I am a 14 boy, i received my VP shunt a little over a year ago,. it has affected my life in good and bad ways. I received it for PsuedoTumor Cerebri. I received 3 spinal taps prior to the shunt's placement. Yes, it has majorly helped my PTC, but it has limited me so much. I used to play football, and after a year off due to my surgery, the question has come up, shall i play again? The doctor who did the surgery, said he didnt see any problems with playing, except, all of the other doctors i have had all said no, except a few questionables.
on a side note, me and my friends all joke around about the "tube"/
I really really want to play football again, and i really just want this thing out of my head, the doctors all say a VP shunt can not be removed, but i believe there is still hope for me.
1. after only about a year and a month or so, can a VP shunt be removed?
2. If they can not remove the shunt, can i play football?
I may be young, but ive been through enough to know a lot about my "System(?)"
any help would be much appreciated.
im dealing with the same problem and want to know if i can remove it. my ptc is lookin pretty good as well. this surgery has completly destroyed my life, i regret getting it done. i read on the jefferson website that vp shunts are temorary or permenant so i know they can remove them. the ? is will they remove mine. im done dealing with all the complications it caused and want to move on with my life. plz msg me back i would love to talk more!
my daughter also has ptc, shunt place 1 yr ago 17yrs
she also would like to have shunt removed because of low pressure headaches before shunt spinal taps 1 every week
on 2/15/2010 woke in pain rush to dr for emergency spinal tap
ptc has us so confused undecide on wihat to do by i do know that her shunt can be removed at lease that what the dr in atlant ge told us write back so and good luck
my name is amanda and my son had a vp shunt placed when he was only a few weeks old... i'm happy to say he is doing fine he is almost three and only has a speech delay. I'm sorry you are unable to play football i know as a young man that is very important. actually that is one of the things i fear the most. having to tell my little boy no. and what reason will i give him? This is one question i will have to come up with a great answer for...i'm scared now of how others will treat him at school and for the rest of his life. i hate what happend to him and don't understand why... if only it was me...i too hope that one day this shunt will be removed. and just remember you're very strong to have hope, and VERY!!!! lucky to have experienced even just part of your life as a normal person. even if you never get to play again at least you'll know and will always remeber the feeling you had being out on that football field. my son never will...
I too have a VP Shunt prior to my Germinoma Brain Tumor diagnosis (02',03'). Due to my bad shunt pains my Kaiser Oncologist will put in a referralappointment for me to see the Kaiser Redwood City Neurosurgeon Dr. Sheridan who put the emergency shunt in the right backside of my head and tube in my right abdominal back in early 02'. It's been bothering me for the past 81/2 yrs that it feels like sharp poking pains that lasts for a few minutes to even a couple days! Now that I'm 30yrs old I don't need it anymore since it's just shunting so I hope the Dr. Sheridan will give the green light to take it out. I know that it's possible to have it taken out because my bone marrow transplant oncologist at UCSF said it's possible. Also I know a fellow Cancer survivor girl around my age that had her shunt removed a year ago and she's been doing okay. Although she said that it might be possible to have her shunt put back in if she experiences any future complications but for now she's fine without it. I just want to live a peaceful life without dealing with the ongoing aches and pains so there is hope for all of you! =)
I fixed my constipation problem thanks to metamucil, fiber cereal and bread. My poop is still not normal (yellow) so I think I might have malnutrition..I'd still like to have the shunt removed as It's not doing anything (disconnected) and It feels as If part of It is migrating further into my skull..not sure If that's bad
A couple weeks ago I went for an appointment at Children's Hospital Oakland to see my fellow survivor friend neuro-oncologist and his oncologist colleague about my VP shunt on whether if it can be removed. I was hoping to hear good news but unfortunately they told me according to United States it's too dangerous. They said it's been a long time that it become attached to my skin next to my brain, if they were to remove it, it could cause more serious damage and that they don't take it out only unless it's not working properly. They said if there's no problem with it and the pathway is operating fine then best to leave it alone. I asked them sometimes I get sharp pains in my neck where the tube sits, pains in my right abdominal where the tube drains, and pains in back right side of my head where the shunt is. And the other neuro-oncologist said the reason for that due the tubing can get entangled with scar tissue if I move my head around in certain angles/positions. I haven't had any pains in my neck and abdominal for a while, but it bothers/hurts sometimes whenever I sleep on it probably due to pressure on it and have to rub it to make the pain go away. It really ***** to live with the ongoing sharp pains but I guess it's better than getting seizures, being in a coma, or worse serious damage to my brain. =(
Hi, my name is Nathan Buckley. I have had a shunt in since i was 2 months old. I have had 12 revisions since then. I am now 24 years old. I found growing up hard because I was always causious of that little tube in my body. And to be wary of banging my head or my chest. Just in case the shunt might block. I found that I couldn't play sports. Which was ruff but to taylord, its not the end of the world. You can find something that will replace it. My experience is that I joined the school drama society. And I found that as enjoyful as doing sports. I recently had a scan done. And found that my VP shunt has not been working for 10 years. And that my body has adapted to the normal way of draining the fluid. But I have been told that I cannot get it removed. Just in case it bring's back the meningitis I had. That caused my condition. All I can say is that you will live a very productive life. Don't let the shunt get in your way.
