Pseudotumor Cerebri

Question: pseudotumor cerebri? Hi my husband has a medical condition called pseudotumor cerebri has anyboby had or know anyone with this.This condition is where spinal fluid accumulates on the brain and he has to have spinal taps he has had 380 spinal taps he will need to get a shunt does anyboby have any information about this he needs help.His symptoms include headaches,not ever feeling good,he also has a feeling of blanking out can some boby please help me relieve him from this HELL he has to indure ever day.

Answer: I had that once. I found out about it the hard way. I woke up blind one day. I spent 5 days in the hospital. My spinal fluid was drawn out to test. They gave me water pills and prednisone. They did spinal taps alot to relieve the pressure on my brain. I had massive headaches. But with treatments, it got better and I got over it. I got my sight back after about a weak. Talk about scary. But that was so many years ago. Just make sure he does what he's supposed to do, and he'll be OK. I'll look for a website on it and come back and post it here for you. Good luck. http://www.ninds.nih.gov/disorders/pseud… http://www.revoptom.com/HANDBOOK/SECT53a… I dont know what doctor he's going to, but my primary care doctor sent me to the neurologist to take care of mine.

Question: If my mother had Pseudotumor Cerebri while pregnant, what are the chances I will get it? While my mother was pregnant with me, she was diagnosed with Pseudotumor Cerebri, and after I was born she went into remission. She was told she could never have kids after me. Is there a high chance that I could end up getting this when I become pregnant? If so, are there any ways to prevent this so I could still have children safely?

Answer: Pseudo tumour cerebri has several causes such as overdose of vitamin A or D, drugs such as steroids, endocrine gland malfunction, etc. It is not really a tumour, nor is is heriditary. It is called a pseudo tumour because there are signs and symptoms like a brain tumour, but there is none. Relax. You will not get it.

Question: Is there any sort of alternative treatment available for Pseudotumor Cerebri? My wife was diagnosed as having Pseudotumor Cerebri over a year ago, after suffering with several headaches behind her right eye for no apparent reason. She has had a spinal tap to drain off some of the fluid and relieve some of the pressure. The tap site did not seal, however as a result she was in agony the entire weekend. The doctor had her to go for a blood patch to seal the hole that following Monday. She has been taking Acetazolamide twice a day to help with the headaches. One of the side effects of the medications, however is whenever she will drink any sort of carbonated beverage "it's like battery acid in her mouth." Being "a fifth generation Atlantian", she enjoys drinking Coca-Cola. Is there any sort of alternative treatment available, so that she does not have to deal with these circumstances?

Answer: I was diagnosed with PTC last June after a routine eye exam. I was put on acetazolamide ( 250 mg four times a day) as well since it is the drug of choice. My body did not agree with the drug and after having 2 rounds of kidney stones my doctors switched me to furosemide (a diuretic). The medication isn't the best but I don't get any of the weird side effects that I had with acetazolamide ( like leg spasms 24/7, kidney stones, extreme tiredness, feeling like a 90 year old woman stuck in a 27 year old body , etc) and it's keeping the condition at bay, my left eye has even improved some although my right eye has not. The good news is that this medicine does not make pop taste disgusting and I have returned to a somewhat "normal" life again. One has to watch their potassium levels though just like with acetazolamide. The are options out there. It would be best for your wife to discuss them with her doctors. There are surgical options as well but I'm still researching them and they're more often options that the doctors avoid unless the meds are not working.Hope this helps.

Question: Does anyone have any experience with pseudotumor cerebri? I was diagnosed with pseudotumor cerebri about 4 years ago. I went through 5 lumbar punctures and after that point about a year and a half later was told by the doctor I was fine. My symptoms are flaring back up and I am going back to the doctor has anyone else have this disease and what has been the case for them does it go away? What did you do to fix it?

Answer: HEllO I have had ptc now for just about the same amount of time as you. I was on 1000 mgs of diamox then was fine for 1.5 years and then in feb of this year mine came back as well. To my knowledge there is no cure for this. I had another lumbar puncture in may and my levels were in fact up again. I am currently taking 500mgs of released tabs of diamox. Diamox does help with the pressure levels and the symptoms. Did your Dr. ever put you on anything or just give you the lp's?For some the meds do not work and they get regular lumbar punctures to remove the extra fluid.Others have to go to the next step which is a shunt. A lot of Dr.'s will tell you that if you have gained weight recently to try and loose that weight. I honestly think that is what started mine back up as I gained about 30 pounds. It is important that you have a regular neuro. Dr and a neruo. opth. dr if you can especially if your having trouble with your vision. There is a great group on yahoo for ptc people and their families that I belong to. This group has loads of information and support you should try it really. Just go under groups for yahoo and put in pseudotumor cerebri.I hope that this will help you out some. Remember you are not alone. And we are all here for one another. May God bless you.

Question: Diagnosed with pseudotumor cerebri and prescribed acetazolimid have tingling in hands and feet, is it normal? I am 23 year old female diagnosed on friday. have taken 5 pills so far, not sure if I need emergency attention or can it wait til the morning to call my doctor office?

Answer: Misty, the symptoms you are experiencing, called paresthesia, is commonly seen in the early use of Acetazolamide. If this tingling situation really bothers you (as it must since you're asking this question) call your doctor's office in the morning. You didn't mention what dosage you're on, but your doctor may decide to adjust it. But the important thing for the moment for you to understand is that what you are experiencing is quite common and is not an emergency situation. Best wishes, and I hope your headaches go away quickly--if they have not done so already.

Question: Will I ever get better from Pseudotumor Cerebri? I got diagnosed with it in December last year. I have had some vision loss. I'm really worried that I will never get my vision back. What are the chances that I will get my vision back? What can I do to make it go away? What can I do to help the chances of getting my vision back. Thanks.

Answer: Vision loss is most likely permanent, I'm sorry to say. There still is hope with causing this condition to recede. Weight loss paired up with conventional therapy can cause this disease to almost completely vanish

Question: Is there anyone out there who has or heard of Pseudotumor Cerebri? Another name for it maybe Benign Intracranial Hypertension. Why I'm asking,because I have never met anyone out there with it. I would like to know if anyone out there is going through what I'm going through.

Answer: yes not only have i herd of it i have it i was dx. in 2003 and have can tell you what i have been through if you want. my e-mail is deepsea29440@yahoo.com

Question: Does any one one here have Pseudotumor cerebri? If you don't know what this is, it is to much CSF fluid on the brain.

Answer: yes i just got diagnosed with it last week they did an mri and they said it was normal so i have to go see a neurologist next this is scary i am not sure what they will do now.

Question: WHO IS THE BEST NEUROLOGIST who specializes in pseudotumor cerebri IN PORTLAND OREGON? POSSIBLY SOMEONE AT OHSU?

Answer: 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.

Question: 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?

Answer: Looks like there are a few. You'll have to check to see which ones are the most active: http://health.groups.yahoo.com/group/ptc… http://health.groups.yahoo.com/group/pse… http://health.groups.yahoo.com/group/PTC… http://health.groups.yahoo.com/group/ptc… http://health.groups.yahoo.com/group/you… http://health.groups.yahoo.com/group/liv… http://health.groups.yahoo.com/group/ben… http://health.groups.yahoo.com/group/PTC… 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: http://www.pseudotumorcerebri.com/ http://www.geocities.com/Wellesley/Garde… Good luck.