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...
So I went to see mu Neuro OP yesterday and I have swelling right eye again ,PAPS , and we talked about the optic nerve sheath fenestration surgery, I've had the LP Shunt for 2 yrs now... He don't like where this is going so he's sending me to the university of Florida in Tampa to a spec.
He wants to get his input , he's feeling stumped and had another case 2 weeks ago go horribly wrong the girl went blind in the matter of hours ... He sent her to him and don't want the same to happen to me. He put me back on the Diamox which we all hate ! I havent taken it in about a year !
He needs the swelling to go down and says thats is gonna be the fastest way to do it. II did the ER 14 days ago due to a migraine they gave me
Sulu medrol but the nurse never told me then I HAD SWELLING !!
Had she I would have gone right away to the Neuro OP ! I've known something was wrong because I've been vomiting... I wasent sure what it was... well I do now !
So now he's thinking more surgery... & I'm just not sure thats what I want to do ! He even said to me this may not help ! Thats why he wants me to go see this Doc in Tampa .... This is all so complicated ! I'm going back next Tue. for a field test and another chk to see if the Diamox is working.
Untill then I just have to deal with it ! I know we all have said this !
I just wish this would all go away !!! XXX ANGIE
He wants to get his input , he's feeling stumped and had another case 2 weeks ago go horribly wrong the girl went blind in the matter of hours ... He sent her to him and don't want the same to happen to me. He put me back on the Diamox which we all hate ! I havent taken it in about a year !
He needs the swelling to go down and says thats is gonna be the fastest way to do it. II did the ER 14 days ago due to a migraine they gave me
Sulu medrol but the nurse never told me then I HAD SWELLING !!
Had she I would have gone right away to the Neuro OP ! I've known something was wrong because I've been vomiting... I wasent sure what it was... well I do now !
So now he's thinking more surgery... & I'm just not sure thats what I want to do ! He even said to me this may not help ! Thats why he wants me to go see this Doc in Tampa .... This is all so complicated ! I'm going back next Tue. for a field test and another chk to see if the Diamox is working.
Untill then I just have to deal with it ! I know we all have said this !
I just wish this would all go away !!! XXX ANGIE
I haven't had surgery so I can't advise you on that. But I am a huge fan of getting more than one opinion. Internet research can sometimes point you towards the doc you want to see. At pubmed search on Intracranial Hypertension or Psudotumor and the names of some of the closer teaching hospitals.
I wish your paps, headache, and vomiting would go away, too.
I am glad you have the opportunity to see a specialist.
Just curious, has anyone ever tried over the counter water pills?
Best of luck with your appointment next week.
~ Magna... The shunt seems to be working like it should it's my body thats not .... If that makes sense ... It's like every time it gets adjusted my body takes over and seems to need that adjustment again 9 revisions now ... I just went in again this AM and had it adjusted AGAIN ! I got the call last night and both Docs thought I needed to take drastic measures to insure my eye sight ... they didnt want to take any risk...So I first saw my op who found the swelling he called the neuro ,then called me and ask if I wanted to drop the setting again... So now I'm down to 70 and it only can be adjusted down to 20 after that I'm SOL !!! I have thought of a plan welll.... in my mind anyways ,when I hit 50 I'll have the eye surg. to try and hold things off alittle longer. I know I have alittle time but it is going very fast so I want to be prepared....
I've not taken the Diamox in about 1 yr this was at the time of DX it only worked for 5 mths but now that they also lowerd the setting it may work for awhile.NO I've not ever taken any other kind of water pill so it is an option that I will talk to him about when I see him next Tue.
TY also for your kind words I'm hopeing for the best I now face this weekend and the first part of next week in recovery due to lowering the shunt I always suffer low presure for a bit .....
@ ~ noneareleft ( hindbrain herniation ) is something I will also bring up to see what he might say. My Neuro OP is an Awesome Doc.! I just love him he is all ears and very open to much of anythhing...You know this is not something I know to much about but will go now and look it up,the more info I can load and go in with the better ! TY also kind words are so nice to hear , from those who understand is even better !
xxxxx TO ALL ANGIE
I am so glad your doctors seem to be working together or at least talking. Two heads are better than one. Best of luck and please keep us updated
Hugs
Amy