Pseudotumor Cerebri

[NJM75116]

I was diagnosed with PTC last year.  I have had many LP's with CSF close to 400 each time.  I have had an optic nerve sheath fenstration last year as well as gastric bypass surgery all belived to be the cure for my PTC.  This year I had a lumbar shunt installed.  I am continuing to have headaches, throwing up, and have been in and out of the hospital many times.  Doctors pointing at each other one says it is a GI problem the other it is the PTC.  Now my neurosurgeon wants to remove my shunt.  It is causing bi-lateral subdural hemotomas which are getting a little larger.  My neurologist has realeased me saying he cannot do anything else for me.  The neurosergeon is going to release me once the shunt is removed saying I need a head and pain management specialist.   Did I also mention I have had a neurocongitive test and have been deemed unemployable?  I need someone who knows PTC.  I was also given Fentanyl patches which have a side effect of increasing the CSF.  I need an expert.  It is my hope I can find someone to help me.  My insurance has mentioned sending me to a MAYO clinic.

Thanks,
Sorry for any spelling errors it is all part of the PTC.  


This discussion is related to Pseudotumor Cerebri and abnormal CSF tests.

[mamita00]

Hi! I'm so sorry for your woes. Ptc really is a pain to say the least. I've been struggling with it for almost 2 yrs. now. I found out when I went for an eye exam and me opthalmologist asked me if I had a neurologist. I replied yes and then there was a lot of calm, hushed talking and then him telling me to go straight to St. Joe's ER and that he'd call ahead. He told me what he thought it was- it was- I was in the hospital for 3 days and such is life.
I would so go to Mayo clinic if it is feasible and you don't feel that those doctors are adequately doing their jobs. You know you best, you know what's right and what's not, even if it is hard to explain - let your voice be heard.
I hope things work out for you. Don't worry about the spelling, I do the same thing now. I won all kinds of spelling bees and awards in school and have always been a very good speller but since the ptc my words  end up misspelled or spoken sentences are backwards. Take Care! :)

[medchick0523]

Yay! I'm joining the party, I've got PTC as well... and I live in Michigan too, mamita00, near Grand Rapids.

I think doctors throw the weight thing out there because they've got nothing else to offer. I know very few women who have actually gone into remission after weight-loss.

Most definitely, if your insurance company is willing to pay for you to go to Mayo, I say get the appointments made! Though I'm not sure where you live, my neurologist suggested Cleveland Clinic to me at one point, they have a headache/migraine disorder clinic.  

I could never figure out whether it was the stress impairing my cognitive abilities or if it was the PTC alone... any thoughts?

Best wishes... keep in touch!

[mamita00]

OMG!!!! Iam so home!! 'm just estatic because it is unbelievably hard not having anyone who truly understands what I'm going through and now I have PEOPLE :)

Yeah I was disappointed with Johns Hopkins Hospitals web sites neurology dept. for saying that weight loss can CURE ptc! NOT TRUE!! Due to a hysterectomomy and the already lots of meds I take a gained lot of weight. I have lost 30 lbs. and the ptc is still there and horrible.

I think stress aggrevates the ptc because when I'm stressed my already hurting neck becomes even more pained. I feel such pressure in there it's ridiculous.  My neurologist just put me on a muscle relaxer to help.

I hope you and any who read this has a low pain if not pain free day :>)
  Feel free to write and keep in touch.

[Cath278]

Hi there very hard to write name! I have just been diagnoised in the last few weeks but it has been a long hard road to get here. My advice? listen very closley to your instinct and when you know what they are saying, start yelling!Keep telling the drs what is going on until they hear you.Some one will .i was nice and compliante for the first few mths then I thought, to hell with this ,Im getting no where. I stood up for myself and am now being looked after.Its a pity it has to come to this. I really do wish you the best,Cath278

[Cath278]

Hi and welcome! I see you have met the lovely medchick0523. She is just great. I have only just been diagniosed and still coming to terms with it but hope we can comminicate in the future. This site is brilliant for help, information and support. you will make a lot of good friends her. Hope tp talk soon,Cath278

[mamita00]

Hey and thanks for the welcome! I'm just thrilled to pieces by this site already. When I got home I couldn't wait to check it out and see if anyone had written and what was going on. I'm so thankful to have this as a new resource.

How long ago were you diagnosed? I hope you have good doctors. I really like mine. I did, however go through two neurologists before my third one. I had to fire the first one because he wouldn't listen to me, the second one was a weird mix of I fired him- he dumped me. He said I only needed to be seen by my neuro-opthalmologist ( despite the headaches ) and I disagreed ( so did the n-o ), but I think that was his way of getting rid of me because I have a long medical history .  How's your pain? I hope you have more good days than bad :)

Nice meeting you!

