Hydrocephalus - Request for advice or recommendations

[aja8888]

My only son-in-law (39 years old ) contracted Hydrocephalus about two years ago. He has had treatment by several neurologists and had three (so far) shunts put in his head to drain the fluids that accumulate in his brain cavity. So far, not one procedure has resulted in success and he has been on and off work several months each time the a new shunt has been installed.

Right now, he is home and not doing well since the last “experiment” with another shunt. I say “experiment” as the doctors are shooting in the dark to try to solve his issue. His last surgeon basically said he can’t do anymore for him and he needs to seek another doctor. We are in Houston and with all the medical facilities, we can’t seem to find one doctor that is “expert” in dealing with this Hydrocephalus which normally is not common in a healthy adult.

If his condition is not fixed very soon, he faces getting Lewy Body Dementia and possibly something worse.

So here we are with a sick boy and no real help from anyone on what to do next. His company insurance policy is essentially an ACA plan with high deductibles and over the last two years, these kids are almost broke from paying the premiums, high deductibles, OOP expenses (plenty of them), loss of income, and medicines.

We are at a point where we are asking everyone we know if they have experience with treating an adult for this condition and/or if they have a source of a good physician(s) to help solve this problem. I am asking this great forum that is full of knowledgeable people if a member here can give us a good recommendation for either a qualified doctor who works in this area with adults or a course of action to follow.

We are willing to travel to another state for medical help if necessary.

Thank you!

 

[Jerry1]

So sorry for what you and your son and family are going through. My only advice is to get in touch with the largest medical school in your state. Here, I would go to University of Michigan. The local hospital is good and my doctor is fine, but if I have a problem that even hints of a real problem, I go to UofM.

My last resort would be to contact Mayo Clinic. There are speciality hospitals like Cleveland Clinic for hearts and Anderson for cancer, but you need something that can handle less common issues. I think that is Mayo.

Best wishes.

 

[pacergal]

So sorry your family is going through this.
Perhaps, Johns Hopkins (has a Cerebral Fluid Center) or Mayo clinic?
Don't know anything about them, though. Cousin was born with Hydrocephalus and had been treated at Mayo clinic in Chicago.

 

[Rianne]

Sorry to hear what you're going through. I agree with Mayo Clinic. They saved my younger DB life. He has a rare MPA Vasculitis, they believe the bacteria that caused this from a bug bite in a remote area in Mexico. No other specialist could figure this out and he was misdiagnosed. Also saved several other members of extended family from Parkinson's misdiagnosis, and another distant family member had a mysterious but serious stomach issue they figured out and treated . They are the best in the world, it seems for rare conditions.


Healing thoughts and intentions your way for your family and DSI.

 

[aja8888]

So sorry your family is going through this.
Perhaps, Johns Hopkins (has a Cerebral Fluid Center) or Mayo clinic?
Don't know anything about them, though. Cousin was born with Hydrocephalus and had been treated at Mayo clinic in Chicago.

Thanks for the tip on Johns Hopkins. I'll make sure DD follows that up.

 

[aja8888]

So sorry for what you and your son and family are going through. My only advice is to get in touch with the largest medical school in your state. Here, I would go to University of Michigan. The local hospital is good and my doctor is fine, but if I have a problem that even hints of a real problem, I go to UofM.

My last resort would be to contact Mayo Clinic. There are speciality hospitals like Cleveland Clinic for hearts and Anderson for cancer, but you need something that can handle less common issues. I think that is Mayo.

Best wishes.

Thanks Jerry. I never thought about the Mayo Clinic as a possibility. I think DD had inquired with the local Universities here, but not sure.

 

[aja8888]

Sorry to hear what you're going through. I agree with Mayo Clinic. They saved my younger DB life. He has a rare MPA Vasculitis, they believe the bacteria that caused this from a bug bite in a remote area in Mexico. No other specialist could figure this out and he was misdiagnosed. Also saved several other members of extended family from Parkinson's misdiagnosis, and another distant family member had a mysterious but serious stomach issue they figured out and treated . They are the best in the world, it seems for rare conditions.


Healing thoughts and intentions your way for your family and DSI.

Wow! Glad to hear your DB got saved. I guess the Mayo Clinic is a good possibility.

 

[MuirWannabe]

My nieces son who is 2 was literally just diagnosed with hydrocephalus this morning. He has multiple brain issues and the doctors are apparently not surprised this has arisen. He is at Texas Children’s and they are putting in a shunt for drainage.

I’m very sorry for your SIL situation. I hope he can find answers quickly.

 

[bbbamI]

I'm so sorry your family is going through such a difficult time.

I'm sure you've done a lot of research on the internet. Just in case you haven't seen this link, perhaps it can help....

https://www.hydroassoc.org/hydrocephalus/

 

[Silver]

As you have said, hydrocephalus is more common in children and most often it's discovered at birth. Shunts are replaced frequently in kids because they get blocked, and they outgrow them. I'm assuming your son's shunt is getting blocked which is why the replacements. Sounds like he may need a larger diameter shunt. Make sure to get the brand and sizes of the previous shunts placed. That will help the next physician.

If it were me, I'd start by contacting pediatric neurosurgeons and ask for a name (names) of adult neurosurgeons that have done adult shunts. If there is a regional pediatric hospital in your area, that's a place to start.

I'm so sorry this has happened, and although it is rare it can be managed successfully with the right professionals. For peds neurosurgeons shunts are a very common procedure. I'd start there.

 

[aja8888]

As you have said, hydrocephalus is more common in children and most often it's discovered at birth. Shunts are replaced frequently in kids because they get blocked, and they outgrow them. I'm assuming your son's shunt is getting blocked which is why the replacements. Sounds like he may need a larger diameter shunt. Make sure to get the brand and sizes of the previous shunts placed. That will help the next physician.

