va shunt problems please help
 

I don't know how much more i can take its driving me crazy it itches so bad, hurts and is tender where i have the shunt. i tried talking to the surgeon about it but won't listen to me. If anyone has gone through this please let me know what i can do?

When was it placed? Mine was REALLY itchy and tender for the first few weeks. My neurosurgeon was concerned about hurting me when he took off the bandage because of all tape but instead of being painful, it relieved the itching! If your shunt is older, then I would get a second opinion that everything is okay and it isn't infected

It will be 1yr feb 19 2014. The last time i saw the surgeon i told him it itches so bad all he did was look at it then say it was fine and that i should see someone like i was crazy have been back since. I don't know what i can do i have tried creams allergy meds but nothing i do works.

As both a healthcare professional and a person with a chronic disorder that is not well understood, I expect my healthcare provider to take my concerns seriously, which means that if I tell him/her that something is "not right" then they need to address it, even if that means helping me understand why I shouldn't be concerned. Just telling you not to worry about it, it is not enough, especially with a condition like hydrocephalus where the early warning signs that you are having a problem vary greatly from person to person.

I have many examples throughout my life where doctors treated my concerns with the respect they deserve and where they didn't. In the summer of 2009, I had two VP shunt revisions related to a peritoneal cyst and then a VA shunt placement when it became clear my abdominal cavity had enough of being a reservoir for CSF. I relocated to another state that fall and when I had my first appointment with my new neurosurgeon, I asked about a bulge in my abdominal cavity that wasn't there before. The doctor said that I had a "unique abdominal landscape" (and I was quite overweight at the time) so I shouldn't worry about it. When I persisted, he ordered an abdominal CT "as a baseline." He called me with the results about a week after I got the scan and said "everything was okay" and that I should follow up with him in about a year.

Over the Christmas holiday, my sister and I went shopping and while we were in the fitting room trying on clothes, she voiced concern about the bulge in my abdomen that "looked like something out of Aliens" and suggested I get a copy of the radiology report. When the report arrived, radiologist clearly stated that I had AN ABDOMINAL HERNIA, :eek:which my neurosurgeon never bothered to mention when providing me with my radiology results.

The whole thing turned out very positive because I wound up losing 85lbs after my general surgeon recommended that it would help decrease the likelihood of such a thing reoccurring and I was highly motivated to avoid any more surgeries but I definitely got a new neurosurgeon!

I hope that provides you with some direction/understanding/support :winky:

Thank you so much. The surgeon i saw was not my surgeon who did the surgery. I have had 4 in a little over a yr 1st to remove a brain tumor 2nd to fix the fluid build up 3rd vp shunt 4th 5/23/14 VA shunt. I have a app to see a pa that i have seen before about what's going but not until 1/28 the pain is getting really bad i want to cry. Its so nice to talk too someone that understands what I'm going through i just try to stay strong for myself family and friends. I just wish i knew what was going on i don't know how much more i can deal with.

Wow, you're tough! I can relate...several years ago I endured what my husband dubbed "Shuntfest" (complete with tee shirts) which consisted of three shunt surgeries, daily wound dressing changes and then a wound vac, while at the same time, my husband was tryiing to complete and defend his doctoral dissertation and we were trying to put our house on the market to move out of state. Oh and my two collies contracted pancreatitis, one needed to be hospitalized for a few days and then endured the dreaded Cone Of Shame.

I had a revision when I was 18 (the week before freshman orientation in college!) where I had this shooting numbing pain down the left side of my neck that came and went for probably over a year, and no one could ever tell me why I had it. In nursing school, I established the hypothesis that it was caused by neuro or musular damage caused by the position my head was in for such a long time during the surgery.

