vp shunt problems
 

Hi! I'm new to this site and need some help understanding my husbands symptoms. My husband,Dean,had a vp shunt inserted in October 2012,since then he has had headaches, short term memory loss, tingling at top of head, increased anxiety and agitation, feels like he is in a fog most of the time. went to ER for confusion in feb. and they admitted him and adjusted his shunt x 2. His symptoms have not resolved and the neurosurgeon now thinks he is having seizures that is causing his symptoms. yikes! We don't see the neurologist until april 15th. Anyone else having these issues with their shunt? I don't know where else to turn.

Hi Lisa. I am sorry to hear of all the trouble your husband is having. I can't say what may be causing these issues but, I will say that every symptom you mentioned, I also had right before my last revision which, turned out to be a full replacement. The whole "confused, foggy feeling" really rings a bell! I also made a trip to the ER where, I was x-rayed, CT'd, given a pain pill, and sent home. The whole time, having a disconnection in my neck and a barely functional, 23 yr old shunt. Gauging by my wife's reaction to my problems, I am convinced that shunt issues can be as tough on the spouse, as it is for those of us carrying them. My heart goes out to you both, hope Mr Dean finds relief soon.

one of the first on the planet
 

Hello Lisa, I was one of the first people on the planet to have this procedure. What I don't understand why all these issues. I have had 4 revisions, total. Three before I was ten. The last 28 years later. I have had a headache 5 times in my life, all required surgery. I can't say I have ever the foggy/confused feeling, I can tell you I know exactly when the shunt is blocked, I generally wind up getting vertigo, I have been told that there are only two ways to detect an issue with the shunt, ct scans and mri's don't work. The two ways are a spinal tap and also having an opthamologist see if the ventricles in the back of your eyes are swollen. I can tell you however disconcerting the following may sound I was recently diaganosed with epilepsy. I am unfortunately a guinea pig, I will keep you up to date if I am diagnosed with anything else that my neurologist may feel could be shunt related, doctors have to be a little more reactive with me than proactive, it is a learning experience for all of us.

Waylon~ thanks for replying! My husband just had a shuntogram done couple weeks ago, and they keep telling us shunt is ok. do you think it could be draining too much? Nsg thinks symptoms are due to seizures. We see a neurologist on April 9th. EEG was normal. How do you know if shunt is over or under draining?

Jason~I'm glad your not having issues with your shunt like so many others are. Is yours programmable? Does a lot of people develop seizures after shunting? GOD BLESS!

Lisa, I only have had my shunt to over drain a couple times. Both times, it was remedied by implantation of an anti-siphon valve. Best I remember (yes, my memory stinks too), the symptoms were amplified, especially the headaches. During the week or two prior to surgery, I honestly thought my head would explode but, with the over-draining headaches, it seemed as they were more "localized" and sporadic. In my opinion, these were more of a piercing pain, as opposed to the widespread, dull ache, and at times would bring me to my knees. If the headache subsides, or better yet goes away while laying down, this is a good indication of over-draining.

Thanks Waylon! his headaches don't go away when lying down, and at times could bring tears to his eyes. His moves about the head in localized area. May last 1 hour to a couple hours. may wake up with it. some times it is dull across front of forehead. but most of time is severe. Has been in bed his 2 days off. He is getting really depressed about it.

I just read back over your original post for the forth time (scatterbrained :-). I am taken back by the similarities with Mr Deans symptoms, and the symptoms that lead to my revision/ replacement in February. When seen prior to my surgery, my didn't worry to much with hunting a problem. He said my symptoms were a "dead giveaway" and the ct scan revealed that my ventricles were "huge". Upon opening me up, my shunt was "barely functional" and tubing was completely broken in my neck. The only exception with me and Mr Dean is that the shunt I had replaced had been in for over 20 years. Mine was just worn out and his just isn't that old.:confused:

I've never used a neurologist, only a neurosurgeon. I sure hope he gets answers from the and quick! I know the pain he is in, and it is no joke. Given the severity, it does sound like possible over draining but, only the drs opinion counts unfortunately. Honestly, in my opinion, over draining is probably the worst pain I have had with hydro but, laying down always helped me get relief. During the overtraining episodes, either the other symptoms "took a back seat" due to the severity of pain or were not existent.

Well I'm not real sure what to think about all this. It's so new to us we don't know the differences in headaches yet. Do they diagnose the overdraining from a CT scan? I think his ventricles are always large due to him having hydro for so long untreated, or should they shrink back down?

