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Randiscan
09-03-2006, 09:10 AM
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




DystoniaGal
09-03-2006, 11:38 AM
Randi

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

Suzie

davidmic61
09-03-2006, 01:51 PM
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!!

LIZARD
09-03-2006, 03:11 PM
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! :o

suecr
09-06-2006, 12:32 PM
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.

paul roy
12-22-2006, 10:36 PM
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

LIZARD
12-23-2006, 10:11 AM
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.

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 :)

janet
04-02-2007, 11:00 PM
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 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.

ondrej
01-06-2008, 02:01 AM
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

cazzie
01-13-2008, 01:19 PM
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

Nikita
06-25-2008, 05:22 PM
Hi Ondrej,

My name is Nikita i am 16 years old an have had a VP Shunt since i was 15 months old. I had a revision in February last year, last time i flew was 2 years ago and also suffered the same pain in the face on landing. Also suffered deafness in my left ear (same side as my shunt.) for several days.

My flight was only 2 hours, but i am due to fly in excess of four hours and i am a little worried that the effects might be worse with a longer flight.

So Paul i was wondering if you have managed to finish your paper and if you have any more information about this, hope your son is ok.

If anybody has any other information about this problem please let me no.
Other than the landing i had no other problems.

Thanks, Nikita.

goddess78
12-30-2008, 07:05 AM
Hi there, let me start by saying thank you all for all the stories you have shared and how happy i am to see so many people living clearly full lives with a CSF shunt.
With that said some of the stories have been positive and others have been less than positive towards flying with a shunt.
My major concern is that I have recently gotten engaged and are planning the wedding - My father has a shunt from a massive cerebral hemorrhage 7 years ago. He under went 7 major surgeries to unblock the shunt and has since recovered VERY well - if you didn't know that he'd had a CVA you'd never know anything was wrong. He has great memory loss to his short term memory and his common sense can be a bit off from time to time but other than that most things have straightened themselves out.
His BP is stable and holding.
SOOOO after that long lead up - my question is

We want to get married in the Grand Cayman Islands
Will he be OK to fly the flight from Toronto,ON, CA???

If you have ANY idea please let me know - like a website or number to call would be very helpful

thank you all very much

jadiee-x
12-30-2008, 06:25 PM
i too have had a vp shunt since 13 months old, im now 17, and i have flown numerous times around 30 times all kinds of distances.
ive never had any pain from any of the journey :)
i even flew less than a week after a full shunt revision and i had no problems with take off flying or landing.
i suppose this varies from person to person.
Hope all goes well
jade x:grouphug:

tamiandrudy
01-14-2009, 05:31 PM
Hi, my son has a reprogrammable strata valve shunt. Have you heard of this? I wasn't sure if it was different from the VP shunt you mentioned. Well, he's had it for 5 years, and we've flown overseas to the Virgin Islands twice, with no issues. My son has also had little to no complications either, since the shunt placement. I know his neurosurgeon has always recommended to come back into the office to ensure that the shunt is on the same pressure. And it always is, even after reaching such a high altitude. Hope this helps!! We have an awesome neurosurgeon- Dr. Jogi Pattisapu in Orlando, FL. He is a key component in research concerning hydrocephalus.

Take care and God bless!!

h0ckeyd
01-30-2009, 05:39 PM
I would like to add my "two penneth" worth, as we say in the UK if thats alright?

I have hydocephalus; have had it since I was about 12 weeks (ergo, probably in the womb), I have had about 48 shunt replacements (so many I often lose count) which have been blamed on a great many things, for example "ring worm" and "being allergic to the coating"...all false dawns, but anyway, I digress...I recently spent 3 months in a round-the-world trip which went as follows: London-NY-(Overland)-LA-NZ-Aus-China-Thai-India-Doha-Italy-(Overland)-UK...from that vast amount of flying I undertook, I have never experienced any trouble. What I'm trying to say is that I certainly agree that it must either be under very special conditions or on an individual basis (although I agree completely about the cabin pressure point, have a look at a potato chip bag the next time your on a plane, the pressure inside that bag for it to pop out is not "normal" - and that is happening to your brain)

Darren (H0ckeyd)

Nonna Gloria
03-21-2011, 11:53 PM
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.

