Saturday, March 31, 2007

Counting Down

2 more weeks of teaching, 3 more weeks of practice with this body. I think it would feel less world-changing if I wasn't in the field that I'm in - since I spend my days running around in my pajamas (basically) pulling body parts around (mine and other people's), I think this is what it would feel like to be a pianist getting a prosthetic finger (can they even do that?).

I'm hyperaware of the limited number of chances I have left to practice in version 1.0. Practice is the time that I get to move and feel good, instead of walking which just hurts from about the 20th step of the day til the end. It makes each time more precious, particularly because of the increasing physical limitations. Thank you to this little body for doing so well for so long, and all the funny things it's done to try and hold it all together, like scoliosis and a tilted sacrum.

Then again, I do get to go to the Bahamas the week before surgery.


Mom and Dad for bringing me here.

Matty and Marla for starting a new chapter.

Lea for the years of unconditional loving and kindness.

Calvin for making it possible. The gods only test the ones they love.

GuruMa for awareness in every moment.

Every single student who shows me how much I can learn from them.

Dr. Buly for being the top in the country and a subway ride away.

Glenys for rocket fueling my body.

Carole for doing the same with my mind.

Eve for the pocket notes and all they represent. AFE.

Paisley for the internal rotation and the patient, maternal repetition.

Kimmi for knowing how to make me laugh, and for watching me grow.

Julie for the prayers and the emails.

Bentley for driftwood in a giant ocean, and for flying.

This moment right now for existing.

Tuesday, March 27, 2007

Those Who Can't Do, Shouldn't Be Teaching...

I could not do a headstand yesterday.

Let me preface this with a note: I have been headstanding for years, and while there are certain poses in my practice that I have surrendered to being unable to get into anymore (goodbye, Warrior 3) this is not one of them. This should have nothing to do with my hip. This has nothing to do with my hip as far as I can tell. This is pure metaphor in action: I am out of balance.

It is a commonly known fact among yoga teachers that to teach effectively, you have to be fully engaged in your own practice. The community is peppered with tales of the teacher who stopped practicing and then imploded and disappeared off the map. We all know it in our bodies to be true. And that's not to say that you have to be a master yogi, Queen-Of-All-You-Survey to be a good teacher; in fact sometimes the teachers who have their own challenges to deal with can be more intuitively compassionate than the gymnasts and dancers to whom the practice comes naturally.

So I'm not giving myself a hard time for being limited. But headstand? My old foe-turned-friend? The first one who showed me how to overcome being afraid of the world of upside down? Whither have you gone? Will you ever be back?

This all in the context of the upcoming date after which my practice will be banished to gonzoland for a good long while, as I relearn how to walk. And I start to wonder if I'm crazy for doing this whole thing to myself. And then I try to walk, and it hurts all the way down to my knee, and I remember that this little body's not doing that well, and left on its own will only continue to deteriorate increasingly rapidly. And if I'm very lucky I remember my gratitude list and the great good fortune I have of being born into a life that puts me in the hands of the country's best doctors who can actually do something for me.

Sunday, March 25, 2007

Sort of Helpful Picture?

I'm trying to find pictures of a femoral osteotomy but most of the ones online are of dogs. As my student said this morning, "You're just like a big old Neufie puppy with bad hips!"

Indeed I am.

So I think this gives sort of an idea, especially 3 and 4... I'm not crazy about the question marks on the picture however. I hope this doesn't translate to the doctor opening up the patient and being like "I guess we cut it up here... and rotate it...? Prolly that'll work... now where'd I put that hacksaw..."

I was talking to another student who as it turns out is an anesthesiologist. One of the things I love about teaching is that as soon as everyone puts on their sweaty gym clothes the playing field is leveled - you've got Big Time Record Producer next to Stay At Home Mom and can't tell who's who. Anyway we were talking about how much drugs I was going to be on (how many drugs? Grammar?) and he thought that they could definitely do the surgery with a local anaesthetic. However as I am not so interested in listening to my thigh bone being cut through I believe I'll be taking the Give-Me-All-The-Drugs-You-Have-Right-Now option.

