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  • Pseudotumor Cerebri

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    Old 09-14-2008, 06:02 PM   #1
    crystalhanzelka
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    Exclamation Pseudotumor Cerebri

    I am a 26/f and have been diagnosed with PTC for about 6 months now. I have read that it can go away. Has anyone had it go away or know anyone who has. Just curious to see how accurate that information is. Also, what symptoms do others experience when their pressure is high. Thank you!!

    Crystal

     
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    Old 09-15-2008, 03:37 AM   #2
    cindys601
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    Re: Pseudotumor Cerebri

    Hi Crystal~

    From what I've learned about Pseudotumor Cerebri is it is treatable and can go away. I have chiari malformation and this is a disorder related to chiari, though I have not been personally diagnosed with this. I do get alot of pressure in my head (if you can call it severe headaches but its more like my head feels like its going to explode) It also can put pressue on your nerves causing a mixture of neurolical symptoms.

    I have to lie down for relief but if I'm correct, with Pseudotumor Cerebri, it is more painful to lie down? My sympathies go out to you having to deal with this because I know its quite painful. Do they have you on any meds to help?

    Take care~

    Cindy

     
    Old 09-15-2008, 09:30 AM   #3
    crystalhanzelka
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    Re: Pseudotumor Cerebri

    Thank you for your response. I pray everyday that this does go away. They have me on Diamox to reduce the production of CSF.

     
    Old 09-16-2008, 07:13 PM   #4
    Frosty6
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    Re: Pseudotumor Cerebri

    My daughter also has pseudotumor cerebri and we were told that it does go away in a few years. Her symptoms were blurred/worsening vision deteriorating at a very fast rate and painful headaches that nothing would relieve. At a routine eye exam the doc found that her optic nerves were enlarged and we had to take her to a neurologist. They too felt that she had this but had to confirm it with a spinal tap. They put her on Diamox for excess fluids and it has worked well. As far as we know she still has it but she hasn't been checked since April. At the last visit it the swelling was down tremendously. Her vision has improved slightly as well. It has to be treated or it can lead to permenant blindness according to our doctors and many sites. Some people have to have a shunt put in their lumbar spine to drain the excess fluids weekly. They gave her a migraine medicine that does nothing and Tylenol 3 for the severe headaches. She doesn't get them as often now, perhaps 4 or 5 times a month. Do some research, read many different ones as some of them will just scare you. Listen to the doctors orders and if they put you on a diaretic, take it as you should. My daughter was bad about taking the 2nd one in the afternoon. Get checked often. We started with every 3 months, then 6 months etc. Good luck!!

     
    Old 09-17-2008, 06:49 AM   #5
    crystalhanzelka
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    Re: Pseudotumor Cerebri

    Well I dont know about a few years...I have a friend that has been diagnosed for over 8 years, is almost completely blind, and has had 6 VP shunts (due to an allergy to the material they are made out of) I guess some can have it chronically and others it will go away?? Is there anyone out there that PTC has gone away? Also, how high has your daughter's pressure gotten?

     
    Old 10-06-2008, 03:10 AM   #6
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    Re: Pseudotumor Cerebri