[medchick0523]

Cath.. you said I was lovely! Aww... poor dear, you haven't know me long enough. I'll give you some time to take it back.... lol.

I definitely second what Cath said.... listen to your instincts! If you are tired, sleep! You're only going to feel worse by continually pushing through. If you need pain medication, for goodness sakes, take it! At first I was extremely worried about becoming addicted. Though if you truly take it when you need it, it will be merely a physical dependance.. and if it helps you get through the day, it truly is worth it. I was on fentanyl (duragesic) patches for about three months, there came a point where I didn't really know I had a headache and I decided to go off of it to see if the medication (Topamax at the time) was working... I tried going off of it on my own and only made things worse... however, I worked with my physician, and tapered off over a month (which I thought was too long of a period of time... but I love him for it now). Now I'm on morphine... have been for the last 14 months roughly, take it religiously every 12 hours.. I've found it's much better to take it and keep your pain under control (keeping therapeutic levels) than to wait until you really need it and needing more to get it under control.

Yes!! Now you have people!! :) I've found that this has helped me more than anything!!

Hope everyone sleeps well!

Samantha

[Faulinz]

Hi, my name is Lindsay. I found this site while searching for a Dr. in my area that specializes in the treatment of PTC. I just read over all of your lovely letters andthey brought me to tears. I am so happy that I am not alone in this. It has been increasingly diffiult to go about daily activities with this problem. Just recently, my left eye has gotten worse(my left eye was the only one that was affected by this at any time) and I am having trouble keeping my eye fully open. Has this happened to any of you? Another question, I am a relativly recent college grad. and took a job with no health insurance. As we all know, our condidtion should be closey monitored. Do any of you know Doctors or specailists that treat PTC for low-cost? I am  pretty desperate right now and I do not want to get worse. I live in Fort Wayne, Indiana and would be willing to drive a distance for some help or support. Thanks for reading my letter. I appriciate it  and look forward to hearing back from you all. !!

[bethaniet586]

     Hi I am Bethanie, I live neer detroit michigan and I was dx'd with PTC or what I call IH a little over 2 years ago. It is sad to see and read all these stories. As comforting as it is to know someone understands, it is sad to realize other feel as you do.

      Lindsay the eye thing is normal, for this condition anyways, I am considered legally blind in my left eye yet my right eye still has a decent amount of vision. Although I personally have not had difficulty with keeping my eye open, it effects everyone differently. When your looking into this condition and try to rashionalize all you syptoms (symptoms) look at how much of you brain is effected by excess pressure and you will understand you syptoms (symptoms) more... maybe not like it but understand.

     Just wanted to say hi to everyone, hope you all have a few good days soon!

[rosemary67]

I ahve been told I have PTC too. I started with blurred vision and headaches, then my eye dr refered me to a neurologist. Had a MRI then met with a Neurosurgeon who was ready to perform surgery on my brain because my MRI showed I had Chiari Malformation. Anyways my surgery was going to happen in a week, but then decided to do another MRI, which miraculously was normal. I still have papilodema, so now they say i have PTC and need a lumbar puncture i am totally lost and do not know who to beleive and what to do. I have put on about 20 lbs since i have taken steroids for about a year because of my arthritis, do u think this weight thing is right may be then that is my problem.

[bethaniet586]

The weight thing is here nor there, I lost weight and it changed nothing yet other loose weight and it is a temporary treatment. You should go get you lp done and find out if you pressure is high, if the pressure is high then you know you have ptc. But I would check on the Chiari Malformation again because alot of ptc patients have that malformation as well. Good Luck!

[Cath278]

Hi you guys and welcome!Trust me when I say you have found your new best friends. Im just back from hospital, more tests, so a little too tired to address every thing properly but to answer a few questions,First, Beth, boy ! you sure know your stuff!I will look forwadr to asking you questions in the near future. I agree with you about the weight issue. Its not a big deal in Ireland, not one dr has said anything  to me regards my weight. I also have put on about 30lbs since Dec because of streiods but prior to illness was not over weight.
One of the worst things i find about this illness, is there is no definite pattern, no "check" list. I have paps in both eyes which have caused me the most pain and trouble but the next person might not have them. I have blurred vision but my peripheral vision is good.  I have trouble keeping my eyes open to. Hint: i got eye drops for "dry eyes" and they have helped alot. And thank God for sunglasses. i also got a cold mask in the chemists,drug store. You put it in the fridge till you need it and it can give great relief.
As far as I know and understand, if you have IIH,BIH,PCT, your readings from your MRI will be clear. Thats good news. Its by proccess of elimanation that they will decided its PCT. It means its not a tumor or some thing else.
Like beth said, you have to have a lumber puncture done to see what your opening reading is . That will decide if you have PCT.  If you need more info about the readings message or post note me, just to tired now.
This is a very frightening time for all of us but on this site we can laugh, cry, ask a million questions and there is always some one to help and support. You are not alone any more. Good sleep wishes to all!Cath278

