A place where adults suffering with Hydrocephalus can
discuss topics related to this condition.
new treatment
by Jamie
My husband has hydrocephalus. I had to take him to the hospital about 4 months ago and he had a shunt put in. The doctor told us that that was the only treatment available to him. Before he was diagnosed with this and received the shunt he could do almost anything, but now he is very imited on what he can do. He can not go outside for 30 minutes without having to come back inside and rest. I say all of this because I am concerned that the shunt is not the best way to treat this. There has got to be a better way to go about this. With all of the technology that we have there should be an alternative way. He hasn't even had it for half a year and he is already having comlications and seizures. He still has headaches, nausea, vomitting, light headedness and many more of the symptoms that he had before the shunt. Please let me know if there are any other treatments available, We are willing to try almost anything.
Wow, I'm sorry to hear your husband is having these problems. You didn't mention his age, or any other ailments, or type of hydro. It may be that he needs his pressure adjusted, which can be done in the office with a magnet. The same symptoms that help diagnose the hydro are similar to the ones which would suggest that the shunt is not working, or the pressure is too high or too low. Sometimes the weather changes affect the shunt. I don't know of shortness of breath....does the distal end of the shunt go into the heart by chance? Best to get it checked out.
Unfortunately, I don't think anyone can say if he's having any fixable problems with his shunt without a workup, then there may not be a concrete answer either.
Some people just seem to have more difficulty with their shunts than others. He should be getting this checked out, and if you aren't satisfied with the answers you're getting, seek more help. The hydrocephalus association has a website, and they have a very informative book also. You can find out about it at the website, I believe.
As far as alternative solutions other than shunt, depends on a lot of different factors such as...type of hydro, pressure, and symptoms. Lizard and others who have much more knowledge of shunts will tell you more.
I don't know of anyone only on medicine for their hydro, but I think they treat with steroids and diuretics when they do.
Someone else will be able to tell you more. Good luck!
I echo Susan. A lot depends on the things she mentioned. Shunts often do have problems, but it's also possible that he just needs an adjustment or has a faulty valve. It's not uncommon to need revision surgery after a few years, or even sooner, but everything should be done to see if it's really necessary.
If he has a programmable shunt, he may just need a pressure adjustment, as Susan said. Programmable shunts have lots more issues than patients and families are being led to believe. Many simple things can change the pressure setting. He may also have had the wrong pressure setting to start with. In any case, he should go back to the doctor and get checked out, and the sooner, the better.
Lizard...I have to say, 99 percent of what I know about shunts has been from you and others on this site. It's really been invaluable to me, and knowing you guys are here when I do have questions, or to learn more, or just say hi, means a lot!
I am so sorry to hear of the trouble your husband is having with his shunt. There is an alternative to shunt - and it is called an Endoscopic Third Ventriculostomy (ETV). The surgeon perferates the bottom of the third ventricle allowing the cerebal spinal fluid to drain. One issue with ETVs is that eventually the opening will close and you need another surery to reopen it. I have had 2 shunts that failed immediately upon insertion and I was on my way to life as a vegetable. I have had 2 ETVs with no problems with either other than the "redo" issue. I had the second 7 years after the first. The other issues with ETVs are not every patient is a good candidate and not all surgeons are qualified to perform the procedure. Good luck with whatever you choose - I noticed you had some good advice about the different types of shunts and their settings - and an ETV is another option.
ETV's are one option, but it does not work for everybody. I had one done, and they clamped my shunt off and a week later had to unclamp it. I think ETV's work good in children and those with Normal Pressure Hydrocephalus.
I have a codman adjustable shunt with an anti-syphen devise because I over drain and the anti-syphen devise helps slow down the drainage.
I had my first shunt put in when I was 4 months old in 1974 and now I'm 35. I've lost count of revisions I've had. My last revision was on April 15 of this year. I've gone for 5 years with out a revision and as short as one month. There's really no deffinitve time table for a shunt. I know someone who had a lumbar shunt put in when she was 16 and is now 35 and has had no problems with it. I know people who have grown out of it.
I hope your husband gets better soon. I'm sorry for what you guys are going through. I hope you find answers. I know it's frusterating for you and especially for him. Hold on to hope. That's what I try to do; although it gets hard sometimes; especially in the middle of a crisis.
It needs to be said here that the criteria for ETV candidacy is quite strict. We don't know what the cause of the hydro is from Jamie's post. Even of those who fit the criteria, ETV only works long-term for a certain percentage, and you admitted yourself that you've had a "re-do." IMHO, from what I'm seeing, there's no real evidence that ETV is any more effective than shunting.