We were talking about the epidural as well and he said that even though everyone "knows" someone that's been paralyzed by the needle being inserted too far into the spinal column, the chance of any sort of serious consequences are about 1 in 100,000. I've been wondering whether it would affect my ability to lie on my back and he said the catheter is tiny and you can't even feel it. And then he got that little glint in his eye and said "The epidural is good... you want the epidural."

Saturday, March 24, 2007

Hurry up and Wait

A well known phenomenon in the acting business where it is implied, usually by a stressed out 2nd Assistant Director, that it is CRUCIAL that the makeup person FINISH getting you ready so that you can be on set within the next 10 minutes at the MOST, at which point you then stand around for half an hour while the client discusses something totally unrelated to you and then it's time for a union ruled lunch break.

Also what I've done to myself in this here situation. I'm so prepared it's ridiculous. I have 5 separate lists of everything from questions for surgeons to what I'm bringing to the hospital to what foods I should be eating. If surgery was tomorrow I'd be totally down. I kind of wish surgery was tomorrow.

And so, while we're all standing around waiting for something to happen, I present for your entertainment:

Thursday, March 22, 2007

An Unrelated Surgeon Weighs In

I had another excellent conversation, this time with my friend and yoga student who is a pediatric heart surgeon. That's right people, he operates on walnut-sized, brand new hearts. Like these ones over here ->

Here's what he said:

In an ordinary, run-of-the-mill situation, like gallstones, you could go to a million different doctors and they would all say the same thing, remove the gallbladder, because it is the standard surgery. But when you get to a level of medicine that is this specialized, you will get multiple opinions, and you usually end up in the situation that I am in, where you have 3 different, all very competent doctors, recommending 2 different things.

It's important that you're not looking for a particular answer like "saw my leg off!" because if you go to enough doctors, eventually you'll find someone willing to do it. You also want to make sure that they're not recommending whatever they're recommending because of a study or something they're doing that doesn't have anything to do with your case. And to be aware that a lot of decisions are made in the OR as well once you're on the operating table.

So with all that in mind the most important thing is to really trust your doctor and feel comfortable that he is competent, which is how I feel about Dr. Buly. Once you have made that choice, you should then start creating a positive energy around the surgery, that he is the best surgeon for the job, everything's going to go well on the day, everything will heal well etc. He said the people that do that seem to have the best outcomes.

AND I spoke to a prior patient of Dr. Buly's and apparently when they all go off to the big conferences he's the one who's leading the master classes, that he is really the top of his field. I am so relieved at this point and I'm already starting to create that positive energy around him. Feel free to do the same.

Tuesday, March 20, 2007

FO II: Return of the FO

After a few days of trying not to go totally mental, and trying to only call the office 2 times per day, I finally had an excellent conversation with Dr. Buly about why he wants to do the FO rather than the PAO. He said that if he did the PAO, it wouldn't address the problems created by the femur. There are 3 things wrong right now: the socket is too shallow, the femur angle is too steep, and the femur is retroverted which causes impingement (why I can't internally rotate my leg). Doing the FO would address 2 of these problems, doing the PAO would only address the first one.

The FO will put the femur head deeper into the socket, so even though the socket is shallow, it might mean that the pain would be gone and there would be no need for a PAO. I asked about doing both surgeries at the same time and he said it was possible, but that it's a lot of surgery, and that he didn't think in my case that it was absolutely crucial to do both. He said that this was the conservative choice of surgery and that he thought it would have the best outcome with the least amount of messing around in there.

The other thing, and this is what made me happy, is that Dr. Helfet at HSS agreed with him that the FO was the right one to do. I am going go in and see Dr. Helfet and talk to him about it as well. At this point I may not go up to Boston - as my friend said, you stop when you have an odd number of opinions!!

