Tuesday, February 23, 2010 sammyjo1138 asks

Q: Pseudotumor cerebri

I just found out that i have pseudotumor cerebri, my opening pressure was 28.5 is this very high? Also my dr thinks the best treatment option is to put in a shunt, how long of a recovery is that? I have tried every medication under the sun and am ready to be better so that my husband and I can strat our family. I just conserned this could prevent me from having children? Any information anyone has would be greatly appreciated.

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Answers (6)

Nancy Harris Bonk

2/23/10 9:24pm

Hi sammyjo1138,

Sorry to hear about the pseudotumor diagnosis, now referred to as Idiopathic Intracranial Hypertension or IIH, but you've come to the right spot for information. First, let me say a big old "NOT" to the shunt for someone who has just been diagnosed. This is a treatment usally reserved when they can't get the pressure under control after a lengthy trial of various medications.

Here is our article about IIH you will find very helpful: Pseudotumor Cerebri (IIH) - The Basics. After you that you may want to look into medications - the popular ones used to treat IIH are diamox (acetazolamide), neptazane (methazolamide) lasiz (furosemide). I use neptazane because diamox didn't like me! But most people do fine with it.

If the doctor whom told you about the shunt insists on it, please run from his office!! Find a doctor who specializes IIH, and that may mean a Migraine specialist. If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

I hope this helps,

Nancy

sammyjo1138

2/24/10 2:04pm

Hello, thank you for your response. I appreciate your addvice but, I have been through the run of all of the medications for IIH. Unfortunetly none of them work for me. Plus only 1 week after my spinal tap my CSF is back up in the 20s, so I need something that will permently drain it. I have already decided that I am going to have the surgery so I am really here to find out more information. Anyone out there have a shunt???

Thanks

Nancy Harris Bonk

2/24/10 4:28pm

Sweetie,

We continually make CSF, it will never be "permanently" drained. We get IIH because either our bodies produce too much CSF, or we can't absorb it properly. My highest to date is 28, I feel the best when it is around 17. How long were you on the med? Did they play around with doses? Have you been to a Migraine specialist? I would go do all that before I thought about brain surgery,and I believe that is what it is....

Intracranial Research Foundation lots of good information.

Keep me posted, ok?

Nancy

Shawna

4/ 6/10 1:44pm

What do you mean Diamox didn't "like" you? My doctor refuses to take me off Diamox because of my severe reactions...he insists the side effects will improve with time. Within two hours of taking that dreaded pill, I'm on the toilet for the next 8 hours while holding a bucket. All that dry heaving cannot be good for pressure, I'm thinking. I took it for two weeks, but discontinued prior to a nerve sheath fenstration and the surgeon didn't want me vomiting for a couple weeks post-op. I like him.

My opening pressures have never been below 60 (highest was 82)...5 LPs in the past 40 days. Vision has returned with the fenstration, but the headaches are murder. I'm just concerned that no one is listening to me...the dehydration I experience from Diamox is severe. In the morning (I take 500mg at night) I will drink 100 oz of PowerAid and NOT urniate until late afternoon. They keep telling me if I want to "feel better" to keep trying the Diamox. Just wondering how long I'll have to suffer the side effects before I actually lowers my fluid production. I can't function, and a shunt is sounding more reasonable all the time. Dehydration causes headaches. Vomiting for hours at a time causes my head to pound. NOT taking it seems to make me feel better. You've had luck with neptazane?

Nancy Harris Bonk

4/ 7/10 5:20pm

Hi there,

Yes, I had luck with neptazane. It sounds like you need some luck with a new doctor, I mean really. Those answers are not acceptable and you deserve more than that from your health care. Have you seen our listing of Patient Recommended Migraine and Headache Specialists. One thing to keep in mind is that neurologists aren't necessarily Migraine and headache specialists. They may say they are, but that really isn't always the case.

I know what a drag it is looking for new doctors, but sometimes it really has to be done.

headachegirl42

9/13/10 3:59am

i am 18 years old and have been living with the same condition for over a year now. i too have taken alot of medication and i hate diamox but it seems to be my only answer. i have been to over 6 different doctors. finally i went to see about the shunt. my doctor had me get a spinal tap while i was on the medication and while i had a headache in the ER. my pressure was at 24. wich was normal for the small needle he used. my first opening pressure when diagnosed was 37, and i had hemeraing in my optic nerves.