I aboslutely agree that ETV's aren't for everyone. But after reading the sturm and dang about problems with shuts, I only suggested that an ETV - when one is a candidate - is another option. I knew going in the the procedure had a shelf life but since shunts also have their problems, I am glad that the option was available to me. Of course, I might never move from the Hopkins area, but that's another matter.
Hello!
I might be totally over reacting but I had a REALLY deep tissue massage done on my neck 5 days ago and now my shunt is bothering me . Do you think that something could be wrong?
All of us have to be very careful with this, especially if you have an older shunt. Anytime you decide to schedule something like this, MAKE SURE to tell the massage therapist/chiro BEFORE the appt, and if they don't INSIST on x-rays to see where your shunt is so they can avoid it, RUN!!!!!!!!! We always hear about how durable shunts are--and they are--but certain things can cause kinking of the tubing. Better safe than sorry, especially with something designed to save your life. Please get checked right away if your symptoms persist.
I talked to Laura last night. She found out she has to retire Ripple in October. She's been having trouble with her headaches, ashma, and her sinuses.
Please pray for her about Ripple. She's torn up, as is understandable. Ripple has been her eyes. If I get up to see Laura, I will also miss Ripple. She's a sweet dog.
Joy, I am so sorry to know this about Ripple. I knew she was an older dog and was having health problems, but I can't even imagine what this is like for Laura, especially with her own health issues. Please send her hugs and love from me, and thanks for letting us know.
She had called me and I had to call her back but my phone is acting crazy. I messaged her to call me. I wonder if this is what she was needing to talk to me about? Liz...Tell her I'm thinking about her.
Ok. I have finally signed a consent form to replace my VP shunt to a programmable shunt. Just waiting on the surgical team to let me know when my surgery will be.
The way it stands now, I will have the shunt revision, then a MRI to check the Chiari. The docs feel the increase in pressure will releive the chiari, but I'll wait for a verdict when it happens.
While I'm dealing with that, I can then get my gall bladder checked and find out if I need it out or not.
Then we MAY look into surgery for the aqueduct stenosis.
I've been waiting for the list to stop growing. I hope I'm there. It hasn't helped that
a. Someone from my high school class passed away last week.
b. A family friend a few years older than me passed away last night.
On a good note, my oldest son has so far beat the odds and is sticking with his college classes. His best friend dropped out because he couldn't handle it. I'm glad he didn't take my son down with him.
Hi everyone....not on much this summmer, busy, had new puppy that died 2 weeks after we got him. He was from shelter, and a real sweetheart.
Then poison ivy (me) then I catch hubby being unfaithful.
Wow.
Got a new puppy Friday, and he is like soooo cute. Has some tremors, took to vet. You'll not believe this...possible hydro, from head size, gait. How can this be possible? I know the breeder, have seen all the pups, parents, etc. She is
Shes a hoot to play with, easy to love, but has anyone heard of this? What a coincidence that I was able to tell the vet more about hydro than she had any idea of. I'm not sure of the differences, but I'm sure they are similar in many ways. She is the runt, and does have an oddly shaped head, unsteady gait for sure, but only 8 weeks old.
Wish us luck. I'm keeping a close eye on her, of course, and hoping they're wrong. Can't be possible.
I'm not even going to try to spell it. But the little Taco Bell dogs are the most common for having hydro.
When I had to take my dog to have cataracts taken off his eyes I got to talking to the surgeon about my hydro and he was telling me of them treating dogs there for hydro. I had read about it but did not realize it would be at the hospital I was at with Pepper. But we did have to go to an animal hospital in Charlotte, nearly 3 hours from home.
The doctor also told me that they had just put a shunt in a genea pig earlier that week.
I never knew they could put shunts is animals. I thought they had to be put down. I have a Chiwawa/Jack Russel Terrier mix(the chiwawa being the taco bell part of the dog). I read about a horse that had hydro, but he had to be put down. Putting shunts in genea pigs is a real new one for me. They are so tiny.
I asked the vets about somewhere, probably Ohio State University, they would refer us if it came to that, at least for a Cat Scan to determine if this is the problem. At such a young age, and size 3 lbs, 8 weeks, it would be very risky to even try the medication (probably a mild diuretic) before even considering a shunt.
I don't think I would take this route, especially when I know what this would be like, and getting revisions as she grows, etc. We just watch her, and love her, and hope for the best.
Thanks, this is the first time I had heard of it, but I don't know why an animal couldn't have this condition as well as humans.
Susan,
It's weird to me that I had to take our 9 week old Chihuahua (taco bell dog) to the animal hospital last week. She was lifeless and the vet saw neurological damage. Hydro was brought up but lucky for me my Chewy rebounded after getting anti biotics, so they assumed it was a toxin that caused her problems. We are still keeping a good eye on her, but so far, so good.
