Hi, all ... pull up a comfy chair if you've an urge to read this post; it has gotten LONG ;-).
I've read this board for years, but have just recently registered so I can post. I've finally decided the risk of surgery has got to be better than what I'm living/see coming down the road.
Quick background:
- Dx with AIS at age 10 ... right thoracic curve (apex at T9) ... Boston braced (worn unfaithfully), curve is stable. Since adulthood, it has consistently measured ±50° on the Cobb ... compensatory C and L curves.
- Whiplashed in '97 (smashed by a full sized truck - going about 55 mph - from behind in a Sunbird - going, oh, ZERO mph) - and a year later started the adventure of a periodic bulging disc between C6-C7. This has started happening on a more frequent basis (and in ever-increasing STOOOPID scenarios ... like DRYING MY HAIR). Also experiencing increasing fatigue pain from the scoli in the structural curve area (mainly between the shoulder blades).
- My job (programming) has me in tears by the end of the day if forced to sit at a desk. I'm working mostly from home for a while - semi-reclined in bed.
- Side note ... I've read Wolpert's book (my probable surgeon asked I do so before making ANY decision)
I'm in Houston, and consulted with Dr. Hanson at Baylor last month: I see many weren't happy with his bedside manner, but I REALLY liked him. (He does answer email, BTW ... I've seen someone write they thought he did). I didn't find him in the least bit dismissive of my pain, my concerns, nor any of the issues others found.
Am I saying he's the right surgeon for everyone? Not at all. We all have personal preferences and perceptions, and I just found him a good fit for me.
I never had to deal with his PA. I'm curious why anyone would if they found him offensive. Sorry to be blunt, but you pay that much for a consult, YOU get to write the "Rules of Engagement".
Will I get a 2nd opinion before ANY surgery? Absolutely.
I'd looked at fusion/instrumentation 10 years ago, and wasn't willing to take the crap shoot (the surgeon I consulted back then wanted to do an A/P approach) over my pain level at that point.
I was also told (by previous surgeons) I'd never play softball again: Before you laugh, I'm 39, and have played highly competitive fastpitch (since age 6 ... and still do) and tourney slowpitch. We're not talking co-ed church/rec league here - LOL. He thinks I *could* be back on the ball field at 4 months post-op ... even after hearing HOW I played ball.
Hanson is proposing posterior only fusion/instrumentation from T5-L1.
Best "guess-timate" (and I am fully aware there ARE no guarantees ... other than the NOW pain is getting worse, and I'm getting older) is structural correction to ±20°, and near elimination of the compensatories. Odds are also 70% chance of significant pain relief (yes, yes ... I know it can relocate, remain unchanged ... or even worsen). You get to a point where those odds are too appealing to pass up - and everyone's threshold varies.
I've read with interest the threads on hospitalization time, pain meds, infection (specifically MRSA), menstruation after surgery and recovery. I'll elaborate:
Hospitalization:
Hanson estimates 5 days in Methodist for me post-op. I see several have written that's short. Is it safe to assume this varies based on approach(es) and levels fused?
Pain meds:
I worked with a Pain Mgmt Specialist (an anesthesiologist) for 4 years in an attempt to get the chronic pain under control. FJ injections, Botox in a seriously knotted left trap, 4 rhizotomies (3 cervical - the nerves kept regenerating, and 1 thoracic ... only achieved a partial burn and I'm sure it only pissed off the MB nerves), etc., etc. Began with Vicodin, moved on to Norco with a concern for acetomeniphen toxicity ... then to Fentanyl (Duragesic patches - which I sweated off playing ball, even under bio-occlusive tape) ... then Oxycontin (which just made me hyper - and I'm *already* ADHD!) ... and finally Methadone. After 4 months on the Methadone I said "screw it" ... weaned off (merely for safety reasons) and decided to just deal with it.
