I'm typing to you from my most recent surgery-prep purchase:
The new laptop desk/bed tray
On Monday, I had my first insurance-sponsored massage treatment. So besides the fact that I'm getting these massages to loosen up my back and reduce stress before surgery, I'm talking about it here because of a conversation we had during the session. It went something like this:
"So what kinds of physical activity do you do?" He asks
"Oh, walking, a little bit of weight lifting, and I'm taking a belly dance class once a week." I say.
"Ok and what else?"
"I do some yoga before and after working out and I try to get out dancing a few times a month."
"That's nice and what else?"
***I pause here. It's possible he's just trying to make small talk and not really paying attention, but this is clearly my opening to talk about my other activities. There are two schools of thought in the category of sharing kinky proclivities with one's health care providers: "What I do in my bedroom is my business," or "How can I get good health care if my providers don't know what I'm really doing with my body?" I fall pretty solidly into the latter category, although I try not to overshare or make people too uncomfortable. The fact that I spend some regular portion of my free time being twisted into knots and hung from the ceiling seems pretty relevant to massage therapy.
"Well, I do some rope suspension. That's why you may see some marks on the backs of my arms and around my rib cage." This is what I like to call a verbal traffic cone. It's clear that I do something different, but if the other person wants to he or she can just leave it alone and walk around it.
***This is clearly taking a moment to register
"Ah," he laughs a little "kinky stuff." His tone indicates he thinks he's joking.
"Well yes, actually." I respond. If the last sentence was a traffic cone this is an Enter at your own risk sign.
After stammering about for a moment, he did actually enter. He had aparently attended a workshop at the Wetspot before. We spent some time talking about poly and kink and D/s while he did stuff that made me make a lot of the same noises I make in scene. I felt really good physically and mentally after I left. I'm looking forward to going back next week.
Wednesday, July 30, 2008
2 and a Half Months
Posted to LJ on: Jul. 13th, 2008 at 1:17 PM
2 and a half months feels a lot scarier than 3 months. It's a difference of two weeks, but all I'm saying is YIKES!
I feel dumb and scared and stressed out today for no real apparent reason. Yesterday was really nice, maybe this is just a little whiplash. I sent an email with my major calendar items between now and October earlier today. That's probably what triggered this little panic episode. Except for camp, August is invisible right now. I'm either planning for the next two weeks or for September so today it feels more like 1 and a half months.
Ok now that I've typed it out, I think I can start talking myself back down.
Re-establish ties with reality.
Be here now.
Drink water.
Move my body.
Take my vitamins.
Enjoy my Sunday.
ps. This is the last of the "Re-Posts" From here on out I'll be blogging in real-time.
2 and a half months feels a lot scarier than 3 months. It's a difference of two weeks, but all I'm saying is YIKES!
I feel dumb and scared and stressed out today for no real apparent reason. Yesterday was really nice, maybe this is just a little whiplash. I sent an email with my major calendar items between now and October earlier today. That's probably what triggered this little panic episode. Except for camp, August is invisible right now. I'm either planning for the next two weeks or for September so today it feels more like 1 and a half months.
Ok now that I've typed it out, I think I can start talking myself back down.
Re-establish ties with reality.
Be here now.
Drink water.
Move my body.
Take my vitamins.
Enjoy my Sunday.
ps. This is the last of the "Re-Posts" From here on out I'll be blogging in real-time.
Tuesday, July 29, 2008
Folsom Street Fair
Posted to LJ on: Jun. 5th, 2008 at 4:36 PM
Ok, now that the date is set I have a new question to contemplate.
Do I go to Folsom?
I scheduled the date after Folsom to insure that all my people would be around; not to create the opportunity for me to go. However, it does open up the opportunity.
Yays!
Ok, now that the date is set I have a new question to contemplate.
Do I go to Folsom?
I scheduled the date after Folsom to insure that all my people would be around; not to create the opportunity for me to go. However, it does open up the opportunity.
Yays!
- San Francisco!
- Giant pervert party!
- Seeing friends in new situations!
