PSEUDOTUMOR CEREBRI

[PseudoKristin]

I was just diagnosed with this this week. I have a million questions.

Beside vision changes, how do you know if you are retaining fluid and heading toward another spinal tap ?

How much weight does a person typically need to lose to have their symptoms disappear ? (I know that does not happen for all, but I am hopeful it will help)

How often should you get your eyesight checked ?

How does doctor decide appropriate dosage of diamox, etc ?

How soon after a spinal tap that takes fluid from 35 cm/h20 to 14 will my vision correct, if it is going to ? Will it take days ? months ? weeks ?      

How do I suppress the absolute panic I am feeling that I am going to go to sleep and wake up blind ?        
          

[Tammayberry]

I was confirmed the diagnose last week and had  LP measuring 43 on open pressure and 10 on closing. I wanted to find out if you have made any progress with your medicine or is your doctor recommending a shunt. I would really appreciate any feed back you can give. Thank you

[Cath278]

Hi and welcome!Now, the first thing to do is-slow down! It will be alright. I know how scared you must be but I will try and explain anything you want to know.
I have IIH/PTC as well. I was diagnoised a yr ago and have Papillodema in both eyes. That is , swelling of the optic nerve. I had a VP shunt fitted last Dec.
Do you know what your opening pressure was? That is the result from the lumber puncture. Was it 35? that is quite high.It should be around 11-18. If you are very overweight it can be considered normal up to 25.
Losing weight does not work for everyone in helping hteir symptoms.But it is always a good idea to be a good weight.

Your dr will probably start you on Diomax which will help reduce the extra csf. How do you know if your pressure is going up again? It differs from person to person.For me, my headaches get terrible and my eyes blurry.
If you are having vision problems, you should se a Ophthalmologist every  3mths. Do you have paps?

How soon will your visiopn correct its self after a lp? Again, that depends on the person. It never worked for me and I also never got relief ( about 12 hrs) from a lp. But some say 3 mths.
Now that you have been diagnoised and are being taken proper care of, every thing will  be better. Your eye dr and neuro will figure every thing out for you anf the best course of treatment.

Please dont think you are going to go blind!! That really only happens to people who have not been looked after.I have pretty bad ones and I can still see albit its blurry.
I hope this calms you down a bit and answers some of your questions.You can ask me anything you like and i will try my best to help if you want. Ive been there so I do get it. Hope you feel a bit better, Cath 278.