Overall it made me feel much more secure about the decision to go ahead with the FO on April 24th with Dr. Buly, which is what I'm going to do. And I'm enormously relieved to have my questions answered so fully. By Dr. Buly. Clearly I feel better if I'm rhyming.

Anatomy buffs they detach the vastus lateralis (one of the quads) from the origin point on the femur and slide the metal plate underneath.

Saturday, March 17, 2007

Calming Down Again

OK. Here's what I'm thinking.

There's more than one way to deal with the current situation in my hip, and different doctors are going to have different opinions about what the best way to do that is.

Dr. Buly did say at our first meeting there was a possibility that both the PAO and the FO would be necessary, since my problems are both with the acetabulum and the femur. It makes sense to me that the less invasive surgery (FO) would be the preferable first attempt and that if needed the PAO would follow.

This whole thing may also make Dr. Buly at least think harder about why he wants to do the FO and that can't be a bad thing. I'm still scheduled for April 24th and I'm just going to be a little bit of a pain in everyone's ass until then so that I'm satisfied that the right thing is going down.

It's funny, I never understood why patients having surgery always seem to insist on questioning the doctor or becoming experts themselves - didn't they trust the person to do the right thing? But now I'm starting to see how even in the medical field there's a fair amount of opinion floating around in the decision making process, that it's not just a single answer spat out of a series of tests, and as much as we can trust another human being to choose what's right for us, in the end, it's a human, fallible choice.

Friday, March 16, 2007

Of Course

So Dr. Kim (Dr. Millis' partner at Children's Hospital in Boston) reviewed the films and of course, is recommending a PAO rather than FO.

I want to crawl under my bed and hide from all these doctors.

But instead best foot forward (that would be the left one), I'm going up to meet with him in April 2 weeks before my scheduled FO. He wants to do a second MRI using a dye so that they can better ascertain the biochemical makeup of the cartilage.

There's a strong chance I'm going to have 2 different recommendations and that I'm just going to have to make a choice as to which one I want to have done.

I'm so tired of this whole thing already it almost makes limping for the rest of my life seem like a viable option.

On a grosser note, I was asking the head nurse at Dr. Buly's office about which muscles are cut during the surgery and she said that rather than thinking about them as being cut, I should think about it like they are being spread, similarly to when you cut along the grain in a piece of chicken. Mmm.

Monday, March 12, 2007

Calming Down

I spoke to Dr. Millis' office today and I'm sending them all the films - X-ray, MRI and CAT scan. He'll review it along with Dr. Buly's notes and may be able to agree or disagree with his recommendation for surgery simply based on what he sees, or may need me to go up there.

After the initial shock of the reality of this whole thing going down I'm starting to calm down again and get back into organizational mode - which in itself is calming to me. I'm sure there will be more overwhelming moments but this last wave of it has passed for now.

Saturday, March 10, 2007

Surgery and Date

Dr. Buly called yesterday with the results and said that the femur, which appeared to be retroverted 2 degrees on the X ray, is actually at 10 degrees. So he recommended a femoral osteotomy, the shorter surgery where the femur is cut and rotated to get better coverage and then held in place with a metal plate (like staking a plant as my stepmom so accurately put it!).

The cartilage overall is a 1 (hooray!) but there is a small spot where it is worn down to the bone (ow!) so he's also going to drill into the bone to try and stimulate the cartilage growth. Also the labrum is torn so he's going to do some arthroscopy as well to clean it up a bit. It's all kinds of messed up in there, basically. He said there's a 1% risk of infection, but that doing this surgery may mean I don't need hip replacement down the line. Dr. Helfet at HSS who does osteotomies and Dr. Kelly who does arthroscopes will be shown the scans to confirm his diagnosis. He also gave me the name of a patient who has had this surgery who has been willing to talk to pre-ops like me.

