, and implanted an add-on anti-siphon device near my clavicle and along the line of the descending catheter. It has been over a month, and the shunt headaches are gone!
My former neurosurgeon was of the belief that if a shunt flowed and wasn’t block, it was working. He had implanted this black box that could be adjusted with a magnet, and the settings always indicated how quickly the extra fluid was shunted (according to his understanding). He is prepared to handle routine matters relating to hydrocephalus, but not complicated cases like mine. No one tells you this; you have to seek the knowledge out yourself.
HA provides some very basic information about hydrocephalus, but you really have to look further and educate yourself about many of the details. This is especially true if you run into problems like mine that the typical neurosurgeon doesn’t understand. If HA really wants to provide a service, it would be to provide periodic digests of scholarly articles on advances in hydrocephalus research. $50k doesn’t buy a lot of research, but it could pay the salary of a recent graduate with a neurosciences degree (or even a couple of graduate students) to put together such digests in terms that most people would understand.
I was shunted as an infant and have been blessed to have had very few problems in my thirty five years of life. However, now I am trying to have a child and am somewhat concerned about any, if, at all, issues I could face with pregnancy and any effects on my unborn child. I have found very little researh on the topic.
I was born with Hydrocephalus, whitch was causedby having a disorder known as NF1. Due to one or the other disorder (or most likly the combination of both I also developed a seizure disorder. Altho I was never told anything about any of the above as a kid. I knew I had some of the indications of the NF1, because my dad had it.
I lost my dad to cancer when I was 12 and my mom at the time became a full blown alcholic I lost her shortly before I turned 18. I had two younger brothers that didn’t have any of the medical issues I did.
I finally found out about everything all at one sitting after going through some tests. I was 21 at that time. Then I had the first of 18+ surgeries in about 24 months to get the Hydrocephlus under controll. I am now almost 55, and just by chance happened across this web site.So I hope I can find out some things I don’t know & may-be help others know you can keep going & enjoy life as best as possable.
I would love to see more about adult onset hydrocephalus. I myself was diagnosed at the age of 27 and have found it difficult to find information on the condition when it is diagnosed in adulthood. I also have trouble finding info about the type of surgery they used to treat my hydro. It would be great to see more about ETV or Endoscopic Third Ventricularostomy as a treatment and resources for neurologists who can treat adults with hydro. Sadly none of the neurologists I have seen have had much experience with it.
To Eme: Please get a second opinion, including whether his overall health will allow this surgery. Diagnosed at age 54, shunting worked a miracle for me. But it involved having a hole drilled in my skull, a metal probe inserted into my brain, a small pump outside my skull but under the skin, plastic tube running behind my ear, over my shoulder & down to drain in my abdomen, with a second incision ~ 2 1/2″ in my abdomen to position the tubing. It isn’t worth doing if this major surgery will kill him faster than the disease itself.
Received a VP shunt four years ago,. Required a few pressure-setting adjustments in the
first year or two. Seems OK now, but I do worry about failure rates and the possiblity of brain infection due to the pathway from the abdomen to the lateral ventricle in the brain. Other problem is positional sensitivity…if I sleep wholly horizontally, I often wake up hung-over. I also dislike the obvious mound on my forehead. Still, happy to be alive, with memory, gait and incontinance problems cured. Research leading to improvements is always welcomed.
Diagnosed at age 54, shunting worked a miracle for me. But then after 2-3 years, I suffered a slow decine; finally was placed on Sinemet at age 60 with good results. Both the NPH & Parkinson’s Spectrum diagnosis were fairly classic, & the treatments proved the diagnoses correct. I understand that this the exact reverse of some patients with NPH. I wonder if a Sinemet trial would be worth doing for patients with imporve & then decline after shunting, especially those not misdiagnosed with Parkinson’s before the NPH diagnosis. The before-&-after scenarios might even be different diseases within the Parkinson’s Spectrum.
I’m pleased to see the Hydrocephalus Association develop more attention to the concerns of adult-onset hydrocephalus patients. My hydrocephalus wasn’t discovered until age 41 and if it wasn’t for the efforts of the Hydrocephalus Association, I probably wouldn’t have been as informed about the condition. They didn’t tell me a whole lot before surgery, except that I need the shunt operation. While the Hydrocephalus Association gave me all the information I needed at that time, I’m now getting frustrated, because I don’t get much information about what might or might not happen in the future. And doctors up here in Northeastern Ontario Canada know very little about hydrocephalus, although I know of at least two other people with it right here in this town of 12,000. If I had one suggestion for your association, it would be that you further develop information packages for adult-onset hydrocephalus and tell us what we may or may not experience in the future. Thanks for this opportunity to express myself.
As an adult diagnosed at age 32 with hydrocephalus, I initially had a shunt surgery. After numerous shunt revisions and constant infections, my neurosurgeon decided to remove all the ‘hardware’. Instead, he did an endoscopic third ventriculostomy (they puncture a whole in my ventricle). The pressure in my brain keeps the CSF flowing. An alternative that has worked for me.
At age 46 I was dignosed with Hydrocephalus Communication. The nero surgeon added a shunt. The shunt appears to be working. Three years later I have taken a turn for the worse. Permant brain damage is dignosed. The physcians did a spinal tap and proved the shunt is functioning. spinal tap was done in December 2011. However, there is great evidence of permant brain damage going on. The side effects have caused a great change in life style. I can not retain more then 30 to 40 words. Processing information is diffcult. Slowly my vocabulary words are being forgotten. Every day tasks are too much. It was only a year ago I could teach students. My hands and feet are turning inward. I have gait and no longer can visually retain information, diffcult with memory. The physcians are trying to discover and figure out what is happening. I have been deteraiting very fast. I do not want to detrait further and I am willing to try a new avenue. I need assistance from physcians how may be able to help me before it is too late. I am now only 49 years old.
