Psuedo-Tumor Cerebri Questions
Hi Kalyssa,
I have it which was the primary reason I had WLS.
I was put on Diamox before surgery which helped with the symptoms that the fluid build up between my brain and skull was causing. I had headaches, papilledema, dizziness, unsteadiness, faintness, blurry vision, photophobia, severe fatigue and pulsate tinnitus as a result of Psuedo-tumor cerebri, Otherwise known as IIH. I of course had the regular round of tests, MRI's with and without dyes, Lumbar puncture, full visual field, dilation to see the optic nerves and a zillion other different types of eye tests. Just a few weeks ago I had another MRI of my brain which came out good, and this week had one more to review the arterial areas in my neck and lower brain. From past history, I think these must be fine because there usually is an emergency call made right away when something bad is found. I have one more test next week, and then back to the neurologist.
So, what does this all mean in regard to my RNY? Well, like I said I had WLS done because of the IIH. I had hoped to start seeing relief within 4 months, and to be in remission by now. It really hasn't gone like that. I don't get headaches any more, they ended when I went on Diamox. I still get dizzy, feel unsteady, and faint as well as experience photophobia, but less often. My vision still gets blurry often. I'm still fatigued, but that was reduced with the Diamox pre-surgery too. The pulsate tinnitus is still there, and as miserable as ever. I so want peace and quiet in the worst way. There has been one change, and this is an important one. The papilledema is improving. My last set of vision tests showed a 10% improvement of swelling of my optic nerves from when I was originally diagnosed. My visual field tests were the best ever too. As you know blindness is a a very real risk, so I was elated to know this has improved. BTW, I'm due for another set of vision tests too, so this may be really good now too. During the last visit to my neurologist he looked at my optic nerves, and was pleased to see they looked normal. Of course we know that the ophthalmologist is the real pro in this area though.
As I see the Big Picture related to IIH and WLS for me. It has reduced the risk of blindness for me, About 5 months out I realized that I started feeling good, so good that I realized perhaps IIH was a blessing because without it I would not have considered this surgery, and even if I never go in remission, I feel wonderful having gotten so much weight off. I seriously would do it again even if I didn't have IIH. I might have had the VSG instead of RNY if there had been time to wait though.
I wish you well because this condition is a challenge, and can be depressing at times. Hang in there, and Friend or Message me anytime you like.
Kat
I have it which was the primary reason I had WLS.
I was put on Diamox before surgery which helped with the symptoms that the fluid build up between my brain and skull was causing. I had headaches, papilledema, dizziness, unsteadiness, faintness, blurry vision, photophobia, severe fatigue and pulsate tinnitus as a result of Psuedo-tumor cerebri, Otherwise known as IIH. I of course had the regular round of tests, MRI's with and without dyes, Lumbar puncture, full visual field, dilation to see the optic nerves and a zillion other different types of eye tests. Just a few weeks ago I had another MRI of my brain which came out good, and this week had one more to review the arterial areas in my neck and lower brain. From past history, I think these must be fine because there usually is an emergency call made right away when something bad is found. I have one more test next week, and then back to the neurologist.
So, what does this all mean in regard to my RNY? Well, like I said I had WLS done because of the IIH. I had hoped to start seeing relief within 4 months, and to be in remission by now. It really hasn't gone like that. I don't get headaches any more, they ended when I went on Diamox. I still get dizzy, feel unsteady, and faint as well as experience photophobia, but less often. My vision still gets blurry often. I'm still fatigued, but that was reduced with the Diamox pre-surgery too. The pulsate tinnitus is still there, and as miserable as ever. I so want peace and quiet in the worst way. There has been one change, and this is an important one. The papilledema is improving. My last set of vision tests showed a 10% improvement of swelling of my optic nerves from when I was originally diagnosed. My visual field tests were the best ever too. As you know blindness is a a very real risk, so I was elated to know this has improved. BTW, I'm due for another set of vision tests too, so this may be really good now too. During the last visit to my neurologist he looked at my optic nerves, and was pleased to see they looked normal. Of course we know that the ophthalmologist is the real pro in this area though.
As I see the Big Picture related to IIH and WLS for me. It has reduced the risk of blindness for me, About 5 months out I realized that I started feeling good, so good that I realized perhaps IIH was a blessing because without it I would not have considered this surgery, and even if I never go in remission, I feel wonderful having gotten so much weight off. I seriously would do it again even if I didn't have IIH. I might have had the VSG instead of RNY if there had been time to wait though.