I had a tight feeling over my previous shunt site and this one too (oh and the hair growing back is makes it really itchy). I wonder if your issue is a more extreme version of that. If so, then you may want to look into some alternative pain treatments. Since attention plays a large part in our perception of pain, meditation has been found to be a very effective treatment. I can't sit still long enough to meditate but when I was discussing my activity restrictions with my(totally awesome) neurosurgeon, he recommended that I try Tai Chi. I found a Tai Chi group on MeetUp.com and absolutely love it! Since it is a moving meditation, I feel so relaxed and centered afterward.

You have already been through so much, I'm sorry that you have to go through this too. You clearly have alot of strength to have endured what you have, so I have no doubt that you will get through this too. Hang in there!

Thank you. i dint have my head shaved the last surgery just two small spots and the pain is the worst after i have been laying down and gets better when I'm sitting up but doesn't ga away. after the last surgery i was pain free had some itching but got better in time it's been the last few months that the pain came back then the itching started. my family knows me as being the strong one in the family but its so hard being strong for everybody when i just want to give up. we both have been through a lot i just hope things will get better.

vp shut query
 

I have some query reagrding vp shunt
can anyone help me how to create new thread for this in theis web site?

please

hello smaj

To start a NEW THREAD..... enter the Forum you wish to post to and look near the top and bottom left of the page where you will see the NEW THREAD button, click, type and submit

The pain is better when I'm laying down and gets bad when I'm up even get sick to my stomach. If anyone might know what's going please let me know.

Well, I'm with MegAlfOCon on the getting a surgeon who will really listen. One can have an infection without the incision looking like it, one can have issues with scar tissue in places or one could have the pressure set wrong, just to name a few possibilities. I'm only experienced in the pressure issues - if changing position really makes a huge difference, that could be part of it. But you've written where position was better being upright and a different post about lying down being better. For DD even at her best setting, she can under AND over drain (throw in a cold/flu and it can be an almost certain stay in the hospital). Lying down helps when over draining (for chronic over draining the setting gets put up a notch), sitting up helps when under draining (for chronic under draining, setting gets put down a notch). Wash, rinse, repeat until one finds an ok setting. When we could not find a good setting, we've been in very low pressure situation without an antisiphon, later it changed to high pressure needing an antisiphon and even later where the antisiphon wasn't enough. Most people just need an antisiphon and I didn't think most people shunted as an adult get the freaky pressure/compliance problems little kids sometimes have.
If you have consistent positioning issues, tell them and ask if your valve needs to be adjusted. I would also consider asking them to do a shunt tap or lumbar puncture to test the csf for infection and whatever read on the pressure they can do (those are not the best pressure readings but ...).

Agree about the suggestion about over draining. That is what was happening to me before my recent revision and I'm uncertain if I need to "go up a notch" now because I've been having a lot of sinus/ear pressure issues a the end of the day that I had before my revision, but without the foggy feeling. I'm not sure if it is TMJ problems that I caused by clenching my jaw all the time when I was trying to focus or if it is caused by over drainage. I've been for muscle tension more often, especially when I'm on the computer or driving, and noticing that my jaw, neck and face are clenched more often then not and relaxing everything and it seems to have helped a bit but not enough and I'm really fluid sensitive. My neurosurgeon has commented that my pressure setting is high but that could be from being shunted since age 6 months and only got a programmable shunt almost 5 years ago, so my ventricles are used to being really dilated.

Anyway, in addition to helping me "think", I guess the major point is that it is important to know your body and if something doesn't feel right then it probably isn't. It is important to be open minded when talking with a provider you feel is really listening because our body is a system so when something changes, even for the better, something else may get thrown off. I dream that someday it might get easier. =P

When i started having bad headaches i went in i knew something was wrong but would not believe me then i started having seizures too then my doctor went back in chart to find out a small mass was found. I had another mri done to find i had a brain tumor by my spinal cord that's been removed now. I know something is wrong the pain different from the headaches i had just trying to get someone to listen to me is really hard but I'm not going to give up. I was fine when i was laying down to take a nap but now that I'm up my right side of my head kills even neck with blurry vision. I'm so glade i found this support group so i can talk to people that know what I'm going through. Thank you so much for your input I'm still getting used to all this it will be 1yr feb 19 ( 36 yrs old when i got it ).

