Hi Jazzy,

That just plain sucks! I am so sorry to hear this. You have already been through way too many surgeries. I only hope that it was just a hicupp on the radar screen and you don't have to go through another surgery.

Good luck!

TJ

Thanks for responding TJ. I really don't want to go blind, but this is a very tricky and frustrating disease. I don't even know how they check to see if a shunt is working or not, do you know?

Hope you are feeling well, Blessings, Jazzy

Jazzy,

Good question. I guess if your pressure is up and or your paps dont look good then the shunt is not working right. Do you think that you went one step too far in your shunt adjustment and now it is not draining enough CSF?

I dont know how much of a fine line the adjustment is but some shunts do have a bigger difference between settings than others. Might want to ask ou NS about that.

And of course nobody wants you to go blind.

Again, good luck and keep asking Q's.

TJ

Hi TJ,

I only went up one spot from the last number I was at, when I had the low pressure headaches. So right now my only option is to only be able to stay up 6 1/2 per day or be where I am right now, sucks but I will see my NS next week. Again, thanks for your help, Jazzy

So sorry to hear that! I really don't know about the procedure, but I will keep my fingers crossed that you don't need it. I too have found that they treat me as drug seeking, even though I am not asking for drugs. I think i may just have a bitter taste in my mouth about them right now anyway. And vent on girl, that is what this place is for, right?

My old neuro had suggested that same procedure. Thankfully, the pressure is more on my brain than my eyes....if that's good news....lol
It's weird that I had an easier time with the idea of the eye surgery than the shunt...crazy, huh. My optic nerves are pretty swollen, but i still have almost 20/20 vision and my vision feild tests came back good, so no eye surgery at the moment.
Good luck and I hope everything works out. Nobody wants to lose their sight. I was so scared of that! Hopefully they can get things on track for you.

Jazzy:

I was really hoping that this latest shunt revision would have helped. I am so sorry that you are still having trouble. Please don't ever feel like you can't vent here. I want to hear how you are doing.

In addition to the blurred vision have you also had pain and headaches? I ask both out of concern and also because I'm curious if you can have one symptom without the others.

Wish I could be there to hold your hand...or at the very least, tell some good jokes and make you smile. How bout a funny story?

Here goes...

My husband is an account manager. He has approx. 35-40 accounts in a tri state area. The other day he went to see one of his smaller accounts. During the meeting, his client's cell phone rang and he had to take the call because it was his accountant. He excused himself from the room for a brief period and my husband was left behind in his client's office. Out of boredom, my husband studied his client's space...and noticed what looked like a stress ball on the printer. My husband grabbed it, squeezed it...and his thumb sunk right into the ball. As juice dripped down his arm and his dress shirt, he came to the realization that what he was holding was not a stress ball, but rather.... a plum. When my husband's client returned, my husband said, "Two things. One...I'm a dumbass, and two...can you please get me a paper towel?" His client asked, "Why?" My husband proceeded to explain that he thought it was a stress ball. His client said, "Why are you feeling stressed?" My husband said, "Well, I wasn't, but I am now." They laughed and then continued with their meeting. When they were finished his client said, "Boy, I'm hungry. Wish I had a plum to eat." My husband walked out with his tail between his legs. LOL.

I hope this made you laugh as much as I did. You deserve to keep on smiling. Hang in there Jazzy girl...someday this will all be a distant nightmare.

MM3

Hi Crystal,
don't you hate feeling like a drug seeker, it made me so mad! thanks for reminding me its okay to vent.

Hi Shellie,
For some reason eye surgery freaks me out more, go figure. I think it was from dissecting goats eyes in anatomy that got to me, every since then, yucky, lol. The good news is my vision is still good just an enlarged blind spot, which my NO said was normal when the optic nerve is swollen. I'm glad your eyesight is so good, it is scary to think about the consequences of this disease.

Hi MM3,

ROFL!! that is my favorite new story, thanks for the laugh.

Actually since the shunt I have been the best since all this started, I actually have most of my life back! I don't have any eye pain but I feel pressure in my head toward the end of the day with a slight headache, nothing like before. Its more annoying then anything. Thanks for always making me feel better!

MM3, oops accidently posted and I wasn't finished.

I have a good story, I worked at an outside music ampitheater that has the largest outdoor tent (over the stage and part of the seating area) in the U.S. I was working as a cashier in the parking lot and I was in the lot closest to the main entrance. A woman who seemed to be about in her 80's asked me if there was anywhere closer to park. I told her that she was in the closest lot and showed her the entrance...she then squinted really hard and said "well, can I park under that tent"!!!

Hope you are feeling better, I know you might get a shunt, and in all honestly I can tell you, that for me, while it is not perfect, I can at least function for the whole day and hopefully save my vision.

I can't even begin to tell you how much you have helped me, over and over, you are great, Blessings, Jazzy

again jazzy you have insited me i get blurry vision when my pressure goes up several times a day for a max of about 20 seconds i thaught i was going mad and never thaught to mention how often this happens to NO but i will now as i have crap eyesight new perscription every 6 months or so and my feild of vision is deteriorating but still getting on top of my shunt soon i hope will help with all that too

Aw Jazzy, I'm sorry. (I've been out of circulation recently... too hard to type on blackberry)

You deserve healing. I wish for you so many good things. I hope this resolves without scary surgery.

There's been lots of optic nerve sheath fenestration thing talk around here in the past.

Good luck
Bax

Oh Bax! I'm so glad to hear from you, I missed you and was worried. How are you feeling? I hope you are feeling better.

Drgn, yes, please tell your NO, I'm sorry about your eyesight changes, when I was first dx. I had lost about 1/2 the vision in my left eye but after my pressure went down it returned to normal and I pray the same happens for you.

sorry, forgot to tell you all my Do called it "orthostatis' and when my heart rate changes (like with walking) that's when the pressure is affected and my vision gets cloudy, but maybe he meant my blood pressure? Oh well, goes to show you I should take notes.
thank you all, again, for helping me, you are all angel's and I know we have met before this life and agreed to help each other!

Jazzy,

I have not posted for a long time, but check in and read posts every couple of days.

I had optic nerve fenstration surgery in June 2008 because the swelling on my optic nerves had gotten so bad. My surgery was an emergency. I was seeing the NO every couple of days and the swelling was not going down.

The surgery was not all that painful. I had surgery on Thurs and went back to work on Tuesday. I has to stay in the hospital over night as both eyes were done. I also had to be on eye drops for a couple of weeks. My vision gradually improved but is totally not back to where it was before the swelling had gotten bad.

I also had a VP shunt placed in July 2009 as I was tired of all the drugs. My shunt is working great.

I would make sure if you decide to have the eye surgery that you make sure you trust your NO. I had a great NO and he let me know the truth about everything.

Good luck in whatever you decide to do and I hope you start feeling better.

Feel free to contact me with any questions. I've had 4 surgeries in 2 years and now feel great and hope to not have to see a doctor again until next year's followup.

Sorry for the long post.

Karen