- Playing in new places in new ways
- Air plane colds/flu
- Con stress
- Vacation diet
- Vacation sleep schedule
- Playing in new places in new ways
Jay Williams 2-in-1
Posted to LJ on: Jun. 5th, 2008 at 7:58 AM
The appointment I made for June 20th has been moved to today at 2:15. Russell and Max will be going in with me (can I even begin to talk about how blessed I am?).
I don't have my book right now so I'm glad I made notes in LJ earlier about the things I need to ask my surgeon.
Ok now I have 10 minutes to get out the door so I can go work distractedly for a few hours. I had an unexpectedly late night last night. Not bad, just schedule-altering.
Feeling: Loved but Rattled
Posted to LJ on: Jun. 5th, 2008 at 4:06 PM
The rescheduled appointment today went really well.
Things moved quickly and on time (I don't remember the last scoliosis appointment that took less than 2 hours from car door to car door).
My entourage and I asked good questions.
My surgeon and his nurse gave good answers.
As soon as the last major round of questions was done, I felt like I'd hit a wall and just wanted to curl up and take a nap (yay adrenaline crash).
The surgery will be on October 1st arriving at 5:40 AM (who needs anesthesia if you don't bother to wake up?) at Swedish Hospital's new orthopedic building. All other schedules will work backwards from this date.
The appointment I made for June 20th has been moved to today at 2:15. Russell and Max will be going in with me (can I even begin to talk about how blessed I am?).
I don't have my book right now so I'm glad I made notes in LJ earlier about the things I need to ask my surgeon.
Ok now I have 10 minutes to get out the door so I can go work distractedly for a few hours. I had an unexpectedly late night last night. Not bad, just schedule-altering.
Feeling: Loved but Rattled
Posted to LJ on: Jun. 5th, 2008 at 4:06 PM
The rescheduled appointment today went really well.
Things moved quickly and on time (I don't remember the last scoliosis appointment that took less than 2 hours from car door to car door).
My entourage and I asked good questions.
My surgeon and his nurse gave good answers.
As soon as the last major round of questions was done, I felt like I'd hit a wall and just wanted to curl up and take a nap (yay adrenaline crash).
The surgery will be on October 1st arriving at 5:40 AM (who needs anesthesia if you don't bother to wake up?) at Swedish Hospital's new orthopedic building. All other schedules will work backwards from this date.
Monday, July 28, 2008
Porn Should Not Make You Cry
Posted to LJ on: May. 25th, 2008 at 10:14 AM
Here's the gist of a post I made on a friend's D/s discussion board:
Earlier this week I stopped in at Wild at Heart and picked up a book that had some promise. He's on Top edited by Rachel Kramer Bussel
Anyway, I finally got around to reading some of the stories this weekend and let me just say this book should come with a warning label. Most of the stories are well written (if a little tame for my reading tastes). But last night I stumbled upon the story "The Sun Is an Ordinary Star" by Shanna Germain. It starts off giving credence to the fact that it's in a collection of erotic fiction, but then blind sides the reader.
After the narrator finishes his flashback prompted by finding a pair of nipple clamps under the bed, he tells us about his wife's battle with breast cancer and we come to understand that he's about to pick her up from the hospital after her lumpectomy. The rest of the story recounts his big stupid guy mistake. He treats his wife like she's this fragile form that can be barely touched and certainly not capable of withstanding their previous sexual activities. This of course brings much frustration to both parties. In a moment of desperation she says "I need you to stop fucking me like I'm dying, I'm not dying. But every time you touch me soft, every time you ask if I'm okay, another little piece of me falls off." Then the author gives us 1/2 a page of "resolution" in which the narrator finds his gonads again and is determined to top his wife.
The more investment a person has in caring for his or her partner, the riskier our kinky D/s activities feel. I'm one of the luckiest girls I know--I have a primary partner with whom I can share my life, I have a dominant partner who truly understands what my submission is all about, I have a primary girlfriend who gets my top-juices flowing like no other and then goes shopping with me afterwards, and I have a whole community of friends who are there every time I reach out my hand. None of that changes the fact that I'm positively scared out of my whits of finding myself in the position described in the story above. What it does change is my belief about what will happen if I do find myself there. Things will work out. We're all strong smart people and none of us will stop loving one another.
