Posted to LJ on: May. 14th, 2008 at 11:12 AM
Dr. Ambiguous-name was late--like half an hour late after having the front desk tell me to show up 15 minutes early.
He then proceeded to make the same mistake several other Docs have made--assuming my thoracic curve was compensatory not structural.
I questioned him, he sent me down the hall for more x-rays (if I have cancer at 50 we'll know why).
The bending films showed what Dr. Old could guess just by looking at the first standing x-ray. I do in fact have a double major curve and will need fusion from T-4 to L-3.
I asked him about fusion technique. He talked about pedicle screws just like Dr. Car-salesman and Dr. Old and he would not be taking bone from my hip (YAY!!!!!!!!!).
The main reason I wanted to go to Dr. Ambiguous-name after finding out that he was male, was his stated philosophy of patient education. He then blew that all to hell by sneering at my scoliosis surgery patient's guide book that I brought with me to be sure I asked all the right questions.
Dr. Ambiguous-name has the same hot-shot manner as Dr. Car-salesman and the two often work together on surgeries like this. That has its advantages and disadvantages. Two surgeons=less time under anesthesia. Two hot-shots=twice as many people to feel slightly uncomfortable around.
The next steps;
I'm going to call Dr. Old's office and see if he'll tell me about his bone grafting procedures over the phone. Provided he will also be leaving my hip alone, I'll start scheduling with him. If not, I'll go back to Dr. Car-salesman who at least didn't sneer at my scoliosis surgery patient's guide.
Now, I'm heading to work an hour and a half later than I thought I would. Good god I hope the disaster that started my week sorted itself out.
Showing posts with label TheBook. Show all posts
Showing posts with label TheBook. Show all posts
Sunday, July 27, 2008
Sunday, July 20, 2008
Three book posts in one
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
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
Thursday, July 17, 2008
Re-posting the archive
In the interest of a more complete and central record, over the next couple of weeks I'm going to re-post some of my scoliosis-tagged personal LJ posts going back to April of this year and slowly work my way forward. Some of these posts will be verbatim, others may be edited for various reasons. The point here is just to bring new people up to speed. Let's begin shall we:
Posted to LJ on Apr. 6th, 2008 at 6:32 PM
I had enough idle time today that I finally kicked this back in gear. I found 3 Doc's listed on the scoliosis research society's website who are relatively local and do work with adult scoliosis. I also found another doc not listed on the researchers site, but who is FEMALE (the only one I found in all my searching actually) [blogger note:keep tracking this one, it gets interesting] and has a decent philosophy of care. I'm certain I can get a referral to her, but would like to try to get in with one of the hoity toity research docs since they might have access to more cutting edge technology. Also I found this book that I'm going to order from amazon.com:
Scoliosis Surgery: The Definitive Patient's Reference (3rd Edition) by David K. Wolpert (Author)
The Doctors I Found:
Walter F. Krengel, III, MD
Proliance Orthopaedics & Sports Medicine
1231 116th Avenue NE #100
Bellevue, WA 98004-3804
Phone: (425) 454-5344
Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Theodore A. Wagner, MD
University of Washington
1959 NE Pacific St BB1021
Box 356500
Seattle, WA 98195
Phone: (206) 543-3690
Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/InfantileDeformity, Spondylolithesis, Kyphosis
Reginald Quentin Knight, MD
Orthopedics Int'l Scoliosis & Spinal Surgery
12333 NE 130th Lane
Suite 400
Kirkland, WA 98034
Phone: (425) 216-4220
Web site: www.orthopedics-intl.net
Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions
Not on the researchers list but worth checking out:
Alexis Falicov, M.D., Ph.D
801 Broadway
Suite 1000
Seattle, WA 98122
Phone: (206) 292-7550
Fax: (206) 373-8350
Philosophy of Care:
I believe in a comprehensive, analytical approach to spine and orthopaedic problems. I use both nonoperative and operative techniques to achieve the optimal outcome for patients with an emphasis on the least invasive method to achieve an excellent outcome. I am a strong advocate for patient education and autonomy.
Posted to LJ on Apr. 6th, 2008 at 6:32 PM
I had enough idle time today that I finally kicked this back in gear. I found 3 Doc's listed on the scoliosis research society's website who are relatively local and do work with adult scoliosis. I also found another doc not listed on the researchers site, but who is FEMALE (the only one I found in all my searching actually) [blogger note:keep tracking this one, it gets interesting] and has a decent philosophy of care. I'm certain I can get a referral to her, but would like to try to get in with one of the hoity toity research docs since they might have access to more cutting edge technology. Also I found this book that I'm going to order from amazon.com:
Scoliosis Surgery: The Definitive Patient's Reference (3rd Edition) by David K. Wolpert (Author)
The Doctors I Found:
Walter F. Krengel, III, MD
Proliance Orthopaedics & Sports Medicine
1231 116th Avenue NE #100
Bellevue, WA 98004-3804
Phone: (425) 454-5344
Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/Infantile
Theodore A. Wagner, MD
University of Washington
1959 NE Pacific St BB1021
Box 356500
Seattle, WA 98195
Phone: (206) 543-3690
Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions, Juvenile/InfantileDeformity, Spondylolithesis, Kyphosis
Reginald Quentin Knight, MD
Orthopedics Int'l Scoliosis & Spinal Surgery
12333 NE 130th Lane
Suite 400
Kirkland, WA 98034
Phone: (425) 216-4220
Web site: www.orthopedics-intl.net
Adolescent, Adult Scoliosis, Aging Spine, Degenerative Conditions
Not on the researchers list but worth checking out:
Alexis Falicov, M.D., Ph.D
801 Broadway
Suite 1000
Seattle, WA 98122
Phone: (206) 292-7550
Fax: (206) 373-8350
Philosophy of Care:
I believe in a comprehensive, analytical approach to spine and orthopaedic problems. I use both nonoperative and operative techniques to achieve the optimal outcome for patients with an emphasis on the least invasive method to achieve an excellent outcome. I am a strong advocate for patient education and autonomy.
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