[rosemary67]

Thanks a lot guys, i am just dreading to get anyhting done anymore having two MRI's that look different and all the dr visits have really confused me, I do not have a LP appointment ofr another month and a half, you think the dr ;s will think you are in so much trouble they will give you one sooner. Yes I have a lot of qns about what can the tell from LP except for the pressure and then where do you go from there

[NJM75116]

Thank you for your comments and concerns.  My pain management dr put me on fentanyl patches and I had hallucinations.  I am now on oxycotin.  It helps my headache but, I can no longer work.  They even denied my life insurance. once they found I was on oxycotin.  I have another CAT this week to see if my hematomaos have increased.

I wish you all the best and a pain free day.

About the weight I weighted 247 when diagnosed and now I weigh 140....it changed nothing.

Take care everyone!  Nancy

[mamita00]

Hey everyone! I've been missing out on the party! So many new people that I haven't met yet. To them I say hello, my name is Kim.

Sorry Lindsay, now specifically to you. I myself am without insurance and have had to work magic so to speak. I know it's not what's first on the list of things we want in life but try for state medicaid. If you can't get that then try your local hospital. They may offer a community health program such as a free clinic and low cost doctors. I know with this being such a rare and special illness that makes it more difficult. Too the hospital may offer a low cost insurance plan. Also, do you already have a neurologist? If you do explain your circumstances. There are good doctors out there who are willing to cut their fees for patients w/o insurance. Mine did and I am very thankful. Your local family independence agency should be able to help you or at least direct you to someone tat can or even the health department. They shouldbe in the front of your phone book. I hope you get the help you need. I was terrified when w lost our insurance. Losing his job was bad but with all of my health problems I thought I was going to die at the thought of no insurance! I'm getting through it and you will too. Hang in there, you are not alone!!

Hugs,
Kim

[kzhotrodz]

My name is Karen and my sweet 11yr old daughter has been suffering with horrible headaches for almost a year.  She has missed a half a year of school because she is in so much pain.  She doesn't do anything she likes to do any more not even play with her friends.  She was diagnosed with PTC 2mo ago and 2day we saw the nuerosur. She;'s had a LP  all the MRI's MRV's Venogram, and The only thing the surgeon really hit hard on was weight loss, weight loss, weight loss.  It makes me feel like a really bad parent.  I have 2 other children and my husband died almost 3yrs ago of a Brain Tumor.  So this happening to my baby is killing me and now all my kids have to go thru is dr. test. hospital stuff.  They want to put her in the hospital and stop her Diomex(can't remember how to spell it) "Drill into her Brain" Dr.'s exact words in front of my daughter put a rod in check the pressure. Restart the Diomex and recheck the pressure to see if it has changed if it hasn't he wants to put a shunt in.... I have no idea what is happening, why this is happening to her and what to do?  If she looses 40 lbs she'll be 100 lbs at 4ft7 in and the Dr. is convinced that if she looses the weight the headaches will go away.  Her LP was at 30 and her venogram showed nothing unusual except she had pressure on the right side of her heart but the pressure is at 10 and he said that was nothing to be too concerned about.  I have no idea what I am even talking about.  But thanks for listening because I'm really scared.

[mamita00]

That's terrible that you have so much to go through. First of all..slow down.Tell the docs to back off if your daughter is not in immediate danger. You need time to think and to process what's happening and what may happen. And there's no need for scare tactics. Do understand that there are unpleasant to think about treatment options, but what sane person wants a shunt :) ?  It's out of necessity if that is your decision. It's ok, breathe.

You're not a bad parent, ptc happens. I gained weight due to medical reasons and medicine. The ptc hit me while heavy but now  I'm 30 lbs. lighter and it's still here so the weight thing is a **** shoot. Definitely not a cure as some would have you believe. Change what you can because that will help her in the long run and her case may be different from mine and others whom weight loss didn't affect and she may be that percentage that it does change for the better.