Here's the gist of a post I made on a friend's D/s discussion board:
Earlier this week I stopped in at Wild at Heart and picked up a book that had some promise. He's on Top edited by Rachel Kramer Bussel
Anyway, I finally got around to reading some of the stories this weekend and let me just say this book should come with a warning label. Most of the stories are well written (if a little tame for my reading tastes). But last night I stumbled upon the story "The Sun Is an Ordinary Star" by Shanna Germain. It starts off giving credence to the fact that it's in a collection of erotic fiction, but then blind sides the reader.
After the narrator finishes his flashback prompted by finding a pair of nipple clamps under the bed, he tells us about his wife's battle with breast cancer and we come to understand that he's about to pick her up from the hospital after her lumpectomy. The rest of the story recounts his big stupid guy mistake. He treats his wife like she's this fragile form that can be barely touched and certainly not capable of withstanding their previous sexual activities. This of course brings much frustration to both parties. In a moment of desperation she says "I need you to stop fucking me like I'm dying, I'm not dying. But every time you touch me soft, every time you ask if I'm okay, another little piece of me falls off." Then the author gives us 1/2 a page of "resolution" in which the narrator finds his gonads again and is determined to top his wife.
The more investment a person has in caring for his or her partner, the riskier our kinky D/s activities feel. I'm one of the luckiest girls I know--I have a primary partner with whom I can share my life, I have a dominant partner who truly understands what my submission is all about, I have a primary girlfriend who gets my top-juices flowing like no other and then goes shopping with me afterwards, and I have a whole community of friends who are there every time I reach out my hand. None of that changes the fact that I'm positively scared out of my whits of finding myself in the position described in the story above. What it does change is my belief about what will happen if I do find myself there. Things will work out. We're all strong smart people and none of us will stop loving one another.
Full Circle
Posted to LJ on: May. 20th, 2008 at 10:48 PM
I'll be having my next scoliosis appointment with the surgeon who started this whole thing a year ago. I got to this decision by way of eliminating unacceptable options and talking to a variety of people with immediate experience of spinal surgery and/or the hospitals in question. Let me just mention again how fucking incredible my network of support around this is.
There's been enough dinking around looking for other options or other answers. He may act a bit like a car salesman, but he's saying the same things everyone else says independently and seems very well respected and has access to a qualified team of peers should he need assistance. I'm committed to sticking with him (and his team) through the rest of this journey.
The next appointment won't be until June 20th.
I'll be having my next scoliosis appointment with the surgeon who started this whole thing a year ago. I got to this decision by way of eliminating unacceptable options and talking to a variety of people with immediate experience of spinal surgery and/or the hospitals in question. Let me just mention again how fucking incredible my network of support around this is.
There's been enough dinking around looking for other options or other answers. He may act a bit like a car salesman, but he's saying the same things everyone else says independently and seems very well respected and has access to a qualified team of peers should he need assistance. I'm committed to sticking with him (and his team) through the rest of this journey.
The next appointment won't be until June 20th.
Sunday, July 27, 2008
Wrong Answer
Posted to LJ on: May. 16th, 2008 at 3:43 PM
Easy, clear, simple.
I say "Will you steal bone from my hip?"
The Doctor I like and want to work with says "Nope, I'll steal bone from a dead person's hip and add some proteins."
That, however, is not the way the conversation went.
I could try for yet another doctor, but it just seems like more delay tactics at this point.
Do I go with the hot-shot team at Swedish, or the tried and true Doctor at UW?
I can honestly convince myself either way.
I'm sure that after talking to the UW Doc, I'd come to understand why he wants to pull bone from my hip and see that as a perfectly reasonable choice (this is in large part because he's very very experienced and good at communicating with the patient). I'm also guessing UW will be less expensive over all. I would like to rely on the generosity of my mother as little as possible here.