My overdraining was identified on a ct scan, after a ventricle all but collapsed. I will say, that type headache is definitely different, to me. I've always had really good neurosurgeons and just trusted what they advised but, I understand that sure isn't consoling when your appointment is still several days off. :(

Waylon thanks so much for listening to me! My neurosurgeon keeps telling us his symptoms are due to seizures. Is a revision and an adjustment the same thing? He was in hospital 2/26 and then again 3/3/13 and got adjusted both times. no CT after last adjustment. has apt to see neurosurgeon on April 19th will ask lots of questions!! thanks again for listening to me and We wish you the very best!

Yes ma'am, not a problem! I have always been amazed at the similarities and differences, in our stories. No, an adjustment takes only about 2 minutes, with the use of a little mechanism containing magnets, my surgeon compared it to a "compass". A revision is a surgery for identifying and/ or fixing problems. Your angst with this whole hydro thing, my last bout, in Feb., almost drove my lovely wife crazy, as this was her first time dealing with it/ me.

It kinda does drive us crazy cause we wnt to do something to help and can't. your wife sounds like a very caring person, you are lucky to have each other. dean and I have been married for 22 years and this is the most stressful thing we have gone thru. It sucks!!

It is frustrating, hydro can be quite a journey and yes ma'am, I have an awesome co-pilot on this journey (15yrs). I wished I could give you some clue into the whole seizure side of this thing but, I have no experience with that one. With me, after days, weeks, or months of symptoms with no answers, I really get physically and mentally drained. This go around, I was pretty much useless at work, by surgery time.

Yeah he is struggling at work now too especially with these seizures. Seems to be really wearing him down. Luckily he has very understanding bosses and work with him. but I've never seen him this exhausted before. He just got up and said his headaches do get better when lying down. hmmm... wonder if that shunt is overdraining? If the neurologist don't find anything next week I'm calling the neurosurgeon and requesting a CT I think. What are the symptoms of a split ventricle, do you know?

Fatigue was a biggie with me, this time too. I wasn't really ever sleepy per say, just "tired". I had little to no initiative to do anything other than work and lay on the couch, that is so unlike me. Slit ventricles can be associated with overdraining but, they are also a source for several varying opinions and causes. The only symptoms I had and have also heard of were being TIRED, nausea, and the brain splitting headache. I wouldn't go as far to say that's definitely it but, if it subsides when laying down.........that sure raises suspicion. If he hasn't had one recently, I would think that a ct scan may be the first thing the dr will want.

Dean just joined us and seen you are from Alabama and would like to know if you are a race fan and go to Talladega? I think I will get a CT scan ordered.

Yes sir, I love NASCAR but, every year the Talladega race is on the same weekend as one of the bigger motorcycle rallies close to here. My boss lady likes the rallies much better so we skip the race.:wink: I am sure the doc would want both but, a set of X-rays wouldn't hurt either. That's how my doc found the break, in the tubing, in my neck. Now, mind you he was the 3rd dr that had looked at the SAME X-ray! One was the on call neuro at a local ER, the other was another ns I had used for a while. After missing that, and basically blowing me off, I got this new doc.........the one that found the break.

Cool deal, sounds like fun!! We live near St.Louis so we go to Barnes Jewish hospital which has a lot of Washington university md's and students,tons of students:) That's where his neurosurgeon and new neurologist is at, but maybe we need a second opinion? although we got like 20 at the hospital. I think that's why we r so confused.

So Mr Dean has had these symptoms every since he was implanted in Oct of 2012? This is one of the stories I feared as soon as my doc told me that he used a programmable on me. I have seen several stories of people who had nothing but trouble with them, the whole time they had them. Prior to this Medtronic, I have always had "fixed" medium pressure valves, and always had good luck with them. I am all for newer technology, it just that you hear so many bad things about them.......:(

I know I have read some horror stories on other sites and that's what scares us so much. dean felt good for about 1 1/2 months after surgery then the headaches started mild and has not gotten severe. took him to ER on 2/26/13 due to confusion. thought we were in the car on our way to Florida for vacation! That's when they did the first adjustment, discharged next day and symptoms still bad and took him back in to ER on 3/3, where they adjusted it again, it is now draining as much csf as possible. headaches, fatigue, of course anxiety all has gotten worse.

