FAQ - pseudotumor cerebri
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pseudotumor cerebri??? brain tumor?


my mum has been diagnosed with a brain tumor and she keeps getting headaches seeing double vision loads of things but when we said 2 the specialist he said theyre NOT symptoms of a brain tumor i thought they were?? could it be she has a brain tumor and pseudotumor cerebri?? if so what is this pseudotumor cerebri???
thanx for the help really appreciate it
xxx
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PLAN B GAVE ME PSEUDOTUMOR CEREBRI, CAN IS SUE?


Well, about a month and a half to two months ago the condom broke when my boyfriend of three years and I were having intercourse. He of course panicked as soon as he realized what had happened and wanted me to take the morning after pill. I ended up taking it the next day and all was fine. About a week later i started having excruciating headaches, i felt naseous after eating, tired all the time, etc. My first thought was that the pill did not work and I was pregnant. A few days later I got my period and was relieved, although the headaches only got worse. The next monday I went to visit my regular doctor and she told me i needed to make an appointment with OB/GYN because it was probably just the amount of hormones releases from the pill. The soonest they could get me in was the next month because i was unable to take off work again. So i took off work and paid $20.00 for absolutely nothing! Two days later I spoke with an advice nurse through my insurance compnay (kaiser) and was told that there was no after hour care that i could recieve, even after giving her my symptoms which now included blurry to almost double vision. She told me it was unnecessary for an emergency visit and to follow my doctor;s instructions and see my OB/GYN. I then went to a different urgent care and had to pay $125.00. He practically gave me another physical and sent me on my way. I was so upset that i STILL couldnt get anyone to help me. The next day I made an eye appointment because that was what the urgent care doctor advised me to do. Needless to say i didnt need glasses and wasted another $55.00 to get my eyes checked. When i was explaining to the eye doctor about my very blurry almost double vision he said he was very concerned hearing that and that i needed to see a neurologist. when i called kaiser they would not let me see a neurologist because i had no referral. I ended up going to the Kaiser Urgent Care, which i was told didnt exist by a kaiser advice nurse (thanks alot!), and they sent me over to the hospital to get a catscan. Everything was normal. From my symptoms, the emergency room doctor was able to diagnose me with pseudotumor cerebri. I had to get a spinal tap and take diamox for the next 30 days. I am now fine, and wondering can i sue the company that makes Plan B? I was unaware this was a side affect, a very very serious one at that. If i would have known all of this was a possibility, i never would have taken the pill.

I researched online and read every inch of every paper that came with it. Pseudotumor cerebri is a pretty uncommon thing to get from an emergency contraceptive. BUT IT HAPPENED. Its not the fact that i was unaware it was a side affect, I was fully aware of all the side affects listed. It was the fact that to me this was not a possibility because they have no warning about it. I dont just want to make this a point to get money, although it would be nice to get paid back for what i had to spend and for the 2 weeks of pain and suffering. It's also about the fact that i want them to be aware that their product can do this and that they need to make everyone else aware. IT IS NOT A PLEASANT SURPRISE. If i cant sue them, how do i go about informing everyone? help, please!!
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I was curious about this, so I went to my local pharmacy and asked for the information insert that goes with the pill... and that possibility IS listed in the information... if you go to sue anyone, I'd say you need to go after the drug store that sold you the drug, they are the ones that failed to see to it that you got all the information that the drug company puts out there on the plan B pill, because the information is there.  (+ info)

Has anyone heard of pseudotumor cerebri?