    I have been sick with PTC since 2002. I have always had a weight problem but I managed it. After delivery of my 4th child I kept gaining and gaining. It was so out of control and rapid. I knew I was sick but didn't know what. When I would bend down, for example to get into my brief case to cancel my appointments because I was sick, I would get confused, sicker and just lay down not knowing what to do. I told my husband that I thought I was dying. Then I started having visual obscurities (sp??), I waould see like a screen on a white wall. Everyone said floaters. So I went to the eye doctor expecting floaters. He looked at me quite concerned and said my optic nerves were very swollen. He felt it was a condition, but he had to rule out a tumor. He was sending me to a specialist right then and there. As I began driving to the specialist, I broke down crying in tears, called my sis, and she and my Dad came and got me.
    They took me to the specialist which I believe was an opthmologist. This guy could barely talk he was so nervous. He also said he thought I had a condition. He was sending me for a cat scan of the brain, then a spinal tap to confirm this condition. He said all I had to do was lose weight. That was the beginning of my nightmare because anyone with this disease knows how hard it is to lose weight, it is hard to see what came first the disease or the weight. So my family was on me like, just lose the weight. My husband being a physician knew that losing weight with this disease was close to impossible. Cat scan, thank God, was negative, then off we went for the spianl tap. By midnight came my diagnosis, PTC. It has been pretty awful but I try to be greatful that it is not life threatening, however, my eyesight is what we watch. I hold my own there. I see a specialist at Bascomb and Palmer twice a year. The original opthamologist discharged me as he felt I needed to just go to Bascomb and Palmer. He was a nervous wreck with me the whole time. You know the whole cya thing. I have had 15 or so spinal taps. I gave them up a year ago as there was only one doc who could do it so I wasn't horribly sick after for 10 days. The other problem is I am now addicted to narcotics which I am so angry about because I asked the pain management doc if this would happen and he gave me some jargon about being physically addicted but not psychologically. Okay so what? So now I have that battle to fight.
    I live in pain each and every day. I have 5 children, the last adopted. I am known for spending my life in bed. The obesity issue really bothers me.
    Today I am going to a weight loss clinic here in town, and I feel motivated and ready.
    So I will once and for all get this weight off. The disease does not go away with weight loss, it makes it better but you still have the disease. I do not believe menopause makes it go away. The reality is, no one knows. I have opted against shunts because I feel that just promotes more problems. There is a websight on yahoo called PTC-support...something at yahoo.com. It is intensive and filled with fellow PTC'ers. The only thing for me is those are mostly people who shunted so I am kind of an odd ball.
    My maternal second cousin, male, age 16, was also diagnosed with this disease. Not overweight. Not female. I also had a great grandmother that had horrible headaches.
    So who knows. Oh one more thing, in Europe they have discovered obesity is genetic and soon will be able to be seen in early genetic testing of babies before they are born.
    We are on the brink of a cure. MAybe our childrens children will have a cure. That makes me happy. Being obese and having this disease has literally made me hide from society.
    I also have the medication struggle ahead of me. For any other PTC'ers who want to relate, please write back.

     
    Old 10-06-2008, 05:15 AM   #7
    cindys601
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    Re: Pseudotumor Cerebri

    Hi Laura~

    I 1st want to say welcome to our boards. Here, theres no oddballs just those of us that are suffering, just like you

    I have Chiari malformation and it is alot like Pseudotumor Cerebri. The brain is blocking the CFS flow, pressing on the nerves in the spinal canal, and causes severe headaches and a whole lot of neurological symptoms. Pseudotumor Cerebri is a related disorder of chiari, so I am familiar with it and know the struggles you go through day by day, 1st hand.

    I am not on any narcotics for pain because me and my GP both are concerned of dependancy. Not much helps with the pain as you know. I do have a script of oxycodone but I only use them on my worse days and I'm very careful. I'm sorry that you were mislead about the chance of dependancy. I hope you can find help to get that under control

    As far as the weight loss, I know its easier said than done. And who knows if that will be the answer. Thin people get it too I wish you luck at the weight loss clinic!!

    Though you have a couple battles ahead, you'll get through it. And we're here if you need support along the way

    Take care

    Cindy

     
    Old 10-07-2008, 05:13 AM   #8
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    Re: Pseudotumor Cerebri

    Hi Cindy,
    Thank you for the welcome! It is very comforting to know there is support out there. When I go to the doctors I never get the feeling they know about this disease to really treat it.
    My pressures have gone up to 51, but I have not had a tap in awhile.
    I go through months and months of denial of having this disease.
    My daughter who is 8 has been having many headaches. I am concerned about her. I need to try to get weight off so at least when I go to the doctors they are not constantly focusing on that.
    Thanks for posting!
    I guess shunting depends on how the optic nerves are doing.
    It is all very scary. When I was diagnosed I had no idea what I was in for.
    Thanks,
    Laura

     
    Old 10-07-2008, 05:37 AM   #9
    cindys601
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    Re: Pseudotumor Cerebri

    Hi Laura~

    Its very friustrating to not have a Dr treating you armed with knowledge about your condition. Have you tried looking for a specialist that can offer you more a peace of mind?

    I go to The Chiari Institute (TCI) in New York and they specialize in Pseudotumor Cerebri as well as chiari and its related disorders. I'm sure there are others...

    As long as your losing, even a pound or 2 when you go, they should be happy. As we all know (or at least I can relate) its a battle taking off weight. It doesn't happen overnight.

    Its a rough road and its even a harder one because its not understood by so many. Know one knows the pain that is involved and the daily struggles we go through.

    I think shunting would have to be a personal choice, just as surgery is for those of us with chiari is. Some people do it and there are those who choose not to. It also depends on how its affecting your quality of life and in doing it, will there be enough improvement to make it worth it for YOU!!

    I hope your daughter is ok. Have you had her checked for the headaches? I worry about my kids and all this stuff too. Knowing what we know, we definately don't want our children to suffer as we do.

    Hang in there Laura!!

    Take Care

    Cindy

     
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