On the other hand, I've heard good things from everyone I know who's had work done at Swedish. The hot shots are not concerned about price so they seem to err on the side of patient comfort. I'm pro-comfort no matter how relative "comfort" might be. Part of the reason I continue to work for $13/hr is I have a fantastic medical benefit package and an HR team that actually wants to help me get the most out of it.
All three present as more-or-less equally competent surgeons.
They all propose the same fusion levels.
They all propose the same surgical approach and hardware use.
They're all clear about the potential complications long-term and short-term
Looks like I may be going back to Dr. Car-salesman after all.
Easy, clear, simple.
I say "Will you steal bone from my hip?"
The Doctor I like and want to work with says "Nope, I'll steal bone from a dead person's hip and add some proteins."
That, however, is not the way the conversation went.
I could try for yet another doctor, but it just seems like more delay tactics at this point.
Do I go with the hot-shot team at Swedish, or the tried and true Doctor at UW?
I can honestly convince myself either way.
I'm sure that after talking to the UW Doc, I'd come to understand why he wants to pull bone from my hip and see that as a perfectly reasonable choice (this is in large part because he's very very experienced and good at communicating with the patient). I'm also guessing UW will be less expensive over all. I would like to rely on the generosity of my mother as little as possible here.
On the other hand, I've heard good things from everyone I know who's had work done at Swedish. The hot shots are not concerned about price so they seem to err on the side of patient comfort. I'm pro-comfort no matter how relative "comfort" might be. Part of the reason I continue to work for $13/hr is I have a fantastic medical benefit package and an HR team that actually wants to help me get the most out of it.
All three present as more-or-less equally competent surgeons.
They all propose the same fusion levels.
They all propose the same surgical approach and hardware use.
They're all clear about the potential complications long-term and short-term
Looks like I may be going back to Dr. Car-salesman after all.
Dr. Falicov
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.
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.
Pre-visit Jitters
Posted to LJ on: May. 13th, 2008 at 11:53 PM
In a little more than 8 hours I'll be sitting in yet another surgeon's waiting room.
Now that things are getting even that tiny bit closer I've started the bargaining process again. It goes something like this:
"I promise to be a good girl and eat fiber and do exercise and meditate and ... and.... and..... Just please give me a copy of my x-rays from 5 years ago that show my spine is actually stable or better than it was then and as long as I can be the model picture of health and vitality I don't have to do this stupid surgery thing."
Then I have the denial round:
"Seriously, I bet those x-rays would say that, and I'm just making a fuss because I want the attention so I should really just come to my senses now and find more productive ways to ask for attention like...i don't know...streaking down Broadway at 8 PM?! I don't really need this surgery and if I say that loud enough I don't even have to go Dr. Ambiguous-gender-name in the morning."
Then I hear something inside and from the other side of all of this saying it's all going to be all right--more than all right really. You are strong and wise and supported from every possible direction. There has never been a better time to do this. It's kind of hard to hear that through all the other head noise, but it's still there.
In a little more than 8 hours I'll be sitting in yet another surgeon's waiting room.
Now that things are getting even that tiny bit closer I've started the bargaining process again. It goes something like this:
"I promise to be a good girl and eat fiber and do exercise and meditate and ... and.... and..... Just please give me a copy of my x-rays from 5 years ago that show my spine is actually stable or better than it was then and as long as I can be the model picture of health and vitality I don't have to do this stupid surgery thing."
Then I have the denial round:
"Seriously, I bet those x-rays would say that, and I'm just making a fuss because I want the attention so I should really just come to my senses now and find more productive ways to ask for attention like...i don't know...streaking down Broadway at 8 PM?! I don't really need this surgery and if I say that loud enough I don't even have to go Dr. Ambiguous-gender-name in the morning."
Then I hear something inside and from the other side of all of this saying it's all going to be all right--more than all right really. You are strong and wise and supported from every possible direction. There has never been a better time to do this. It's kind of hard to hear that through all the other head noise, but it's still there.