I have been recently diagnosed w/ pseudotumor cerebri by a neurologist. He gave me medication for it, which i stopped taking 1-bc it was getting way too expensive and 2-bc it had some strange side effects.
i also stopped seeing the neurologist due to very high co payment, which i am not able to afford @ the moment.
He told me if i don't take care of it, i could lose my vision some time in the future.
He also said that if i start walking into things, the pseudotumor cerebri might be @ cause. I am very clumsy to begging w/, but i have noticed that i have been walking into things more, or banging my hands on stuff.
If anyone is familiar with this and can give me some advice, it will be greatly appreciated.
Thank you
i think i posted this in the wrong category
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I was diagnosed with PTC approx 6 mo ago. I've had to have 6 spinal taps in 6 mo to relieve pressure (excessive pressure) from my brain and spinal column. While the medication is NOT without side effects and even caused me to go off them w/o notifying my doctor on one occasion. (NOT recommended!) It is crucial to your eye health. I have four small children. I still can't stand the medication, and am still adjusting to them! I've been forgetful, clumbsy, dizzy, not to mention, extreme headaches, etc for about 2 years now, and I always thought it was just me...it really was the PTC. Now the meds make the forgetfulness and clumbsiness worse.

.The extra fluid in your brain will push against your optic nerves and your optic discs in your eyes and WILL cause IRRIVERSIBLE damage to your eyes. This damage is NOT reversible. There is no surgery and no cure for it. You need to have a good neuro-opthomologist AND a neurologist treating you for this condition. NOT a family doctor.Have they done a spinal tap to diagnose you? How did he get his diagnosis? IF so what was your opening pressure?   (+ info)

pseudotumor cerebri? anyone have it?


i went to the eye doctor today for an eye exam due to blurred vision and headaches. i walked out diagnosed with pseudotumore cerebri. does anyone out there have it and what causes it? i know being overweight is one thing. what do you do to treat it? any special diet they put you on to lose weight? any information would be helpful. thank you!
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I have lived with it for almost 10 years now. Weight is the most common reason but stress is also thought to be a culprit. There is no special diet from what I have researched, but getting to a healthy weight can't hurt. There are people with this condition that are normal weight too.

At the end of the day there is more not known about this condition then that is known. In my case coffee helps the headaches, there are other cases where caffeine makes the headaches worse. I was given Diamox to get my cerebral levels down, Topomax for the headaches and a blood pressure medication to help my overall pressure levels in my head.

I am currently under the care of a Chiropractor and I am completely off all my medication. Might be worth a chance.

I have listed a site that has some information.

You need a good Neurologist and Neuro-ophthalmologist.
These doctors can track changes good or bad in your vision and symptoms.

It is manageable, you may possibly live a medicine free life with life-style changes.  (+ info)

Confused about pseudotumor cerebri?


When I get the severe headaches associated with pseudotumor cerebri, I literally feel like beating my head off the wall. I sometimes start pulling at my hair, and never does it get any more manageable. Lortab pain medication doesn't help, as I've had small prescriptions of them before after going to the hospital.
I've gone to the ER a few times, but I just wonder if I really should keep going or not...
I've seen a neurologist and have started taking Topamax about a week ago, but I'm not sure if it's helping yet. I mean I feel like I really need pain relief when it really hurts like that, but even worse I'm just worried cause sometimes my head will hurt for like 24+ hours and I'm not sure it it's ok to have intracranial pressure for that long, as I've heard it can cause deadly arterial pressure. But also, I think a dr should be checking the pressure levels at the points that it's killing me like that too you know?

I'm just confused and while I know others have this condition, I feel so alone! lol

Give me something good please! Even some info on the condition would be good.

Also, if anyone knows if you have to have the shunt put in-how that affects pregnancy, if at all? I have one child already but we plan on more in the future.
Also, I wonder how reasonable it is when I'm having such severe headaches to go to the hospital asking for an LP (lumbar puncture aka spinal tap)
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Hi, My daughter has this condition. I am more then willing to answer any quetoins I can for you. Here is a site that might help answer some of your questions. http://www.ihrfoundation.org/

It sounds like you need a new neurologist. They should have you on a diuretic such as: (i copied and pastd this info from IHRF) the main drug used to treat chronic IH is acetazolamide (Diamox). Methazolamide (Neptazane), a similar drug from the same family as acetazolamide, can also be prescribed. Other drugs with carbonic anhydrase inhibiting properties include furosemide (Lasix) and topiramate (Topamax).

If you have any questions please visit one of the following links and I would be more then glad to try and answer questions for you.

[email protected]

http://health.groups.yahoo.com/group/PTC_IH_4_patients_familyandfriends/  (+ info)

I have Pseudotumor Cerebri, can anyone help me with the pain?


