For your viewing pleasure; before xrays
As you can see, I have what is called an "S" curve. The thoracic (middle spine) measures 70 degrees and the lumbar (lower spine) measures 68 degrees. The loss of 3" in height is a result of these two curves progressing. I'm looking forward to the day when I will update this blog entry to include both, before and after, xrays! :)
Warmly,
Doreen
I met with Dr. Lenke last week; he said he can help me and I am scheduled for surgery Aug 1, 2012. I'm on the cancellation list and feel good that the surgery date will be bumped up. I was able to meet with two ladies from the Scoliosis Foundation forum who just so happened to have morning appointments with Dr. Lenke for their 1 year follow ups. Talking with them really helped pass the time and it was very comforting. Nancy, who is in her late 50's, had similar surgery and is fused to her sacrum. It was good for me to see her because a lot of folks think there are major flexibility limitations when fused to the sacrum, but you'd never know Nancy had surgery at all just looking at her. Total time in Lenke's office was 5 hours! I was told to expect 3 hour wait time when I scheduled my appointment last month.
Dr. Lenke said that I am very lucky my curves were right at his cut-off (70 degrees for new patients, he specializes in severe cases only) otherwise, he would have referred me to someone else. It is interesting to see his recommendations compared to the Atlanta surgeon. Dr. Lenke was very pleased that I am on Forteo and said that even though I just started Forteo 3 weeks ago, that will not impact my wait time for surgery. He said if my surgery date moves up, his will still operate regardless of how long I'm on Forteo. The Atlanta surgeon measured me at T72* and L58*, Lenke measured me at T70* and L68*.
Lenke gave me a choice of surgeries: Option #1 fuse T4 - L4 (bottom of neck to bottom of lumbar area of spine) and have to come back for additional surgery to replace L5 within 2, 5 or 10 years (the L5 disc always wears out quickly in a full fusion from bearing the full weight of the spine). Option #2 fuse T4 - sacrum (bottom of neck down entire spine and anchored into my sacrum) and no need for future surgery. My response, "To the sacrum will be great... I don't want to have to come back, no offense." Dr. Lenke and his team all chuckled at that. Lenke explained most patients opt for the sacrum. This link shows which vertebrae will be fused http://mississaugachiro.com/interactive_flash_spinal_nerve_chart.php
What does it mean to be fused to the sacrum? I will be able to sit; however I will have limitation with not being able to bend over. Squatting will be necessary to, let's say, pick up something from the floor. Will I walk like the Tin Man? No. I could care less about some limitations because all of Lenke's patients I've talked with who are fused to the sacrum have said all their pain is gone, that they occasionally experience muscle tightness. I'm still conservative with my pain goals. Do I expect to be pain free? No, but I am praying that some pain will be alleviated and anything beyond that is gravy.
Dr. Lenke will do the following procedures in one surgery:
1. T4 - sacrum fusion: Implanting two titanium rods and multiple screws along both sides of spine. Here is a little video showing how a fusion is done (animated, no gorey stuff) http://www.youtube.com/watch?v=OfWQr_2yF9g&feature=player_embedded
2. TLIF (Transforaminal Lumbar Interbody Fusion): an anterior surgery from a posterior approach so no need for a second anterior surgery as the Atlanta surgeon recommended. Dr. Lenke pioneered this approach and teaches surgeons how to do this procedure. This is where he will anchor the bottom of the fusion into the sacrum.
3. Perform about 5 to 8 Smith-Peterson osteotomies: there are 3 levels of osteotomies and I need the "easiest" level I. Osteotomies are removal of bone from the vertebrae which cause a lot of blood loss; however, this creates new bone growth for a stronger fusion.
4. Implant 2 cages at L5 with BMP: Cages are little metal devices that provide a stable platform for the weak L5 disk. One cage will be placed above and one below L5. BMP (bone morphogentic protein to build a stronger fusion) is a material that gives a 23% stronger, faster fusion and Dr. Lenke won't do any surgery without (think of it as super glue). BMP comes in a kit and each kit costs between $10k - $12k. Lenke said I will need 6 kits. Most insurance companies deny BMP because of the cost. Washington University Barnes Jewish Hospital has been absorbing the cost for patients; this is where I'll have surgery. The hospital and Dr. Lenke feel that the benefits of BMP keep patients from having future fusion issues and result in faster recovery.
