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...
HI, I'm Wendy. I'm 34 and was just diagnosed with IIH last Tuesday. I've actually felt like I wasn't myself ever since I had my youngest daughter 5 years ago. I kept going to the doctor but my symptoms were vague and hard to explain. I just didn't feel right. The only thing that made me feel better for awhile was when I took b12 shots due to being low.
This past Aug/sept, I started noticing weird things in my vision. A little black/silver sparkle once in awhile. Two episodes where my peripheral vision darkened a bit. I kept feeling like I was getting a cold because I had sinus pressure. It would come and go. I have had ocular migraines for years, but they started coming more frequently. I do not get headaches with them. I have had some minor headaches where it feels like I'm wearing a headband that's too tight.
I finally went to my eye doctor first, since I was due for my 1 year post-lasik checkup. He said that my optic discs were slightly swollen on the retina pictures. He then dilated my eyes and looked inside. He said it didn't look too bad, but to follow up with my doctor. I also passed the field test.
I had an MRI/MRA that I passed and then saw the neurologist Tuesday. She did an LP & I had opening pressure of 28. She told me what I had and that she wanted me to get on meds & see the neurosurgeon to consult about getting a shunt. I was really surprised about the shunt and asked her if I could try meds and diet first. She gave me a lecture about protecting my eyes and how everyone that gets a shunt loves it (yeah right).
Anyway, I happen to know someone that was diagnosed with IIH last year. She had pretty much the same symptoms as I do, but she did diamox and lost weight and they think she's now in remission. I'm going to make an appointment where she went and get a second opinion. I just don't feel right going straight to a shunt when my symptoms aren't even that bad and I barely have swelling.
Sorry so long. It's great to know there are others out there for support. Thanks!
This past Aug/sept, I started noticing weird things in my vision. A little black/silver sparkle once in awhile. Two episodes where my peripheral vision darkened a bit. I kept feeling like I was getting a cold because I had sinus pressure. It would come and go. I have had ocular migraines for years, but they started coming more frequently. I do not get headaches with them. I have had some minor headaches where it feels like I'm wearing a headband that's too tight.
I finally went to my eye doctor first, since I was due for my 1 year post-lasik checkup. He said that my optic discs were slightly swollen on the retina pictures. He then dilated my eyes and looked inside. He said it didn't look too bad, but to follow up with my doctor. I also passed the field test.
I had an MRI/MRA that I passed and then saw the neurologist Tuesday. She did an LP & I had opening pressure of 28. She told me what I had and that she wanted me to get on meds & see the neurosurgeon to consult about getting a shunt. I was really surprised about the shunt and asked her if I could try meds and diet first. She gave me a lecture about protecting my eyes and how everyone that gets a shunt loves it (yeah right).
Anyway, I happen to know someone that was diagnosed with IIH last year. She had pretty much the same symptoms as I do, but she did diamox and lost weight and they think she's now in remission. I'm going to make an appointment where she went and get a second opinion. I just don't feel right going straight to a shunt when my symptoms aren't even that bad and I barely have swelling.
Sorry so long. It's great to know there are others out there for support. Thanks!
You are right about the shunt, you are nowhere near considering this. What do you mean "had an MRI/MRA that I passed" ? Get copy of MRI on disc, not just the paper report and take to NS for consult. Not that you need surgery, NS treat this more often(lots of trauma pts get this) and can help you determine cause and possible cure. And you may need to consult more than one but definately better than neurology because save for a few they deal with symptoms and wait too long to refer you to NS.
If you have paper report of MRI go to IMPRESSION: and google the terms used to describe your study. You could glean more info. Also compare your MRI to others on line, learn the landmarks, it will help you understand what dr explains and for questions.
Did you have spinal anesthesia with delivery? Might be a lead there.
One step at a time, get meds to lower pressure and work on figuring out what caused increased pressure.
Best to you!
I did have three epidurals. I also had a car accident and had whiplash a few years ago. I've also read about several people that had mirena as a birthcontrol and now have IIh. I have a few ideas on what could have led to the IIH. I wish I had never had the mirena. I never felt the same after it. I was on it for 3 years and off now for 2 years. It made me angry and lose my desire for life.
I think you're doing the right thing in wanting to try meds first. They don't work for everyone, but when they woprk, it is like a miracle. Why not try the least invasive approach first?
That said, I should add that if your doc feels you are in immediate danger of permanent vision loss, the shunt might be the right thing. No two of us are alike. If you feel like your doc was just kinda quick to jump on the surgery bandwagon because she knows that's where many of us end up, you're right to pull the brake and ask her to hold the horses. (LOL.. see what I did with that whole "bandwagon" metaphore?)
If, however, she has valid reasons to believe a shunt is necessary NOW -- and there are plenty of reasons this might be valid -- you should take what she's saying seriously and ask her to explain her reasons so you can understand and consider them. I will be hoping you have the same outcome as your friend, but keep in mind that she is one of the really lucky ones. YMMV.