I have severe paplidema in both eyes, extreme pressure pain behind my eyes, a non-stop roaring in my left ear. I often throw up, pass out. Exercise is about hopeless, as soon as my heart rate goes up I pass out. I need bariatrich surgery but my insurance company keeps stating it is cosmetic surgery. It's not though if I can't get this under control I will more than likely go blind, stroke out or have a heart attck. All this cause I hurt my back and was put on cortisone, hence the weight gain and the Pseudotumor Cerebri. So if anyone out there has an idea please share, I desperatly want a normal life back.
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Your physician should be able to provide medication for the headache - if not contact your specialist as in-patient care might be necessary. Also get your specialist to contact your insurance co. to inform them that the surgery they've advised isn't cosmetic.

Sounds like you've not been able to communicate too well with your M.D. and specialist. Make sure they're aware of your pain and other symptoms and if they don't provide adequate pain relief and other care change doctors. It's scary being ill and constant pain is very disorientating - but unfortunately the times when we feel most overwhelmed are often the times we most need to keep our emotions under control and speak up about our needs. It might help if you find yourself a support group http://www.pseudotumorcerebri.com/ may be able to help

Hope you feel better soon!  (+ info)

What to do if you have pseudotumor cerebri and had a shunt put in and?


I had chiari malformation when I was 12 and about a year ago was diagnosed with pseudotumor cerebri(i had a leak and was always dizzy). I had a chunt put in last may and ever since then had less feeling starting in my arms and now its everywhere. Sometimes I get tingling and numbness, but its kind of like a general weakness almost like i cant feel my arms or certain areas there. I also am very dizzy again and feel pressure on the back of my head. MRIs appear normal(I had them a few months ago) though. What should I do? Also I can't get my period and they want to put me on birth control, but that is dangerous with pseudotumor. What can I do to get my period without hormones? Are there other treatments?
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  (+ info)

Info on a disease called pseudotumor cerebri?


I have a disease called pseudotumor cerebri(aka Ideopathic intracranial hypertension)It feels like I have a tumor;but it's a buildup of spinal fluid.in the brain. It gives mesevere pain almost dailyIt can cause blindness Does anyone out there have it or know anyone who does?
Do you have a lot of pain?Do you have:a shunt,does it work?What meds work?What have the drs.done for you?how's your sight?--I have daily pain and would appreciate any help
thanks,

shelley
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Shelley,
I have had PTC for almost six years now. I have had one V.P (ventricular peritenial) shunt, but it had to be removed when I had bacterial meningitis, which obviously caused a shunt infection. That's the problem w/shunts, they can require several surgeries (revisions, infections, etc.). I'm not sure how much the shunt helped or not. I've been w/out one for 2 1/2 years now and haven't seen much difference. By God's grace, I am having fewer and fewer headaches. My pain doctor has had me on Methadone (30 mg x8 hrs.), which was a lifesaver for me, but I've taken it now everyday for 4-5 years now, which I'm not happy about, but it's the ONLY medicine (other than 100 mg of demoral w/phenerghan every 3-4 hrs when I'm admitted) that's EVER helped!. So, you've gotta do what you gotta do when you're suffering from horrific, sometimes suicidal headadches. It takes a while for you and the Dr. to come up with the right combo of meds, so you have to be patient w/trial and error. Just be sure to tell your Dr. when something works or doesn't work.
As for the eyesight question: In all of my TONS of research and talking to my neurosurgeon at the Cleveland Clinic for five years, Blindness is not a sympton. The main eye problem that can happen w/PTC is papilladema, which is why doctors constantly check your optic nerve for disc elevation, etc. I've been very lucky in this area, my neuroophlamologist has been very pleased w/my optic nerve, he thinks that we caught my PTC early enough to prevent papp., I just have to see him three-four times a year, my neurosurgeon every 2-3 months, my regular neurologist every 5-6 months, and go to the Cleveland Clinic a few times a yr for testing, etc.