These surgeries are incredibly expensive and average around $250k. I'm looking forward to taking advantage of our health insurance policy. :) Dr. Lenke only does 30 adult scoliosis surgeries per year. He also leads the pediatric spinal department at Shriners Children Hospital in St. Louis. He is definitely a busy man which is why I have peace knowing the best-of-the-best will be doing my surgery.
Lenke estimates the surgery to last 6 - 8 hours (the Atlanta surgeon suggested 8 - 10 hours for posterior surgery and a 4 - 5 anterior surgery 3 months later). On Lenke's scale of difficulty 1 - 10, he ranked me at 1.5 (1 being the least challenging, 10 being the most challenging). The Atlanta surgeon told me she ranked me as a 6 on her scale. The Atlanta surgeon turned out to be a bit more conservative for my needs and there is nothing wrong with that because it has ultimately led me to Lenke's care.
Lenke expects to get a 70% - 75% correction! I simply cannot fathom that and will be over the moon when it happens. It's hard for me to comprehend any correction since I've been crooked for so long. Lenke said 80% of his patients have significant pain reduction post-op, 12% maintain current pain levels and 8% actually have worse pain. I'll spend about a week in the hospital and Lenke suggested I stay in the adjoining hotel for a few days before heading home. I will be up and walking the day after surgery - amazing! Full recovery will take 1 - 2 years.
I'm well aware there are risks with any procedure. I explained to Lenke my goals are to stop the progression and hopefully alleviate some of my pain. Here is Lenke's website, the Patient Stories tab has some amazing journeys http://www.spinal-deformity-surgeon.com/
I am VERY relieved that I have a plan in place with Lenke. God is good. Thank you so very much for praying not only for me, Jeremy and Lizzie, but for Dr. Lenke and his team. God is creating miracles through Lenke's hands.
Warmly,
Doreen
I'll be meeting Dr. Lenke in St. Louis this week. Excited and anxious. Praying that Dr. Lenke will be able to help me and schedules a surgery date (sooner than later). Not knowing when surgery will be scheduled has been driving me nuts. Wooooosaaaaah....
Warmly,
Doreen
The Forteo injections are good; today is injection #13. Only 717 injections to go! :) Yesterday, I experienced one of the common side effects, pain in my thighs. Have you ever had the flu and your body ached from deep within? That's how this pain feels. I spent a good part of the day yesterday in bed because sitting is painful. This laying around stuff is for the birds. My thighs are achy this morning and I decided that I'm not going to lay around and accept the pain. Lizzie and I went for a short walk through the neighborhood after I worked out this morning. Lizzie-Girl (one of our dogs) layed on my towel next to me while I did my exercises and yoga. It was very sweet to have her company. It is a beautiful cool and sunny morning. I'm looking forward to the fall season. It will soon be applesauce making time. :)
Lizzie and Jeremy have been very helpful with my growing need for help. This experience has humbled me as I'm not used to asking for help. We have a new routine every night since I started taking Forteo. At 9pm I get settled into bed and either Jeremy or Lizzie bring up the Forteo pen (which needs to be refrigerated) to me, I do my thing, and they bring it back downstairs and put back into frig. I've heard patients say they are able to avoid dizziness/nausea by doing the shot in bed at night.
Last night, I'm in bed, have my little needle and alcohol swabs ready, I'm in my jammies waiting patiently. I don't hear anyone coming. I wait a little longer, little longer... how could they forget me? ;) So I walk toward Lizzie's study and Jeremy's office which happen to be upstairs, just down the hall. I'm standing in the hall; look to my left and see Jeremy and look to my right and see Lizzie. I quietly asked, "Can someone bring me Forteo? Anyone? Anyone?" Lizzie laughs, "Mom, you are too cute!" She ran downstairs and brought it up.
It's really sweet how Lizzie wants to help with the injections and has learned how to do everything in the preparation of the shot except the actual injection (I prefer to do that myself). She does the swabbing of the Forteo pen tip and my injection site, attaches the needle, loads the medicine, removes needle caps (I inject and replace needle cap), then she removes capped needle and places in bio-hazard container.
I look forward to being "on the other side." This is what patients refer to as being post-op.
