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610983 tn?1351309926

Who here has pseudotumor cerebri???

I am just curious to see how many people have pseudotumor cerebri on this forum...?
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Avatar universal
I do,  I have a question I had an IUD and I’ve read that that can cause  Pseudotumor cerebra has anyone else had that issue like me ?
Helpful - 0
18056145 tn?1462794479
diagnosed in 2013 after spinal tap headaches and vision issues was on diamox  and topamax which both failed to control the pressure  shunt was placed  and in process of still healing and have to say sorry but this is a club you really do not want to be in lol
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Avatar universal
http://www.biosciencetechnology.com/news/2013/03/stent-can-replace-shunt-pseudotumor-brain-treatment

I am very interested in having this procedure performed if I am a candidate. Has anyone had this performed and if so, how did it work out for you? This looks very promising. I can no longer tolerate the medication side effects and do not want a shunt!
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Avatar universal
hi i also have PTC i was diagnosed in feb 2013 i only have mild papilldema but my visual fields have got worse in just a few months had to get a LP shunt on june 15 my eye doc said im loseing vision fast i have to see an neuro ophthalmologist on the 23 and maybe get the optic nerve surgery i thought you had to have severe papilldema in order to lose vision so fast but i guess not its how high the pressure is on the optic nerves i hope my visual fields get better and maybe regain some of the vision i lost they still have me on diamox and i still get lots of headaches
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Avatar universal
I'm 21 yr old male. Diagnosed with papillidema. I had an MRI and the result shows that my 3rd ventricle and lateral are dilated. There is NO mass lesion detected. And othere than that everything is normal. What should be the treatment in this case? As much as posible I dont want to have a surgery or putting a shunt. Can this be cured by medicines?
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397460 tn?1268533736
Hi jess. Yes, it could be PTC or IIH as it is now known. I went thru all you have described and more. I was diagnosed 4yrs ago, have a VP shunt and still have daily hds.
I had the shunt done as I was losing a lot of my sight.
If you need some help. Pm me and I will do my best to help you. I have kind of been there and seen it all ! Cath278.
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Avatar universal
to start with I am 33 old female ,about 5 years ago I started with this constant head pressure on top of head and into eyes and forhead ! this happen after my anxiety started after my sister death so I thought it was just from stress ,,but it wasn't going away so I went to regular doctor he says its tension headaches so I said ok went on for nother year still here so I went to a lot a lot!!! of er and urgent cares had a lot of ct scans and eyes test nothing ever came back abnormal so I thought I was losen it at this point well another year passed so I decided to go see a neuro doc he ordered a mrv and mri .came back all clear !....then he said I may have spseudotumour ..I freaked out I didn't no nothing about this ...but I refused the spanial tap now I think I need it :(  but scared ....so my question is could I have this for 5 years ? constant everyday ..and my eye exzams are perfect and I never have pain in head just pressure and I am not over weight I weigh 120 pounds ..seems like its all sinus related hope I may find answers could this still be spseudotunour ?
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Avatar universal
Hi My name is Tina im 25 year ago and i have been diagnose with pseudotumor cerebri. been living with it a year already. finally getting treated since before i did not have insurance, it has been hard to live with it. :( the hards part was the losing of my eye site. i havent met anyone with my condition but really would like to meet ppl who lived with it.
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Avatar universal
Hey everyone. I'm 20 yrs old and today I went to the ey DR. and was told that he's 99.9% sure that I have Pseudotumor but i'm going tomorrow for a CT.. i'm so scared! i've never even been put to sleep before.. I need support and comfort, someone please.. i'm in a panic!! reading some stories on here did however make me feel alot at ease and I thank you all for posting your stories up. I'm just honestly scared i'm going to die.. I shouldn't think this way but it's just hard.
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397460 tn?1268533736
Hi there.I  just wanted to wish you the best of luck on Monday. I had my shunt fitted last Dec and was home within 24 hrs! As soon as I came round from the surgery,I knew things were good.Headaches were gone and eyes no longer blurry. The pain is managable, with some pain killers.The site in your abdomen can be quite sore.Its hard to bend so have every thing ready on the coffee table before you sit down. Sleep,can be a bit difficult, hard to get comfortable but that does not last long. You will be very tired for at least 10 days.Relax if you can and let your body do its job and heal. If you have any questions, feel free to drop me a line.Good luck! Cath278.
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698988 tn?1254327429
Hi Mandy,

Welcome to the club.  I too am going to get a VP shunt next week but for me this will be my second time around,  The recovery is really not as bad as you would think,  I was only in the hospital a couple days, some even go home the next day.  I was up and about with in a few days.  I am not working but if I was I would guess that within a what week to 10 days depending on what type of work you do you should be able to go back to work.  A good question to ask you NS.

As I recall, the worst part was just the healing of the incisions especially the one on the back of my head.  Other than that it is not too bad.

I do not suffer any vision problems so for me I did the shunt for headache, neck and back pain and it worked wonderfully untill it got infected and then it needed to be removed.  Mind you that only 3% of the time does this operation result in an infection but I got unlucky.

Not sure of all you syptoms but hope your operations relieves them all.