I see my neurologist in the morning an the neurosurgeon the 28th. Been getting really sick to my stomach and just foggy will space out not sure but might be having seizures.

Partial seizures would totally make sense with Nausea and "cloudy thinking"! :Ponder:I wonder if your doctor would order an EEG before your appointment to assess? Keep us updated and hang in there! :)

Nothing was done have to wait until the 28th all he wanted to do was give me a nerve block but i said no because it dint help last time. I'm trying to stay strong but its so hard having really bad moode swings before all this i was fine then the surgeries came the moode swings it was getting better but now its bad again. all i want to do is sleep and stay home away from people but can't keep living like this i just want my life back with no moode swings.

:hug: I'm sorry that didn't get you anywhere and that you are still frustrated and in pain. I'm not surprised that you are having mood swings with all you described, both from a stress perspective and an ongoing pain and probably brain injury perspective, given that you had a mass. I wonder if anyone has suggested neuro psych testing. Several studies have linked mood swings to changes in working memory and processing speed. I play Luminosity to "train my brain" (and track changes too) and noticed a definite decrease in my problem solving ability (mostly math calculations) and processing when I was over draining. I was also ALOT more emotionally reactive and withdrawn, which is really not me. When it was really bad, I had difficulty understanding what people were saying and finding the right words for what I wanted to say. It was quite a humbling experience :icon_redface: , given that (if you haven't already figured it out) I'm kind of a know it all :winky:

Given your medical history, the problems you are experiencing may not be detectable with scans or an EEG because it may be related to how your brain receives and processes information. Perhaps an fMRI or PET scan might give you more data but those are only being used in research. I had the basic testing, i.e WISC III or IQ test, when I was around 9 and again at 14 and it has been extremely valuable to help me understand how I think and why I'm better at some things and not so go at other so that I can either communicate that to people or figure out a solution that allows me to use my strengths, i.e. I can't listen and take notes so I use my people skills to ask someone for a copy of there notes and most people are happy to share.

Although I haven't been retested as an adult, I continue to have the same cognitive strengths and weakness so because I had the testing as a kid, I know what to look for to figure out what is "normal" for me and what is off, so Luminosity works just fine for that.

I will keep you in my thoughts!

No one has. Does it ever get better and does any memory game help? My moode is up and down i cry really easy and get mad over stupid things it makes my job really hard to deal with.

Yes, it does get better, if you "work" at it. I put "work" in quotes because it doesn't take a lot, just a few minutes a day. One of my new goals is to sit down for a few minutes and write down my ideas/thoughts on note cards so that I can improve my ability to put my thoughts into words and then structure those thoughts. I tend to have spaghetti brain, which makes it difficult to communicate with others at times :confused:

I found this site with free games on it. I need to play games like the Spiderman game to increase my verbal fluency, although I suck at them. In general the games that are the hardest are probably the ones you need to do the most :p
http://www.memory-improvement-tips.com/brain-games.html

I'm listening to the audiobook, The Tipping Point, which provides different examples of how little things make a big difference. I have experienced that to be true in my own life, small changes lead to big changes over time, if you just stick with it, hence why it is better to start with little things, like doing 10 minutes of activity (be it walking the dog, formal exercising or dancing around the kitchen to your favorite song) or listening to an upbeat playlist on the way to work to get your energy up, or smiling at one new person every day. Those things add up over time.

Thanks for helping me remember that, because writing that out has helped me better understand how powerful that has been in my own life. :hug:

I finely got answers its nerve pain from the shunt i was put on gabapentin for the pain i hope it helps. I go back for a follow up in 3 weeks if that don't work i will need to see the neurosurgeon to see what needs to be done next now its just a waiting game.

so cofused
 

Hi I had a vp shunt put in in August of 2010 due to psuedo tumor. I was diagnosed with it in April of that year when I went to get my eyes checked. They thought I had MS at first but the MRI was normal just extra fluid. When I had my first spinal tap done my brother said the neurologist's faces were like "why isn't this woman in a coma and how is she still functioning?" the pessure was so high it went over the pipette they use to measure opening pressure.

