I was diagnosed at age 12, was told I'd 'grow out of it' and to date, have had 6 surgeries (with possible 7th looming). I've never given up on myself, on research for my condition or on the potential outcomes that have come from each new problem which might have cropped up along my journey. My hope is that with true stories, real feelings (both happy and sad) as well as an injection of humor here and there that I can help someone else going thru similar circumstances.
About Me
- JerseyOT
- In 2012, I had 2 operations back-to-back. It was an excruciating and grueling recovery. I was doing well until about 8wks post-op when I broke my back (T12 transverse process) in therapy. I spent another 10 days in the hospital and a month in an acute rehab facility. I was in a clamshell brace for over 8 months with no improvement. I underwent surgery #5 on 11/20/12 and required a 6th surgery on 11/24 due to serious complications. After spending another month in the hospital, I finally came home on 12/21/12. Recovery has been difficult and challenges seem to pop up whenever they get the chance. My most pronounced challenge are these terrible positional headaches that started in early 2013. I had a prior CSF leak in Nov 2012 however both the neurosurgeon and ortho surgeon believe it's occurring all over again as my brain MRI shows "clear & obvious indications of a CSF leak." I had at least 1/2 dozen consults with various specialists to determine what would be the best course of treatment and since bed rest hasn't worked, surgery is the only option left. Surgery #7 is full of unknowns regarding length of surgery, stay and recovery.
Sunday, January 29, 2012
1 Down, 1 To Go....5 Days Post-Op
Well, HHEEEELLLLLLLOOOOOO everybody!!! I'm here! I made it through the first surgery with flying colors and it only took 5 hours instead of 7 which is great. I am now day 5 post-op and am feeling better each day. I spent 48+ hours in ICU from Tuesday until Thursday early evening. I have been in a small private room with the most wonderful nurses and aides on earth! I am now able to wit and wash with setup, brush my teeth, get on/off toilet and in/out of bed unassisted. I am very pleased with how I'm progressing - the stronger I am going into the second half of this surgery the better I will do post-op. Yesterday I even walked about 50 ft and did 5 small (lower height) steps with PT (up and down!)
My abdominal pain is/was alot worse than I had anticipated but that too, is starting to feel a little better each day and I'm hoping it'll continue to do so. I had a PICC line put in on Friday because with all the poking and prodding and irritation that was happening (not to mention that IV's only last 4 days) it was suggested that have a PICC line put in so that I could get fluids, meds, blood draws, whatever - directly from this site. So that was fun (NOT)!
I've had someone here visiting with me (either family, friends or both!) each day which is nice. Part 2 will take place on Tuesday morning as planned barring the unforeseen. This one coming up is "the big one" - I'm still really nervous about it but atleast all these great medications help keep me from stressing out too much! HAHA. Last night I woke up twice this excruciating pain in my sacrum/tailbone area which I was told is most likely muscle spasm. Ugh! THAT was pai Ive never had before so hopefully it won't be back for another round tonight.
So, with that as my update, I think I'm doing fairly well. Please continue the prayers for Jan31 -- that's the BIG ONE! And totally offi topic, the nurse just came in and said that the CNA would be in soon and that i can take a shower!! Yay!! Oh it's the little things in life!!!
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Hi Michelle, It's been a while. . . probably since we were little. My mom (Marlene-your Dad's cousin) told me about your surgery and sent me a link to your blog. Wow. Wow. Wow. Your strength, resolve, enthusiasm for life and sense of humor are amazing! Reading through it was educational (and I'm a nurse) and a realization of the absolute tremendous person you are. I prayed for you last week and will send more prayers, positive vibes and good wishes your way on the 31st. Take care Michelle and enjoy that first shower! Whoo hoo! All the best, Christa
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