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...
As many of you know it has been suspected for quite some time that I may have CSF Rhinorrhea. Most recently, my nose has been running a great deal again. (And no..it's not allergies...Yes....I'm sure. LOL.) Many of you also know that I had some problems with Dr. Friedman and because of the necessary tests were not done to determine whether or not I have this condition.
As you now know, I was in the ER last Friday...and got very little relief. As such, things are progressively getting worse. My shunt is swollen, my head, neck and back are all hurting. (I haven't had severe neck and back pain since before my shunt.) So, I'm wondering if any of you know if a CSF leak could cause our VP shunt to malfunction? I'm not even sure if malfunction is the right word. By all tests...and by tests, I mean CAT scan, MRI, X-Ray and physical palpitation...it would seem that my shunt is working properly. But, for me, living with this thing...I can tell you that while it may work it doesn't work consistently. It seems that when my pressures are up, a build-up occurs of csf, my shunt swells, I have pain for a week or more...and then the valve opens and I have sharp pains in my jaw and abdomen. And then the pattern starts all over again. What if anything does the CSF Rhinorrhea add to this problem? Anyone?
Thanks in advance for your help.
Khrystine
As you now know, I was in the ER last Friday...and got very little relief. As such, things are progressively getting worse. My shunt is swollen, my head, neck and back are all hurting. (I haven't had severe neck and back pain since before my shunt.) So, I'm wondering if any of you know if a CSF leak could cause our VP shunt to malfunction? I'm not even sure if malfunction is the right word. By all tests...and by tests, I mean CAT scan, MRI, X-Ray and physical palpitation...it would seem that my shunt is working properly. But, for me, living with this thing...I can tell you that while it may work it doesn't work consistently. It seems that when my pressures are up, a build-up occurs of csf, my shunt swells, I have pain for a week or more...and then the valve opens and I have sharp pains in my jaw and abdomen. And then the pattern starts all over again. What if anything does the CSF Rhinorrhea add to this problem? Anyone?
Thanks in advance for your help.
Khrystine
What a disease this is every day something new!
I don't know anything about Rhinorrhea but I can tell you that a CAT scan, MRI, or X-ray can not tell anything about the patency of a shunt unless you were injected with something directly into your resevoir before the proceedure. I am not sure what you mean be palpitaion other than pressing on the resevoir.
I have noticed a similar pattern. It started out pretty consistant for a month and a half then went away then possibly started again a few days ago. Will let you know if it continues.
So sorry to hear you continue to have trouble.
TJ
This is where the word play comes in to it with me. They say , it is working, pumping but I say , how then is my pressure still high? No answer.
It is a pattern but havnt pinned it down yet. My shunt also swells and becomes very sensitive, headaches climb and vision gets blurry.I also have a constant runny nose but one dr said it was smoking anothe rsaid it was IH. So, go figure!
I have learned to accept, ignore all this stuff. I just try to get on with it. I am sooo fed up of trying to get an answer from the drs. It never happens and when they do, it doesnt make sense.
I am keeping a forest some where busy with all the nose blowing! I also have a blocked nose a lot, when pressure is high.Like a cold but I know its not.
My mom told me, I was too old to have a cold! that at this stage I must have caught them all! Cath.
TJ...I mentioned to the head of NS there exactly what you said about the irrelevance of a CAT scan and XRay in determining the function of my shunt. He adamantly disagreed...and boldly stated that they refuse to do a shunt o gram or shunt tap due to risk of infection. He also stated that clearly my LP results indicated that my pressures were normal and there was no cause for me to be hospitalized as there was nothing wrong with me and my shunt was working fine.
I cried...and he didn't care. I'm now at home with a still swollen shunt...just waiting for the other shoe to drop. (Sigh)
Khrystine
Emerson
Like I said above, I dont even tell the drs any more about it. I just try to deal with it myself. I cant bear the thought of going to an Emergancy room, which helps my decsion to stay put. It would only yield hours of waiting, the cat scan scam, to be told everything is ok by their standards, and sent home. I cant do it anymore.
You must try, Im afraid, to find thinhs that worl for you at home.Regular rests, pain killers that dont turn you in to a zombie, and faith that it will pass.Hopeless advice I know...