I have had a shunt since I was only 9 and I am now 43. I had it implanted shortly after having surgery in 1977 to remove a Pilocytic Astrocytoma that was in my brain stem. It was found to be inoperable so radiation treatments were started soon after. I've never had any revisions made and it remained functional for many years. Many years later after I began working it started to effect my attendance; I was having headaches almost daily that were bad enough to keep me home in bed. A portion of the tube was removed from my neck to release tension that was created from my growing to 6'-1" and packing on over 100 lbs of muscle from lifting weights. But until that point it really did not effect my childhood too much, I was told by more than one neurosurgeon they would not remove the remainder of it for fear or infection. I empathize with those of you dealing with this issue, but all will be OK. I came to the conclusion I'd rather keep it than go through another brain surgery.
My son had his shunt placed in 1997 when he was 2. He is 16 now and wants it out. We just went to the NS and asked to have it removed. My son has never had a shunt revision or any issues with it. So the NS said yes he would take it out in a 2 step process. He would tie it off and wait and watch for a couple weeks and then we could schedule an appointment and have the whole thing removed. I am concerned that he might have to go back in and have it put back in, but since he is 16 I am letting him make the choice. His dx back in 1997 was pilcytic Astrocytoma in his brain stem.
I had put mine in at 2 months old. At 17 my brother and I were wrestling and he snapped it around where my appendix is. I asked to remove it and all they could get out was the pump. They said if I wanted it all removed they would have to cut all the way down but I didn't want that big of a scar.
My name is terrence and i have had the vp shunt since i was about 2 and i'm 20 now and all my life i've been teased talked about and ridiculed about the shunt and that kind of lowered my self esteem. I always wanted to know if the shunt can be removed, i just want to live a normal life. Also i've been feeling a sharp pain in my stomach where the shunt is if anyone knows what it means please let me know
There is absolutely no reason for you to have low self-esteem because of your shunt. There are professors at the University Hospitals that have been shunted themselves. So you can still be an intelligent person and receive a good education. Many people who have been teased reach far in life. There have been douzens of people who have made it to the top in Hollywood and other areas despite this. Many geniouses and succesful businessmen have been late bloomers.
If you feel pain you should consult your neurologist. There are neurologists spezialized in these issues at University Hospitals. If you have a catheter in your stomach it can cause problems and you need to discuss this with the neurologist. Are there other symptoms? Always write down your questions before you visit your doctor and be well prepaired. Think over what symptoms you have and when they occur. Where and when. Is there anything that increases or decreases the pain. For how long have you been having these symtoms etc. Was there anything that made the symtoms start etc. You taking these matters seriously and writing them down also indicates for the doctor that you yourself take your problems truly seriously and that you have analyzed your situation.
If the shunt does not cause you problems you should not have it removed. There is always a risk with surgery. If you can have it removed or not I cannot answer. Discuss it with your neurologist. They might have to look at CT and MRI to evaluate this. If you have a medical history at a University Hospital with a neurologist that you feel confident with, discuss these matters with him/her!
who and where is the ns? my 28 month has had severe complication due to a vp shunt and can not find ns that will even discuss removal we want it out- now! she has continued for 2 years being over shunted.
There might be something wrong with the shunt itself. A removal may not be the right choice. Maybe it needs adjustment or a complete exchange. Please read my earlier posts above, there's 2 of them. Please read about the Japanese doctor Takahashi and the other links. I cannot give you an answer to why she is feeling like she does. However, having read many articles on shunts, some children seem to grow out of the need for a shunt as they get older. I live in Europe, and I guess you're in the U.S.A? You need to find a good neurosurgeon to discuss these matters with and you need to be well prepared when you go there.
What one neurosurgeon told me, is that a removal of a shunt does not cause that many scars.
I hope this link is helpful:
Write a good list to clarify the symptoms, see my comment above for details. I really hope your child gets better and please, do not give up!!!! Be persistent, and if it takes 10 or even 20 or more doctors to get the assistance you need, do not stop asking!