6 weeks 20% weight bearing on crutches is still his prediction. Maybe it's a shorter time than some others I've read about because I'm so buff ;-)

Also my rotation in the joint will still allow good range of motion, which was a big concern for me, but it will be different - right now I have very little internal rotation and way too much external rotation (which means I can do a lot of crazy yoga poses but only on one side).

I was reeling a little from that when his nurse called back to schedule the surgery for Tuesday April 24th. Which made me reel even more.

Then I posted to the hipwomen group on yahoo about it and have gotten some replies that are making me a little concerned. The general tone is that nowadays PAO is the standard surgery and that FO is a little old school and only used when the Dr in question doesn't know how to do a PAO. Which is not the case with Dr. Buly, but I'm also being told that recovery is a lot more painful because the femur is a denser bone than the pelvis, and that the hardware removal is more complicated and will require another month on crutches when that happens.

So I'm going to try and go up to Boston to see Dr. Millis at Children's Hospital. He's the big deal man on the East Coast. Part of me is so ready to go ahead and do the surgery now that I have a date that I have to keep reminding myself to slow down and get all the opinions, weigh all the advice... patience is not my strongest suit...

Friday, March 9, 2007

Hey Beautiful

I got a "Hey beautiful" from a man on the street yesterday.

Which if you live in New York, and you can be identified as a woman, is not that unusual (although the market slows down in the winter due to un-beautifying bulkiness of down coats).

But I was caught totally off-guard as I was limping down the street.

I feel so enveloped right now by my hip, not only the physical pain but all the worrying and wondering about surgery (which is also waking me up way too early in the morning) that I don't really feel like anything else but my hip exists. When I first was diagnosed and up until I started making inroads towards surgery it felt like a small part of who I was, like a little alien creature in my body. But now it's practically the only thing I think about, and I feel like my personality - my existence - has been taken over by my disability.

On the positive side I make no bones (excellent pun and the first of many) about sitting at the front of the bus in the disabled people seats and spending way too much money on taxis (which have always been my guilty pleasure). But I am glad to realize - to remember - that I am more than my gimpy hip. Usually when someone yells out at you on the street it's kind of annoying, but I am grateful for my anonymous caller for reminding me that even as a gimp, I am still beautiful.

Of course he may have been a loon, but I'll take it where I can get it.

Tuesday, March 6, 2007

Extremely Loud and Incredibly Close

Had the MRI and CAT scan today.

The MRI was first. If you have any metal in you, formerly in you, or anywhere near you, they want to know!!! They did each hip separately and each side took over half an hour, although the second side was shorter (not sure why). This is the one you've seen on all those TV doctor shows where you go into a giant cylinder and then the too-handsome doctor gasps at the giant tumor in your brain, or something.

Depending on how you feel about being enclosed and not able to move for an hour, this is either kind of comforting or not at all cool. Also it's the noisiest thing you've ever been so close to, so if you're offered earplugs, take them. They gave me headphones and my choice of music but once the machine started I couldn't hear anything else. My feet were taped together so that I couldn't move my legs and I was wedged in all the way up my body and wrapped in a sheet. It kind of reminded me of being tucked into bed as a little kid, but then again I'm not claustrophobic...

I went in feet first and since I'm tall, my head stuck out a little bit so I didn't have the completely enclosed experience, although after a while when my arms fell asleep I started to get a little impatient for it to be over. It comes in blasts of different time lengths and slightly different sounds, which the technician compared to a jackhammer, but I would say only sounded like a jackhammer if the jackhammer in question was from the Jetsons. You are also warned about any part of your body getting hot as a signal to stop. The room was freezing and I didn't understand why they kept it so cold until the machine came on and I started to get really warm from it, and then entertained myself wondering what the line between warm and hot was and if I was doing irreparable damage to my body by not speaking up about the fact that I was warm all over...

