I know how you feel about being tired of dealing with this. I was diagnosed in 93 and had a VP shunt put in in 11/07. I also could not take the Diamox. I did go through remission for 11 years but when it came out of remission it came back with a vengence.Before I had the shunt put in I had to do LP's about every 4 to 5 weeks. Hope everything goes well, if you need to talk I am here.

I am so sorry that your PTC came back and with a vengence :( I had to have the eye surgery because I was on the edge of losing my vision. It just gets depressing that right when you think it is going to go away (like I did after my eye surgery), it comes back...I'm so frustrated and want to get better. What kind of treatments did you have prior to the shunt surgery and how invasive was that surgery? Thanks for your reply :)

Hi Green Bay, Welcome to the group. I grew up next door as a Viking. 38 is up there and if you have not had an LP since then I would think you would want one especially since you are experiencing vision and sore neck issues. LP is the best way to really know where you are in this whole mess. I haven't had as many as Christie (above)but my next one is Friday so I understand being tired of dealing with this. I was diag in April 08 but have had a headache 24/7 since Aug 07. Friday is number 5 for me, about once every 3 months so far but I wish I had them more often as they give my 4-6 weeks of headache relief.

Many here have mentioned floroscopy (sp) where the tap is done using X-ray guidance that should provide a safer outcome. Also I have heard that the longer you can stay horizontal the better after a tap to allow the puncture to close b4 being subject to the extra press exerted by gravity from a vertical postition.

Unfortunately this is just part of our new life with IIH/PTC and we all need to find our own best way to deal with it. Hope some of this helps.

I'm freaked out too so at least you are in good company.

TJ

Hello room,
I was dx'ed in May 08 and have had the optic nerve surgey in 9/08 and still have to go for the spinal taps my numbers seem to be a little lower since the eye was done but still in the 30'ss and 1 time 40's. A clean ( with xray) tap is the way to go wwithout( dirty) they are just poking around. I've have 6 zI think and thet keep getting easier ans easier to deal with becaUSE MY PRESSURE IS HIGH AND YOU JUST HAVE TO LAY DOWN FLAT ATLEASET FOR TWO HOUR AFTER. SOME PEOPLE NEED A LITTLE MORE BUT i FIND AFTER THAT 2 HOURS i JUST HAVE A SORE BACK and sometimes the lighting going down the leg which isnt a big deal for me. I will be going to see a nuero-surg for a shunt in a week or so, looking forward to that. But I did see a new neeurro-guy who stated there is a tube that they can put in your back and it keeps the fluid levels down. But I think it's a temp fix I forgot what it was called. anyways Yes spinal taps SUCK but we have too get them....TJ if I don't talk at cha before then good luck with you tap dance on friday!!!

All that I had was basically LP's since I could not take the meds. The surgery was not all that bad. They do go into the brain but considering what I had been through for over 2 years I was ready for it. I am feeling much better now and think I made the right decision for me. I just could not stand being sick any longer. I would not know what it was like to go 3 or 4 months between LP's. I never made it more than 6 weeks and that was pushing it.

Good Luck greenbayfan1 and TJ on your LP's. And good luck Duchess on your neuro surgeon appointment. Let me know how that comes out.

Thanks Christie,

The LP proceedure is one thing but this time the next steps after the LP result is on my mind more than the LP proceedure. Good news is I should have some relief for a while. My fear with the intensity of my headaches right now is that once again my pressure will be higher than all previous taps. To date each one has been higher, slowly creeping up even though we are also increasing diamox dosage. If that is true I think my only option is going to be a shunt as I have maxed out on what my body can handle with diamox. I am a better candidate for a LP shunt which is a lot easier operation but it is still an operation. I know that there are 100's of success stories with shunts compared to the horror stories that generally end up on support groups so it is a huge bonus for me to have you in the group sharing your positive experience with a VP shunt.

On the other hand if my pressure has not creeped up then something else has gone wrong and who knows how long that may take to figure out.

Thanks for listening. Time to try to get a couple hours of sleep b4 the west coast wakes up.

