- Joined
- Aug 3, 2004
- Messages
- 21,258
Hi everyone.
I have not posted in EONS. But here I go.
I had brain surgery for a Chiari Malformation on May 11th. It was almost 7 hours (instead of 3 to 5) and everything seemed to have gone ok as per Dr. Spent 36 painful hours in ICU, included vomiting, the whole thing. I spent a total of 5 days in the hospital and BEGGED to come home. I asked the Dr, if there was anything medically to be done at the hospital that could not be done at home, as I felt I could rest better at home. He gave me my walking papers with STRICT instructions. I was to not lift ANYTHING over 5 pds, no pushing, pulling. Basically nothing until I saw him 10 days letter. OFF i went
FFWD 3 days later. I woke up and said to DH, my bandage feels damp
He then said it is a little blood, not much. I called our local clinic and went right over. They removed the bandage and said yes it is leaking CSF (MY WORST FEAR) but not to panic "YET", but to monitor the situation. Well, but evening it was leaking and it was soon panic mode. Somehow I got on a 3 way call with my Neuro Surgeon at home, and he said to lay down, not move at all, and he was in surgery the whole next day, and that I was to go to ER, and as soon as he could he would come to meet me.
I was there at 9am, and saw another Dr Immediately, I was priority 1, said this is defnitely a big leak, lay down, no walking, etc. A few hours later my Dr came saying he is sorry I can NOT go home. (I had packed a bag) So again I am admitted. The plan was to lay still for 48hrs, and if no improvement, a lumbar puncture was to be done, and a tube running from my spine to my brain to FOOL it into only leaking into the spinal tube and not leak from my incision, and if that did not work, another brain surgery.
Well, 48 hrs later, I was leaking MORE. So I go to OR for the LP
. They missed 2x, finally got it in. I had a horrible reaction, they had to almost put me out, and this procedure was to take 15 min and another 15 min in recovery, and well I was put out, and woke up 4 hours later, to my DH thinking the worst.
Now i spent 8 days lying COMPLETELY flat in bed. My head could not rise 10% nor my feet. I did this and by Day7 was itching to get up. So DH brought the port a potty round. I managed to use this. My legs HURT. I HAD TO GET UP. This did work
My leak in my head had dried up, so they removed the tube in spine, (fun again, NOT) I begged to go home, and he gave me a 24hr pass. If at ANY time during the 24yhrs i leaked, I was to get back in my bed it was waiting for me. WEll at the 24h mark, I called in, and was free to go..Now I was on STRICT STRICT orders. I could do NOTHING. Lift NOTHING. zero pounds.
Now I had an appt 2 weeks later, this makes 3 weeks wtih 30 staples in my head, adn now I could get them removed. My Dr, is not there
. He has been called away for emergency surgery. I see his colleage, who obviously knew NOTHING about my complication or anything. HE did remove all staples and I asked small things. I was still told to keep on the agenda my dr, gave me, and he gave me an appt to see my Dr. in 6 weeks, that is next week BTW.
Now, I have UNBELIEVABLE headaches. My head feels grossly misshapen. I tire easily. My right side is a joke. I drop every spoon, towel, plate, I grap with it, so this has NOT changed. My leg, that is even worse. I am dragging it around with me, acutally lifting it at times to go up/down stairs.
My kids are not babies, and are actually amazing while DH is at work. He does do long hours. My son is 14 and does so much, even dd11 helps, dishes, cooking etc.
I am just depressed because I see no improvement. I was driving, and now am told not to. I am told to go back to original orders, lifting 5 lbs max.
I just can not wait to see the Dr. on the 14th to see how I am on his agenda. He did mention that having to go back in and have a 2nd surgery did delay considerably my recovery. It pushed it back weeks, or months. I dont remember anymore.
I just need more patience to deal with the slowness of this. I am such a get up and go person, and I have done EVERYTHING by the book here, as I was told. I let everyone else do those things
... I read that by 3 months post surgery you can usually see the final effects. I know that next week makes 2 months, but I guess I was hoping for more. And hoping this is not as good as it gets.
I just had to get that out. It has been eating me up.
I know brain surgery is major, and I had 2 discs removed as well. I had my Dura opened, my tonsils herniated and burned. My neck muscles were cut right across, and the incision is MUCH longer than he thought. He did explain this to me. I think also as a woman, having 1/2 your hair shaved stings. And I just don't see it growing. It seems stunted.
I have not posted in EONS. But here I go.