What I found during all this is I am extremely NOT receptive to typical pain meds in typical doses (I'm 5'2" and roughly 105 lbs. - but require far more than my size would dictate to achieve *any* relief whatsoever). I had an ankle reconstructed May 2006 (severed 2 ligaments, um ... playing ball - what else?), and thankfully, my ortho was willing to rx the appropriate levels.
This is a HUGE concern with what lies ahead - just how much worse will THIS be, and can it be controlled? (yes, I've emailed Hanson this query ... just curious if anyone else has this odd quirk)
MRSA:
I developed it after breast augmentation in 2001. No abcess developed, but it was a freaky 2 months trying to stalk an Infectious Disease doc who'd see me as an outpatient.
Aside from the scoli, I have a VP shunt (28 years old - never revised) for hydrocephalus. You think MRSA on metal is scary, imagine thinking MRSA is on silastic tubing. The ONLY way to rid the infection on plastic is to remove the shunt tubing. I now just arrange for a Vancomycin drip *anytime* I have surgery. If you've ever had MRSA (or VRE, for that matter) you are probably still a carrier (it colonizes in the nares).
Menstruation:
Is there anyone out there who's on the pill year round to prevent menstruation? I am (and, yes, my Ob-Gyn rx'd it ... not self-medicating) - and wonder if the situation is different.
Recovery:
I'm single, stubbornly self-sufficient, and my kids are no longer at home. My Mom would come stay, but best case, she'd drive me nuts ~hovering~ ... worst case, she's 73 - and not all that "physically balanced" (inner ear issues and osteoarthritis). I can just imagine one of us falling and the pair going down like dominoes.
I do have friends who want to come camp out round the clock, but I'm a horrible patient in that I tend to want privacy to lick my wounds. Hanson also suggested home health care for an hour or two a day - and a well set-up home prior to surgery (he preferred the friend camp out option, BTW). If I need to opt for the "friend camp out", won't I know I need that before I'm discharged from the hospital?
__________________________________
I guess that's all ... for now - LOL!
Thanks to you all for your stories, your experiences, and I look forward to your feedback.
Best regards,
Pam
I've read this board for years, but have just recently registered so I can post. I've finally decided the risk of surgery has got to be better than what I'm living/see coming down the road.
Quick background:
- Dx with AIS at age 10 ... right thoracic curve (apex at T9) ... Boston braced (worn unfaithfully), curve is stable. Since adulthood, it has consistently measured ±50° on the Cobb ... compensatory C and L curves.
- Whiplashed in '97 (smashed by a full sized truck - going about 55 mph - from behind in a Sunbird - going, oh, ZERO mph) - and a year later started the adventure of a periodic bulging disc between C6-C7. This has started happening on a more frequent basis (and in ever-increasing STOOOPID scenarios ... like DRYING MY HAIR). Also experiencing increasing fatigue pain from the scoli in the structural curve area (mainly between the shoulder blades).
- My job (programming) has me in tears by the end of the day if forced to sit at a desk. I'm working mostly from home for a while - semi-reclined in bed.
- Side note ... I've read Wolpert's book (my probable surgeon asked I do so before making ANY decision)
I'm in Houston, and consulted with Dr. Hanson at Baylor last month: I see many weren't happy with his bedside manner, but I REALLY liked him. (He does answer email, BTW ... I've seen someone write they thought he did). I didn't find him in the least bit dismissive of my pain, my concerns, nor any of the issues others found.
Am I saying he's the right surgeon for everyone? Not at all. We all have personal preferences and perceptions, and I just found him a good fit for me.
I never had to deal with his PA. I'm curious why anyone would if they found him offensive. Sorry to be blunt, but you pay that much for a consult, YOU get to write the "Rules of Engagement".
Will I get a 2nd opinion before ANY surgery? Absolutely.
I'd looked at fusion/instrumentation 10 years ago, and wasn't willing to take the crap shoot (the surgeon I consulted back then wanted to do an A/P approach) over my pain level at that point.