Warmly,
Doreen
I had a great meeting with the endocrinologist. He explained that mega doses of vitamins won't build bone and that there is only so much the body can absorb before the excess is passed as waste. The endo prescribed Forteo since there is an urgency to get surgery because both sides of ribs are now compressing into lungs and pelvis. My insurance approved the prescription and the Forteo phase has begun: daily injections for 2 years. I started injections last week and have not experienced any side effects.
Eli Lilly, the manufacturer of Foreo, is wrapping up their 10 year study on Forteo. Perhaps they will decide it is safe enough for people to cycle back on to it. The endo explained that vitamins will not maintain the new bone grown by Forteo and that I'll need to go on a maintenance drug. Reclast or Prolia are commonly prescribed; however, I'm learning Reclast has some nasty side effects (death).
Thanks for reading,
Doreen
Early tomorrow morning I have an appointment with an endocrinologist. I have a lot of questions, in particular, will mega doses of Vitamin D, Calcium, Magnesium, Vitamin K, Strontium and Boron be more beneficial with reversing osteopenia than medication?
When the surgeon called to cancel the surgery, she explained my bone density results showed I am at the borderline of having osteoporosis. Healthy bone density is a range of 0 to 1, osteopenia is -1 to -2.4 and osteoporosis is -2.5 and beyond. The scores are measured by T and Z scores. My T is -2.4 and Z is -2.0 for my lumbar density. My hip and neck density is at the 97% and 99% normal range. So how is it, that the rest of my body has normal dense bone but the lumbar does not? Well, on the front page of the density results is a statement, "... the presence of severe dextroscoliosis of the lumbar spine may falsely elevate the bone mineral density." Ok, so how do I know the accuracy of my lumbar result considering scoliosis is present which is possibly skewing the results. So many questions.
There are a lot of medications available to slow down the loss of bone: Boniva, Actenol, Evista, Fosamax, etc. All medications have their pros and cons, but I'm not getting a warm fuzzy feeling about them. As far as I know (and my research just started very recently) there is one medication that actually promotes bone growth: Forteo. From what I've read and from patients I've talked to who are taking Forteo, this is the granddaddy of them all by providing very fast results which is especially beneficial to patients looking to have spinal surgery. You see, if a patient has osteopenia/porosis and undergoes spinal surgery, the hardware (rods and screws) that need to be implanted won't have solid, sturdy bone to anchor into. Curve correction won't be as good if the bone is soft in addition to potential future problems with the hardware coming loose.
I read that regardless of which type of bone medication a person takes, at some point, if they stop taking the med, their bone loss will return. In particular, Forteo is to be taken as a daily injection for 18 months to 2 years and no longer. Why? There are no long-term studies on the effects of taking Forteo beyond 2 years. Another question I have for the doctor: Can I take Forteo in conjunction with mega supplements so that when I cycle off Forteo, the supplements will maintain the new bone?
A blood test result from last year shows my vitamin D levels are low, healthy range is 20 - 100 and I'm at 33. Vitamin D is necessary for the proper absorption of calcium in the body. Could my density issue be something as simple as taking a boatload of vitamin D? We shall see.
Warmly,
Doreen
My goal for this blog is to share my journey of seeking spinal surgery to correct two scoliosis curves that have been on a progressive path to where my spine is now collapsing (I've literally lost 3 inches in height over the past year). I hope to educate, inspire and at times, entertain.
What's up with the name, Bionica? My daughter, 11 year old Lizzie, started calling me Bionica in July 2011 when I learned how my spine has worsened in recent years and the need for spinal surgery. I already have 16 titanium screws in my face as a result of reconstructive jaw surgery years ago; phase I: The Making of a Metal Momma started with this surgery in 1995. Have I set off metal detectors? Yes, while visiting the FBI building in Washington DC where they have super sensitive detectors. Phase II: Bionica will hopefully take place during 2011 where two titanium rods will be implanted along my spine along with supporting screws.
As a pre-teen, I was diagnosed with scoliosis and the doctor said, "... it's not that bad, don't worry about it." Well, I didn't worry about. After my son was born in 1987, I noticed frequent back pain but chose to ignore it. After my daughter was born in 2000, the back pain increased so I went to a doctor who said, "... you are too old for a back brace, just sit up straight." Gee, that helped a lot - NOT! A few years went by and in 2006 I went to a chiropractor for pain relief. My x-rays showed two curves at about 40 degrees each. Severe scoliosis is typically defined as curve(s) beyond 70 degrees. I was shocked and terrified looking at the snake of a spine that appeared on my x-rays. The chiro care was short lived because the treatments eventually aggravated my pain so I stopped going.