Lora,
The first puppy we lost (last month) became ill and lifeless like overnight. Docs thought it was toxin, I felt horrible like I had missed something and he'd gotten into it, as careful as I was. Turned out, the lab tests came back okay, but pup had congestive heart failure. Put it down the next day...went into pulmonary edema.
THIS puppy acts fine, most of the time. Gets a little irritable, out of control irritable, can't be made submissive like most dogs, or is asleep. Clumsy, like me, altered gait, big head. When she is lovey dovey, she's a little angel. 3 vets say it's hydro.
Maybe God is telling me not to add any more puppies (puggles) to the family for awhile.
Susan,
I'm a dog lover. ALL dogs. All breeds. I currently own 4 Peekingese besides the newest addition of the Taco Bell Dog. I've been breeding Peeks for 6 years now and can relate to losing such a small puppy since I've lost two newborns over the course of my time. It's heartbreaking, and the guilt of wondering if there is something I might have done, or not done, differently would have changed things. It's hard to accept the fact that there are times we have no control over the outcome of a situation, no matter how much we want a different ending.
It does sound to me like your puppy definately has hydro symptoms. Of course, as you know, that can only be confirmed by an MRI. It's hard to decide what is best in this situation, I'm sure.
Good luck.
my husband had a slow bleeding sub dural hematoma drained 5 years ago . He is having signs and symptoms similar to what he experienced in the past he is seeing his dr. in 2 days. i am out of town and am very concerned and called his Dr who got him in asap.what is the rate of reoccurance? he is 71 yrs old and pushes himself very hard he often hits his head....HELP
...can possibly result in subdural hematoma recurrence. If he rushes and falls a lot, he'll need to slow down and take his time, and it might be a good idea to have someone with him if you can't be.
Can a minor car crash from probably the early 1990's START a SH, I honestly do not know when I could have gotten it, and it progressed to a large chronic suibdural hematoma from then to early summer 1999. Just wondering.
Fender bender, enough to have my grandma's car front bumper fixed. It was a little bad. That's when my dad in all this everknowing knowledge said we (my mom, sisters, and me) should go to a chiro. (He obviously didn't know any better.)
It became very infected shortly afterward and was removed, also the tube placed in tummy.
With this infection I was in hospial three weeks, and one week nursing home. [2003]
I think it has come back again and have been readin up on the CODMAN HAkIM VALVE. I HAVE HAD A BRAIN XRAY and am set to see a Neuroscience Dr. on Sept. 03/09/ After walking about a block, my steps become shorter and shorter, with feet more or less sliding. I have fallen twice -without
a cane/walker. I am being more careful when going ouside ==I fell mid day heat wave Sunday onto grass /forgot cell phone, could not get up no matter what I tried. Finally yelling for HELP did the trick.
Liz,
While I would normally agree with you on this point, I have to now disagree. I had two neurosurgeons NOT be able to diagnose me but two neurologists DID.
What I am finding out this round is that hospitals ARE trying to get a handle on brain issues. It seems to have become common practice that you are diagnosed by a neurologist first. Neurosurgeons only want to enter the picture AFTER the diagnosis is made. They do not want to take time away from surgery to diagnose IF a surgery is needed.
I was on the same band wagon that noone knows about hydro except a surgeon, when the surgeon is focused on the surgery itself, not the reason for the surgery. Neurologist are pain management doctors. They are taught to try to diagnose what is causing pain, or headaches, not just to treat with pain medicine. They are the ones who have to learn how to read scans, and make the diagnosis for the surgical team.
I've been dealing with issues for almost 10 years, and have had the opportunity to be told there is a solution for me. I've been waiting since May for this solution and rapidly declining. I have days I do not want to get out of the bed, but have to since I have 4 children.
The doctors do not see how much these symptoms effect our lives. It is important for you to explain what you can't do as well as what you can. Do not be like me. Do not allow them to tell you that your symptoms are caused by something else. If you know you have hydro, and believe you are having hydro issues, you are probably right. Trust yourself and make the doctors listen.
From everything I have learned in my life, personally and from others, you were VERY fortunate that your neuro was on it. I could give REAMS of stories from people who went to neuros who completely blew off cysts, tumors, Chiari, etc. because they're utterly clueless about malformations and foreign growths in the brain and how they impact on quality of life, well-being, and overall health. I think patients still need to be prepared to demand to be seen by a nsg and not allow migraine scripts to be thrown at them as they're tossed out the door.