TJ
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Avatar universal
i have PTC or the new name its called . In fact im taking the leap and doing the vp shunt on monday Sept. 21,09. Scared unsure what to exspect, will i be able to continue to work, will i have a long healing time.Will i be a freak to my girls , Most of all important question, WILL IT HELP ME WITH MY SYMPTOMS.But i have no regrets, its time i done the shunt , if you ask me 2 weeks past time. Blessings to all. stay in good sprites talk to you all after the surgey.
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397460 tn?1268533736
Can you believe its been almost a year since bethaniet first posted about IIH/PTC? At my last count there were 14 of us.We really should keep in touch, to share our experiences and maybe benefit from each others journeys. I know this site has been a God send for me.I dont know anyone who has this illness except me, in Ireland.( to the best of my knowledge!). This illness is a very difficult one to learn to deal with and with its myriad of symptoms, it is comforting to touch base with fellow sufferers. If I can help anyone, just drop me a line.I will do my best. Here's wishing you all a good day, Cath278.
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961604 tn?1247093404
Another fellow ptc here. I have a lumbar shunt and it worked fine up until about 3 weeks ago. Had a lp and now my pressure is too low. So, now I am on another journey to fix me again.
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Avatar universal
Hi to all the "new" ones I haven't met yet, I'm Kim. Sorry you're stuck in such a terrible club. And of course a big hello to my "old" friends too. I want to know, do any of you just suddenly get so tired that you can barely fight it? It comes on so suddenly any time, any where. I will just go right out and not realize it or remember falling asleep. Way freaky because it certainly puts a strain on driving or even holding my baby.

Also, to anyone with a shunt who was not in immediate danger- what made you make that leap? I know it may sound kinda silly considering....  I'm just so torn. So sick of feeling this way. Constant headache, living in sunglasses, neck pain/pressure. My medicines are really topping out, depakote at 1,000 mg, gabapentin 600 mg, and topamax 200 mg. This just doesn't end
.
Anyhow, that's me in a nutshell at this moment. I hope everyone else is having a better go than I am. ~ Hugs~ Kim
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Avatar universal

I just want to say a quick thank you for the warm welcome! I'll be back to answer the questions and say hi when I'm feeling a little better. I have at least 3 more days coming up this week at the hospital- yay! (ugh)

Take care, all.
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Avatar universal
Thanks for the tip about the ADA. I already had an IEP before this whole mess stared so we put some accomedations on there. And yes i am  phreakin' hilarious I find it better to put humer into it. Its the only way I can go day to day without being bumd out. Also its just in my make-up as Tori. Im always laughing it off. One day I cant get out of bed the next Im joking about it with my freinds.  Its how I cope. Plus, welcome Isn't this place great so many people who really understand and dont feel sorry for you.
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397460 tn?1268533736
Welcome Meisja to our commuity! This is a great site for support and information.I admire your courage and   I second all that TJRasta has said and if you need any thing, give me a call. Cath278
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698988 tn?1254327429
Welcome to the group.  You must be very ambitious to be diagnosed with IIH and find and contribute to a support group on the same day!  And you were diagnosed within 2 months.  Where  are you?  Who are your Drs? How did they figure it out so fast?  Most stories I have read it takes much much longer to get this whole thing dialed in with many misdiagnosed along the way.  Please tell us your story.

You also sound like a lawyer or paralegal or someone whose occupation includes understanding of human rights.  That is a nice addition to the group that could be very helpful to some of us.  Thanks for your advise to Henricogirl.  I can not imagine being burdened with this illness at such a young age.  I hope we can all help her cope with it.

TJ
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Avatar universal

Sorry, not Dioxin, Diamox (but I'm sure you all knew what I meant).

and Henricogirl, your comment "those LP are like your own personal party" was phreakin' hilarious-- PERFECT satire!
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Avatar universal
Hi folks, I was just told of my IIH/PTC diagnosis today. I guess in a way I am somewhat lucky in that I had a quick diagnosis, though. I've been symptomatic (HORRIFIC headaches & double vision, etc.) for about two months. Started Dioxin today, which is helping enough that I can look at my computer screen long enough to find and say hi here. This seems like a great community, thanks for being here.

To Henricogirl; your diagnosis and specific symptoms should qualify you for *reasonable* accommodations to be made for you by your school under the ADA (or Americans with Disabilities Act).  Take this information above, and do some research on the net to help you learn more about what your rights are (and are not), and then try to come up with a few reasonable ideas of how your school may be able to help you overcome the disabling aspects of your  illness and have an equal opportunity in your education. Take your requests, and your legal research, to the school to begin a negotiation called the "interactive process" where both parties come together to find the best solution. Do a really good job and make your mom proud ;)

Good luck and hang in there!

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620923 tn?1452915648
Hello to those with PTC and chiari as a result....u may want to stop by our chiari forum here on MedHelp.We may be able to answer ur chiari questions.

As for one that asked above about how on one MRI it was dx as chiari and the next one not...well we with chiari have asked the same thing and the answer lies with who is reading the MRI study and giving their opinion.

Chiari is misdx all the time and even when it is most NS are under the impression that u will not have symptoms from it and it is ignored.

To recieve propper treatment we need to travel to get to drs that have foucused their practice on chiari and related conditions such as PTC.

I am community leader in the chiari forum...if u have any questions please PM me or stop by the forum.

Godspeed
"selma"
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Avatar universal
I know and you have to love the doc. appt. that come with PTC to. Plus those LP are like your own personal party.
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Avatar universal
IH here too...fun times huh?
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