I remember what it was like when I was first diagnosed, and all the dozens and dozens of lumbar punctures, catscans, mri's, etc, etc, etc. For about the first two years, I litterally was hospitalized every four to five weeks for 8-10 days at time, getting I.V. narcotics, steroids, etc. Also, I had to stop taking Diamox (which you're probably taking) b/c it kept making the CO2 level in my blood drop to dangerous levels, causing me bicarbonate acidosis. so, instead of Diamox for the PTC, I'm on Lasix.
I think I answered all the questions you asked, if not write me back, obviously I'm not a doctor or any other health professional (I'm a High School Spanish Teacher!!), and I'm just a well experienced patient!
Take care!
Susan J,
Columbus, Ohio  (+ info)

Plan B gave me Pseudotumor Cerebri, Can I sue?


Well, about a month and a half to two months ago the condom broke when my boyfriend of three years and I were having intercourse. He of course panicked as soon as he realized what had happened and wanted me to take the morning after pill. I ended up taking it the next day and all was fine. About a week later i started having excruciating headaches, i felt naseous after eating, tired all the time, etc. My first thought was that the pill did not work and I was pregnant. A few days later I got my period and was relieved, although the headaches only got worse. The next monday I went to visit my regular doctor and she told me i needed to make an appointment with OB/GYN because it was probably just the amount of hormones releases from the pill. The soonest they could get me in was the next month because i was unable to take off work again. So i took off work and paid $20.00 for absolutely nothing! Two days later I spoke with an advice nurse through my insurance compnay (kaiser) and was told that there was no after hour care that i could recieve, even after giving her my symptoms which now included blurry to almost double vision. She told me it was unnecessary for an emergency visit and to follow my doctor;s instructions and see my OB/GYN. I then went to a different urgent care and had to pay $125.00. He practically gave me another physical and sent me on my way. I was so upset that i STILL couldnt get anyone to help me. The next day I made an eye appointment because that was what the urgent care doctor advised me to do. Needless to say i didnt need glasses and wasted another $55.00 to get my eyes checked. When i was explaining to the eye doctor about my very blurry almost double vision he said he was very concerned hearing that and that i needed to see a neurologist. when i called kaiser they would not let me see a neurologist because i had no referral. I ended up going to the Kaiser Urgent Care, which i was told didnt exist by a kaiser advice nurse (thanks alot!), and they sent me over to the hospital to get a catscan. Everything was normal. From my symptoms, the emergency room doctor was able to diagnose me with pseudotumor cerebri. I had to get a spinal tap and take diamox for the next 30 days. I am now fine, and wondering can i sue the company that makes Plan B? I was unaware this was a side affect, a very very serious one at that. If i would have known all of this was a possibility, i never would have taken the pill.
I researched online and read every inch of every paper that came with it. Pseudotumor cerebri is a pretty uncommon thing to get from an emergency contraceptive. BUT IT HAPPENED. Its not the fact that i was unaware it was a side affect, I was fully aware of all the side affects listed. It was the fact that to me this was not a possibility because they have no warning about it. I dont just want to make this a point to get money, although it would be nice to get paid back for what i had to spend and for the 2 weeks of pain and suffering. It's also about the fact that i want them to be aware that their product can do this and that they need to make everyone else aware. IT IS NOT A PLEASANT SURPRISE. If i cant sue them, how do i go about informing everyone? help, please!!
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I am not a lawyer, but it seems to me that you probably cannot sue just because you were unaware of the side effects. Wasn't there a pamphlet or something with the pill that listed this as a possibility?

Sorry you went through that - sounds awful!  (+ info)

Is there any connection between malignancy(cancer) and Pseudotumor cerebri?


Hey wud want to share dat my mom has recently found that she is suffering from pseudotumor cerebri.I wish to know is it connected in any way to tumor or cancer mite be?
please its a request dont just answer for fun and for gaining points. If u really know the answer im waiting !!!!!!!!!!!!!!!!!!1
Ill be really thankful to u!!!!!!
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It is not cancerous and because your Mum has it, it does not make her more likely to get other cancers.
Take a look at the link below, its has lots of good info. I wish you Mum well.  (+ info)

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