I was also told (by previous surgeons) I'd never play softball again: Before you laugh, I'm 39, and have played highly competitive fastpitch (since age 6 ... and still do) and tourney slowpitch. We're not talking co-ed church/rec league here - LOL. He thinks I *could* be back on the ball field at 4 months post-op ... even after hearing HOW I played ball.
Hanson is proposing posterior only fusion/instrumentation from T5-L1.
Best "guess-timate" (and I am fully aware there ARE no guarantees ... other than the NOW pain is getting worse, and I'm getting older) is structural correction to ±20°, and near elimination of the compensatories. Odds are also 70% chance of significant pain relief (yes, yes ... I know it can relocate, remain unchanged ... or even worsen). You get to a point where those odds are too appealing to pass up - and everyone's threshold varies.
I've read with interest the threads on hospitalization time, pain meds, infection (specifically MRSA), menstruation after surgery and recovery. I'll elaborate:
Hospitalization:
Hanson estimates 5 days in Methodist for me post-op. I see several have written that's short. Is it safe to assume this varies based on approach(es) and levels fused?
Pain meds:
I worked with a Pain Mgmt Specialist (an anesthesiologist) for 4 years in an attempt to get the chronic pain under control. FJ injections, Botox in a seriously knotted left trap, 4 rhizotomies (3 cervical - the nerves kept regenerating, and 1 thoracic ... only achieved a partial burn and I'm sure it only pissed off the MB nerves), etc., etc. Began with Vicodin, moved on to Norco with a concern for acetomeniphen toxicity ... then to Fentanyl (Duragesic patches - which I sweated off playing ball, even under bio-occlusive tape) ... then Oxycontin (which just made me hyper - and I'm *already* ADHD!) ... and finally Methadone. After 4 months on the Methadone I said "screw it" ... weaned off (merely for safety reasons) and decided to just deal with it.
What I found during all this is I am extremely NOT receptive to typical pain meds in typical doses (I'm 5'2" and roughly 105 lbs. - but require far more than my size would dictate to achieve *any* relief whatsoever). I had an ankle reconstructed May 2006 (severed 2 ligaments, um ... playing ball - what else?), and thankfully, my ortho was willing to rx the appropriate levels.
This is a HUGE concern with what lies ahead - just how much worse will THIS be, and can it be controlled? (yes, I've emailed Hanson this query ... just curious if anyone else has this odd quirk)
MRSA:
I developed it after breast augmentation in 2001. No abcess developed, but it was a freaky 2 months trying to stalk an Infectious Disease doc who'd see me as an outpatient.
Aside from the scoli, I have a VP shunt (28 years old - never revised) for hydrocephalus. You think MRSA on metal is scary, imagine thinking MRSA is on silastic tubing. The ONLY way to rid the infection on plastic is to remove the shunt tubing. I now just arrange for a Vancomycin drip *anytime* I have surgery. If you've ever had MRSA (or VRE, for that matter) you are probably still a carrier (it colonizes in the nares).
Menstruation:
Is there anyone out there who's on the pill year round to prevent menstruation? I am (and, yes, my Ob-Gyn rx'd it ... not self-medicating) - and wonder if the situation is different.
Recovery:
I'm single, stubbornly self-sufficient, and my kids are no longer at home. My Mom would come stay, but best case, she'd drive me nuts ~hovering~ ... worst case, she's 73 - and not all that "physically balanced" (inner ear issues and osteoarthritis). I can just imagine one of us falling and the pair going down like dominoes.
I do have friends who want to come camp out round the clock, but I'm a horrible patient in that I tend to want privacy to lick my wounds. Hanson also suggested home health care for an hour or two a day - and a well set-up home prior to surgery (he preferred the friend camp out option, BTW). If I need to opt for the "friend camp out", won't I know I need that before I'm discharged from the hospital?
__________________________________
I guess that's all ... for now - LOL!
Thanks to you all for your stories, your experiences, and I look forward to your feedback.
Best regards,
Pam
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