5 Months Post Op

[Joalexa]

My daughter is 5 months post op and doing well.  She had a rough recovery with meningitis and a pseudomeningocele.  Her doctors have her on Diamox and Topamax since mid June which have worked like a charm and she is back to school and tennis.  I realize she is deconditioned from her long recovery however she is very fatigued from her school day.  Some of it is the medication.  Should I ask her doctors to start weaning her off the meds or leave well enough alone at this point?  Her follow up MRI is in December.  Thanks for any advice!

[Joalexa]

I am so glad to hear the Diamox worked for you!  You are SO right about drinking water and I have nagged her to no avail UNTIL she got a headache, drank a bottle of water, and felt better!  

[RheaAnn]

Well I first had a lumbar puncture to drain it as it was such high volume that they couldn't wait until meds kicked in to let it go down. I ended up with a CSF leak and had to go back in the hospital (this time for a whole week!) for a blood patch to seal it. I was then put on the Diamox and some steroids for inflammation. It has been 3.5 months and I'm almost completely weened off! One more week! The pseudo is completely gone as of a month ago. We will do a repeat CT after 2 weeks of being Diamox free to make sure there is no pseudo and that there is no hydrocephalus.

My symptoms were pretty severe as well, but I feel sooo much better! It's pretty obvious when the pseudo is present! The pain and feelings are like nothing else I've experienced! My NS said if the symptoms or pseudo come back, I can get back on the Diamox and try for a few more months and ween off again as I really do not want a shunt and neither does he!

As soon as I feel a headache come on, I get some water (and flavor additive, like Mio or crystal light- this helps me to get more water in b/c it has a taste!). After one or so glasses, I feel much better.

Keep me posted on how she is doing! If there are any other issues, maybe we can brainstorm! :)

[Joalexa]

Wow!  Thanks for chiming in because I was beginning to think she was the only one with a pseudo being treated with Diamox.  Her symptoms were pretty severe with 3 hospitalizations and now look at her!  Did your headaches go away like hers did?  And you are so right about the dehydration...I am always on her to drink more water.  She also developed a mild metabolic acidosis being treated with Cytra.  How long did your doctor say you'll be on Diamox?  I am glad to hear there is an alternative to surgery!

[RheaAnn]

I agree with Selma and I wanted to add something! I have been on Diamox for maybe 3 1/2  months now because of a pseudo. It works as a diuretic. It works by pulling CSF (in our case) off the brain, but it also pulls fluid out other parts of the body as well.  I noticed that when I am a little dehydrated, I get really tired, really easily! Make sure she is having enough water throughout the day and especially when she tires out. I also try to eat some nuts like almonds or peanuts to get in proteins and complex carbs as they help increase energy.

I hope she finds energy somewhere! :)

[selmaS]

  Please keep us posted on her progress as well as what u find out at the
Drs  : )

[Joalexa]

Thank you for your response.  I agree with you that all her activities may be too much too soon...she was supposed to be team manager this year but obviously had other plans lol.  Makes me crazy!  I hope her fluid issues have resolved but we won't know for sure until her next MRI.  We see the NL next month and I think we'll stay the course until her MRI.  I worry her symptoms may return if the pseudo isn't gone.  Your advice is so helpful, as are your explanations!  Fingers crossed :)

[selmaS]

  Hi...at 5 months, it could be that school and tennis could be too much for her ...it takes time to heal from this....she may need to slow down...being young it may not take as long as  some of us that r older and have other issues, but having the set backs she had, I would still say she needs to take it a bit slower.....

The med DIAMOX r helping with CSF to help lessen the possibility if too much building, and the pressure, and TOPAMAX is helping change the morphology of her HA's and keep them in check...

Stopping these meds could cause an influx of CSF and more HA's and some symptoms returning....

U may want to talk to her Dr ....as to how she may find more energy at this point, but I really feel it is something that just takes time and not overdoing it...JMHO : )