The funny thing is I had been living with the pressure for 6 years before I had anyone check it out and I wouldn't have had it checked except I lost half the vision in my left eye. 6 years prior I had a headache/migraine for 3 months and double vision at the same time. when the double vision went away I noticed the blind spot but I didn't have insurance so didn't get it checked. Other than that I really had no symptoms that were outstanding. Oh I would get dizzy or forget things but I thought it was side effects of my bipolar meds.
Any way since I had the shunt put in I have had a pain in my right side that comes and goes and feels either throbbin or stabbing and I am on topomax to keep from having headaches. I asked the neuro surgeon to shorten the tube thinking that that was the cause of the pain and he said the tube was like a piece of cooked spagetti so it couldn't be that and he wouldn't shorten the tube either. I had to have my gall bladder out because of stones (took the docs 2 years of me being in pain to figure that out all because I did not show the right response on my first ultrasound:mad:) The pain in my side is still there. I have balance problems worse than before the shunt and am very easily irratated and have whooshing in my ears from time to time. The neuro nurse said I had an inner ear infection and that my pc needed to see to it.

My biggest frustration besides the pain is that the neurosurgeon and neurologist think everything is fine. Before the surgery my white cell count was in normal range now it stays elevated the last time I went in it was 21 my doc asked if they put me in the hospital, I told him no they gave me 2 different antibiotics to take and sent me home to take them.

When they did an xray to see where the tube was they said it had looped and the tip was under my liver when I was told it should be down by my lower abdomen.( that is how long the tube is)

Can anyone help me figure this out I tell my doc's and they think because I don't present with their "symptom list" that nothing is wrong. My brother had leukemia when he was 8 so I know first hand that people don't go by the book the doc uses. What else can I do to convince them there is something not right:confused: I should be feeling better not worse I have even had times where I felt like my feet were glued to the ground and had to have help just to get to my front door after feeling ok and running errands.

Sorry this post is so long any advice would be greatly appreciated :eek:

so confused
 

forgot to add that I am on medicaid and so my chances of getting a second oppinion is slim to nil

Its the tube that's causing thie pain i had the same thing so i got va shunt put in. I'm having the same problems your having with my balance i sometimes walk like I'm drunk, ear noises, mood swings I'm just sick of it all. all i can say is don't give up keep on the neurosureon until u get help don't take no for answer. until something is done. last time i went in i strated crying I'm in so much pain i can't take it anymore. stay strong you made it this far don't give up. I go back in on fri the gabapetin is not helping i just hope something is done but I'm sure that won't happen.

Thank you I see my neurologist in April. My balance gets so bad I had my doctor give me a four point cane I feel rediculous with it and don't use it as much as I should, but to almost fall over just standing still when people look at me when that happens I just tell them the floor moved on me LOL :D I will tell the neurologist again about the pain and suggest the va shunt see what he says. When I was first diagnosed my psychiatrist said "so it really is all in your head" and laughed. (he had a weird sense of humor). Now if I can just figure out why my white cell has stayed elevated since the shunt was put in that would be great. It has been elevated for so long now that I don't even run a temp anymore.

Your white count goes up when your body is trying to fight something off i wonder if its trying to fight off the shunt due to it being a object in your head. I'm not a doctor or anything close to it but i think the white count going up has something to do with the shunt. I have not got to the point that i need a cain yet who cares what other people thinkif you fall and get hurt or even bump your head where the shunt is. I know what its like too have people look at you like that i have tremors that get really bad at times that people will look at me and talk about me behind my back. That will never change all you in just walk away i hope things get better for you don't give up and keep fighting.