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...
Just wanted to say that coming here has given me so much information and strength to be my own advocate. I was proud of myself yesterday. here's what happened.
Went back to my neurologist yesterday because I was having some really bad ear pressure and whooshing again. I was still only on 500 mg of Diamox and was sure he would want to increase. So the doctor says he thinks my pressure is high and that he wants me to have another LP to confirm. If it is high, he will refer me to a neurosurgeon for a shunt. Wait a minute...WHAT???
I've only been diagnosed for 6 weeks at this point, still on a low dose of diamox. Really, a shunt?
I immediately well up with tears and he said "I don't know what you're getting so upset about." Well, that pissed me off. So, I said "You just said that you are thinking I need brain surgery and you don't know why I would be upset?" Then I started talking to him like someone who has actually done a little research. I said I think you need to increase my diamox to 1000mg and he says I don't think you can tolerate it. WTF? I said "Well, we don't know if we don't try". Then I said, "what about lasix if the diamox doesn't work?" And, he says "oh well, that is an option too". So, he upped my dosage to 1000mg and scheduled me for an LP for next week. If my symptoms go away by then, I don't have to have the LP. If not, he'll do the LP, give me a little relief and then we can figure out next steps.
Am I right to be pissed? If I need a shunt in the future, of course I will get it, but I don't think we're anywhere near ready to say that yet. I have paps, but my vision is not impaired, passed my field test, vision is 20/20. Also, I don't have headaches. If my vision is not in jeopardy right now and I'm not in pain, why the heck would he think the next step is a shunt?
Anyway, Sorry this is so long. Just wanted to say thanks to all of you. If I didn't have this board I would not be armed with the knowledge to make the best decision for my care. You guys rock!
Went back to my neurologist yesterday because I was having some really bad ear pressure and whooshing again. I was still only on 500 mg of Diamox and was sure he would want to increase. So the doctor says he thinks my pressure is high and that he wants me to have another LP to confirm. If it is high, he will refer me to a neurosurgeon for a shunt. Wait a minute...WHAT???
I've only been diagnosed for 6 weeks at this point, still on a low dose of diamox. Really, a shunt?
I immediately well up with tears and he said "I don't know what you're getting so upset about." Well, that pissed me off. So, I said "You just said that you are thinking I need brain surgery and you don't know why I would be upset?" Then I started talking to him like someone who has actually done a little research. I said I think you need to increase my diamox to 1000mg and he says I don't think you can tolerate it. WTF? I said "Well, we don't know if we don't try". Then I said, "what about lasix if the diamox doesn't work?" And, he says "oh well, that is an option too". So, he upped my dosage to 1000mg and scheduled me for an LP for next week. If my symptoms go away by then, I don't have to have the LP. If not, he'll do the LP, give me a little relief and then we can figure out next steps.
Am I right to be pissed? If I need a shunt in the future, of course I will get it, but I don't think we're anywhere near ready to say that yet. I have paps, but my vision is not impaired, passed my field test, vision is 20/20. Also, I don't have headaches. If my vision is not in jeopardy right now and I'm not in pain, why the heck would he think the next step is a shunt?
Anyway, Sorry this is so long. Just wanted to say thanks to all of you. If I didn't have this board I would not be armed with the knowledge to make the best decision for my care. You guys rock!
WE are women hear us roar! (that goes for the few men on here too, you need to roar at the drs too)
It can be hard to stand up to DRs, you should be proud of yourself!!
To even consider a shunt , I think, is a huge descision. It really needs a lot of thought and medically advise, which , seem to be lacking here for you.
Why on earth would they shunt you when, a) your sight is not comprimised? b) your headaches are tolerable if there at all?
In hind sight, I think they jumped the gun a bit with my shunt, altho, my sight was in danger. But! I got the shunt in Dec 08 and its only in the last few months that my paps have improved. What is helping? The shunt or the meds or...time?
I meet with a new local dr the other day. She was lovely and knew about IIH! Thats big news for me. We chatted, and she passed a commit, and we chatted some more. As I was leaving the room, the commit came back to me and I questioned her.
She had done some work in England, to do with shunting in mainly Hydrocephalus patients, but two with IH. She said, oh , so no improvement in your symptoms? I am not surprised. WHAT I said?
Yes, they are now seeing no long term improvments in shunt patients, if any results at all .I almost feel off the chair!
I was told, at the time of my shunt, that it WOULD fix everything. When it didnt , I was treated as if it was my fault, like my brain would nt cooperate. Now , this woman is telling me, that the drs all know this but yet keep drilling in to our brains because they have nothing else to offer us!
I would say to every on, this was a flippent commit, she never thought I would pull her up on it and...it is only her opnionon. This is not fact but ..... It has given me a lot of thought.
We do know, that myself and MM3 shunts just seem to be sitting in our heads, twidilling their thumbs, wondering ,what are we suppose to be doing here? It has done nothing as far as I can see to help me with IH or its symptoms.
I was hesitant to write this but after reading your post I felt I had to.
Good girl you are JT! I am so proud of you for standing up to the dr and for having done your homework.
Some days , you do wonder , if there is any point in writing, advising,posting,but you have shown us all that ,YES, it is all for the good. Thank you!
The best of luck with the lp. I cant wait to hear what your opening pressure is! Come back to us after and we will discuse it all. Good luck and hey ! to you! Cath.
Oh, and I found a Neuro-opthamologist at Emory University here in Atlanta who's research specialty is IIH! I'm definitely going to set up a consult with him.
Today is a good day.