Saturday, July 26, 2008
Scoliosis and Sexism
Posted to LJ on: Apr. 28th, 2008 at 11:05 PM
I made the appointment with Dr. Falicov's office. Turns out Dr. Alexis Falicov is a man (damned gender-neutral first names). I considered backing out, but that seemed extra sexist. Man or woman I liked what was written in the "philosophy of care" section of the listing. Besides, 2 options isn't really a choice. If nothing else, I'll pay my $20 co-pay for one more reference point before making an educated decision.
I'll be visiting Dr. Falicov on May 14th. I expect to be scheduling a surgery date within the following two weeks.
Oddly, at this moment I'm opening back up to the possibility of going back to Dr. Car-salesman. The notes he wrote up were more complete than Dr. Old's.
I know he'll be able to call his office mate in to assist with the surgery, and his office mate comes highly recommended.
I made the appointment with Dr. Falicov's office. Turns out Dr. Alexis Falicov is a man (damned gender-neutral first names). I considered backing out, but that seemed extra sexist. Man or woman I liked what was written in the "philosophy of care" section of the listing. Besides, 2 options isn't really a choice. If nothing else, I'll pay my $20 co-pay for one more reference point before making an educated decision.
I'll be visiting Dr. Falicov on May 14th. I expect to be scheduling a surgery date within the following two weeks.
Oddly, at this moment I'm opening back up to the possibility of going back to Dr. Car-salesman. The notes he wrote up were more complete than Dr. Old's.
I know he'll be able to call his office mate in to assist with the surgery, and his office mate comes highly recommended.
Thursday, July 24, 2008
Scoliosis Support System: ENGAGE
Posted to LJ on: Apr. 16th, 2008 at 9:47 PM
I want to get my lungs, heart, arms and legs in shape for surgery recovery. I'm looking for regularly scheduled work-out partners (aka peer pressure pals). I have an offer from someone at work, but would delight in the opportunity to spend time with some of you while getting ready for this.
Here are some options I'm looking at:
Twice a week gym partner (this of course would also require I do something I've never done before...voluntarily walk into a gym)
2-3 times a week Greenlake walking partner (I don't run or use wheels)
Someone want to join me for my in-home yoga sessions with Autumn?
Someone want company in a studio yoga class?
Someone want to formally schedule a social dance night?
Intent is usually there, location and timing tend to be the buggers so here's what I have to work with:
(The schedule is no longer valid so I cut it off)
I want to get my lungs, heart, arms and legs in shape for surgery recovery. I'm looking for regularly scheduled work-out partners (aka peer pressure pals). I have an offer from someone at work, but would delight in the opportunity to spend time with some of you while getting ready for this.
Here are some options I'm looking at:
Twice a week gym partner (this of course would also require I do something I've never done before...voluntarily walk into a gym)
2-3 times a week Greenlake walking partner (I don't run or use wheels)
Someone want to join me for my in-home yoga sessions with Autumn?
Someone want company in a studio yoga class?
Someone want to formally schedule a social dance night?
Intent is usually there, location and timing tend to be the buggers so here's what I have to work with:
(The schedule is no longer valid so I cut it off)
It's the little things
Posted to LJ on: Apr. 21st, 2008 at 12:59 PM
Today while listening to the song Kaylee and I decided not to use for Bang for the Buck next year, I was reminded that Bang for the Buck will happen after spinal fusion. Will I be able to walk on stripper heals? Will the way my body moves still illicit tips? Will I fit into the costume we already purchased? Will I be able to attend without being unreasonably exhausted? (Will I ever post about anything completely unrelated to the surgery?)
Bang isn't until February so I'll have several months of recovery under my belt at that point. Realistically, it will probably be just fine. But right now it's hard to get my brain to drop the worrying, be here now, let the then take care of itself. I'm kind of looking forward to camp this summer. It means I won't have time to think about this stuff during the day, nor will I have energy to worry it too much when I get home.
