Steeler
Footballguy
My daughter is 17 and has had health issues pretty much since before she was born (the umbilical cord was wrapped around her neck at birth - that was exciting). She also has mental delays and is in special needs classes.
She has worn a back brace for several years to limit scoliosis curvature (currently at ~50 degrees IIRC) in her lower back. Over the last few years she has also developed kyphosis (currently at 80-85 degrees curvature - this is a rounding of the upper back; hunch back). The degree of curvature of the kyphosis is the reason they are recommending surgery. We've already sought a 2nd opinion and they agreed with the recommendation for surgery. The surgery would be 6 to 8 hours and they would repair the entire back (I can't remember the exact list of vertebrae they will fix) meaning they would expose the spine, add a bracket (or whatever the proper term is called) to each vertebrae, shave the vertebrae if needed so it can be properly aligned, connect the brackets, align the spine and then tighten everything. It's crazy to me that this is even possible. The surgeons are well known in this area and this is the only surgery they do so we are in good hands but it is still scary as hell.
Typically, surgery is recommended to relieve pain, correct any cosmetic issues of the patient, and/or to prevent future issues with nerves (numbness, etc.). She has no pain and is not concerned at all about how she looks. It's not overly noticeable when she is dressed (she never wears a bikini or anything like that - always a t-shirt or something when in the pool). If she bends over it's very noticeable and the x-ray is almost unbelievable - its very squiggly as she likes to say. So without any pain and/or concern about how she looks we are left with trying to prevent future possible issues that may never arise. OTOH, if we wait it may just continue to get worse. My biggest fear is that there will be some lingering pain due to the surgery that simply doesn't exist now - that would be heart breaking.
Most people ask this question so I'll answer it now: if everything goes well. the recovery from the surgery is 2 days in intensive care and a total of 4 or 5 days in the hospital. Within 4 to 6 weeks most patients can begin jogging - so to me that's pretty much the end of the recovery process for my daughter. They say she will be taller after the surgery so she is hoping to be taller than her sister after the procedure - she really tries to find the positive in everything
On one hand, I try to be extremely positive and assume everything will work out fine and within 4 to 6 weeks she'll be back to normal but with better posture and less of a chance of having negative implications from the kyphosis. OTOH, this is a major surgery to the spine and she has no pain or any outward/known/whatever type issues that the surgery would be fixing. My wife and I keep thinking of that x-ray and think it's the right thing to do (not to mention 2 specialists recommend it).
Additional information if it makes a difference:
She's been diagnosed with Ehlers Danlos syndrome but that cannot be confirmed by any tests so we don't know for sure. It is a connective tissue disorder where her joints are more lax than most people and the biggest issue for Ehlers Danlos patients is that it can effect arteries, viens and the heart. She sees a cardiologist once a year and everything appears to be normal from a cardiovascular POV. She has dislocated her right kneecap twice (the second time I was able to pop it back in myself - first time I had no idea what to do) and has fractured a hip during a fall at home on a tile floor - not anything more forceful than that.
These sort of underlying existing conditions give us additional reasons for concern about the surgery and the long term effects of the procedure. Anyway, thanks for reading - surgery not until end of August so we have time to worry about this for a while.
Anyone have experience with anything like this?
She has worn a back brace for several years to limit scoliosis curvature (currently at ~50 degrees IIRC) in her lower back. Over the last few years she has also developed kyphosis (currently at 80-85 degrees curvature - this is a rounding of the upper back; hunch back). The degree of curvature of the kyphosis is the reason they are recommending surgery. We've already sought a 2nd opinion and they agreed with the recommendation for surgery. The surgery would be 6 to 8 hours and they would repair the entire back (I can't remember the exact list of vertebrae they will fix) meaning they would expose the spine, add a bracket (or whatever the proper term is called) to each vertebrae, shave the vertebrae if needed so it can be properly aligned, connect the brackets, align the spine and then tighten everything. It's crazy to me that this is even possible. The surgeons are well known in this area and this is the only surgery they do so we are in good hands but it is still scary as hell.
Typically, surgery is recommended to relieve pain, correct any cosmetic issues of the patient, and/or to prevent future issues with nerves (numbness, etc.). She has no pain and is not concerned at all about how she looks. It's not overly noticeable when she is dressed (she never wears a bikini or anything like that - always a t-shirt or something when in the pool). If she bends over it's very noticeable and the x-ray is almost unbelievable - its very squiggly as she likes to say. So without any pain and/or concern about how she looks we are left with trying to prevent future possible issues that may never arise. OTOH, if we wait it may just continue to get worse. My biggest fear is that there will be some lingering pain due to the surgery that simply doesn't exist now - that would be heart breaking.
Most people ask this question so I'll answer it now: if everything goes well. the recovery from the surgery is 2 days in intensive care and a total of 4 or 5 days in the hospital. Within 4 to 6 weeks most patients can begin jogging - so to me that's pretty much the end of the recovery process for my daughter. They say she will be taller after the surgery so she is hoping to be taller than her sister after the procedure - she really tries to find the positive in everything
On one hand, I try to be extremely positive and assume everything will work out fine and within 4 to 6 weeks she'll be back to normal but with better posture and less of a chance of having negative implications from the kyphosis. OTOH, this is a major surgery to the spine and she has no pain or any outward/known/whatever type issues that the surgery would be fixing. My wife and I keep thinking of that x-ray and think it's the right thing to do (not to mention 2 specialists recommend it).
Additional information if it makes a difference:
She's been diagnosed with Ehlers Danlos syndrome but that cannot be confirmed by any tests so we don't know for sure. It is a connective tissue disorder where her joints are more lax than most people and the biggest issue for Ehlers Danlos patients is that it can effect arteries, viens and the heart. She sees a cardiologist once a year and everything appears to be normal from a cardiovascular POV. She has dislocated her right kneecap twice (the second time I was able to pop it back in myself - first time I had no idea what to do) and has fractured a hip during a fall at home on a tile floor - not anything more forceful than that.
These sort of underlying existing conditions give us additional reasons for concern about the surgery and the long term effects of the procedure. Anyway, thanks for reading - surgery not until end of August so we have time to worry about this for a while.
Anyone have experience with anything like this?
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