I'm posting all of my book notes in one update.
Posted to LJ on Apr. 14th, Apr. 16th, and Apr. 18th, 2008
The Scoliosis surgery book arrived today. I sat down and read the first 88 pages at once. This might not seem like much until you note that I have a reading disability and reading that many pages in one 3-hour sitting is almost unheard of. Granted we're not talking graduate level text here, but I'm still pretty damned impressed with myself.
Take-aways from the first half of the book:
I can actually tell you where the pedicle is on a vertebra (important because thats where the attachment screws go in)
I can use fancy words like "progressive juvenile-onset double-major curvature" to describe my back.
I can be relieved that the majority of the rotation in my scoliosis occurs in the thoracolumbar curve and is less likely to cause cardiopulmonary problems.
I remember how "Cobb angles" are measured
I realized no one has ever bothered to describe the rotation of my thoracolumbar curve on the typical scale
I have all of the indications for scoliosis surgery and none of the contraindications.
Bone grafting is messy and bloody
Posterior approach surgery makes the most sense even if it does have the longest scar
That Dr. OLD feels confident enough in his ability to do the surgery entirely with pedicle screws gives me more confidence in him.
I want to remember to ask about short segment bone-on-bone techniques (bolded for quick reference) With the extent of my curve it might not be possible, but the potential benefits are worth checking on at least. "Compared to traditional posterior and anterior approach surgeries, the primary benefit of B-on-B is that typically about half as many vertebrae are instrumented , leaving more vertebrae and discs mobile. The level of correction obtained with this technique can rival (or exced) what is typically achieved using traditional surgical approaches."
I want to remember to ask where the surgeon plans to get material for bone grafting. Autografting from rib or iliac crest? Allografting from the bone-bank? DBM, BMP?
Need to exercise my lungs to prevent pneumonia post surgery.
Look up the video Yoga for Scoliosis with Elise Browning Miller
Choosing a Surgeon:
He strongly suggests establishing a system for keeping notes. At first I was thinking I was late to the game on this, then I realized I have a great system and I'm already using it. Right here.
Dr. Wagner's Scoliosis Research Society membership is a big plus in this book.
I haven't really talked to other patients. The book made it sound like I could ask the surgeons for patient references. It seems like something HIPPA would not promote, but might be worth asking I guess.
Evaluating Opinions:
Ask every surgeon these questions:
Magnitude of the curves (Cobb angle)
Which levels to fuse and why
Surgical approach to use and why
Best estimate of correction achievable
How many similar cases have you worked on?
Unusual complications or risks in my case
Dr. Old and Dr. Car-salesman were identical in their answers to any of the above questions we addressed
Paying for Surgery:
Total costs range from $75,000 to $300,000
Even when estimating the out of pocket expenses things can get tricky. Insurance may not cover: the whole surgical team (assistant surgeons, special anesthesiologist), preferred hardware, synthetic bone grafting stuff, preferred physical therapist
Expenses related to treatment not covered by insurance can be tax deductible if they exceed 7.5% of my gross income.
Establishing a Support System:
I'll be looking for several different kinds of support:
Emotional--not just talking about feelings, but cheering me on and kicking me in the pants as needed
Logistical--bringing stuff in, taking stuff out, cleaning stuff up
Physical--getting me up and moving
Familial--getting my family out and doing self-care
Preparing for Surgery:
Relaxation techniques--check
Preoperative Exercise and Nutrition--coming back to this
I need to work out how to take my existing meds while in the hospital
Need to get dentist and gyn exams done before surgery
No SM stuff on my back that won't be completely healed before surgery
Get a haircut ('cause those chairs and shampoo sinks aren't so comfortable post surgery)
Shave my legs (Ha!)
There are also lists of things to ask the surgeon on the last consultation, and stuff to pack with me.
The Hospital Experience from Admission to Discharge:
Relevant information this far ahead:
Looking at about 5-7 days in the hospital
Probably 24 hours in ICU
Not likely to be up for casual visitors until day 3 or 4
The recovery chapter:
3 weeks is the magic number
More moving=healing faster
Weight loss is expected because your body draws from the energy stored in fat for healing
Menstrual problems (oh fun)
A Getting your house and life in order:
Stuff I can do soon:
Purchase extension cords with switches for bedside lamps (possibly get a second bedside lamp)
Purchase a small electric blanket (can't have the heated mattress pad because of direct heat on the incision)
Purchase a nice breakfast in bed tray
More yoga pants
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