Sunday, November 15, 2009

2009

I will post my current status tomorrow so this post won't be so long...

The three brain surgeries earlier had resulted in the ligaments in my neck being stretched. Basically my head was being held on up one side of my neck. My neurosurgeon said between this and a bulging disc, I could end up wearing a neck brace for life if I didn't have a cervical spine stabilization. Between that and the pain I was in, the decision was a no-brainer. NIH couldn't do the surgery though. After the usual ineffectual attempts to get the required surgery in AR (in the future I won't bother, as it's a waste of time and money to even try), I ended up at Emory in Atlanta. My neuro had overheard us discussing going there to meet with a kidney transplant surgeon who had been at NIH, and shouted at us as we were leaving to see a colleague of his there.

So we made an appt with him while beginning the process of getting lined up for a kidney in the future.
This was the first truly good-looking doctor I've had. Better yet, he called after-hrs on his cell -- gave us his cell number -- to say he read the MRIs, understood the pain I was in, commended me for being as strong as I was under the circumstances, and said he'd take care of it! In contrast, the surgeons in AR hadn't felt the situation was critical even though I was in such pain I was living with a heating pad and doubling up my narcotics. And despite my surgeon at NIH calling them, they never bothered to return his calls. (Something he said has never happened before). The thing I couldn't figure out was NIH gives one of the hospitals their major grant money; you'd think they'd at least be courteous due to that...so I felt vindicated.

Dr. Cutie's nurse was funny-- she told us most women looked awful their first appt with Dr. Cutie (when you feel bad, making the effort to look good is difficult and sometimes too much exertion) - but she said on the second appt., no matter how they feel, she said they are always dressed to the nines.

Note: My personal theory through the years -- Excy laughs at me -- is I always look my best for doctor appointments regardless of how I feel. I believe if they see me well dressed and taking care of myself they in turn may treat me with more care. Whether or not that's true I have no idea. Just one of my many quirks.

Nurse for Dr. Cutie also said he used to model in college to pay the bills -- he was 'discovered' walking through the campus -- and sometimes to relieve tension in the OR, he's been known to strike a model pose. I do know he has a sense of humor. The morning of my surgery he came in and marked my neck, saying it was to differentiate me from the gall bladder patient in the next room. I dunno, maybe he wasn't kidding.

The surgery was in May, and I looked like a Star Wars storm trooper most of the summer with the big brace, and it prevented me from driving and such. I had 8 weeks of PT, and am not 100% by any means but the pain is tolerable from what it was before.

Tomorrow I will write the current game plan for the future.

11 comments:

plainolebob said...

Amy, am doing the catching up thing,You did got through quite a bit, so glad you are here.BIG HUGS

Eva Gallant said...

Just amazing!

Secretia said...

I cannot imagine all the surgeries you have gone through.

hereinfranklin said...

Hi Amy--I just found you today in that weird internet clickty-click way. For the record, I am also 51, I used to live in Little Rock (worked in advertisng there for 12 years), am a cancer survivor, but easy cancer compared to what you're going through and I love Julie and Julia. I look forward to reading more and wish all the best for you.

Cindy--Here In Franklin

Deborah said...

Hi, I'm looking forward to tomorrow's post. You are so strong and very brave...

ReformingGeek said...

I've enjoyed reading your story. Thanks for sharing!

strokeofliving said...

I love how you recall every detail with perfect clarity. When you write I feel as though I'm watching it unfold before my eyes.

The marking of the neck thing was probably precautionary for real. 60 minutes, Dateline or somebody aired a story about people getting the wrong surgeries, etc.

How you live with chronic pain is a-ma-zing.

((sending a hug until tomorrow))

Kate said...

Wow this is very inspiring stuff. I wish you all the best

Kate xxx

Chris said...

I don't think I've ever seen you looking anything other than completely put together, even when you feel crappy. It's one of the things that makes you ... well, you.

e said...

Wishing you a good week. Are you on pain meds constantly???

Awaiting the last installment...

Life Laugh Latte said...

I love the courage I see in your words, and appreciate your willingness to let us in on your story. Holly