The debate as to the realtive worth of neuologists vs neurosurgeons can be quite prickly but I am tilting to Lora's rationale. I have had one miserable neurosurgeon - both surgical skills and patient manner - who did the one stop shopping approach and I have had wonderful experiences with a disciplinary team of a neurologist and neurogsurgeon. The neurologist was the gatekeeper and an integral part of the post surgical process. And, thanks be to God, the surgeon knew what he was doing. So, I would suggest that a person never automatically dismiss a neurologist but carefully look at the environment in which he/she operates and if it is part of a surgical team before making decsions/judgements.
I will never, ever, ever see a neurologist again. They don't have the first clue about Hydro and cannot operate. I went to one last year for jerking and he put me on cogetin that could have ended up with deadly consequences had an astute and concerned neighbor not called my parents.
One put me on Tegertal in 2000 and that just made me sleep all the time and did not help at all with headaches. If anything, it made them worse.
So I have sworn them off. All they do is push drugs to shut a person up and not listen so they can pick on a potentially life threatening reaction. The item that was makeing me jerk was Cymbalta. My primary care doctor scaled me back to 20 from 30 mgs and I still jerked. So he swithced me to Prozac.
my symptoms of diagnosed over drainage..... maybe help for others
by
I've seen alot of questions over the years about how you can tell if a shunt is under or over draining. Since I just found out my shunt has been over draining for at least 8 years, I'm hoping some of my symptoms might help someone else consider if they are over draining.
One of the biggest feelings I have that I know is a major difference is the way my head feels inside. I've felt some "weirdness" over the years, but can best describe it in it's current state. I "feel" like my head is total "air". I'm light-headed and dizzy all the time now, which makes my balance hard to keep up with, but I'm used to it and have the ability to "watch" my steps.
I do urinate alot, probably from the extra drainage going to my bladder, and do not always make it to the toilet in time. (I have 98% control instead of 100%)
If I can help anyone else who has some of these symptoms, I'm here.
RE: I came home on 8/8 from an all summer nightmare....
by
Just think... on 5/29 I had surgery for a valve revision, and was discharged on 5/30. A month later, on 6/30, I was back in the hospital, after being back at work for 1 week, and the surgeon found enlarged ventricles. I was to be operated on, stayed in the ICU, and was released on 7/9, one day after the surgery, again. I saw my NSG on 7/21, who did a shunt tap, and discovered that there were "microbes" in my CSF equivalent to having meningitis. I was again hospitalized, operated on, both in the "coiled belly" and then in the head several times to remove the shunt, try to place a VT catheter,(which failed on its own) and put back a working VP shunt on the other side of my brain. Four procedures in all, along with antibiotic treatment, drainage of the bad CSF fluid, and pain meds when needed. This is my first time upstairs on the "net" writing to all my friends about this horrific experience. I go back to work in a month and see the surgeon a couple weeks later.
Glad your home. I'm sorry to hear of your complications. A few years ago I had incessant shunt failures. It was once a month. Then I had a huge, infected pseudo thiest, and had to go through being externalized, on 3 types of IV anti-biotics a day, and then converted to a VA shunt. The infection was probably caused by my gall bladder being removed. My last revision was April 15. It seems to have worked. I hope yours has. I hope your troubles are over.
I was given another diagnosis on top of the hydro and chiari. I was told that I probably have aqueduct stenosis. Guess they just can't decide what I have and what I don't.
I see the neurosurgeon Sept 3 to set up our solutions.
...is the most common cause of congenital hydro, accounting for about 3/4 of them. I have it, too. It just means the tiny pathway between the 3rd and 4th vents is constricted or blocked, restricting CSF flow.
Liz,
This neurologist was REALLY knowledgable about the head. He did explain to me what this was, I'm just looking at the fact that I've complained of issues all my life and besides the hydro being diagnosed in 1991 the docs told me all my other symptoms were all "in my head".
Now here I am at age 42 getting all kinds of diagnosis. The hydro I knew about but it's been explained to me alot better recently, then there was the chairi malformation which they thought could be from the over drainage and could be from birth. Then to find out about the gall bladder disease, and now this newest diagnosis.
I have finally gotten over the fact that I was misdiagnosed all these years. The neurologist I saw explained that there are not that many doctors who can read the scans correctly to diagnose this. That statement helped me get over my rage at the medical community in my small town area.
I was just putting the info out there so that others may not have to go through this long process that I've had to go through. It's crazy to not be able to hear, see, or stand but be told there is nothing wrong with me.
My hydro is related to a stdnosis, too. And as to your doctors and "all in your head", well figurateively and literally that is true. Figuratively because that's what you said all alsong and literally because now you know that is true. Glad to see that you can see the irony because I might still be seeing red. Good luck with your new providers.
I knew she was an older dog and was having health problems, but I can't even imagine what this is like for Laura, especially with her own health issues.