I hope you get some peace of mind and good answers. You're your daughter's voice so speak loudly and make them hear you, not just their own voices. Write down your questions and make sure they get answered. Best of luck- Kim

[tlc1723]

I'm so relieved to have found this site - sad, too - I'm sorry so many of you are being affected by this...I,too, was diagnosed with PTC about 5 months ago.  I was put on Diamox, but it caused me to have to go to the ER repeatedly for kidney stones, so they took me off of it.  My new Optho-neurologist is getting ready to try me on Topomax (topamax).  Like most of you, the main thing that I've heard is "lose weight".  Unfortunately it seems like when I've tried to talk to doctors and other people about the fact that I've read that weight loss doesn't always work - well, I get the impression that they think that I'm somehow trying to make an excuse for not losing weight or something.  I am losing weight and have been trying to exercise more  but it's been a slow process (I'm waiting to have surgery in a week or two for an umbilical hernia that has sort of restricted my ability to exercise).  It's all really scary.  I told my husband that I feel like I have some sort of mild dementia or something.  I'm not as good at thinking about things as I used to be. I feel like I miss social cues, that I don't really know what is going on sometimes.  I'm a lot more clumsy.  I get tongue tied when I try to explain things, and not just logical things like "Where did you put the car keys?", but things I've never had a hard time explaing before, like how I feel...Mainly I just feel confused and scared that I can't trust my own perceptions anymore.  
I just wanted to say that I really agree with what Mamita00 said to kzhotrodz about telling the doctors to back off.
I had to do that with the doctors I was seeing.  After I got diagnosed I all of a sudden found myself in a whirlwind of doctor's appointments.  I was going one doctor or another almost every day for months.  I finally had to just put a stop to all of it.  I refused to see any of them for almost 6 weeks while I sorted everything out.  In the end I decided to change doctor's (the first one was quite a drive from my house, plus I didn't quite care for his bedside manner).  I have refused the operation for now, but have agreed to being closely monitored.  This way I can continue to exercise and to lose weight as I am able, knowing that if my eyes start to get worse they can catch it pretty quickly and I can opt for surgery.  I ran across an article that suggested trying Cranio-sacral Therapy as an alternative treatment and so I have been trying that, as money permits.  I have only been twice, but for me, personally, it has helped, especially the 2nd time...my headache was so bad my husband took me to my therapists house in my pajamas and, in an hour, I felt great.  I don't know why it worked for me, but it did.  Other than that I just take my vitamins, try to eat right and sleep right and try very hard not to be stressed out.  So far I feel  preety good most days.  I hate the headaches, the nausea and the confusion, but I'm trying really hard to work around them.  I guess I'm trying to accept that this may be a cronic condition that I have to live with, not something that is going to just go away.  I'm 42 yrs. old and this PTC thing is the latest thing on a list of seeminly unrelated medical issues that have come and gone for the past 4 years (gallstones & emergency surgery, a hernia that was a result of that surgery, having an (undiagnosed) allergic reacion to all the meds I had been put on which resulted in sores on my hands and feet so bad I was bedridden 2/3 weeks a month for almost 2 years).  But the worst thing over the past 4 years has just been the stress of being sick/feeling sick/worrying about getting sick.  Since I took my little break from the doctor's 4 months ago, things have gotten much better, mainly because, like so many people here have already done, I stopped letting the doctor's scare me and push me around, especially when they don't even know what causes this or what will cure it.  The way I figure it, when it comes down to it I am my own best judge of what is going on.  Until they figure out what causes this, the doctor's will only be able to guess at the treatment.  It might be an educated guess, but it's still a guess.  And I'm sorry, but I just think that just because someone has the technical ability to perform a surgecal procedure it doesn't necessarily mean that they should race to do it, especially knowing that they don't really know if it will work or not.  I'm not saying there isn't a time when surgery is necessary.  I'm just saying that I think doctor's who are treating this need to proceed with caution...slowly  & carefully...I'm sorry, I know this is long. This is the first time I've really talked about all this with other people who are going through it too...I guess the only other thing I would say is what some of the other folks have said:  Trust your instincts! You know your body better than anyone else!  I wish us all a pain free, beautiful days.

