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PostSubject: Update   Sun Apr 14, 2013 4:53 pm

So things got crazy just after i was last here.
i was diagnosed in early feb due to an eye exam so i could get new glasses. i had the lumbar puncture and was diagnosed and they sent me home since by all accounts it didn't seem like too much of an issue. i was put on 1000 mg diamox a day. i had low pressure headache for a week after i was discharged. somewhere in the couple of weeks after that i joined this site.
on the 23rd Feb i went to the emergency room as my vision had clouded over and refused to clear. i had had cloudy vision on and off since the lumbar puncture but it would generally clear within half an hour or so. they did a lumbar puncture in the emergency room and my pressure was 40...they lowered it down to 12 doubled my diamox to 2000mg a day and admitted me. 24 hours later i was having high pressure symptoms again so they did another lumbar puncture and my opening pressure was back up to 36. since my eyesight still hadn't cleared and my visual fields were extremely constricted this was when they started talking about surgery.
on feb 28th i had the optic nerve sheathe fenestration as well as a vp shunt to try and save my eyesight. after the surgeries i had no vision in my right eye and barely any in my left but apart from that i felt excellent in myself. the plan was to keep me in for the week until my stitches and staples were to be removed and see if my eyesight came back as the swelling went down.
when my stitches and staples came out my vision was still mostly gone so they kept me in over the weekend as they had concerns about my safety going home to my kids when i had lost my eyesight so recently... on the weekend i started having headaches again. by monday i was back on oxycodone and paracetamol. they reprogrammed my shunt to 1.0 on the tuesday but that didn't relieve my headaches so they reprogrammed it to 0.5 on wednesday which also did nothing to help my head. by friday they had upped my diamox to 3000 mg a day. by the following monday i was in a horrible state, i felt like my head was exploding if i remained upright all the time and couldn't tolerate even leaning back into a comfortable position because even a slight angle from upright made my headache worse, i was on codeine, paracetamol, and oxycodone...none of which really helped my headaches but let me be able to sleep for a little while at a time, but all the drugs were making me nauseous and generally unwell. the drs were unsure what to do with me exactly...they were convinced the shunt was working however my ventricle had been small when they placed it and there was only so much fluid they could pump out of it, and my cerebellum apparently sits low in my skull which makes an lp shunt not a good idea. they found another pocket in the left front of my head (i'm not sure if that's another ventricle or not) but they ended up revising my shunt on the 21st march.
the surgery for the revision of my shunt seems like it was much harder to bounce back from (possibly because my body was like what the *%&@ do you think you're doing) i refused the diamox since i felt that was making me nauseous at such a high dose (also one of the side effects is headaches and i wasn't convinced that wasn't half my problem) so they reduced my dose back to 750 mg a day. i was discharged on the 26th of march.
i've been trying to adjust to life with limited vision... although the optic disk in my right eye hasn't died and i am super photophobic in that eye i still have no vision in it. my left eye is slightly less photophobic and i am on the border of being legally blind in my left eye. i am completely off the diamox now and feel much better in myself since being off it (i'm no longer on the anti-nausea or anti reflux tablets and not on the oxycodone or codeine anymore) however i do seem to be retaining an awful lot of fluid since being off the diuretic. i do still have headaches...so far i'm convinced they are not high pressure headaches but everytime i get one i worry that the paracetamol won't kill it and i'll find that i can't lay down.
anyways i just thought i would stop by here and give everyone an update on how i was doing..and to say please please please if you notice any changes in your vision please go see about it immediately...if i had gone in when i first noticed the short instances of cloudy vision i would prolly be back to normal now and if i had waited until after the weekend to see a dr (which i in all honesty considered doing) i would probably be completely blind now.
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PostSubject: Re: Update   Sun Apr 14, 2013 9:32 pm

By goodness Sasha, things have happened so quickly, it must be hard for you to catch your breath.
I am so sorry to hear about your eyesight failing so fast. We never think that the changes might turn out to be long lasting. Perhaps there is a chance even yet of the damage being reversed?? It seems so unfair. You had been trying so hard since the beginning of the year after your eye test to get ahead of this. Do not blame yourself. As you said, your vision always cleared in the past so it would be only natural to assume that it would clear again.

Have you discussed trying a different diuretic? I am taking Lasix (Furosemide) as well as Diamox and that has helped me without the miserable side effects (Lasix just makes you need to pee). Maybe that would help relieve some of the extra fluid.

Hope you get back on track again real soon.
get well 2
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PostSubject: Re: Update   Sun Apr 14, 2013 9:48 pm

Great to hear from you, but I am so sorry that it's been so rough for you. I too had problems with fluid and I am permamently on Co-Amilofruse which does help, so I agree with Linda about perhaps consulting with your doctor about something like Furosemide to help.
I know from experience how difficult it is to adapt to partial sight, especially when you have hoped surgery would restore it. It would help you to talk to people who can help you to adapt and come to terms with this, I found it a great help. Here is the link to Vision Australia who offer lots of helpful information and services. They will be able to help your confidence and independence, as well as be able to help you in other ways too.
Please keep us updated and let me know how you get on with Vision Australia.
Heidi xx
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