Posted on Jun 15, 2019, 5:27 am
#1
Hey everyone, I had my consult at Dr. Paley's not too long ago. I am booked for July. I'm back and forth about an actual diary but I'd still like to update here and there with hopefully helpful info. As well as another positive or negative experience.
Consult ($500 EOS Scan/Labs & $750 Consult Fee - NOT included in $97,500 surgery fee):
Some do plan the consult and surgery date in one trip for logistics, but doing it ahead of time let's you wrap your head around planning things better.
EOS scan and blood drawn a few hours before my consult. Usually the scan/blood work is done a day prior and following consult is in the morning.
A nurse checks my blood pressure (normal) and my height in late afternoon (168cm. Dangit. I was getting around 5'7.2 in the mornings)
The coordinator and PA spoke to me first at length and I got a feel for how things are at the institute.
Dr. Paley is a busy guy. He was able to drop in for 5-10 minutes to meet me and discuss plans.
Dr. Robins was last to drop in, Dr. Paley's protege you can say. Nice impressions from both and Dr. Robins felt forthcoming with everything.
They checked my Vitamin D levels and it was quite low. It was something to mention but no one made a fuss over it. They just want things lined up for the best outcome any way they can. So we're going to have me start on Vitamin D 10,000 IUs daily. No other supplements were suggested.
They go over the EOS scan. I'm the normal 80% tibia to femur. Dr. Paley has me get on the table and checks my leg tightness with different movements.
I should be good for the middle diameter nail, possibly the largest. And my weight is fine for the support.
I get a tour of the PT room close by and say my goodbyes.
My Impressions:
They are a busy, experienced operation. You may find when you reach out to them it takes longer for a response versus other Dr offices. They have a lot going on. It was late afternoon and I saw several other kids and parents around. A few other adults. Just one guy remaining in the PT room as they were closing. The coordinator said if the consult was in the morning as it usually is I could have seen more CLL patients and asked to meet some.
With variation in how each patient deals with the process. The best way they could describe the usual process is that it's difficult but tolerable. And she mentioned a patient saying she thought it would have been more difficult. Basically it helped with my comfort level more.
Not knowing what type of person I am, the PA mentioned she usually likes patients to tell at least 1 person about going through the process. Im deciding not to tell anyone until after. I rather not deal with family worrying. But since it can be a mentally trying time in the beginning, it's good to have someone to talk to.
I feel like with reading all the diaries on this forum, I already had good knowledge of everything that was gone over.
I am staying at one of their recommended extended stays with wheelchair shuttle service for the first month. I tried looking into other lodging options and then factoring in the Uber rides to and from, and possibly having to coordinate Wheelchair transport. It didn't seem to make sense given PT is 5 times a week. So it's basically going to be $100-$120 a day for lodging. $3000 a month. Priceline and Ebates will help a bit.
They highly recommend having someone the first few weeks so I'm hiring a caregiver for 2 weeks and go from there. I'm still looking for sources where I get to pick the caregiver and have come up with Care.com so far. The only issue is safety as you kind of have to vet the candidates yourself. But it's still going to be better than something like Craigslist. They let you order a background check.
Oh, I forgot, about the lengthening goals. So, basically 5cm, basically everyone can get there no problem. They say it's good that I don't have a set goal of cm I feel strongly about. Everyone will be different and they have to assess things 1 cm at a time. They'll let you know if all is good for the next cm or not. I am leaning towards 6-7cm, probably landing on 6.5cm. But, I will just see how things go.
At this point, I'm just as concerned about what to tell my family and friends after, as the actual surgery itself. Honesty? Neck surgery? Scoliosis surgery? Bow legs? Who knows.
Anway, that's it for now. I'll update with anything that might be helpful closer to and after the surgery day. I stay pretty busy so can't really be bothered with posting Xrays and all that proving I'm a real patient. Don't think Dr. Paley needs any fake reviews anyway, right?
Cheers everyone.
Consult ($500 EOS Scan/Labs & $750 Consult Fee - NOT included in $97,500 surgery fee):
Some do plan the consult and surgery date in one trip for logistics, but doing it ahead of time let's you wrap your head around planning things better.
EOS scan and blood drawn a few hours before my consult. Usually the scan/blood work is done a day prior and following consult is in the morning.
A nurse checks my blood pressure (normal) and my height in late afternoon (168cm. Dangit. I was getting around 5'7.2 in the mornings)
The coordinator and PA spoke to me first at length and I got a feel for how things are at the institute.
Dr. Paley is a busy guy. He was able to drop in for 5-10 minutes to meet me and discuss plans.
Dr. Robins was last to drop in, Dr. Paley's protege you can say. Nice impressions from both and Dr. Robins felt forthcoming with everything.
They checked my Vitamin D levels and it was quite low. It was something to mention but no one made a fuss over it. They just want things lined up for the best outcome any way they can. So we're going to have me start on Vitamin D 10,000 IUs daily. No other supplements were suggested.
They go over the EOS scan. I'm the normal 80% tibia to femur. Dr. Paley has me get on the table and checks my leg tightness with different movements.
I should be good for the middle diameter nail, possibly the largest. And my weight is fine for the support.
I get a tour of the PT room close by and say my goodbyes.
My Impressions:
They are a busy, experienced operation. You may find when you reach out to them it takes longer for a response versus other Dr offices. They have a lot going on. It was late afternoon and I saw several other kids and parents around. A few other adults. Just one guy remaining in the PT room as they were closing. The coordinator said if the consult was in the morning as it usually is I could have seen more CLL patients and asked to meet some.
With variation in how each patient deals with the process. The best way they could describe the usual process is that it's difficult but tolerable. And she mentioned a patient saying she thought it would have been more difficult. Basically it helped with my comfort level more.
Not knowing what type of person I am, the PA mentioned she usually likes patients to tell at least 1 person about going through the process. Im deciding not to tell anyone until after. I rather not deal with family worrying. But since it can be a mentally trying time in the beginning, it's good to have someone to talk to.
I feel like with reading all the diaries on this forum, I already had good knowledge of everything that was gone over.
I am staying at one of their recommended extended stays with wheelchair shuttle service for the first month. I tried looking into other lodging options and then factoring in the Uber rides to and from, and possibly having to coordinate Wheelchair transport. It didn't seem to make sense given PT is 5 times a week. So it's basically going to be $100-$120 a day for lodging. $3000 a month. Priceline and Ebates will help a bit.
They highly recommend having someone the first few weeks so I'm hiring a caregiver for 2 weeks and go from there. I'm still looking for sources where I get to pick the caregiver and have come up with Care.com so far. The only issue is safety as you kind of have to vet the candidates yourself. But it's still going to be better than something like Craigslist. They let you order a background check.
Oh, I forgot, about the lengthening goals. So, basically 5cm, basically everyone can get there no problem. They say it's good that I don't have a set goal of cm I feel strongly about. Everyone will be different and they have to assess things 1 cm at a time. They'll let you know if all is good for the next cm or not. I am leaning towards 6-7cm, probably landing on 6.5cm. But, I will just see how things go.
At this point, I'm just as concerned about what to tell my family and friends after, as the actual surgery itself. Honesty? Neck surgery? Scoliosis surgery? Bow legs? Who knows.
Anway, that's it for now. I'll update with anything that might be helpful closer to and after the surgery day. I stay pretty busy so can't really be bothered with posting Xrays and all that proving I'm a real patient. Don't think Dr. Paley needs any fake reviews anyway, right?
Cheers everyone.