FAQ - pseudotumor cerebri
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WHO IS THE BEST NEUROLOGIST who specializes in pseudotumor cerebri IN PORTLAND OREGON?


If you have health insurance look online for the list of accepted doctors. Look for the specialty of neurology, and further neurosurgery. Make sure the DR you see actually performs the surgery otherwise you will have to go through everything all over. Look up their names online and see if you can find anything. you usually can. Be careful and make sure that the person that actually performs the surgery does so very often . you do not want a surgeon that does not do this very often.  (+ info)

Hey i was wondering if anyone knows anything about Pseudotumor Cerebri?

I got it last year and i was only 15.. and now i dont have any side vision.. can anyone answer these questions for me.. well one.. do you think i will be able to drive.. two.. am i most likely going to get it agian and have to go threw all those spinal tabs and stuff.. and also .. am i eventually going to go blind.. ? can anyyone help ? oh and one more question is there anyway to improve my side vision???

My friend has this. She went blind, also. Totally blind. But they put in a brain shunt to drain the fluid and everything from her brain, and now she can see and drive and everything else. I hope everything goess well for you!  (+ info)

anyone that has had or is familiar with pseudotumor cerebri??

I was diagnosed a few months ago, taking diamox and so far have had only 1 spinal tap. Can you get a build up of fluid elsewhere in the body from this condition? My ankles and feet have been swelling lately.

Good luck, and take good care of yourself.

the ankle and feet swelling is from the Diamox, not the PTC

Make sure your doctor knows you are swelling  (+ info)

Do you have or know anyone with pseudotumor cerebri?

How do they deal with it?

I have it. For years we dealt with my "flare ups" with Diamox. This worked wonderfully, although the side effects were horrid. I now have a VP shunt that goes from my brain and drains the excess fluid into my abdominal cavity where it is reabsorbed. I havent had any problems since Ive had the shunt placed. It has been 3 yrs now.  (+ info)

Is there a PseudoTumor cerebri group located on yahoo?

Is there a PseudoTumor Cerebri support group cause I will like to know if anybody have a VA Shunt?

Looks like there are a few. You'll have to check to see which ones are the most active:








You can also check a few of the online websites about the disease. There's a message board where you could ask questions or email other patients:



Good luck.  (+ info)

can a person with pseudotumor cerebri have kids?

can a person with pseudotumor cerebri have kids and not go blind??? I also wanted to know what happened to a person when they got pregnant and had pseudotumor cerebri like if they have blurry vision or lost vision from the pregnancy

Yes you can have kids, watch your diet and have regular dr and opthamologist checks through out the pregnancy and you should do fine.

If you have a fairly bad case of PTC your dr will be able to tell you if there are any risks but generally, as long as your monitered through out the pregnancy you'll be ok  (+ info)

Birth Control Effects on Pseudotumor Cerebri?

I was diagnosed with PTC about 5 1/2 years ago and went into remission 5 years ago. I am wanting to go on birth control pills, but am wondering if this will affect my previous problems with the disease? Please only respond if you know the answer for a fact or have experience, etc.

I am not in remission, and have had PTC for a long time. All I know is that I and several people I know that also have PTC have been told NEVER to go on the pill. I know that the hormones can effect people with the disease, but I really can't say that I know for sure in your case. I would consult a neurologist before I'd take anything though.

And I'm really glad you got better from this!  (+ info)

Anyone here with Pseudotumor Cerebri?

Anyone here with Pseudotumor Cerebri?
What are your symptoms?
Do you ever feel a pulsating throbbing sensation in your head?
Or do you ever feel woozy like a drunk feeling?

Oh my gosh I have 2 sisters with it. Yes one could feel it pulsating she even ended up having a shunt put in. T he other just took meds and that controlled the pressure. Very treatable, They have children and work the only thing was when the barometric pressure
changed they were more accurate than the weather people.  (+ info)

does anyone know if fibromyalgia and pseudotumor cerebri are linked in any way?

It is no small surprise to see this question here about a possible association between FMS and PTC/ cerebro-spinal fluid.

I just sent brief email comments on this to some PTC researchers, a couple of PTC associations, NANO, and an Orphan Diseases groups.

As you may know, PTC can be a side effect of risperidone, and from other causes unknown.

We think I experienced PTC, however, when Oxycodone (given in ER for kidney stone) shut down my gut for 3 days. Fluid was trapped in my head, and I suspect it was because of viscosity, not volume.

In FMS, we have known for about 8 years that Serous Fluid is too thick and cannot pass into the Lymphatic Capillaries as it should.

In the situation with the Oxycodone, of course, even under desperate circumstances, shunting would likely not provide appropriate relief, as the fluid is not trapped in a cavity, but in body tissue.

I am not a medical professional, just a medical maverick and intellectual wild card.

I would like very much to speak with you about your interest in this.

You can find me on the net.

Anne Hillebrand
FibroFix  (+ info)

Living with Pseudotumor Cerebri! Please Answer If you Can?

I just got diagnosed with Pseudotumor Cerebri and I was told that I need to lose weight and become more healthy. Is there a certain way i should go about losing the weight? Are there any lifestyle adjustments to be made? If you know of any forums about this or if you have your own personal experiences can you share on how your maintaining your weight and keeping your fluids low. Thank you so much.

Btw I'm 20 idk if that helps

I believe my Fiancee had that when she was little... but I got the impression that it was something that was treated and done with, she doesn't have to do anything "for" it now.

I believe she had a "lumbar puncture" that additionally never healed quite perfectly, and theres a sensetive spot on her back from it.

perhaps she was just lucky and the cause of it was a temporary thing, not chronic, iirc she said it was caught by an optometrist at a budget glasses place that noticed it, having read an article about it like a week before. ... or something like that.

good luck! sorry couldn't be more help on this. I will mention this question to her tomorrow and see if she has any more input.  (+ info)

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