I wish you well because this condition is a challenge, and can be depressing at times. Hang in there, and Friend or Message me anytime you like.
Kat
I had pseudo-tumor cerebri pre-opt. It was a major factor in my decision to have WLS. I was on diamox off an on. My symptoms were not as sever as I'm heard others were. I had sever headaches, blurry vision, photo-phobia, nausea, and some dizziness but that was the extent of my symptoms. I was diagnosed at the age of 22, so almost 10 years ago when I was in graduate school. I took diamox and it resolved 100% of my symptoms immediately.
For me, it seems I would have flair-ups that were closely related to periods of rapid weight gain. For instance after the initial diagnosis and when I was prescribed diamox, I took it for about 2 years and was able to reduce and eventually stop taking it. I hit a stressful patch when I was working on my PhD and gained 20 pounds and the symptoms cam back immediately. Went back on the diamox for another year, slowly reduced and eventually was able to stop taking the med**** another weight gain and the symptoms came back. Each time it was worse and worse requiring a higher dose of meds to control and stop the symptoms.
I was lucky because where I was going to grad school one of the medical school professors is a highly consulted neur-ophthalmologist and when I went into the ER, one of his med students was there and immediately recognized my symptoms and had me follow up with him. I went from having my first episode to seeing this doctor within 2 weeks, so I credit that with not experiencing some of the more sever symptoms because I had not experienced the increased cranial pressure for an extended period of time.
Since surgery, as I was losing weight, I experienced the same flair-ups. It was almost like for my body it was in reverse. When I hit a weight losing where I had a flair up when I was gaining, I would have a flair up. This went on for a few months as I lost weight, to the point where I flew back to Florida to see my original doctor who I followed up with yearly. He ran all kinds of tests (MRI, visual field tests, dilation to view the optic nerve, and a few other vision specific tests) and he determined that while I was experiencing the headaches and nausea, there was no swelling of my optic nerve and tho was experiencing some increased cranial pressure so he put me on the lowest dose of diamox which cleared everything up almost immediately.
I noticed that once I reached a weight that was lower than my original diagnosis weight, I haven't had a single flair-up and I am off the diamox completely for the past 3 months. I have an appointment to followup with my doctor later this summer. I see one of his former students that teaches in Baltimore at Hopkins so my original doctor and my new doctor pretty much still discuss my case and they are confident that when I go to see him this summer, that I'll be considered in remission!
If you have questions, please let me know I'm more than willing to answer any you have. Send me a pm or ask them here!
Good Luck
For me, it seems I would have flair-ups that were closely related to periods of rapid weight gain. For instance after the initial diagnosis and when I was prescribed diamox, I took it for about 2 years and was able to reduce and eventually stop taking it. I hit a stressful patch when I was working on my PhD and gained 20 pounds and the symptoms cam back immediately. Went back on the diamox for another year, slowly reduced and eventually was able to stop taking the med**** another weight gain and the symptoms came back. Each time it was worse and worse requiring a higher dose of meds to control and stop the symptoms.
I was lucky because where I was going to grad school one of the medical school professors is a highly consulted neur-ophthalmologist and when I went into the ER, one of his med students was there and immediately recognized my symptoms and had me follow up with him. I went from having my first episode to seeing this doctor within 2 weeks, so I credit that with not experiencing some of the more sever symptoms because I had not experienced the increased cranial pressure for an extended period of time.
Since surgery, as I was losing weight, I experienced the same flair-ups. It was almost like for my body it was in reverse. When I hit a weight losing where I had a flair up when I was gaining, I would have a flair up. This went on for a few months as I lost weight, to the point where I flew back to Florida to see my original doctor who I followed up with yearly. He ran all kinds of tests (MRI, visual field tests, dilation to view the optic nerve, and a few other vision specific tests) and he determined that while I was experiencing the headaches and nausea, there was no swelling of my optic nerve and tho was experiencing some increased cranial pressure so he put me on the lowest dose of diamox which cleared everything up almost immediately.
I noticed that once I reached a weight that was lower than my original diagnosis weight, I haven't had a single flair-up and I am off the diamox completely for the past 3 months. I have an appointment to followup with my doctor later this summer. I see one of his former students that teaches in Baltimore at Hopkins so my original doctor and my new doctor pretty much still discuss my case and they are confident that when I go to see him this summer, that I'll be considered in remission!
If you have questions, please let me know I'm more than willing to answer any you have. Send me a pm or ask them here!
Good Luck
HW & SW: 363 Surgery date: 8/22/11 
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