he concluded form my second tap a year later a shunt would cause more harm than good. while i myself am still not happy with the medication and now having to take other meds for constant migrains i do know a shunt is dangerous. i also know pregnacy can also bring psuedo tumor on even more so. i would recomend going and getting a second opion and seeing if there is any other cause for psuedo tumor as it can be a secodary disease of something els.

i hope you get well soon

headachegirl42

9/13/10 4:19am

i posted earlier but i myself have a few questions and want to maybe hear from people who may be going through the same thing as i am. when i just turned 17 i was diagnosed with pseudo tumor ceribri. my opening pressure was 37 over a year ago. I am only 5'6" and weighed about 145lbs. I was no place close to being overweight. Since then I have lost about 25lbs to where I am now 120lbs and even now have a hard time keeping weight on. I started taking diamox and suffered all of it side effects. Vomiting, upset stomach, tingling in my hands in feet which would constantly wake me up in the night and even parts of my face tingling and going numb the longer I stayed on the diamox. Slowly my doctor decreased it till I was completely off the first of june. By the 10^th of June I was have serve headache and even woke without hardly being able to open my eyes or move them with our serve pain. I went back to the doctor and my nerves were swelling again.

I thought about a shunt but fist went back on the diamox and while having a headache and being on diamox had a repeat spinal tap. It was slightly elevated and I then got a spinal headache, which resulted in a blood patch a day later. I am now being treated for my constant headaches and for pseudo tumor. I can't stop but wondering if there is something else wrong., they have ran all my blood work with nothing being off, my blood pressure has been low lately, and I have had MRI's MRV, MRC"S and other scans, all clear. What else could this be? What is cause the high pressure? Or am I over thinking this? I have had this condition for about a year and half now. Will it just go away one day?

dianaRN

10/ 8/10 9:46pm

I've always had headaches all my life. I just turned 39 2 weeks ago. About 5-6 months ago I was having some headaches. I have chronic sinus infections and I am a nurse and I work in a doctor's office so I kept getting antibiotics. After about 2 months and still having the headaches that we now starting to focus around my right eye and my vision was starting to change and it had just been a little over a year since I had my eyes checked, I made an appointment to see the eye doctor in the town that I work. I went and they had a machine called an optimap (I'm not sure if that is correct). I paid the extra $34 to get the optimap done. When the eye dr came in to see me he didn't like the way my right optic nerve looked so he looked at it himself and said that there was swelling and inflammation around my optic nerve on right eye. He said I needed an MRI and that he wanted the dr I work for to order it. I did the MRI the next week and I had the results by that afternoon. It was enlarged sella tursica with primary empty sella.
Basically, I was overweight (nothing new to me) and I had high blood pressure in my head, and that I was of child bearing age. My dr said you don't normally do anything for empty sella but he wanted to go ahead and send me to a neurologist to be sure. The next week I saw the neurologist on Thursday afternoon. I took my state boards for RN test 8 am on Fri. morning and then had my spinal tap at 1:30 in the dr's office because the dr did not want to wait and have me do it in the hospitl because they couldn't get me in till Tues and he said I may be blind by then. Now, I'm freaking out. I just took my test and I'm not even sure if I am going to be an RN after being an LVN for 11 years. All I could think about was the needle that was going to be in my back in a few hours. When he did my spinal tap, he said it's almost at the top. I asked him what happens when it gets to the top? He said it comes out. My opening pressure was 360. He said it was like turning on a fawset, the CSF just flowed out. He took off 4 tubes with about 26 ml and brought my pressure down to 14. I had the spinal tap headache afterwards. 7 days on the dot. I thought I needed to tough it out because I'm a big girl, I'm a nurse, I can't be weak. I started Diamox that Fri. night. If I would have known that that was going to be my only chance to have a rootbeer ever again I would have savored it. My neurologist wanted me to see an opthamologist so the dr I work for sent me to dr we refer to all the time. I saw him the next Thurs. The pressure wasn't just behind my right eye it was behind both eyes now but he didn't want to see me for 6 months. I had paid to get my unofficial results even though I was scared to death. I kept telling everyone I hoped I passed but I won't be surprised if I failed. I passed. I was so surprised to see. I am now an official RN and I'm scared to death that I am going to lose my eyesight and not be able to really practice as an RN. I saw my neurologist the day after the opthomologist and he doubled up my diamox. So, then I started having even more side effects but if it keeps me from having to have surgery its okay. I just wish I could have one day, just one day, without a headache. When the headache is on my right side I can handle it. When it is on the left side, it just about brings me down to my knees. I guess I'm wondering the same thing about recovery from a shunt. I'm afraid that is where we are headed. If my eyes keep bothering me, I'm probably gonna have to have another spinal tap and then have to see an eye specialist in Lubbock and possibly have to have the surgery in Odessa for the shunt. I'm scared.

marinemom

11/ 5/11 7:43pm

my daughter was just diagnosed with the same thing due to having lupus nephritis.