I found your post very interesting!!

My 80 year old mother was diagnosed with dementia caused by NPH (Normal Pressure Hydrocephalus) late last year. I suspected that she has NPH and this was detected due to my insistence on her having a CT scan, seeing a good Neurologist and having a MRI scan.

I took both my elderly parents on a two week cruise to New Zealand a month ago, spending most of the time pushing Mum around in a wheelchair,
I thought her mental state at the time was like that of a three year old child.

After returning to Adelaide late at night from Melbourne by plane (a one hour flight), Mum pushed past me when we were in the laundry together.

I asked her what she was doing and she said she was going outside to help bring in the suitcases.

With that she powered out the door, down the step and strode out to the car, bringing back a small suitcase, which she lifted up and brought into the house.

All this occurred without her using a walking stick or shuffling.

She was behaving like the Mum I knew ten years ago, both physically and mentally. Sadly this only lasted for a short time, but it has given me such hope for the Shunt Operation which we hope she has soon!

My four sisters and I all thought Mum did not have Alzheimer's, even though her primary care doctor was not receptive to this idea at first.

This type of behaviour has occurred each time after she has flown in the last five years.

Have you or anyone heard of this phenomenon before.

P.S. We live in Australia

venusny31
03-23-2011, 07:54 PM
I had a vp shunt put in october 2010. Shortly after my job changed and in January 2011 I started flying every week for work. I had no issues with flying. My doctor said he didnnt feel I would have any issues and he was right.

annakkro
03-25-2011, 09:36 PM
I recently had my delta replaced with a strata valve. My Dr. told me that the strata has a small piece of metal in it that can get picked up in airport metal detectors. I don't carry a medical ID card or anything. Has anyone else with a strata valve been picked up by a metal detector? Especially with the new TSA regulations I am a bit nervous and I will be flying next week. Can anyone tell me how it went for you?

BillB
03-31-2011, 08:38 AM
I recently had my delta replaced with a strata valve. My Dr. told me that the strata has a small piece of metal in it that can get picked up in airport metal detectors. I don't carry a medical ID card or anything. Has anyone else with a strata valve been picked up by a metal detector? Especially with the new TSA regulations I am a bit nervous and I will be flying next week. Can anyone tell me how it went for you?



I strongly suggest you talk to the NSA -National Security Agent - at your departure airport at least a week before you travel to learn what paperwork and ID's you will need to avoid all the magnetic scanning you will go through. DO NOT talk to a guard, but to a upper level supervisor. These people are NOT rocket scientists!! Also take a SIGNED Office Letter Head from your surgeon and any documents (ID CARDS) WITH YOU. I was told the Walk Through scanners are not dangerous to the valve, but the Hand Held Wands might be. Good luck!

julio.torre
04-07-2011, 12:18 AM
My 20 year old son developed hydrocephalus at birth following a severe meningitis infection and has been shunted all his life. He has traveled by air extensively since infancy and never experienced any noticeable problem as a result. He also frequently drives to mountain areas, hikes for days at a time and rock climbs at altitude. While his experience has been positive so far, I am always weary of this type of anecdotal advice. Each case is different and I always advise to obtain a professional opinion from a neurosurgeon whenever possible.

venusny31
08-07-2011, 12:32 PM
I recently had my delta replaced with a strata valve. My Dr. told me that the strata has a small piece of metal in it that can get picked up in airport metal detectors. I don't carry a medical ID card or anything. Has anyone else with a strata valve been picked up by a metal detector? Especially with the new TSA regulations I am a bit nervous and I will be flying next week. Can anyone tell me how it went for you?

I have a strata valve and I fly weekly for work. I have never had it picked up by a detector at the airport. Mine is the strata programable.