Question: Yes, please. I do have a VP Shunt - installed from having a massive subarachnoid hemmorage in 1997. Been having a lot of problems lately - ;ast 5 or 6 years or so and they are getting worsed...nausea, headaches in the back of my skull where the valve was put in, tenderness, lethargy, tired, pain down my right quadrant. We cannot locate anyone in the area willing to do a shunt o gram. Is it true that as long as I am not vomitting I should be ok? Is there anything else I could check for myself to ensure it's not a VP Malfunction? Too much pressure in the back of my skull and pain, tenderness at the valve entry point. I am not feeling well at all...been queasy off and on for at least a week. I am feeling a salty taste going down my throat, but no coughing . But my abdomen hurts - stings, actually on my right side. So does the area where the valve was inserted. I feel like something may be infected or perhaps over/underdraining. Help, please?

I've already had two MRI's indicating the ventricles are slit. My Neuro says I have White Matter Disease now & edema. I am also having problems with my balance (disequilibrium), hearing & some blurred vision. And understanding spoken conversations. It's all intermittent. I have been very sleepy latelty and very disinterested in everything - that is unusual for me. I rarely leave the house.
It is difficult for me to organize my thoughts to get anything accomplished at all.

Sorry, didn't see the Medications Tried - Gabapentin (for feelings of electric shocks throughout my right side of body & head, however it hurt my stomach & I stopped taking it. Lyrica for pain. Hydrocodone for pain (stopped taking it). Valium for the Severe Tinnitus (stopped taking that also - made me too drowsy). They did try me on ADHD meds to help my thinking, and it does, however I'm concerned about my blood pressure so I've backed off that for now. Am taking Enalapryl & Amilodipine for hypertension also. They tried NSAIDS for pain however that gave me heartburn so I stopped those.

Thank you for your response, Dr. XXXXXXX D, it is much appreciated.

Unfortunately my Neurosurgeon who performed the surgery is 1,000 miles from here. The one I am currently seeing has not even looked at the area except to touch it once and I told him it hurts very badly and is tender. He just nodded his head.

Aside from nausea the past month I now as of yesterday have lost my sense of taste.

Our ER's here (in XXXXXXX KY) are poorly staffed and the few times I have been there have not been positive. Other than attempting to drive myself back to Johns XXXXXXX in Maryland I am unsure what to do. Unfortunately my eyesight is now blurring a bit also as well as more double vision than usual.

My questions to you are -

1. Do you believe the demyelination/sclerosis of the white matter will worsen or remain the same?

2. is there anything I can do to prevent it from worsening?

My quality of life really is deteriorating quite a bit.

Pain meds are not helping.

Thank you again for your time and response,
XXXXXXX

Also, I have never had a shunt revision since it was initially installed in 1998. Don't you think I might need one yet?

Thanks!

Hello Dr. XXXXXXX D -

Thank you so much for your response. It's interesting that you have told me more in these brief sessions than 4 Neurologists & 2 Neurosurgeons have told me here in Kentucky in the past 12 years.

My current Neurologist informed me recently Norton Health Center was unaware how to do a Shunt-O-Gram, which is why we'd tried going to Johns XXXXXXX

I will continue to pursue it - I cannot thank you enough for your help.

You are incredibly knowledgeable - I truly am amazed. Thank you!

I just thought I would share with you -

I was taken by ambulance to Norton Healthcare (Brownsboro campus) a couple of years ago (BP was 210/135) - they kept me in the ER & administered saline IV's, discharged me at 9PM. They lost my clothing - I had no transportation home. They threw me some scrubs to wear with no shoes. I waiting until 4AM in the lobby as they attempted to call a taxi. No taxi ever came. Eventually that evening a fire alarm went off. Someone had said there was a small fire in one of the storage areas. None of the guards knew what to do and I asked "what about all of the patients upstairs" - the guard said to me, "I don't care - do you?" No one at the front desk knew what the procedures were in the event of a fire, since they were all rental security guards.

Many of the patients began to leave - one of them offered me one of their taxis and I took it and finally arrived home. The hospital themselves did not evacuate anyone.

A few days later I drove myself up to NJ to Capital Health Systems where they admitted me and administered IV heparin for a couple of days, and I had done much better after that. So that was my experience with Norton. : )

University of XXXXXXX - I went for an evaluation approx. 6 months ago. As I walked behind a rent-a-guard who was taking me to the evaluation area he suddenly whirled around and slammed me up against the wall, slamming my face against the wall sideways. I was stunned and kept asking what was wrong, tried to tell him be careful I had a VP shunt. He then slammed me onto the floor. He then said I did not follow his instructions when he told me where to go.

I told him I had a hearing deficit and could not hear him (my hearing aids tend to run out of batteries quickly) and that I had a VP shunt.

I filed a complaint with the U of L and they said they reviewed the video and found no wrong doing on the part of the guard, yet I was told later also they fired that particular security guard company. This is our healthcare here in Kentucky for many of us with disabilities.

So again, you see why I'm just taking my chances at home until perhaps a miracle happens and I can get myself to somewhere like XXXXXXX Clinic or Johns Hopkins?

Thanks again for your time!

Thank you, Dr. XXXXXXX D. - that is life here for some.

I felt it was rather horrifying also. It's nice to find someone who agrees. It seems people accept this as a way of life here now. I'd spoken to a few attorneys hoping for some help however they indicated it was a "conflict" for them, so I've given up - too much mental energy and I don't have much to spare. : )

I'm doing my best! Appreciate all your input. Truly.

Thank you again, XXXXXXX

Thank you Dr. XXXXXXX D -

This is life for many of of us here in the grand USA.

I've got an even better one for you - after getting turned away at Johns XXXXXXX after I was able to get someone to drive me there (almost 800 miles), and stranded in XXXXXXX I took a cab to NJ hoping to get some help there - a hospital there simply took some blood work then discharged me (and my medical service dog) with no further transportation or funds - at that point I was having difficulty because of the overdrainage & was unable to reach my friends or family members - I was struggling quite badly (this was last July) - so I camped out with my medical service dog under a picnic bench outside for two nights until I could get transportation back home. Thanks to a nice young man at a bank he arranged to get me to the Amtrack train station where my dog, myself and 4 carry on pieces of luggage back to at least Maryland & Johns XXXXXXX

In the XXXXXXX DC Amtrak station my medical service dog and I were confronted and assaulted by an Amtrak Security Guard because I had dropped a piece of my luggage - this guard and her dog came at me much like the photos you see from Abu-Ghirab - it looked like a XXXXXXX Vick dog fight. Her security dog was lunging at me and my medical service dog. My medical service dog laid down in front of me to protect me.

This was in front of approximately 1,000 people in the middle of the Amtrak station in D.C. and no one said a word. Eventually two other security guards came and rescued me and my dog, helped me with my luggage and drove me to Maryland where I was not able to get back into Johns XXXXXXX (the MD I needed to see was not there although I scheduled all this before I'd left Kentucky), but I was eventually able to get back to my home here in Kentucky.

At this juncture I feel my chances are better with remote assistance.

I'm not sure recovery is going to happen however I'm hoping to stay at least comfortable. I'm sorry, too, for the way many patients here in the USA are treated.

Thank you again Dr. XXXXXXX D. You are very, very good. Warm regards as well.


Ok, I'm sorry, I forgot to close the question but it won't let me!