She is currently using Diamox. Has that been tried an not worked?

Nancy Harris Bonk

1/18/12 9:27pm

Hi there,

I'm so sorry I haven't responded to your question. I just now saw it. Again, my apologies.

Diamox is used to treat Idiopathic Intracranial Hypertension (formerly called Pseudotumor Cerebri) in fact, Teri Robert, lead expert here uses it for her IIH.

Here is some information on IIH you may be interesting in reading and sharing with your daughter:

Idiopathic Intracranial Hypertension (IIH) - The Basics

The ONLY definitive way to diagnose pseudotumor cerebri

I hope this helps,

Nancy

marinemom

1/18/12 9:36pm

Thank you nancy, We have moved on from the diamox and are trying theraputic spinal taps and extreme monitoring of her optic nerve. Are hands are tied.. the steroid will forever be part of her life, right now with her lupus nephritis is in full swing and has now started chemo treatments again.

Nancy Harris Bonk

1/18/12 10:05pm

Yuck. I'm sorry to hear that. I take methazolimide for my IIH, seeing as I can't tolerate diamox.

Have you been to this site: Intracranial Hypertension Research Foundation they may have more information for you all.

Good luck and let us know if we can do anything for you,

Nancy

marinemom

1/18/12 10:10pm

Thank you. I had found the link a few months ago when we started, I even shared the link with two of her primary docters that are trying every thing in their power to keep this under control. Just one more day at a time.

Nancy Harris Bonk

1/19/12 9:08pm

Ok, sorry, I hope I'm repeating myself too much! If I am just ignore!!

Hang in there and let me know if there is anything else I can do for you, ok?

marinemom

1/19/12 9:22pm

No worries. No repeats. Thank you I will

Nancy Harris Bonk

2/29/12 4:14pm

How are you all doing?

marinemom

2/29/12 5:11pm

We are facing an up hill battle. Complete Kidney Failure from the Lupus Nephritis and TTP. All happened in a matter of 5 weeks. Toss in the 11th spinal tap done for her yesterday... Can only go but up. Waiting on the results from the Kidney Biopsy that was done on Monday. Thats the worse just watching the clock tic...

Nancy Harris Bonk

2/29/12 7:24pm

Oh no, that's awful. What part of the country are you in? Not that you need anymore "stuff" on your plate, but getting a true Migraine expert to see her might be a good idea since she is a more complicated patient with mulitple conditions.

Neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Take care,

Nancy

marinemom

2/29/12 7:32pm

Thanks for the information. We are in CT.. non listed, we however have a few other specialist helping us. We removed our selves from the interaction of the nuerologist at the hospital that takes wonderful care of her. Because as you said they are not specialist, our Rheumatologist went on their recommendation for what is the cause of the pseudotumor and adjusted the medication for the lupus and that it is what caused the mess were are in now. It was a good thing after her third episode we didn't listen to them to have a shunt put it. With all of her medical issues and no immune system, that could have been deadly for her. We are very lucky to have the Dr's we have.

Continue to look at the glass as half full and keep her positive and moving forward.

marinemom

2/29/12 7:37pm

researched those Dr's in a different way.. found them.. thanks for the info

ceci55

2/29/12 7:46pm

I have had two spinals because a while back I had optic neruitis they were all convinced I have MS... although at this point there is not alot of evidance to back that up...First time my opening pressure was 26 and second 24.5 so I started acetazolamide and now all I do is puke puke puke....I have lost 13 pounds in the 2 and half weeks i have been on it. Help has anyone else experienced this, and is there a way to make it stop?

Teri Robert, Health Guide

2/29/12 11:12pm

What has your doctor said about the side effects? There are other medications that can be tried if you can't take acetazolamide. Nancy Bonk, another of our people here, can't take acetazolamide, but she CAN take methazolamide. Give your doc a call, and let us know how you're doing?

Nancy Harris Bonk

3/ 1/12 8:39pm

Hi,

Diamox, a carbonic anhydrase inhibitor, is a medication I couldn't tolerate either. I now take methazolimide for idiopathic intracranial hypertension or IIH formerly known as pseudotumor cerebri. Maybe that is something you want to discuss with your doctor.

Good luck

Nancy

Q: Pseudotumor cerebri

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