For Spots

[dreb]

Hey Spots,

How are you doing these days? I haven't seen you post much, and I was concerned about you. You ok?

Deb

[spots]

Hi Deb,

Thanks so much for asking. I was feeling great up until last Saturday when the patch appeared to have failed. I was having some high pressure headaches at night, nothing too terrible, so I was really optimistic. But then over night it changed. I got up Saturday morning and felt great then about an hour later the low pressure pain started to settle in. I stopped taking the Diamox Saturday hoping that was the problem, but it's back to the same old orthostatic HA. I left Dr S. a message yesterday, just waiting now. Feeling very disappointed and a little scared.

How about you? How are you these days?

[dreb]

Spots,

I am so sorry to hear that the orthostatic HA's have returned. I hope that you hear from Dr. Schievink today. Are the HA's the same as before the patch, or more mild?

I'm feeling pretty good. My back is still very sore from the surgery. I am having mild HA's. I don't know if it's high or low, or if I am going between the two!!?? I just know that I feel pressure in my head. I also still have the ringing and hearing loss on the right. It has been three weeks, so I am trying to be patient. I am hoping that the surgery has sealed all of the leaks, and that it is just time that my body needs to adjust.

Again, so sorry to hear that you aren't feeling well. Keep me posted, and let me know what Dr. S says. I hope that you feel better, take it easy.

Deb

[Robbysmom5]

Hi Lisa -
So sorry to hear the glue patch stopped working - and we know how hard it was for you with the meningitis. I think you summed up what is next quite well in your "Discharged from Cedars" post (below). I hope you still have the confidence - I believe you are in the best hands too. Please let us know what Dr. S says.

"we go to surgery since we now know for sure where the problem lies ... this is a very complicated thing to treat and I personally would not trust anyone else with these matters. He is on top of you every step of the way. It is a rough ride but he inspires a great deal of confidence. "

[spots]

Thanks guy,

I do believe Dr S. is the best. I am very comfortable trusting him and at this point I am willing to try whatever he suggests. He has the experience and I believe in his protocol. He emailed me yesterday to recommend surgery, just waiting to get it scheduled. Trying to survive in the meantime.

Thanks for all the support.

Lisa