FAQ/Help |
Calendar |
Search |
Today's Posts |
09-26-2010, 08:09 PM | #21 | ||
|
|||
New Member
|
I do not see postings from anyone other than those that have shunts themselves so I hope that I do not offend anyone by being the one to share my son's problems and ask for advice. My son had spinal meningitis at 5 days old. They told me he would not make it through the night, his spinal fluid looked like cloudy water. But he did make it, through that and the next year that was spent in and out of Children's Hospital (mostly in). He was shunted, revised, revised, infected, shunted externally, and revised again. Then we went four blessed years. Another revision, and seven more years. This revision did not go as well at age 12. He was revised, and the shunt failed within six hours. The doctors did not want to believe it, refused to do another CT until I became hysterical. They did do CT and took him immediately to surgery. At that point he was so sick, he also suffered a collapsed lung. He was brought out on a ventilator for 3 days. When we were released from the hospital that time I prayed, and prayed, that it would be the last. Now 18 years later at age 30 the cycle has started again. He began getting headaches in late June that medication was not stopping. In the second week of July we took him to the local hospital. His vision was so bad that he was needing help to walk by his wife. They did CT and said there was nothing wrong except for a new diagnosis of migraines. A week later his wife called me at 3:30 am to tell me he was projectile vomiting. I met them at the same hospital and the doctor did not seem concerned. They did another CT and while waiting for it to be read, (two hours plus) the doctor never came back. At 6:00 a.m they came and told us they wanted to fly him out immediately to hospital 60 miles away. When I asked why the doctor had not been concerned before he told me that with all the shunts he had he thought one of them had to be working. He never read the report that he had only one functioning shunt, the rest were catheters left from previous surgeries that could not be removed due to bleeding risk. I do not know how this disease can be so dismissed . He had surgery that day and was crawling on his hands and knees to the bathroom from abdominal pain four days later. Back in ER 5 days after discharge,actually questioned rudely by ER doctor as to why we are there. Who told us to come? Best yet, told him to quit taking his pain meds, that was probably the problem. Back home, stomach pains and then the headaches again. Back to clinic three more times. CT fine, everything's ok. Getting sicker/sicker. I take him back to hospital and now we just had surgery again. SLIT VENTRICLE SYNDROME. How are we supposed to know what's wrong when the people that are supposed to know don't. No matter how old he is, he is my son, and any knowledge or support I can learn from this website is a true blessing. Thank you for posting your medical issues, sharing knowledge makes us stronger and more prepared, and a lot less alone.
|
||
Reply With Quote |
10-17-2010, 09:56 PM | #22 | ||
|
|||
Junior Member
|
Quote:
|
||
Reply With Quote |
12-26-2010, 07:51 PM | #23 | ||
|
|||
Junior Member
|
I know it can be tough dealing with a shunt system but it will get better. I have had 11 surgeries before by 5th bday and then i was good for 4 years and had to get it revised at the age of 9 since I outgrew it and have been problem free for over 11 years now. I get headaches and neck pain that bother me from time to time but nothing too serious that the doctors say requires surgery. I am still going on with the same shunt and everything is good. It takes time to heal all wounds and pains but it will get better. I am also glad that I have found this site because I feel as if I can not relate to anyone in my area since im not comfortable talking about it but I hope these words will help you and give you more hope that things will get better.
|
||
Reply With Quote |
"Thanks for this!" says: | Bhavana (03-05-2011) |
02-22-2011, 04:30 PM | #24 | |||
|
||||
Junior Member
|
I don’t know where to begin.I am 31 y.o,medical student from Greece.Was born with congenital hydrocephalus and a VP shunt was interted when I was 15days old.Since then I never had any problems as a child.Well,when I was 11 I had my first epileptic seizure and since then I’m on medication.As I said,I am a medical student,I attend med school,study as much as I can,had real difficulty in accepting epilepsy but since med school I realized it’s just another condition and I must learn to accept it and live with it.So far so good.In July of 2008 I left for Prague.Czech Republ.as an exchange student.My academic work there was successful.I passed a respected number of courses but a few months before I finish the program I started having enormous headaches that made me unfunctionable although I had to finish my clerkship…..I visited there 3 neurologists and 1 neurosurgeon and the diagnosis was cervical spine syndrome,I was wearing a special neck collar but didn’t do anything.I kept going but nobody could tell me what was wrong.All these after 3 brain CTs and 1 brain MRI.Till today I am not sure if they saw something in there but couldn’t express it in English…Anyway,I came back home.headaches were worse and I already had began to lose my vision of my right eye and when I went to my eye dr he urgently reffered me to the neurosurgeon beacuse the shunt was dead and ICP and IOP was sky high……..resulting in optic disk edema and loss of vision from the right eye.I had the 1st VP shunt replacement in 10/2009.Next thing I remember was March of 2010,waking up at a bed in neurosurgery department with left hemiparesis and strong vertigo episodes.What happened in between?The 2nd shunt worked about 1month and then started malfunctioning because it was defective.I ended up in ICU in coma for 10days,my heart stopped and they had to revive me and use mechanical respiratory support and then 2months and 20days at the neurosurg.department………I don’t remember anything that had happened,I actually have a gap of 1year,I only remember fragments and now and then I have some flashes of memories.The surgeon used another VP shunt but that one didn’t work at all and now I have a hakim-medos vp shunt.A 3rd one which so far is working.I have a constant buzz in my ears,which they say it’s normal.Obviously I haven’t gone to school since 2009.My right eye was too damaged by the pressure to recover,the left eye is working ok but I can’t read without bright light or if the fonts are too small.As for my psychological status?That’s another issue……..I am depressed,miserable,moody,aggressive to my family as if it;s their fault.
