Hi,
I used to post on CN on the other braintalk but have also posted here long ago. My grandson has a VP shunt. His name is Kody. We are going to Disney World in November with Make a wish and I was wondering if there are any issues with VP shunts or any shunts and flying. We will ask the neurosurgeon closer to the time we are going but thought I could get some insight here.


Kody had a hemispherectomy done at 11 weeks old for a intractable seizure disorder called Hemimegalencephaly. He acquired hydrocephaly from the brain surgery and had an emergency shunt put in at 6 months old. (he is 4 and has a twin sister). He has had no revisions or infections. (Thank goodness!) He is also seizure free and med free. Not talking or walking yet but we stay positive that he will. He cognitively does pretty good. Here is his webpage in case your interested.
www.caringbridge.org/pa/kodyc

Thanks! Randi

Randi

I have never had any issues with flying and my shunt. Hope you guys have a great time on his MAW trip.

Suzie

I fly w/o any issues. I had one bout of "super-sick" on a Phoenix to Chicago flight in the early 1980's, but no problems since. Have a great flight, and enjoy D-World. Say hi to Mickey for me!!

Hey, Randi.

I'd ask the nsg just in case, due to Kody's special circumstances, but I have personally never had any problems flying. We're each different in that way.



Enjoy WDW!!!

LIZARD, so jealous!

No problems with Hayley! No problems with metal detector either. I just made sure she was drinking on takeoff and landing for the ear pressure.

Dear Randy and EVERYONE else interested enough in this topic,

We have a 4 year old, with a VP shunt since 4 months old, and have endured 3revisions. We own a plane, and I have had Christian up with us 4 times now, EACH with a problem. I am ready to sell the plane, and to write a very informative paper on this subject, as it seems to me, that there is not enough information on this topic. I have appreciated everyone’s input as to those of you with a VP shunt, telling us without them that there have been no problems. I am so very happy for all of you symptomatic. We have not been so fortunate.
First, I see so many uneducated writings on the issue of pressurization vs. unpressurized vessels. Without getting too deep here, and to prepare for my paper, but I have to inform you all, that just because you are on a 737 or similar jet, does NOT mean there are some significant pressure differences. I suspect, that those of you who have not experienced any problems, have flown on an aircraft that has a great system that will keep the 'cabin altitude' down as close to sea level as possible. Every aircraft has it's own regulation in PSI ( pounds per square inch ) which may differ from the exact same type sitting next to it in the gate. All of that said, to tell you that You may be experiencing 8,000 feet of air in a pressurized airplane....or more.
I fly my son at 1500 feet when possible. He has never been above 3,000 feet. So he has experienced much less of a pressure loss than those who fly on a big jet at 35,000 feet.
Just 2 days ago, we flew. In minutes, he showed the setting sun eyes, stared ahead, not moving at all, and unresponsive. He soon fell asleep. My wife sitting next to him tried to wake him up. He stirred but only to go right to sleep. This was 3-4 hours prior to his normal nap time, which he takes like clock work. This was the third time ( this one was the worst ) he has shown like symptoms.
I have a Carbon Monoxide detector. None detected.
We have driven him through WV at higher altitudes. No signs then remembered.
We climb, and descend very slowly. We have him chew and swallow to assist.
He kept blinking his eyes, when we asked him what was wrong. When we asked where it hurt, he pointed to his belly twice ( keep in mind, he only responded to these 2 questions, and he is slow developmentally, so we can not confirm the belly as of yet )
He could not lift his eyes upward, as we tried to have him look at our fingers.
It has seemed that these 3 flights, he started to stir as we were close to the ground on final, or after landing.....which seems to me that he is extremely sensitive to the altitude changes.
We landed, and he was awake and seemed 'normal' within 4 minutes of landing.
If nothing else, can someone please provide me with a link...or an avenue to get into this deeper? There has to be someone out there who is as sensitive, that can help me to put this paper together to educate us all, so we may learn through this to first keep anyone from suffering, and second, to build a better shunt. There has got to be a better way.
I am not an engineer, but understand how hydraulics and pneumatics work. I also understand that at 18,000 feet, we are at half of the earth’s atmosphere. The GREATEST change happens at the altitudes closest to sea level. There is where we will see the biggest changes...therefore the biggest issues I suspect with shunts.
If there is a doctor out there, just like my sons, who will tell us that there is NO issues flying with a shunt, then please do not reply. I am not buying it for a second. If you are so certain, put one in your own head, and lets go for a flight. If your ears pop driving up a hill on the ground...that means your body ( inner ear ) has sensed a change, and the body is adjusting. What makes anyone with any common sense think that a shunt would be any different?
Please. Give me some good info. I want to help not only my son, but also all who may benefit from this.
Merry Christmas to all,

Paul Roy

I said this before, and I'll repeat for your benefit. We are all individual, and the more complicated your brain and hydro/surgery history are, the more trouble you'll have with flying. I am 40 yo, born with hydro, shunted in infancy, and have never had any trouble with flying. Some years ago, though, my hubby and I were driving through the mountains in Tennessee, and I thought I was in failure. My headache and confusion were so bad, I couldn't stay awake, I was sick as a dog...you get the pic. There is a difference between driving in elevated areas and flying. I know from personal experience.


LIZARD

I found you by doing word search "pain and altitude" - hope this helps:
3 years ago my trigeminal nerve was damaged - I've had many TX - nothing helps. EXCEPT, when I fly and 737s and we get above 30,000 feet my pain totally disappears. I still have the numbness in my face (nerve injured during surgery) but ABSOLTELY no pain. I've told all my MDx (including neurologists) and they don't have a clue. Thanks for standing your ground - doctors are limited in knowledge. STAND ON YOUR TRUTH.
May God bless you and your family.

Hi Paul,

I'm just wondering if you've happened to find out more about this topic.

I just flew from Prague to New York today and had a very weird experience that made me going on-line straight away and look a bit into this.

I'm almost 32 and got my VP shunt about 2 years ago as a treatment for my hydro.

First of all I flew from Prague to Paris. It was an Airbus Industrie A320, I had no problems until a couple of miles before landing where we descended and started circling and waiting for an approval for landing. Not sure about the altitude but suddenly I felt an extreme pain in my left eye vertical starting in my forehead going all the way through my left cheek. But the pain in my eye was unbearable, I closed my eye, tried chewing but nothing was helping. I felt really dizzy and hoped to have missed my connecting flight to get some extra rest but I didn't.

Paris - New York I flew Boeing 777-300ER Passenger and had no new problems, I felt still dizzy and I can still feel pain in my left eye but obviously the pressure in the cabin must be much better handled.

So this is my experience. Pls. come back and let me know how your son is doing and what's happened to the paper you were writing.

Regards,
Ondrej

i think the website is great.
i not sure about flyiging and vp shunts i myslef have an vp shunt but only flyed once so i dont now rally ask your doctor i would say the one for your shunt.

take care
cazzie