Dear All-
First of all, my sincere apologies for disappearing since my daughter's surgery at HSS with Dr. Boachie on June 13th. {Thank you Lynn for letting everyone know that the surgery went fine.}
I have been meaning to post for quite a while but needed some distance from the whole experience to be able to express myself calmly. Despite all the mental (and other) preparation (thanks to terrific advice from folks on this board, particularly Lynn and Susanna), the whole process unnerved me more than anything else that I have experienced in my life. But I am together now and ready to spill the beans...
As some of you might remember, my daughter had congenital kyphosis (because of L2-L3 being fused since birth), and in December 2006, Dr. Boachie recommended a surgical revision for a variety of reasons. This is the scoop on the surgery and the post-op stuff--
The morning of the surgery my daughter was quite chipper, and asked that the surgical team let her see the operating room and the equipment before giving her anesthesia. And her very well-natured anesthetist, Dr. Urban, agreed to her request. Later he told me that she asked questions right up to the second she fell asleep.
The surgery took about 4 hours (the longest four hours of my life). Right after the surgery Dr. Boachie (the surgeon) and Dr. Urban (the anesthetist) came out to give me an update. The surgery went mostly as planned. Dr. B did change the fusion plan a bit. He fused T-12 to L4 and provided support using titanium rods; initially he had been planning on fusing L1-L5, but when he opened her up he felt that L4-L5 was more stable than what he had assessed based on the pre-op x-rays, so he left that section alone, and decided to go up one-level instead. Dr. B was a bit concerned about the placement of one of the screws during the surgery, but the post-op x-ray showed that it was in the right place. As you can imagine, I was hugely relieved.
Here’s the part that completely caught me by surprise (I am sure my scoli board friends warned me about this, but I must have filtered out the information). I was shocked to see my daughter's condition in the recovery room. My bubbly happy confident child was in agony, and she had tears streaming down her swollen, and fairly unrecognizable, face – and it was unbelievably hard to see her in that state. Of course, the nurse reassured me that my daughter didn’t really know what was going on because she was coming out of anesthesia but the first few hours (and at that time seemed to stretch endlessly) in the post-op room were unbelievably hard.
The stay in the hospital itself was a fairly decent experience, with some not so great moments. The surgical fellows (don't know if that is the correct term) were absolutely terrific - particularly Dr. M Cunningham. Dr. C answered my umpteen, and probably repetitive questions, with much patience. At one point after the surgery, I expressed some concern that my daughter's mild scolioisis looked more pronounced than before (her surgery was for kyphosis). In response, he brought over the post-op x-rays to her hospital room and explained in detail what was going on (turns out that there was no reason to be concerned at that point). The pediatricians, Dr. Perlmand and Dr. Cha, were superb as well.
The nursing experience in the hospital wasn’t entirely positive until Richard - our favorite nurse - arrived on the scene three days later. He is an amazing caregiver, incredibly patient, funny, and thoughtful. (He mixed her medication with sorbet, made her laugh, and told us about all the fabulous restaurants in NYC where we could order food from.) I hope that anyone who has a surgery at HSS has the opportunity to recieve care from him.
On the sixth day, we flew back to our home city in Upstate NY, but only after an awful travel fiasco - our JFK flight was delayed by ~ 6 hours, of which about 2 were spent sitting inside the plane on the runway!
Once home my daughter didn't want/need any medication, and she has remained medication free since her last dose on the day she was discharged from the hospital. Dr. Boachie truly has a gentle hand and a healing touch. Once home, Richard's punchy wisdom (avoid the BLT -- bending, lifting, and twisting) helped her adjust her daily routines. As per Dr. Boachie's advice, she also starting walking immediately - between 1 and 3 miles each day, depending on how she felt. Unfortunately, she didn't stretch her legs very much (we were so focused on the walking that we forgot about the stretching part!). As a result, her hamstrings ended up being really tight (but more on this later).
The first 8-week follow-up with Dr. Boachie went really well. He was pleased with the fusion, and showed us how the rest of her spine has already started to realign itself into a more normal position. After the first follow-up he removed bending and lifting restrictions (she is now allowed to lift only up to 20 lbs, but is not allowed to twist yet), and also recommended PT. By the time she started PT, her hamstrings were so tight that she could not easily sit on the floor. Thankfully, after about 6 PT sessions her muscles are responding quite well. She's on a regimen of about 8 exercises once/twice daily, which include torso strengthening, stretching, and some balancing exercises. Overall she seems to be doing really well (her left thigh is a tad sensitive to touch, but Dr. Cunningham explained that sometimes that sensation exists as the nerves heal.)
So, here we are, two months + since the surgery and really, really grateful that she is doing so well. A big thank you to everyone on this listserve (starting with the moderator Linda) for being a terrific source of information and support. It would have been much, much, much harder without the scoli board.
For anyone with questions about kyphosis sugery, about Dr. Boachie, Richard, or the Hospital for Special Surgery, I am happy to share my experience.
Thank you everyone for your good wishes and prayers - my daughter and I greatly benefited from them.
Warmly,
Sam
P.S. If anyone is going to HSS, do ask for the HSS spinal surgery prep manual BEFORE the surgery. I didn't recieve this until my last day in the hospital, when I pestered the PT crew in the hospital to give me more information on what to do once I got home with my daughter.