I had brain surgery for a Chiari Malformation on May 11th. It was almost 7 hours (instead of 3 to 5) and everything seemed to have gone ok as per Dr. Spent 36 painful hours in ICU, included vomiting, the whole thing. I spent a total of 5 days in the hospital and BEGGED to come home. I asked the Dr, if there was anything medically to be done at the hospital that could not be done at home, as I felt I could rest better at home. He gave me my walking papers with STRICT instructions. I was to not lift ANYTHING over 5 pds, no pushing, pulling. Basically nothing until I saw him 10 days letter. OFF i went
FFWD 3 days later. I woke up and said to DH, my bandage feels damp
He then said it is a little blood, not much. I called our local clinic and went right over. They removed the bandage and said yes it is leaking CSF (MY WORST FEAR) but not to panic "YET", but to monitor the situation. Well, but evening it was leaking and it was soon panic mode. Somehow I got on a 3 way call with my Neuro Surgeon at home, and he said to lay down, not move at all, and he was in surgery the whole next day, and that I was to go to ER, and as soon as he could he would come to meet me.I was there at 9am, and saw another Dr Immediately, I was priority 1, said this is defnitely a big leak, lay down, no walking, etc. A few hours later my Dr came saying he is sorry I can NOT go home. (I had packed a bag) So again I am admitted. The plan was to lay still for 48hrs, and if no improvement, a lumbar puncture was to be done, and a tube running from my spine to my brain to FOOL it into only leaking into the spinal tube and not leak from my incision, and if that did not work, another brain surgery.
Well, 48 hrs later, I was leaking MORE. So I go to OR for the LP
. They missed 2x, finally got it in. I had a horrible reaction, they had to almost put me out, and this procedure was to take 15 min and another 15 min in recovery, and well I was put out, and woke up 4 hours later, to my DH thinking the worst.Now i spent 8 days lying COMPLETELY flat in bed. My head could not rise 10% nor my feet. I did this and by Day7 was itching to get up. So DH brought the port a potty round. I managed to use this. My legs HURT. I HAD TO GET UP. This did work
My leak in my head had dried up, so they removed the tube in spine, (fun again, NOT) I begged to go home, and he gave me a 24hr pass. If at ANY time during the 24yhrs i leaked, I was to get back in my bed it was waiting for me. WEll at the 24h mark, I called in, and was free to go..Now I was on STRICT STRICT orders. I could do NOTHING. Lift NOTHING. zero pounds.Now I had an appt 2 weeks later, this makes 3 weeks wtih 30 staples in my head, adn now I could get them removed. My Dr, is not there
. He has been called away for emergency surgery. I see his colleage, who obviously knew NOTHING about my complication or anything. HE did remove all staples and I asked small things. I was still told to keep on the agenda my dr, gave me, and he gave me an appt to see my Dr. in 6 weeks, that is next week BTW.Now, I have UNBELIEVABLE headaches. My head feels grossly misshapen. I tire easily. My right side is a joke. I drop every spoon, towel, plate, I grap with it, so this has NOT changed. My leg, that is even worse. I am dragging it around with me, acutally lifting it at times to go up/down stairs.
My kids are not babies, and are actually amazing while DH is at work. He does do long hours. My son is 14 and does so much, even dd11 helps, dishes, cooking etc.
I am just depressed because I see no improvement. I was driving, and now am told not to. I am told to go back to original orders, lifting 5 lbs max.
I just can not wait to see the Dr. on the 14th to see how I am on his agenda. He did mention that having to go back in and have a 2nd surgery did delay considerably my recovery. It pushed it back weeks, or months. I dont remember anymore.
I just need more patience to deal with the slowness of this. I am such a get up and go person, and I have done EVERYTHING by the book here, as I was told. I let everyone else do those things
... I read that by 3 months post surgery you can usually see the final effects. I know that next week makes 2 months, but I guess I was hoping for more. And hoping this is not as good as it gets.I just had to get that out. It has been eating me up.
I know brain surgery is major, and I had 2 discs removed as well. I had my Dura opened, my tonsils herniated and burned. My neck muscles were cut right across, and the incision is MUCH longer than he thought. He did explain this to me. I think also as a woman, having 1/2 your hair shaved stings. And I just don't see it growing. It seems stunted.
)
Happy Birthday momasita!!
. I just forget the page AS I am reading it?? I am/was an avid reader, so this is a real downer for me. I forget if I took any pills, or simple things ALL day long. I never noticed this prior, and it is most definitely new, so I am hoping to get in to see the Dr before October. I know I will, he is just on holiday now 
I enjoyed floating on my pool with the 90 degree heat 