I had to go to rehab to make my leg stronger but still walk with a walking aid.My hand is ok,although a little weakened but nothing serious.I feel……I don’t know how to describe it.As if my whole world was taken from me……One min I was happy traveling,studying and the other I am in my house,stuck,not able to go to school,to go out by myself,to read…At the beginning,after I was discharged and returned home I couldn’t sleep.I had nightmares that I was waking up in a blood bath with the shunt hanging out of my head and I was trying to hold it,a couple of times I’ve dreamed that I am vanishing but still in my house and my family and friends can’t see me……I really expect everything now…….I don’t afraid of dying……..No,since I won’t feel it.I am only afraid that something like that might happen again and lose my memory again and that is really painful.I am so eager to go back to school,continue my life from where I left it.The last 2 days I;ve been trying to read a book but the fonts are so little that make me dizzy and tired and make me doubt whether I am ready to go back to school…… I think I said enough for introduction……….As Dr Irvin Yalom(prof.emer.of psychiatry in Stanford and my favorite writer…..If we acknowledge the universality of our condition things are easier…..a bit….since we are not alone,other people might have the same experience,might dealt with the same issues and could help us overcome our issues) I was also informed what I have a genetical condition called Arnold-Chiary malformation but not the severe type and agenesia of mesollobium I apologize if my long text tired you.Feel Free to contact me.it would be nice to feel someone really knows what I'm going through p.s:I too have neck and abdominal pains but after xrays/ct scans nothing is wrong..........but the pain is still there.
__________________
medical student 6th yr |
|||
Reply With Quote |
03-04-2011, 03:37 PM | #25 | ||
|
|||
New Member
|
Quote:
|
||
Reply With Quote |
03-05-2011, 02:59 PM | #26 | ||
|
|||
New Member
|
I have a 13 yrs old with shunt and may need a revisions since her MRI is off.I was so glad to read U'r post that one can outgrow the need for shunt.please let me know how to find if a shunt is not needed anymore .like all mom's with kids with shunt it would be a blessing to find out that my kid might not need one or even that it's possible.
God Bless Bhavana |
||
Reply With Quote |
09-28-2011, 02:12 AM | #27 | |||
|
||||
New Member
|
i know what you feel like i have the same problem. i don't know what to do neither and i'm 32yrs old.
|
|||
Reply With Quote |
05-16-2012, 01:30 PM | #28 | ||
|
|||
New Member
|
I too had the same probs.. Psuedo tumor... Got my shunt.. Had probs with the first.. (line was kinked) Had another surg... Ended up with a shunt infection that almost killed me.. Had part of my abdominal muscle removed due to infection.. I also have a nice scar where the had to open me up to clean my organs out.. BEFORE my shunt I only had headaches.. Was told i would only be off work for 2 weeks for the operation.. I almost start laughing every time i think about the promises in the beginning by the neuro surgeon... (BTW You can fire your neuro surgeon.. and get another one. I have a wonderful one now) I have spent the last year trying to walk and talk normal.. I finally can speak normally.. I am currently going thru physical therapy to walk normally.. I did the pain pills for two years, and you know what??? I rather deal with the pain and have complete control of my mind.. I am TAKING my life back no matter what.. We have all been delt a really bad hand in life, by ending up with shunts.. But the headaches do get better.. I rather look at all the past surgeries, and pain i went thru as a "hurdle".. I LIVED thru hell, and i am still alive.. I spent to much of my life recovering, and i will learn to live life to the fullest regardless of my shunt.. I wish everyone the best, and i will keep you in my prayers.. The best advice i can give is teach yourself to fight the pain by doing something you love.. I have noticed, when i am in my flower garden i forget the pain.. When i am looking into my grandsons eyes, and enjoying his smile,, I have no pain.. Please everyone live life to the fullest..
Quote:
|
||
Reply With Quote |
06-16-2012, 12:44 PM | #29 | ||
|
|||
New Member
|
Quote:
My son was shunted at 6 months old( spina bifida) he still has the same shunt. Only one lengthining revision. He has had none of the problems described. So it is possible to be pain free! I am so sorry you are going through this. Everything that could go right, has gone right, and at 29 he is in great health(except some extra weight). I will say though, he has had lots of prayer since he was born. I believe it has been his covering over his health. I will add you to my prayer list. Health and healing in Jesus name! Linda I have a prayer email list, but am unable to list it until I have 10 posts....perhaps later. |
||
Reply With Quote |
06-21-2012, 05:23 PM | #30 | ||
|
|||
New Member
|
Please don't be sad. I am sorry to hear you are in pain. I get severe headaches that the doctor says cannot be helped but I could not imagine what your stomach pains are like. I have had hydrocephalus since birth, the 1st VP shunt was put in at 6 weeks old. I grew up with it being a fact of life. I have never driven so I don't miss it. You are having to learn to live without privileges you have enjoyed for years on top of having surgeries, pain, and dealing with the paperwork of disability and medical care. I am also new on this site but from what I have read we have now found a wonderful support team. Friendship can make life easier even if it can't stop the physical pain. Don't give up. There is a reason for you pain, the doctors just aren't finding it yet.
Quote:
|
||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
New type of shunt | Hydrocephalus | |||
VP Shunt | Hydrocephalus | |||
Shunt Inquiries | Hydrocephalus | |||
Shunt pains | Hydrocephalus | |||
My Shunt has detachted | Hydrocephalus |