First of all, my sincere apologies for disappearing since my daughter's surgery at HSS with Dr. Boachie on June 13th. {Thank you Lynn for letting everyone know that the surgery went fine.}
I have been meaning to post for quite a while but needed some distance from the whole experience to be able to express myself calmly. Despite all the mental (and other) preparation (thanks to terrific advice from folks on this board, particularly Lynn and Susanna), the whole process unnerved me more than anything else that I have experienced in my life. But I am together now and ready to spill the beans...
As some of you might remember, my daughter had congenital kyphosis (because of L2-L3 being fused since birth), and in December 2006, Dr. Boachie recommended a surgical revision for a variety of reasons. This is the scoop on the surgery and the post-op stuff--
The morning of the surgery my daughter was quite chipper, and asked that the surgical team let her see the operating room and the equipment before giving her anesthesia. And her very well-natured anesthetist, Dr. Urban, agreed to her request. Later he told me that she asked questions right up to the second she fell asleep.
The surgery took about 4 hours (the longest four hours of my life). Right after the surgery Dr. Boachie (the surgeon) and Dr. Urban (the anesthetist) came out to give me an update. The surgery went mostly as planned. Dr. B did change the fusion plan a bit. He fused T-12 to L4 and provided support using titanium rods; initially he had been planning on fusing L1-L5, but when he opened her up he felt that L4-L5 was more stable than what he had assessed based on the pre-op x-rays, so he left that section alone, and decided to go up one-level instead. Dr. B was a bit concerned about the placement of one of the screws during the surgery, but the post-op x-ray showed that it was in the right place. As you can imagine, I was hugely relieved.
Here’s the part that completely caught me by surprise (I am sure my scoli board friends warned me about this, but I must have filtered out the information). I was shocked to see my daughter's condition in the recovery room. My bubbly happy confident child was in agony, and she had tears streaming down her swollen, and fairly unrecognizable, face – and it was unbelievably hard to see her in that state. Of course, the nurse reassured me that my daughter didn’t really know what was going on because she was coming out of anesthesia but the first few hours (and at that time seemed to stretch endlessly) in the post-op room were unbelievably hard.
The stay in the hospital itself was a fairly decent experience, with some not so great moments. The surgical fellows (don't know if that is the correct term) were absolutely terrific - particularly Dr. M Cunningham. Dr. C answered my umpteen, and probably repetitive questions, with much patience. At one point after the surgery, I expressed some concern that my daughter's mild scolioisis looked more pronounced than before (her surgery was for kyphosis). In response, he brought over the post-op x-rays to her hospital room and explained in detail what was going on (turns out that there was no reason to be concerned at that point). The pediatricians, Dr. Perlmand and Dr. Cha, were superb as well.
The nursing experience in the hospital wasn’t entirely positive until Richard - our favorite nurse - arrived on the scene three days later. He is an amazing caregiver, incredibly patient, funny, and thoughtful. (He mixed her medication with sorbet, made her laugh, and told us about all the fabulous restaurants in NYC where we could order food from.) I hope that anyone who has a surgery at HSS has the opportunity to recieve care from him.
On the sixth day, we flew back to our home city in Upstate NY, but only after an awful travel fiasco - our JFK flight was delayed by ~ 6 hours, of which about 2 were spent sitting inside the plane on the runway!
Once home my daughter didn't want/need any medication, and she has remained medication free since her last dose on the day she was discharged from the hospital. Dr. Boachie truly has a gentle hand and a healing touch. Once home, Richard's punchy wisdom (avoid the BLT -- bending, lifting, and twisting) helped her adjust her daily routines. As per Dr. Boachie's advice, she also starting walking immediately - between 1 and 3 miles each day, depending on how she felt. Unfortunately, she didn't stretch her legs very much (we were so focused on the walking that we forgot about the stretching part!). As a result, her hamstrings ended up being really tight (but more on this later).
The first 8-week follow-up with Dr. Boachie went really well. He was pleased with the fusion, and showed us how the rest of her spine has already started to realign itself into a more normal position. After the first follow-up he removed bending and lifting restrictions (she is now allowed to lift only up to 20 lbs, but is not allowed to twist yet), and also recommended PT. By the time she started PT, her hamstrings were so tight that she could not easily sit on the floor. Thankfully, after about 6 PT sessions her muscles are responding quite well. She's on a regimen of about 8 exercises once/twice daily, which include torso strengthening, stretching, and some balancing exercises. Overall she seems to be doing really well (her left thigh is a tad sensitive to touch, but Dr. Cunningham explained that sometimes that sensation exists as the nerves heal.)
So, here we are, two months + since the surgery and really, really grateful that she is doing so well. A big thank you to everyone on this listserve (starting with the moderator Linda) for being a terrific source of information and support. It would have been much, much, much harder without the scoli board.
For anyone with questions about kyphosis sugery, about Dr. Boachie, Richard, or the Hospital for Special Surgery, I am happy to share my experience.
Thank you everyone for your good wishes and prayers - my daughter and I greatly benefited from them.
Warmly,
Sam
P.S. If anyone is going to HSS, do ask for the HSS spinal surgery prep manual BEFORE the surgery. I didn't recieve this until my last day in the hospital, when I pestered the PT crew in the hospital to give me more information on what to do once I got home with my daughter.
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