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-   -   va shunt problems please help (https://www.neurotalk.org/hydrocephalus/199116-va-shunt-please-help.html)

jroones 12-29-2013 07:08 AM

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?

MegAlfOCon 12-29-2013 08:36 PM

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

jroones 12-30-2013 12:08 AM

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.

MegAlfOCon 01-01-2014 03:01 PM

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:

jroones 01-02-2014 02:37 AM

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.

MegAlfOCon 01-02-2014 08:48 PM

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!

jroones 01-02-2014 10:57 PM

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.

smaj 01-08-2014 04:24 AM

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

Chemar 01-08-2014 07:18 AM

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

jroones 01-16-2014 04:19 AM

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.


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