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.
Bi-Lateral Stryde With Paley Consult Summer '19
Quote from: verticalpush on June 16, 2019, 09:58:41 PMI'm looking forward to reading your diary, OGfivesevener!
Re: what to tell people -- "Leg surgery" works well enough for people who ask what happened but you don't want to get into the details. I personally haven't told more than 2 very close friends the actual truth. You can always embellish the truth a little bit (e.g., maybe one leg is shorter than the other and it's beginning to cause you hip problems?) but it's really up to you and what you're comfortable telling people.
Yea, on the one hand we could just treat it like no big deal and normalize it. Many surely will freak out though. "Leg and spine issues, don't want to get into it."
Quote from: Movie on June 20, 2019, 08:30:09 PMCongrats bro! I see you ended up choosing Paley, when's the surgery scheduled for? mine is Aug 8, Dr. Mahoubian
Hey mine will be mid July. Congrats to you also.
For those going with Paley July-September, I might be open to sharing lodging. Maybe, not sure lol.
Former/current Paley patients,
I am currently searching for a caregiver for the first 2 weeks. Is it the case that during the 3-4 days at the hospital the nurses and staff will be available enough to where I don't really need a caregiver with me?
Should I just book for when I get discharged and onward for 2 weeks?
I'm going through care.com for searching individual providers. Do you have other suggestions that worked well for you?
Thanks so much!
Quote from: Ghostfish on June 26, 2019, 12:43:58 AMHi OG
You don't need a caregiver during time at the hospital. Nurses over there are quite good. You just need a caregiver from the discharge and 2 weeks or so. Caregivers don't really do much for you but you need them at the beginning. You can ask hospital or Paley institute about caregivers.
Good luck!
Cool, much appreciated Ghost.
Well, we are nearly there. I should be responding next week from the hospital. If not, something is up.
Just putting it out there haha.
Hey very random but, can any recent Paley patients let me know if the post surgery rooms have usb outlets? Forgot to pack the plug adapter and it’s just a hassle acquiring one without a car. Thanks!
edit: nvm
Currently in the hospital. No complications as far as I know. I’ll try to only share useful details.
Read about the issue with urinating post op. I had no issues. They bring you into the hospital beds 1-2 hours before surgery. Soon as you get into the door you should be asked if you need to pee. Go regardless if you feel the urge or not. It may help with the post op issues.
If you’re 100% sure you’re going through with surgery. Might be better to not read all the consent forms and all things running through your head right before surgery. Just sign the damn things.
Waking up after surgery was such a relief. You will be disoriented and kids might be crying left and right. Like a damn war zone. Nurse is asking you how you feel like it’s an urgency to move you along to your final room. I’m like give me a second to register how I’m feeling.
Your private room is nice. Door stays close and it never gets that noisy.
I didn’t have a catheter in when coming to. They emptied my bladder out and removed prior.
On surgery day I just rested. Didnt eat till late in the day. I had slight nausea and let them give me something for that first. Waited till I was fine then ate.
So they’re not walking you to the toilet to pee. You get the angled bottle container to pee into. Spread paper towels under your wee wee so you catch any leakage. You’ll get the hang of it and all is good.
Okay so everyone has been great but there are differences in how all the nurses go about things. This is important. Know the meds they give you and what time they were given. I’m on toradol and oxy. Toradol isn’t a narcotic. I feel both help very similarly for pain. Although I need two oxy to have an effect. Toradol is every 6 hours and oxy is every 4. Make note of the times you take them. It should be staggered. Not at the same time. Just take it on schedule instead of waiting for that pain to increase. The issue was one night nurse wouldn’t just come and check on me every few hours like the day nurses. Most nurses come and check and ask about pain so I just relied on that. Keep up with the time you last took a med and set an alarm to wake yourself up if no one’s come to offer meds.
You’re basically getting interrupted 24/7 from nurses checking vitals, then taking blood, then the main nurse for pain.
Pain meds take effect 30 minutes roughly after administration. Once you’ve learned about the PT stretches. That period after the 30 minutes is great time to do stretches. Feels great after doing stretches when pain meds have kicked in rather than keeping your legs in one place all day.
Quote from: InFullStryde on July 18, 2019, 02:46:34 PMYour Journey has began OGFiveSevener. You're courageous and your mind is in full gear. Congratulations.
Thanks IFS! Excited to get to where you’re at soon. Cheers my man.
So no one told me until later in next the day after surgery by the PT. You can move your legs around. Left right rotating slightly left and right etc. for whatever reason I was under the impression legs are so fragile I shouldn’t move. If you have help they can do that. Or if your pain meds are dialed in. The compression pads on your legs can feel restrictive so you can take a break from those also. Just have them back on when you stop moving your legs around much.
Dial the pain meds in and do the stretches 3 times a day while in the hospital. The walker was quite easy day 2 post op. So they transitioned me to crutches at the end of therapy. That was all new to me and I was tired after making a full circle around the floor with walker. Some visualization and I think I can get that down.
In fact they’re discussing not ordering any more wheelchairs for stryde patients now based on all experiences.
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