Today while listening to the song Kaylee and I decided not to use for Bang for the Buck next year, I was reminded that Bang for the Buck will happen after spinal fusion. Will I be able to walk on stripper heals? Will the way my body moves still illicit tips? Will I fit into the costume we already purchased? Will I be able to attend without being unreasonably exhausted? (Will I ever post about anything completely unrelated to the surgery?)
Bang isn't until February so I'll have several months of recovery under my belt at that point. Realistically, it will probably be just fine. But right now it's hard to get my brain to drop the worrying, be here now, let the then take care of itself. I'm kind of looking forward to camp this summer. It means I won't have time to think about this stuff during the day, nor will I have energy to worry it too much when I get home.
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
Saturday, July 19, 2008
Dr Wagner
Posted to LJ on Apr. 8th, 2008 at 7:52 PM
Dr. Wagner is not cranky. OLD yes, cranky no.
Getting in to see him was a little akin to registering for classes at the U. Or at least as the UW registration experience is compared to the SMC registration experience. There were many more desks to stand at, repetitive forms to fill out, and gratuitous uses of computers. It wasn't particularly slow or even difficult to figure out, but it was much more complicated than walking in to a small clinic. Oh and once I got in the exam room there were like 9 different colored blinking lights that sent messages to the central control desk about my current status. Oh Oh and the X-ray machine was computer operated and reported its results out to some server so the doc could just log on to the computer in the exam room and find and draw on my films right there in front of me. (He was OLD but quite technically literate)
The results:
He said pretty much exactly what the last doc said. My case isn't exactly unique or noteworthy as scoliosis goes. My thoracolumbar (lower) curve is the most dramatic (bent and rotated), but the thoracic curve is clearly not just a compensation. If we only correct the lower curve there's a good chance I'll wind up looking more tilted than I do now. The surgery he described and the length of the fusion were the same as I heard before.
I did feel more comfortable with him than with Dr. Car-salesman. The UW clinic might be institutional, but at least they're up front and efficient about it. My only concern: Dr. Wagner is OLD, as in considerably less coordinated than his younger counterparts (he dropped stuff, knocked things over, and lost his train of thought during dictation several times). On the other hand, he's got TONS of experience. If something weird comes up chances are good he's already seen cases like it and will know what to do.
Where do I go from here?
The scoliosis surgery book shipped today so I'll probably spend quality time reading that with Russell over the next few weeks. Provided I don't learn anything new, I'll make calls to schedule surgery in the first week of May (call in May for surgery in October)
Dr. Wagner is not cranky. OLD yes, cranky no.
Getting in to see him was a little akin to registering for classes at the U. Or at least as the UW registration experience is compared to the SMC registration experience. There were many more desks to stand at, repetitive forms to fill out, and gratuitous uses of computers. It wasn't particularly slow or even difficult to figure out, but it was much more complicated than walking in to a small clinic. Oh and once I got in the exam room there were like 9 different colored blinking lights that sent messages to the central control desk about my current status. Oh Oh and the X-ray machine was computer operated and reported its results out to some server so the doc could just log on to the computer in the exam room and find and draw on my films right there in front of me. (He was OLD but quite technically literate)
The results:
He said pretty much exactly what the last doc said. My case isn't exactly unique or noteworthy as scoliosis goes. My thoracolumbar (lower) curve is the most dramatic (bent and rotated), but the thoracic curve is clearly not just a compensation. If we only correct the lower curve there's a good chance I'll wind up looking more tilted than I do now. The surgery he described and the length of the fusion were the same as I heard before.
I did feel more comfortable with him than with Dr. Car-salesman. The UW clinic might be institutional, but at least they're up front and efficient about it. My only concern: Dr. Wagner is OLD, as in considerably less coordinated than his younger counterparts (he dropped stuff, knocked things over, and lost his train of thought during dictation several times). On the other hand, he's got TONS of experience. If something weird comes up chances are good he's already seen cases like it and will know what to do.
Where do I go from here?