My daughter has had a adjustable vp shunt for 6 years. 2 revisions in the last 9 months. Does anyone know of neurological group with more than one doctor/surgeon that actively works on quality of life issues?
Her doctor now, is supposedly the best in Nor cal but does surgery so much that he has no time to address quality of life. We see him after the emergency room. Not ideal.
I would move anywhere in the country to be near cutting edge doctors who also address quality of life?
Anyone with suggestions please post!
Whoa, I can't believe I posted this 4 years ago... I actually forgot entirely about this. I've kind of come to accept my shunt for what it is, I mean there isn't much I can do about it. I was looking into Endoscopic Third Ventriloscomy.
Well, life goes on.
See, I've been working out a lot over the past 2 years, and I've slowly transformed my body from the chubby 14 year old I was when I wrote this. but now that I'm skinnier, I've been working on toning up my abs, and I'm just curious how its going to look around the incision in my stomach.
and how does it work around larger pec muscles?
My husband has a vp shunt since he was 8 years old and I was surprised reading the messages here that they had it revisioned. My husband told me that eversince he had the operation, he never had it revisioned. Now he is experiencing unexplainable headaches, pounding his head on the right side. His doctor told him to take pain killer like mefenamic acid or paracetamol but I know it's not just like that. This is the first time he experienced such aterrible headache, so painful that he does not even want to move. Can you please let me know any suggestioms that we need to do? Thank you so much.
Yes they can be removed. Depending on your situation you may need a shunt but there are alot of options now. I have PTC as well. I was diagnosed 3 years ago. I was shunted first because my ear doc had performed a myringotomy for fluid in my ears. It turned out to be leaking CSF. My Neurosurgeon put in a shunt to take the pressure off and devert the fluid. It was a programable shunt. It worked pretty good for a few months. Then it stopped working and he put a new one in as well as a second valuve for shutting this enterily down when i drained too much. Well then that one didnt quite drain enough. This past year a new programable valve came out to treat kids going through chemotherapy. My neurosurgeon said he thought it would work great for me becasue it has ten settings including a virutal off setting which allows it to come on by itself when my pressure rises. This seems to have done the trick. Yes it has taken me 3 years to really get in great shape but it sure beats the alternative. Do not give up and make your doctor think outside of the box for other options. Good luck everyone....
I also have a shunt due to meningitis when i was only 9 months. I am soon to be 29 in a few months. I have dealt with bulllies as a kid and people just curious to why I have a scar on my head. I grew my hair out to cover the scar, however am proud to know I survived and am happy to tell my story. I didn't let it stop me from living and I am very athletic. I played basketball, track, football, volleyball etc all through high school. I have bumped my head a few times and am fine. The doctors also told me that my body has adjusted well and the shunt is not working no more. I was told however that it may cause more trouble than good to remove it seeing that I have had it for so long and that tissues probably have grown around it. I am still going to inquire some more and have some scans done but if I can't remove it, am happy. I have lived healthy this long, and I rather live many more years with it than a miserable life without
I am from Bangladesh.
On 25 November 2013 I became a father of a baby girl after 2 days on 27th the doctor said my daughter need to be VT Shunting immediately and the put a shunt on my daughter on 30th. Till I had no idea what the VP shunt is! From then I am surfing on internet looking for the answer when will my darling daughter move around free without the catheter under her skin. I don't want to believe that my daughter have to wear the catheter rest of her life.
what do you mean by "disconnected" this disconnection was done surgically or it happened by itself, please do reply as my daughter is also having VP shunt and I want to know whether her shunt is working or not. Thanks
I had a shunt removed successfully in 1994 after contracting meningitis from bacteria being introduced via shunt flow test, which determined it was not functional. I had many revisions when little but have had no problems since removal.
You need to have him get an MRI that tells more than a Cat Scan. If there is something wrong with his VP Shunt, it will be seen. Headaches are number one thing that happens when there is a malfunction. The doctors told me, normally you need to revise every 10 years, my son had his 16 years before he had headaches, then a seizure and had a revision.
I would believe that it would need to be a medical necessity to be able to even think of removing a shunt. I've been told that my child never can have his removed. That doesn't mean that they can't do it on others. Just remember the risks of your medical condition compared to the shunt. In some cases, a shunt saves lives. Best to. you
My daughter had hers in when she was 5 months old and now she is 8. We are getting a surgery to remove her shunt that is disconnected. Surgeons said they will remove shunt from her pelvis (when it got disconnected it went down to her pelvis) with laparoscopic surgery and neurosurgeon will remove the valve from her skull if its not stuck to skull badly. So it is possible to get it removed. But the skull part might not be able to depending on how bad it got molded with skull. The only way they will know is after they open that area.
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