They take you out and move you around in between sides and the second side got a little easier. As I got used to what was going on I actually started to drift off a little bit, but if you're at all uncomfortable with small spaces you probably won't be so comfy. It's not the greatest experience, but I've had worse.

The CAT scan was next and was a total piece of cake in comparison. This machine is more like a donut so you're not enclosed at all, and makes no noise. It took less than 10 minutes for the whole thing.

So now, sit and wait, and send out cartilage prayers that sound like binary code: 0 or 1, 0 or 1, 0 or 1.

Saturday, March 3, 2007

A little background

I was first diagnosed with congenital hip dysplasia about 5 years ago. I started feeling a strange pain in my hip when I drove or occasionally when I walked too much, and I saw a physical therapist who believed I had a groin pull and said it would just take a while to feel better. After a while became a really long while and there was no improvement, I went to see a second PT (Dr. Areta Podhorodecki) who had X-rays done and gave me the correct diagnosis. I went on a course of physical therapy with her but it didn't do that much for me - I was practicing yoga a lot and the physical therapy was nowhere near as intense as my yoga practice. They had me stop my yoga practice while the physical therapy was going on and I ended up just kind of miserable and not actually feeling that much better, although giving me the right diagnosis was a great gift. I was told at that time that my only other option was hip replacement surgery, and that I should just "manage my pain" (a phrase I have come to truly hate) as long as I could, since replacements have a limited shelf life.

Anyway after the PT was done I went back to my yoga practice and got more serious about it, and it did so much for me that although I would still experience pain from long walks it was tolerable for the next few years. I would highly recommend developing a yoga practice for anyone with this condition and in particular check out Anusara Yoga - their knowledge of the body is so deep and will help enormously.

Then about 6 months ago it started to get much more intense, and I started to feel pain in the front of my right knee as well which made me nervous that things were getting worse. After complaining to a friend for the millionth time he turned around and said "Why don't you do something about it?" So I started looking online and talking to people and went to see some orthopaedic doctors. I saw Dr. Della Valle at the Hospital for Special Surgery in NYC (which I have read is the second best hospital for this kind of surgery, #1 being the Mayo Clinic in Rochester, MN) and Dr. Khanuja at Johns Hopkins in Baltimore (I especially loved him, he gave me so much information - if you're in the area he's a great first doctor to see), and both recommended acetabular osteotomy as a possible surgical option. PAO is the kind of surgery that you have to do at that exact right time in your life where you're too young for hip replacement, and still young enough that the cartilage is in good enough shape.

Every doctor that I've seen has said not to even bother with arthroscopy (basically going in and cleaning out debris in the joint) or cortizone shots/steroid therapy, that the situation is too far developed for that. So big time surgery it is. I'm strangely unafraid - I have a lot of anticipation, but I feel like even if I have to go through a really huge and tough experience with surgery (and from everything I've been reading it's no picnic) if I can come out the other side with a hip that I can walk on, that doesn't grind and cause me to limp around, and even maybe allows me to get deeper into my yoga practice - it's worth a little short term suffering. A lot of people talk about doing everything you can to avoid surgery, but for whatever reason I don't feel that way. I'm waking up in the night in pain now, my yoga practice has regressed sharply (so frustrating), walking is not comfortable at all. I'm not the kind of person who will just take Tylenol or Aleve for the rest of my life, and they're not doing that much for me anyway when I do take them. There's a lot of support out there online (and I'm hoping this will add to it) and like I read in a post the other day, it's not like being in a car crash and suddenly facing some huge surgery with no idea what to expect. This feels like the right way to go, so I have my fingers crossed that the MRI and CAT scan will agree.

Thursday, March 1, 2007

Insurance and injections

If you're getting a CAT scan and MRI, call your insurance company and check if you need pre-authorization.

Also found out today that the MRI I'm having does not require being injected with any dye. Don't know what it does require but I'll find out when it happens. Glad to avoid at least one round of injections...