Fast forward to January 2011, my back pain significantly increased (constant burning pain in lumbar area) but I'm still try to grin-and-bear-it. I continue with my weight training as it has always provided pain relief in the past. After returning from a vacation in June 2011, I develop a stabbing pain in my lower right ribs which prompted me to call me new doctor. Weight training aggravates my back at this point and I stop training. My doctor just looked at me, not x-rays, and said it is obvious I have scoliosis and surgery will be needed, but he wants me to explore all options before considering spinal surgery. The stabbing pain I mentioned at the bottom of my right ribs is a result of my insides being compressed by the spinal curves and my ribs are pressing into my lungs and pelvis.
I met with an non-surgical orthopedic doctor who prescribes a few weeks of physical therapy and advises that she can do various injections in my spine to help with pain. What I've learned recently is that injections are really hit or miss; they work for some people while they can sometimes make the pain worse for others. My decision was to do what was necessary to stop the curve progression and alleviate some of the pain.
How do you stop an aggressive scoliosis curve(s)? Surgery. Physical therapy does nothing to slow down progression, it is merely for pain management. I'm not one to jump into surgery lightly, but I've had it in the back of my mind that surgery will be necessary at some point in time. That time is now because the quality of my life has greatly diminished over the past year. I'm tired of saying I'm unable to do things because of my back pain. The older a patient is, the more difficult the recovery from such a major surgery so I'd rather take care of it now than later.
During July 2011, I consulted with an Atlanta surgeon who had a lot of scoliosis surgery experience. Jeremy (hubby) and I felt comfortable with her, had heard great things from prior patients, and liked her credentials (fellowship at UCSF with primary focus on scoliosis). During my appointment with the surgeon I had three BIG surprises. Surprise #1: The surgeon recommended two surgeries - posterior (incision down back) and anterior (incision into abdomen). A full fusion was recommended from T6 - S1 (from top of thoracic to top of sacrum). I didn't know spinal surgery could be done from the front of a person, who knew? Surprise #2: My height was measured at 5'7" Wait a minute! "Are you sure?" I asked the nurse. She confirmed her measurement and yup, I'm no longer 5'10". Surprise #3: The surgeon said my thoracic (middle of spine) curve measured 72 degrees and my lumbar (lower spine) curve measured at 59 degrees. Are you kidding me?!
I went ahead and scheduled an August 30 surgery date for the posterior procedure, the anterior surgery would have come 3 months later. Do you notice the past tense in that statement? I immediately went into planning mode for the big day, making arrangements for Jeremy and Lizzie the week of the surgery, coordinating someone to take care of our pets, getting all the necessary medical tests done, etc.
On August 8, 2011 I had the carpet pulled out from underneath me with a single phone call and my world seemed to have crashed. The surgeon called to say there was a problem with my bone density test results, my bones were too soft, and that she would not do the surgeries. *sigh* My greatest fear had become reality, now what? The surgeon referred me to an endocrinologist who will prescribe meds to beef up my bones. How long will that take because my pain and curves are getting worse? My appointment with the endo is Aug 24 and I'm praying that God place the right medication in my path and that my body positively responds to it.
So is that it, did I just settle for this outcome? Absolutely not! Jeremy and I decided to seek a second opinion from one of America's top scoliosis surgeons, Dr. Lawrence Lenke in St. Louis. I've been able to connect with many of his patients through the National Scoliosis Foundation. Quite a few of his patients have said that it took over one year to get an initial appointment with him.
I called his office recently and was prepared to hear that the first opening would be in 2012. The nurse explained that Dr. Lenke only sees the "most severe of the severe... you qualify." I didn't quite know how to absorb that comment because if you were to look at me, you'd probably think I look "normal." I decided not to dwell on that too much and thanked God for putting me in a position to "qualify." The nurse asked, "Can you be here September 21?" I was speechless and shocked (still am a bit shocked) and asked if she was talking about next month? Would I actually meet Dr. Lenke himself? Are you joking? The nurse chuckled and confirmed that she was not joking. Yes, I'll be there! God is good.
So here I am today, cautiously optimistic about my Aug 24 appointment with the endo and my Sep 21 appointment with Dr. Lenke.
Warmly,
Doreen