The scoliosis surgery book shipped today so I'll probably spend quality time reading that with Russell over the next few weeks. Provided I don't learn anything new, I'll make calls to schedule surgery in the first week of May (call in May for surgery in October)
Scoliosis Surgeon Videos
Posted to LJ on: Apr. 7th, 2008 at 10:27 PM
Ok, here are several UW research lectures about scoliosis stuff. I scanned through the first one and plan on downloading several others. Let me just say the internets are really nifty!
The cranky-looking old man in the thumbnail for the first video is the doc I'm going to see tomorrow.
http://www.researchchannel.org/prog/displayevent.aspx?rID=9382&fID=345
http://www.researchchannel.org/prog/displayevent.aspx?rID=9389&fID=345
http://www.researchchannel.org/prog/displayevent.aspx?rID=9380&fID=345
http://www.researchchannel.org/prog/displayevent.aspx?rID=9381&fID=345
Ok, here are several UW research lectures about scoliosis stuff. I scanned through the first one and plan on downloading several others. Let me just say the internets are really nifty!
The cranky-looking old man in the thumbnail for the first video is the doc I'm going to see tomorrow.
http://www.researchchannel.org/prog/dis
http://www.researchchannel.org/prog/dis
http://www.researchchannel.org/prog/dis
http://www.researchchannel.org/prog/dis
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.
Sunday, July 13, 2008
The Dramatis Personea
My Partners:
I also have an amazing network of friends and colleagues supporting me through this journey. I'm sure many of them will be mentioned before the year is over. Frankly, I can't conceive of a better, stronger safety-net to have in place as I take these first giant steps. They've all been amazing over the last 3 months while I finalized my decisions.
- Russell is my primary partner. We live together and do most of the traditional partnery things together. From pornographer to systems administrator, from DJ to taoist, he's an amazing boy and I'm very lucky to have him in my life.
- Kaylee is my girlfriend (She's also Russell's girlfriend both independently and as a triad). We have a fair number of things in common so we do a lot of straight-girl "girlfriend" things together in addition to our less platonic interactions. She really is the cutest thing ever and she's been here for me and with me for years. What a blessing to have a Girlfriend and a girlfriend all rolled in to one.
- Max is my dominant. Our connection is deep and goes beyond mere play-partners, but it's not a traditional romantic kind of thing. We both have independent lives outside of this relationship and respect and cherish that about each other. This is the kind of connection I searched for years to find. Every step of the journey was worth it to end up belonging to him.
- [Re-Edited: 9/29/10] Tony: Even though our paths didn't join until after the more dramatic parts of my surgery/recovery, Tony became a key part of my journey for a powerful year starting in May of 2009. It was a traditionally romantic relationship. There is something remarkable and refreshing about seeing yourself through the eyes of someone who is eagerly learning everything he possibly can about who you are and how you got that way. It is equally energizing to be the one learning in return. We taught each other many things and our paths diverged in May of 2010.
I also have an amazing network of friends and colleagues supporting me through this journey. I'm sure many of them will be mentioned before the year is over. Frankly, I can't conceive of a better, stronger safety-net to have in place as I take these first giant steps. They've all been amazing over the last 3 months while I finalized my decisions.
Saturday, July 5, 2008
Place-holder
In September I will begin preparing for a journey. This blog will be a record of that journey. It will likely include pictures, video, and rambling reflections.
I'm an adult about to have scoliosis surgery for the first time. I live a pretty adult life and intend to blog accordingly. There will be discussion of non-traditional sexuality and lifestyle choices and how those things interact with my surgery and recovery. I already have a personal on-line journal that I share just with people I know. I'm hoping this blog will also be viewed by strangers who might get something out of reading about my experiences.
See you in September!
--Red
I'm an adult about to have scoliosis surgery for the first time. I live a pretty adult life and intend to blog accordingly. There will be discussion of non-traditional sexuality and lifestyle choices and how those things interact with my surgery and recovery. I already have a personal on-line journal that I share just with people I know. I'm hoping this blog will also be viewed by strangers who might get something out of reading about my experiences.
See you in September!
--Red
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