Hey guys, I haven’t posted in a while, but I could use some of your opinions.
I’m almost 4 months post op, and not only is my incision not healed completely (still a lot of large scabs that continuously fall off and come back) but since June when I finally was finished with all of my hospital stays due to CSF leak and then meningitis I’ve been having some lightheadedness, but in the recent month it’s gotten severe. I can’t go from sitting to standing without feeling like I’m going to pass out; I have at least 3 blackout moments everyday.
Not only is it scary, but it’s extremely painful. My headaches have also come back full force.
I did manage to make another appointment with my NS for next week (as the last time I saw him a month or so ago he told me he no longer needed to see me on a regular basis, only if I had a problem) I’m seeing him for the blackouts, headaches and neck pain (which I had to suck it up and start going to pain management last week because that became unbearable). After my meningitis my NS said he wanted to do another spinal tap to check my pressures because they were still high when I was discharged, and had mentioned the possibility of a shunt, but never did it. So I imagine that he’ll schedule me for that, but I’m worried because I can’t have surgery now because I recently found out I’m pregnant and am terrified of having a baby while I’m still having so many problems…
Anyway, sorry this ended up being longer than I anticipated, but does anyone have any ideas as to why I’m having worse problems after surgery than before, and what my NS may suggest to fix it to give me my life back?
Hi I had all the same things as u and they had no choice but to fit a shunt. I wouldnt be able to function with out 1 as I would black out every time I tried to get up when I didn’t have it. Like u say they r scary , I haven’t blacked once with the shunt . Good luck with everything .
I have had the same thing happen and I am 5 years post op! I WISH!!!!!! I could get a NS here to do a spinal tap to check my pressure as i've heard ALOT about that being the issue for most post op Chiarians. I black out maybe 4-5 times a day, showering somehow makes it worse. The best I have gotten for relief is a prescription to lower the amount of fluid and to make my movements that aggrevate 10x slower. My biggest fear is to become pregnant before I get any sort of relief...
Thank you so much for your replies, I was so afraid it had something to do with my pressure
It would seem then that’ll I’ll need a shunt after all, I cannot live with these black outs.
I am just super scared with being pregnant- my aNS would have to determine whether or not it was absolutely necessary and worth doing while pregnant, and selfish as it sounds, I can’t imagine going through this entire pregnancy feeling this way.
It’s my first baby, and we were not expecting to conceive so soon after my procedures, as I’m still not fully functioning.
Do you mind me asking what medicine you’re takung for this? I was unaware there was medication to help with the fluid build up, but if it’s a safe alternative to surgery to allow me to enjoy my pregnancy, I would gladly bring it up to my surgeon.
Talk to you NS and your OB. Being pregnant ups the amount of fluid everywhere in your body, including your CSF. There are ways to safely have the surgery for the shunt while being pregnant, but your doctors will have to work together as a team. I am also pregnant (9 weeks) and I completely understand how you feel. Being pregnant is scary enough by itself, and then to throw on our medical conditions on top of this, wow. Just do your best to relax and let your doctors handle the worries as best as you can.
As far as diamox goes, I don't now that it would be pregnancy safe since it is a diaretic and tends to dehydrate you very easily, but that is a question for your doctor. I just don't want you to have your heart set on it and find out it is a no go.
