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 that was interesting, but a waste of time.
I am waiting to here from my new NS's office to make an appointment since he just got back into town.
Anyway, I decided I would go see my currect NS one more time to ask for physcial therapy since my sciatica and now lower back pain has gotten worse. In which he said, "oh PT's don't work with that only degenerative diseases of the spine and getting your abdom. stronger". (WRONG...gee Doc, I have co-treated w/ PT's over the last 13 years and they do work with nerve damage/nerve issues).
Then, he said...I think the sciatic is just a coincidence (sp?). REALLY... gee Doc, its interesting how it happened after the first surgery I had, and now this last surgery. Funny how it times itself to occur exactly after you do surgery on my LP shunt.
of course......he doesn't want to do anything right now, hoping I will just equalibriate my new CSF fluid. Ok Doc, so the overshunting will just automatically dissapear while I suffer for 6 more weeks until you see that this is serious? Sigh.
Arrrgggg....I hope this new NS can help me.
Anyway, a true story...my NS sent me to a neurologist, a while ago, and the neurologist didn't think I had PTC (though I had papilla edema) and he gave me some old medication for migraines (even the pharmacist questioned while he was using such an out of date medication when better ones were available).
Well, the medication gave me such violent/angry thoughts, nothing like myself, and I stopped it and went back in to tell him what happened. And this is the absoulute truth of what he said to me, "Do you watch football?" Me, "yes". Him, "well take the pill before the football game on Sunday so you can get your agression out". AND HE WAS SERIOUS!!!!
Needless to say I never say him again and it is my favorite story to tell every Dr. who treats me.
Ok, well my low pressure headache, which feels just like a high pressure headache, except I throw up and when I lie down flat for 4 hours can get it under control for about another two hours has kicked in.
Blessings to you all and may we all find a great Dr. who treats us with respect, kindness, concern, and knows what he/she is doing. Jazzy
I am waiting to here from my new NS's office to make an appointment since he just got back into town.
Anyway, I decided I would go see my currect NS one more time to ask for physcial therapy since my sciatica and now lower back pain has gotten worse. In which he said, "oh PT's don't work with that only degenerative diseases of the spine and getting your abdom. stronger". (WRONG...gee Doc, I have co-treated w/ PT's over the last 13 years and they do work with nerve damage/nerve issues).
Then, he said...I think the sciatic is just a coincidence (sp?). REALLY... gee Doc, its interesting how it happened after the first surgery I had, and now this last surgery. Funny how it times itself to occur exactly after you do surgery on my LP shunt.
of course......he doesn't want to do anything right now, hoping I will just equalibriate my new CSF fluid. Ok Doc, so the overshunting will just automatically dissapear while I suffer for 6 more weeks until you see that this is serious? Sigh.
Arrrgggg....I hope this new NS can help me.
Anyway, a true story...my NS sent me to a neurologist, a while ago, and the neurologist didn't think I had PTC (though I had papilla edema) and he gave me some old medication for migraines (even the pharmacist questioned while he was using such an out of date medication when better ones were available).
Well, the medication gave me such violent/angry thoughts, nothing like myself, and I stopped it and went back in to tell him what happened. And this is the absoulute truth of what he said to me, "Do you watch football?" Me, "yes". Him, "well take the pill before the football game on Sunday so you can get your agression out". AND HE WAS SERIOUS!!!!
Needless to say I never say him again and it is my favorite story to tell every Dr. who treats me.
Ok, well my low pressure headache, which feels just like a high pressure headache, except I throw up and when I lie down flat for 4 hours can get it under control for about another two hours has kicked in.
Blessings to you all and may we all find a great Dr. who treats us with respect, kindness, concern, and knows what he/she is doing. Jazzy
I'm sorry you have to deal with that. Sounds like you need a steel toed advocate of your own to pay old and current NS a visit!
I guess this is the point I've been trying to make. Dr's. act like we are crazy because their wild guesses at which meds we should be taking or what procedure we should have done, aren't the cure all they were hoping for. So instead of admitting that a mistake was made and trying something new, its easiest to just act like the client is a crazy hypochondriac.
NS in particular have this God like complex. Sounds like you need to find a new NS. I don't know if you are a woman of faith, but, my suggestion would be that you pray about it first. Hopefully, God will find someone for you who will listen and take care of your pain.
Hmmmm....Sounds like advice I could take myself. Tee-Hee.
I'm with you Jazzy.
I feel your frustration!
Your story about the neuro telling you to watch football is...geez, I don't even have a word for it (thanks, Topamax)!
May I ask how old this Neuro was to be perscribing such an old med and dispensing such horrendous advice?
Not sure how your insurance works but I just started talking to NS. I made 3 different appointments and just started talking to them. If none of those 3 floated my boat then I would have found another 3. Lucky for me I stopped at #2 and canceled #3 (but still have his name if needed). I would not stop until you find one you are happy with and one that he/she cares enough to help you.
I have said it before but just because we have an illness that is not well understood does not mean we should recieve any lesser quality health care.
IHRF actually recommends you find a team of Drs willing to work together to help you. I have not really reached that Ureka yet but I am continuing in that direction and I would encourage you to do this too.
Life is too short to deal with your current doc. Fire his A**!
TJ
wouldn't be great if we all lived close together and went en mass to see our Dr's! I bet we'd get some answers (of course show them our steel toed boots to let them know we mean business).
I am a woman of faith, so much so that I have worn out a part of the carpet from praying on my knees, so just waiting for new NS to call and make an appt. (my hubby all ready told him I am waiting to see him).
Thank you for your support and hope you are feeling better. Jazzy
ummm...that is a good question and when I tell other Dr's about what he said they are all dumbfounded as I was. Just goes to show you that just because someone has a degree in medicine doesn't mean they know what they are doing (scary!!!)
Hope you are well, Jazzy
I have a HMO insurance so I have to get a referral from my PCP to see any other Dr., and of course they must participate in the HMO program I have....but the good news is that most Dr's at the hospital I go to take my insurance.
Ah yes, he is almost kicked to the curb. I am only doing a MRI he ordered to see if a cyst of fluid has formed against my spine causing the sciatica and seeing him one more time to hear what the report says then that is that!
Thank you for your support, Jazzy