[Henricogirl]

I must be dreaming I have had ptc for a little over a year now And i have never meet anyone who has it. I am so into the docs know nothing it took the best nerologest in virgina 9 mounths to dignos me. Then theres my mom she says this will only last at the most 2 years. Now i know that it is all bull. Im not shore if this happens to any of you but I pass out with ptc they said it was a sudden rise in spinal fluid that causes me to lose concenness it has happend to me almost 20 time this year. Then my mom ask me if I was faking can you belive it she sits with me while I cry bc of the pain and because every time i pass out Im afraid I wont wake up. My parents wont let me take anything stronger then 3 Advil and it does nothing the when I call from school they say I need to stick it out. They have no Idea how much they hurt. If you have any advice on what to say to my parent bc sence I started the school year it has only gotten worse. Im sooooo glad i have finaly found people that understand.

-Tori

[vhender]

I wanted to let you know that I think that it is great that all of you are helping one another.

My daughter has IIH/PTC...we have run the gamut of Dr's which I have to say has been eye opening.

I agree with all of you that say to tell the Dr's the back the hell OFF! You need time to seek out information to educate yourself and then form a course of treatment that will be the best plan for you.

I have told many a physician that we are not in it for the band-aid we are in it to win it and want a solution to this illness.

I want to share that we have cut out many things that seem to help. We as a family no longer eat or use products that contain dyes or anything and I mean artificial. We try to live by the motto "if you grandma can't identify it well don't eat or use it"

As for the medication and the form letter reply of the "SHUNT", I have learned that this is a serial answer that the doctors must take a class to hand us all the same song and dance :(

I know that there is no answer YET but I feel it in my soul that there will be and the doctors are missing something that is outside of the "box"!

I am hopeful and this thread makes me happy that there is a place that people can come to regardless of where they are in their or their loved ones diagnosis is!

I am happy to share any of my knowledge or experiences.

We were lucky to be accepted into a world renowned neurosurgeon that has his specialty of IIH/PTC. I am not fearful nor ashamed to step on any of these doctors by wringing out there brains with my barrage of q's...so I appreciate that I can post to this forum and hope that we all can brain storm together!

I am trying to reach kzhotrodz who posted in Sept. it is so odd to me because she describes the exact symptoms my daughter has with the right atrial pressures. I am curious of any of you have had this identified with a mvr/cardiac cath test done. I have found out that most doctors do not seem to continue with more testing other than finding elevated pressures and then giving you the blanket her you go diagnosis. I am curious as to WHY and don't think testing shld stop until we have found WHY!

I would like to gather info so I can go and approach my daughters neuro and neuro surgeon along with her cardiologist. Any info would be fantastic!

Also has anyone else done the cranial sacral massage or acupuncture?

Does anyone have trouble with sugar? Do you notice 2hrs plus of eating something with sugar do you have a change in your headache?

THANK YOU THANK YOU THANK YOU!!!!!!!

[thearmbarkid]

I just got out of the hospital today; I was diagnosed with pseudotumor cerebri after experiencing memory loss and confusion at home, with a HUGE headache.  I got an LP in the ER, where the doctor said my opening pressure was one of the highest he's ever seen.  I saw an ophthalmologist while in the hospital, and he said there appeared to be some pressure on my optic nerves...thus the PTC diagnosis.  I was started on a diuretic and sent home, even though the pain in my head hasn't subsided.  This hurts so bad I can hardly function; my doctor told me to take a Tylenol if it hurts, since I'm allergic to NSAIDs (I was on Vicodin while in the hospital, and that realy didn't touch the pain.  I said this to the nurses and doctors, who were completely unmoved.)  I'm at the end of my rope, and have absolutely ZERO faith in doctors. I'm really starting to contemplate suicide at this point.  I can't deal with the pain. I've been having migraines since I had a concussion in 1998, and that pain is NOTHING compared to this, and there's no relief in sight.  It's both maddening and discouraging that these people who are supposed to have my best interest in mind are treating this like a simple headache, and don't care one iota what kind of hell I'm in right now.

[bosslisa]

I was diagnosed 3 years ago and have been put on 1500 mg of diamox a day and told that I need to loose weight.  I have lost 40 lps and 5 ft 9 and weigh arout 215lbs.  I have the worst headaches that I just can't function and my doctors are not very supportive.  They give me hydrocodone 500/5 but it does not touch the pain somedays.  I used to go in and they would give me the lumbar puncturs and now they are saying it does no good as my body rebuilds the fluid within 15 minutes to an hour.  Any advice on what to do.  I also had to retire from my job and I'm 40 so I have no medical and ss denied me twice saying I can work eventhough my docs won't release me.  Binder and binder is working on my case until then no ins.  Life really ***** for me.  Ihate it.  It has taking over me.  Please help.  Lisa.  ***@****.  Thank you