Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Well, it has been 2 months since my programmable VP shunt was put in and as many of you know I have had five or six adjustments since. Initially I had low pressure HA's, but most recently, it was thought that I had a high pressure HA and after a LP with an opening pressure of 240 my doctor dropped the shunt setting down to 70. Apparently, my shunt can only be dropped down one more setting. Right before Christmas I was hospitalized because the tube had wrapped itself around my liver. It has since moved again and I was able to enjoy the holidays with my family.
The problem is that now I am back in Rochester, NY (FINALLY) with my husband and kids and I am still having trouble. (And I have no doctor here anymore.) Christmas Eve I began having vertigo, which historically has been associated with high pressure HA's.....I am still having vertigo. Additionally, as embarrassing as it may be to discuss, I was suffering from some constipation from the meds I was on. When I first got home, I was straining in the bathroom and had horrible head pain around the shunt valve on the top of my head. Now, when I laugh or am straining in the restroom, I am getting horrible head pain on the right side of my forehead and between my eyes. My shunt still swells when I have head pain, and as were the case prior to surgery, I have had neck and shoulder muscle stiffness/pain. Furthermore, I am sleeping for ridiculous amounts of time. I typically sleep 14-18 hours a day....at least. Beyond all that, my tube still hasn't settled into a track and I am dealing with sharp stabbing abdominal pains daily.
There is no doubt about it....The last thing I want is to endure more surgery....but, with all I've been through and with all I'm still experiencing I can't help but feel that my shunt isn't working properly. What do you guys think???
The problem is that now I am back in Rochester, NY (FINALLY) with my husband and kids and I am still having trouble. (And I have no doctor here anymore.) Christmas Eve I began having vertigo, which historically has been associated with high pressure HA's.....I am still having vertigo. Additionally, as embarrassing as it may be to discuss, I was suffering from some constipation from the meds I was on. When I first got home, I was straining in the bathroom and had horrible head pain around the shunt valve on the top of my head. Now, when I laugh or am straining in the restroom, I am getting horrible head pain on the right side of my forehead and between my eyes. My shunt still swells when I have head pain, and as were the case prior to surgery, I have had neck and shoulder muscle stiffness/pain. Furthermore, I am sleeping for ridiculous amounts of time. I typically sleep 14-18 hours a day....at least. Beyond all that, my tube still hasn't settled into a track and I am dealing with sharp stabbing abdominal pains daily.
There is no doubt about it....The last thing I want is to endure more surgery....but, with all I've been through and with all I'm still experiencing I can't help but feel that my shunt isn't working properly. What do you guys think???
I'm glad to hear you're finally home with your family, but I guess it's bittersweet considering that you're still in pain and have no doctor :-/ I've had my shunt for 14 days, and while I thought this was going to be easy for me, I'm realizing now that it is not. Whenever I walk i get the stabbing pain in my stomach that you had mentioned. Sometimes it is on the same side as my incision, sometimes it's not. My NS says this is normal and will go away once my body gets used to the shunt. For the first 9 days I was headache free, on Christmas eve I got a headache and I have had it ever since. I spoke to my NS about this and he said to give it some time, maybe my body just needs to adjust to the change. If it's not better by Friday I need to go in for testing, because it may be clogged, broken, or need to be adjusted.
So it seems to me like we have a lot of the same issues, and my doctor seems to think everything is pretty normal. I think it's crazy that I still feel like this, so I can only imagine how you must feel after 2 months. Hang in there. Hopefully things will get better soon!
Sorry I don't mean to be talking about my problems when this is about you but I guess what I'm saying is, hang in there, even though it doesn't feel like it you will get relief adventually. It does sound like something isn't right with yours and maybe you will have to have another surgery, but if it takes one more to make these new problems go away and the old problems go away than it'll be worth it. Oh and after my last surgery about 3 wks post op I had the problem with not being able to laugh...I'd get a sharp intense pain in my head.
I feel like this is somewhat negative or not helpful at all but I'm a big time shunt believer even though it took me 7surgeries to get mine right. I still believe without this shunt and all 7 surgeries I went thru I would've been alot more miserable doing nothing.
Brooke: Any information you can offer me is helpful. Talk about yourself...believe it or not I learn a lot when you do. These posts are never about me or you...they are about "us" as we are all going through this together, and unfortunately share a lot of the same experiences. Thank you for the input.
Khrystine
I feel bad that I got your good day and your kids didn't, but I'm glad you did get a good day. I feel I owe them... Next time the family is in Columbus... I'll come paint them!
I'm afraid to say I don't know about your shunt. Hang in there.
I too am a shunt believer. But shunts suck. Problems abound with so many of us. But I believe it will get better for all of us. The challenge is weathering the storm. The headaches, abdominal pains, and other assorted problems can really zap my positive thoughts. But I still feel like my VP shunt was absolutely the right choice.
I'm very glad you are home but sorry to hear you are suffering without a local doctor. I like Bax's suggestion about trying the foundation for assistance finding a new doc. Hopefully they can help. (I can't think of a good segue into the next thought so I'll just jump topics.) I have also gotten the bathroom headaches when taking narcotics. My husband and I call them the "poop headaches". :) Whenever I have to take a narcotic I automatically take a stool softener at night before bed. I just use the generic Target kind. No horrible side effects, just no poop headaches.
Keep us posted on your progress. I'm sending good vibes your way.
Bianca