TJ

TJ- you have valid concerns and bring up good ppoints. BUT the thing you must look at is have you had enough? are the meds working for you or are you working for the meds? are the meds helping are they just masking? In my case I have had ENOUGH more than enough if I had insurance earlier this would have been taken care of a long time ago ( it's almost been a year on steriods, diamox, hard core pain pilL), I am eworking for my meds and the med are barely masking. So the next step is a big one but it is one I am willing to take cause this is crazy. I am starting to become the "typical " PTC suffer I have gained 60lbs that is alot when you normal weigh 110lb. Its taxing on my body physically and on my spirit and messes with me emotionally. It's very hard. Hope you had a restful evening. Good A.m. room.

TJ,
Duchess is right. That is what my decision was based on. I had enough. It goes back to that quality of life I was talking about. At least you have 4 to 6 weeks of relief with the LP, I did not get that much. I remembedr 3 years ago I gave my husband a surprise birthday party for his 40th and about 10 pm I had to stop the party so we could leave because I got one my headaches and was in bed for 3 days. At least now I can plan my life and not have to worry about if I will feel up to doing anything. Now I live for me not for my headaches.

Morning all. I was reading through this and am beginnig to think something with my situation is not quite right. I have had 2 lumbar punctures and I cannot say I found any relief from either- the first one may have had any benefits overlooked due to the massive post LP headache that went on for days. But the scond was late January and I noticed no relief (opening pressure was 33 and closing was 20)..should I have felt more relief?
And as for the LP lay own debate- both of my LP's have been by different docs- the first had me lay flat for 4 hours and I developed a headache like no other The second time the doc said I had to lay flat for about 20 min and then take it easy for the next couple days. With my outrageous fear of the headache I asked her why she wasnt letting me lay flat for four haours- she presented some resarch studies that found that laying flat makes no difference whether it be 20 min or 6 hours- she says it's the ease of the puncture. i.e. poking around with the needle looking for the target as opposed to getting through to it on the first try. As nervous as I was I followed her advice, laid flat for 20 min, went easy for a couple days and drank lots and lots of fluids and caffeine and it went beautifully- no headache at all.
I had no idea until reading this that LP's on a regular basis was a form of treatment. You guys are just a wealth of knowledge- thanks.

Michey-
With a openong pressue of 33 they should have taken you down lower than 20 so that's probably why you got little to no relive with the last lp. Yes recently I have heard doctors state that laying down for hours is no great help all you relly need is time for the puncture to clot which with me is usuaslly about 45 minutes then I go home lay down for an hour for good measure. Light activities though. Yes we all have our experiece with PTC but in the big picture it all ends up the same. LP's and meds and or shunts. Have a great day..

All three of you are right(Christie, Duchess, Laurie-my wife). I can not keep going like this. I guess I am just a little tainted by the negative press I've read about shunts. Shouldn't be. I am an engineer by education and right now I wish I had gone in to the medical device industry. It would be pretty rewarding knowing the hardware you designed and made actually saved lives and/or improved someone's quality of life.

Christie, How did you find this super hero doctor? I guess that is the next step to success is finding a good doctor who has done 100s of these things and using the right hardware.

TJ,

My neurologist sent me to him. He was absolutly wonderful. I would recommend him to anyone in my area. He has done 100's of these.

Christie

my neuro never tells me what he closes at, only how much he takes out. Guess I will add that to the conversation on Friday.

Does anyone else know how much they take out?

Hi everyone-
Thanks for all the replies...I wasn't able to reply sooner because my computer was getting fixed. It is so nice to know that I am not the only one out there with PTC, but it makes me sad that we have to deal with this at all. I am getting really nervous about my LP on Friday...my nerves are about shot :( Is is aspirin that we aren't suppose to take prior to the procedure? My doctor didn't really tell me.

TJ (aka Viking)-is your LP this Friday as well? That is also ironic that you grew up next door to Green Bay. I have lots of friends that are from Viking land too :) I now live in the south in "OK Land". I wish you the best on your procedure.

Everyone-I layed flat for two hours after my LP the last time and also 24 hours once I got home from hospital and I still got a spinal headache. Is there any secrets to avoiding them? I have heard drinking lots of caffeine helps prevent them as well as drinking lots of water?? I am just hoping they will tell my what my pressure is on Friday while I am there; they did the last time, but it was at a different hospital.

Thanks again for all your support :) I'm so glad I found this site! I will let you know as soon as I find out what my pressure is.