I have psuedotumor cerbri along with 2 vertibry in my neck that are slanted from whiplase which is probably the cause of this whole thing. Anyways I posted awhile back about this and the only response I got was from someone telling me absolutely not to have the shunting surgery I am planning on. And while i appreciate input thats not what I am looking for here. I want to know about this surgery, what kind of recovery time, how well it worked for you or someone you know, and any thing else about it? Thank you
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Q: psuedotumor cerbri
Answers (3)
3/16/10 8:14pm
Hey Sammyjo,
I think you may be talking about me so I looked around for the post and found what I said (because I wasn't sure I said something like that!) and this is what I found: If the doctor whom told you about the shunt insists on it, please run from his office!! What I mean by that is if he is not giving you other options first, an invasivie brain surgery is a pretty drastic first step is treating IIH (PTC). And the thing about shunts are they don't last forever, can and do develop some life long problems (you may be stuck with a shunt probably for the rest of your life). Some of the problems can in a blocked shunt, draining too much or too little, and those are just a few. On the other hand some people do great with them and never have a problem.
Are you having vision issues? That may be the deal breaker? If your vision is a problem, you are losing vision, then surgery may be the option.
But we don't get a lot of folks here who have that kind of surgery. If they do, I hope they come along and give you some help. There are some good sites, I think the one I gave you is good: Intracranial Hypertension Research Foundation
I'm telling you not to have it, just make an informed decision, ok? You can also post your question to the forum and see if anyone there has had one done.
You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.
Good luck
Nancy
3/22/10 4:22pm
Hey there,
No offense, really . And I would have answered you sooner, but I've been out of town since 3/17 and just got home last night.
I am SOOOO very relieved to hear about all your research and good relationship you have with your doctor. You see, we hear from so many people who aren't so lucky, that have rotten luck with doctors, we just want everyone to do exactly what you are doing. And sometimes I get a little, well shall we say "over-zealous" or passionate about it. So really, no offense, I just want everyone to have the best information they can. But here, at MyMigraineConnection, I don't think there are too many IIH'ers who have had shunts. Now, I could be totally wrong (it has happened once or twice 
) about that - but like I said and I think Teri gave you the link, you could check out the discussion forum and see if anyone there has had any experience with them. From what I've read, it sounds like that is the route you may need with your vision being at increased risk.
Will you keep me posted on how you are doing?
3/20/10 9:51am
Sammyjo,
Sorry I don't have any personal experience to share with you about shunting. I have PTC, but it's controlled with medication.
In general, and you probably already know this, the recovery period will vary a great deal from one person to the next.
You might also want to post this on our discussion forum since you're not getting much response here. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.
This all has to be pretty frightening, especially the vision loss. Will you please keep me posted on how your'e doing?
Wishing you successful treatment,
Teri
3/24/10 11:45am
I also have psuedotumor cerebri and am having a little bit of a problem out of my doctor getting any information. Is the stinging in my hands, feet, and legs normal? How much vision have you lost? Mine wasn't very good to start with but its getting alot worse everyday. Please anything you can give me would be nice i haven't had any answers, only peole telling me "we willl just have to see what happens".
3/24/10 8:42pm
I know that it can be tough dealing with dr to help with psc. I found a great website that explains everything very well. I use it to help explain it to friends and family, http://webeye.ophth.uiowa.edu/ips/IIH/PSEUDOTU.HTM. I think the stinging and numbness in limbs can be caused by pinched nerves. You might have a problem with your spine, have you had a mri of your spine? It sounds like you need to find a new dr. I've found that doing as much research as possible has really helped me talk to drs about this. Frankly I think I knew a little bit more about psc then my primary care dr. I have a lot of vision loss. I can't see anything that isn't pretty much directly in front of me. And I do occasionally have times where total eye loss that last up to a half an hour. I hope this helps, and keep me updated on what happens. Remember you have to be your own advocate. A lot of times patients slip through the cracks because drs have to many patients to keep up with, so if you can keep trying new drs. If you don't mind me asking what state do you live in? I've lived in a lot of places and might be able to help you find someone to help you. Good luck.
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By sammyjo1138— Last Modified: 12/27/10, First Published: 03/16/10
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Ok so I just want to say I was in no way trying to offend you or make you think I didn't appreciate your input. That being said i have been doing research day and night on iih. My doctor is great he knows that I do my research and know what I want, so he is really good about listening to what I think and going through the options. So thats why we have decided the surgery is my best option. And yes I have major eye problems. I have papledima, and have been rapidly lossing more and more of my vision for the last 6 months. I can't drive or even focus my eyes to read a book. I did join the Intracranial Hypertension Research Foundation page so thank you for the tip they have a lot of good information.