It is strange tho, that you felt no relief at all from the lp.They must have relieved the pressure some what. Which makes me ask, hesitatly, could it be a very bad migraine? I have had a dingger for a few days now plus a pressure hd. I cant do a thing. I am down to being able to asnwer one post a day.
Have you tried your migraine meds? I wonder if you are caught in that vicious circle of pain on pain? If, you could just somehow get a break in the pattern maybe it would be ok.
Im sorry Kyrts, I am not really helping here. just know that I do know what you are going thru and feel for you. Hugs my friend, Cath.
I am so sorry you are still going thru all this stuff with DRs and ERs. Caiti told me she would rather die at home than go back to the hospital. Now isn;t that a great way for any of us feel about a place that should be helping us!
I just wanted to add that Caiti often experiences the ups and downs with the shunt. But she actually has 'fluid' coming out of her ears, and her hearing is impaired when this happpens. She compares it thaving your hearing blocked when you get water in your ear from a swim. But i can see the fluid coming out her ear when this happens.
Such a strange disease. I know this sounds silly, but Martha Stewart says rubbing a lemon on your forehead will help a headache. Sad to say I haven't tried it yet, but will today.
Keep the faith and, above all, don't give up. We're all praying and pulling for you.
Love and hugs,
Judie
I don't really know anything CSF Rhinorrhea. All I know is it seems we are all developing new or worsening symptoms everyday. =(
I have read in my research of shunts (just in case I ever need one) That over draining is a huge problem with vp shunts and it tends to mimic shunt malfunction. All IIH symptoms return. Some say it makes the tubing in the back of their head bulge & causes them pain. Especially if they've endured nerve damage during the surgery. In reading this, It states that the only thing to do is wait it out. Apparently it resolves itself. That could explain why you have so many ups and downs. I don't know.
I hope you find the answers you need.
Betty
I guess it is just a difference in how your NS and mine approach shunt trouble shooting. Mine does do a CT to look at ventricle size but is pretty adamant that the only true way to determine if a shunt is working is a nuclear study. Even the shunt tap he does not consider 100% and the shunt tap and nuclear study both require a needle in the resevoir hence a potential for infection so it he could tell that it worked with the CT I doubt he would subject me to possible infection if he did not feel I needed it. Remember that I have already had an infection.
I guess what I am saying (and please dont get mad at me) is that you need to find a better NS. I know that has been a challenge in your area. I hope someday you find one that knows what the hell he is doing and ultimately gets everything working right.
And what are they talking about that 24 is normal. And why didnt you get any relief. Do you think it is something else other than pressure causing your pain?
As for the swelling. Can you explain that a llittle more? What is swelling?
I am also curious about the CSF thing because I have had a wierd runny nose when I put my head down and wonder if that might mean something.
Sorry to hear you are struggling and that no one seems to be able to give you good answers.
TJ
I saw your post about your hospitalization and the position you are in between OSU and your local docs. I really wish I could be of more help. You sure have not had much luck.
I often wonder about how rare we are and then how rare is it that shunts don''t work right. VP shunts are vital for those with Hydro and their numbers are much higher than ours. And then again we all know that we are here because we are needing some kind of support. I have now met 4 people face to face that have IIH. 3 of the 4 have shunts and they worked the first time, no revisions.
I have no idea where I am going with this post but I guess I am trying to say that it is no wonder we can't find good doctors when this is so rare and for many when we do get shunts they work. So docs just assume that they go in, do the surgery and expect we are good to go. They are not used to dealing with us problem children and that is kind of what we are here................
I wish you the best to find a doc that really cares enough to help you figure this out and empathize with your frustration over this whole ordeal.
Hang in there Khrys.
TJ
kbooth: CSF has a metallic "taste." (And no. tee hee hee, I'm not suggesting you start tasting your buggars!) You can sort of sense it in your drainage in the back of your throat, you know? When it gets like that, I think the doc can use a litmus type paper to test it.
I bet it comes down to the docs not being comfortable with not having the answers. They can't just empathetically say "I don't know... I believe you and we will work together to figure this one out, but I don't know" or "It's beyond my capabilities." That would show so much more respect than just being dismissive.