It's a blast!!!! Motorcycles are our means of "quality time". Oh mercy, I had the worst experience with a dr, YEARS ago, at a local hospital that was associated with a university. I went to the ER, hoping to be expedited to my regular Neuro. Well, I ended up admitted there and being treated for sinus infection. After being poked and prodded for a week, with no relief, I was discharged and went to my dr. Turns out, my shunt was blocked in the distal cath. Lol. I proved to be a bad example for a whole bunch of student docs at the first hospital. Lol. If you hit a dead end with the appt on the 9th, for Mr Deans sake, I strongly recommend a second opinion.

Hmmmmmm. I can relate to the confusion aspect. By late Jan, of this year, I couldn't complete a thought and / or sentence. I just plain mentally shut down at times. To top it off, I was "ill as a hornet," hated the lights being on in the house, and wanted/ needed absolute quiet. The slightest of loud noises, sent me through the roof. Reckon it's possible, it could need to be adjusted, "in the other direction"?

Ya motorcycles are great, I live in Illinois where you don't have to wear a helmet, not safe but feels sooo great and free. We sold our bike years ago to buy our house and have just not bought another one although the thought crosses our mind at times! I'm thinking He might need a second opinion at a different hospital.

We go to FL occasionally to rallies where they also don't have a helmet law. Feels weird to not have one on! When my pediatric dr retired, I got this other one who said "call if you ever need me"............well, years later I did need him and he blew me off. So, getting a second opinion was the best thing I ever did. My new doc is awesome!

That's great that you have a great md. I really like the guy we go to but it never hurts to get a 2nd opinion.

That's for sure! :winky:

Thanks for everything:)

Yes ma'am! You and Mr Dean take care, I am praying he gets relief soon. Please post an update after his upcoming appt.

I will You take care as well!

one of the first on the planet
 

Not sure about the seizures, I am a guinea pig. I try to keep my neurologist updated with any changes, so that he may pass it on to his colleagues, I know when there is an issue with the shunt, headaches are so bad it makes a migraine seem like a bump on the head, you may develop vertigo. Generally there are two ways to see if the shunt is operating properly, a spinal tap and/or an opthamologist looking in the back of your eyes to see if 5he ventricles are swollen. I have had five headaches in my life, had to have brain surgery for each one, I have has a shunt since 1970.

Wow thats great that you r not having any problems, but you just started having seizures too right? Was it after a revision that you started having them, and do you have a programmable shunt? My husbands is a programmable one and it seems that a lot of people have trouble with those. what type of seizure med do you take and does it make you feel all spaced out? What type of seizures do You have??

one of the first on the planet
 

I have not had to deal with overdraining, however, my understanding, is that if the shunt is functioning properly the ventricles should reduce to their proper size. Ventricles enlarge due to the pressure and fluid build up. I believe that unfortunately if he has a spinal tap and/or has an opthamologist look in his eyes. I have had 5 headaches in my life and wouldn't wish them on anyone, they make migraines look like a bump on the head, generally the best place to be is in a dark room with your eyes shut, however, the issue there is when the shunt is not functioning correctly it can lead to Vertigo, which means it doesn't matter if you're standing, sitting or lying down. Five headaches, five surgeries no issues.:winky:

Thanks Patti! I hope you and your husband the best of luck with his surgery! We will be praying for him. Please keep us posted.

My husband was having severe headaches before surgery, all this other stuff is new since surgery. What symptoms is your husband having other than the confusion? Does he now have hydrocephalus from the Encephalomalacia? I read up on that was not familiar with it. It is softening of the brain tissue right? Have you gotten a second opinion? It may put your mind at ease. Unfortunatly my husband didn't have a choice the fluid was making his ventricles so large it was putting pressure on the brain. He really suffered with headaches the week before his surgery. It was real bad! so his symptoms were relieved for about 2 month, then all this started slowly and eventualy getting worse. We see neurologist Tuesday.
Some people have no problems with their shunt at all. Good Luck. I know its a hard decision to make.

So dean had his first neurology apt for the seizures, going to do a sleep study with a EEG. But he also found possible neuropathy in his legs :( Put him on new seizure meds. So hopefully we find something out before we go to neurosurgeon on 19th. Still having bits of confusion, headaches bad, and extreme fatigue. Not sure if its all related to shunt or seizures??

Patti~What have you decided for your husband? Did he have the surgery yet?

Well dang. I was hoping this appt would reveal more answers for Your husband, as opposed to more test! Hopefully the neurosurgeon can tell you something more on the 19th. The symptoms sure sound like a shunt issue but, I have never had any seizure issues either. Praying for you both.