If it were me, I'd start by contacting pediatric neurosurgeons and ask for a name (names) of adult neurosurgeons that have done adult shunts. If there is a regional pediatric hospital in your area, that's a place to start.

I'm so sorry this has happened, and although it is rare it can be managed successfully with the right professionals. For peds neurosurgeons shunts are a very common procedure. I'd start there.

We have already gone the route of contacting pediatric neurosurgeons and had one recommend a shunt. But that did not work for very long. This is the problem: Research seems to be on the pediatric side and not for a 6' 4" healthy male with an active and physical job. Plus, getting in to see the pediatric doc's was troublesome as they only want to treat young children.

 

[aja8888]

My nieces son who is 2 was literally just diagnosed with hydrocephalus this morning. He has multiple brain issues and the doctors are apparently not surprised this has arisen. He is at Texas Children’s and they are putting in a shunt for drainage.

I’m very sorry for your SIL situation. I hope he can find answers quickly.

Thanks, and I hope the young boy gets this issue fixed at Texas Children's as they are the best around here.

 

[mystang52]

So sorry for what you, DSIL and DD are going through. Partly because of where I live, I'm a bit of a NYC snob when it comes to difficult medical conditions. I did a quick Google search and found this from Weill Cornell in NYC: Hydrocephalus | Weill Cornell Brain and Spine Center


Mayo and Johns Hopkins have great reputations. So does Weill Cornell.



I wish you the best as your family makes this important decision. Hopefully one if these great institutions can find the right cure.

 

[aja8888]

So sorry for what you, DSIL and DD are going through. Partly because of where I live, I'm a bit of a NYC snob when it comes to difficult medical conditions. I did a quick Google search and found this from Weill Cornell in NYC: Hydrocephalus | Weill Cornell Brain and Spine Center


Mayo and Johns Hopkins have great reputations. So does Weill Cornell.



I wish you the best as your family makes this important decision. Hopefully one if these great institutions can find the right cure.

Thanks, I passed along the info to my DD.

 

[MRG]

Very sorry for the situation.

I used to frequently travel to Rochester, MN. for business. I was always amazed by the number of people who came there from all over the world for treatment at the Mayo. It was a bit unusual to see all the people in the community who had rooms for long term rentals.

Best wishes.

 

[Bamaman]

There are many places in the U.S. that could address the issue. However, Houston's medical community is absolutely first class and second to none in many areas. Has the SIL been to the absolutely best neurosurgeon group in Houston?

In our part of the South, Vanderbilt is the place to go--especially for Parkinson's. They have a neurosurgeon that has done over 1000 cranial surgeries. He's the one that installed electrodes into a professional banjo player's head, and when he started picking like mad, the musician said "you hit the spot, Doc."

You didn't mention if the SIL had applied for Social Security Disability. If not, he should. Medicare starts 2 years after the disability date, and a supplement can be purchased much cheaper than the ACA.

 

[aja8888]

There are many places in the U.S. that could address the issue. However, Houston's medical community is absolutely first class and second to none in many areas. Has the SIL been to the absolutely best neurosurgeon group in Houston?

In our part of the South, Vanderbilt is the place to go--especially for Parkinson's. They have a neurosurgeon that has done over 1000 cranial surgeries. He's the one that installed electrodes into a professional banjo player's head, and when he started picking like mad, the musician said "you hit the spot, Doc."

You didn't mention if the SIL had applied for Social Security Disability. If not, he should. Medicare starts 2 years after the disability date, and a supplement can be purchased much cheaper than the ACA.

Yes, we have exhausted the Houston medical community for help going forward. Like I mentioned a few times, it seems that this ailment occurs mostly with young children and the specialists in the area focus on their treatment.

SSD is next to apply for but the young man wants to keep his job and continue to work. He's on short term disability insurance from his employer right now and NOT disabled enough to apply for SSD (which he does not wish to do).

 

[nwsteve]

My DW had hydrocephalus most likely as the result of meningitis probably contacted from a stay at a girls scout camp in her youth (10-11). Was not diagnosed at the time as her family was not big on docs. When we return from an assignment in Hong Kong, part of the reentry process was comprehensive physicals. She had lost hearing on one side she thought due to walking on sidewalk next to a pile driver. Turns out It was her undiagnosed hydrocephalus acting up. She was 32 at the time.
It took a couple trips and different neurologists to find a pediatric neurosurgeon who was using a new technique from Australia. For her, it was a blockage it was a flap of skin in her brain that was blocking circulation of the fluid. She had had very bad headaches in the past which it turns out was nature's way of relieving pressure. The procedure that worked for her was the insertion of a metal shaft between the two halves of the brain to puncture the flap allowing fluid to flow. She had most of hearing return almost immediately.
We actually had to repeat the procedure as the flap had regrown after a couple of years to the total amazement of the docs. She was near 40 by this time and brain tissue was not known to grow in adults. The device had been improved in the interim and there was now a small scissor on the end of the wand that could actually cut and remove a piece of the blockage. The surgeon was Dr Tim Steig at Virginia Mason in Seattle and still practices. She is now 70 and has no further issues--YEA!!!

On our journey, we found the diagnostic process was done better by neurologists vs neurosurgeon, the latter who prefer to do surgery as a first choice.

Good Luck on your search.

 

[samclem]

I don't know the Texas health community well, but the first thing that came to mind was UT Austin. Their Mischer clinic Conditions and Treatments | Neurology Neurosurgery | Mischer Neurosciences
treats pediatric hydrocephaly and many other adult neurological diseases.