Mary I have some marvellous material written by a mother with hydro who had 2 normal chlldren as did several people on HYCEPH-L . send me your e-mail.
Eme
The father of my friend had a shunt put in with good results at an advanced age. the results you describe sound as if it will help. But there are a small percent who die on the table so you need a good medical opinion. Gilda Katz
I found the reference to the woman who was concerned about pregnancy. Google Nancy Bradley pregnancy and hydrocephalus. There are also references on our Ontario hydro site. Just googling hydrocephalus and pregnancy will bring you lots of articles. Pls let me know if you find them useful. I gave you some other sources in a previous posted comment Peace and good luck. Just remember to check it out with your neurosurgeon for your particular case. Gilda Katz
Our son suffers from low pressure hydrocephalus he developed from a closed head injury he endured in 1985. His hydrocephalus was under control with revisions between the ages of 12 and 37. While away from home visiting family down south, he became ill and needed a revision. Worst mistake I ever made entrusting him to a neurosurgeon away from home. He walked into a hospital with double vision 2010 which was the start of our trip through hell. External draining for months, feeding tube, seizure medications, respirator; everyday I went in to see him I had the thought in the back of my head “would hedie this day?” After being bounced around to two different hospitals and a SNF he was stabilized, and was able to be flown home to the hospital where he had been treated for 20 years, only to have them puncture his abdomen with his feeding tube thus developing peritonitis which resulted in pulling the correct shunt that was finally placed after over a year of infections and set backs. We spent years in the ICU, then shipped out to a SNF another challenge. November 2011 we brought him home and continue to receive therapy and personal care assistance. If there is a support group for adults with low pressure hydrocephalus I would be appreciative to have somewhere to turn for guidance.
Hilary, thank you for your comment. In fact, we have one of the largest databases of articles from both the medical community and patient community in our Resource Library. I would encourage everyone to not only follow Hilary’s advice and always always do your research but to also access our Resource Library for a wealth of articles you might not have known exist. And if you ever find an interesting article that you feel would be helpful to others, please email us the information at info@hydroassoc.org so we can add it to our Resource Library for all to see. Thanks!
I am a 65yr old young lady. 1 year ago I had a shunt put in at the Mayo Clinic in Jkvl, FL. All symptoms went away and I have not had any problems to date. They are fantastic and were very careful to get the diagnosis correct. Dr. Wharren was the ultimate surgeon. There are way too many misdiagnosed cases of NPH in adults. I feel very lucky to have had an “On the ball” primary physician who saw a change in my gait and noticed the fact that I had to write down all my notes to talk to her about before that visit. That surgery was in the hospital 1day and out the next. Would love to participate in any NPH studies to help others.
I am a 57 year old woman, diagnosed many years ago with hydrocephalus, shunted two months ago. For years I suffered with headaches, and was always falling and clumsy but about a few years ago things started to change. I could not find words, I could not remember anything recent. I could not understand what people said to me at times. I was very frightened and rationalized that this was due to the stressors of life, etc., but as time went on, and I began to fade away, I knew I was in trouble. I had been an educated woman, with a high IQ. I was no longer that person and I knew that. I had dementia. My middle daughter also saw my decline. She urged me to get help. I went to my neurosurgeon, Dr. Harold Rekate, who said “you need to be shunted but I will give you years of cognition back “. Well that he did. My brain is so clear. I understand everything again. I have a new grandchild to love. Life is good. The moral of my story is listen to your body. Thank you Dr. Rekate for my life back
LIke many other wirters to this site, I am extremely interested and effected by any new or meaningful reserach into Adult Hydrocephalus developing from an initial dx. of ventricular stenosis. I have been to neuroligists and neuro surgeons in Phila and at Hopkins in Balto. Plesase do not simply tell me to get a shunt. I am awaiting (hopefully) some improved outcomes following (one-time) Endoscopic Third Ventriculiostomy surgery. Can anyone who has undergone this surgery give me a REALISTIC outcome descriptioni? Thank you.
My Mom is 75 years old and has had a shunt in place for 7 years. This week she is suddenly having trouble staying awake and her ability to walk and lift her feet up has severely declined. Incontinance is also up. Her neurologist is on vacation until mid January. They saw her primary care physician today. I would think this needs quick medical attention or an MRI to measure the fluid pressure and to check for shunt malfunction. My Mom and Dad live in a small town. Any ideas on how to handle this?
It sounds like your gut feeling is correct. Whenever one sees symptoms that are in line with a shunt malfunction or failure, they should see their neurologist/neurosurgeon. In this case, since her neurologist is out on vacation, you should call the office and ask who is monitoring his or her patients in the absence and call that individual. The other option is to find another neurologist, potentially at the closest large medical facility, and call them or, if the symptoms worsen, take her to the facility (ER).
Yes, we need more information on research on “adult hydrocephalus.” But this is two separate groups…long standing overt ventriculomegaly (SHYMA) and Normal Pressure Hydrocephalus…two very different diagnosises. And what about genetic studying for we Mom’s willing to donate our blood to find out if our bodies absorb folic acid… MTHFR. C677t. Maybe we can stop this before it starts in our embryos. I will be the first to volunteer! Who wants the study and who will fund it… How about the HA funding it?! Their is already a prescription out there to add the super food we need.