Patient Stories

Hayley

My daughter was 15 yrs 3 months old in Oct 2013 when we found out she has HD in both (right worse than left) AND was a great candidate for PAO (periactebular osteotomy) BUT wait till pain came as could go on for yrs with NO pain (which we prayed & prayed that would be the case as she is not a sports player & never has been just in PE in school).

How we came about discovering she has HD was what I say “by a fluck” as her orthopedic specialist had been treating her like for almost 2 yrs prior to Oct 2013 for a LEFT knee injury/pain from when she was playing basketball in PE she jumped & “landed wrong” she was in braces/no weight bearing/no bending type braces/on crutches and NO PE for almost 2 yrs & still was having “problems/ pain” (it got to the point also he had to refer her to physical therapy to learn to walk AGAIN without braces & crutches—which they did in a 2 hr session—yea I know it sounded funny to us also of having to have a 15 yr old taught to walk again–but she had that weekend off school & Mon was a holiday so the therapist told her she will allow her to use crutches only in school starting Tue for ONLY 2 weeks–well after the session she said I AM GOING TO SCHOOL ON TUE WITH NO CRUTCHES and by golly she DID–I called her therapist & told her & she was even surprised at her determination)but back to her HD part.

We got xrays of her hips as Dr thought the pain might be coming from hips so he got them back & came into room & asked me if she was 1st born (no has 12 yr older brother) was she breech (no) if anyone on either of our sides has hip dysplasia (I said what is that) so he said that is prob a no & said she has hip dysplasia right worse than left & has to send us to a Pediatric Orthopedic Specialist. So got appt there in Oct 2013 & that was when the new doctor came in & told us she is a great candidate for PAO BUT let’s wait till pain shows up as could go for many yrs without pain so that was our plan but with like yrly checkup. She got thru her 16th birthday in Jul 2014 & rest of Summer well. She done good no pain UNTIL she started school in Sep 2014 in which she was walking 7/10 mile to school & walking from class to class (we had just had new school built 1 level not 3-4 level AND NO stairs) from 1 end of building to other & walk back home 7/10 mile.

By Oct 2014 she started getting pain from her right hip area–called her Dr  & told her—she didn’t think there would be any changes on xrays so didn’t take new ones—so they told her very minimum walking (no to & from school no walking without crutches IN school & had her on very minimum PE) well by Nov 2014 pain started getting worse so they took her out of PE classes for rest of yr & still other restrictions in hopes pain would go down—end of Nov they injected her hip joint with a “test” injection (if it helped relief pain for the 6 hrs it was to then they knew it was in joint from her HD—it did) but it wore off so pain came back AND STILL DID NOT WANT TO DO ANYTHING MORE as they said “it can’t be causing much pain” so I called another Hospital (come to find out her Ortho Spec works there on Tue’s also) we got an appt there within a 1 1/2 weeks time AND it WAS ON A Tue—so got there to register her & all & they asked if we wanted to see our original doctor as she was there today and I said NO we came here for 2nd opinion with a DIFFERENT Dr & we didn’t know she works here also but NO–we got with with a new doctor & she was very thorough (4 hr appts—including NEW xrays/getting orthotics/another injection/AND finding out she also has “knock knees” & in-toeing bad AND flat feet but the whole time there we had to wait to see Dr/etc maybe only 20 mins as rest of time we were doing something with Dr/nurse/etc).

Well the new doctor set up surgery for her Derotation of femur & tibia on right for Apr 14th as she said her HD was mild & hopefully with orthotics AND this surgery pain would go away. Our doctor knew we were there so she called to see how Halo’s pain was in hip & I told her it was still bad. So put her on Naproxyn (well that for some reason gave her headaches/migraines) so the “best” they could do was have her take Tylenol AND Ibuprofen (which by Mar she was taking the max of them which was 4000 mg Tylenol AND 1600 mg of Ibuprofen A DAY) and also was starting to miss ALOT OF SCHOOL cause OF PAIN was getting worse! Well make story not so much longer—her surgery was cancelled cause in Feb 2015 she had developed tingling/numbness in her right leg/foot and her pain was up to like 6-10/10 on most days (so missing ALOT OF SCHOOL)—took her to local ER & even her Pediatrician til FINALLY in like beginning of Mar (I believe) hospital said let’s get her in to get a EEG (or whatever it is to check nerves) to make sure no nerve damage before we can set up surgery again.

Well had it done & NO nerve damage. So on Mar 18th we went to Neurologist just to further tell us no nerve damage but still don’t know why numbness/tingling as everything is ok so I just jokingly said well it was prob the pain saying hey u been in so much lately I will just give u more “symptoms” and the Neurologist said yea probably (I laughed in her face cause I could not believe that she agreed with me). The doc had viewed her new/old xrays/mri’s/ct scan (other hospital ordered special scans be done back in like Jan & it was done somewhere else but I am sure he seen them also)and her records prior to coming in to talk to us so he said yes she is a great candidate for a PAO and I can do it on May 14 and he took her off crutches she was on since Oct & put her in wheelchair for NO weight bearing just around home very minimum.

She had missed over 100 days of school cause of pain. She had her pre-op done on 13 May & had PAO on 14 May starting at about 8:38 AM (had to go to a “pre-op” room to put IV in where I got to go back with her then they took her to a “block” area where I couldn’t go as they put in the epidural then take her off to surgery so I went back to waiting room to wait with her dad. It was about a 2 hrs surgery then had to wait til she was in recovery room where I joined her but found out she had to be transferred to a different hospital (as she was underweight of less than 100 & they were not set up I guess for peds under 115 lbs) so they made an exception for her dad to come to recovery also when I told them he would be going in ambulance with her & I would get her things in car & transfer over there—they had to wait till like 1:25 pm when they got call there was a room available for her then had to call for ambulance and then wait til they were available not on calls as calls took precedence over transfers so by 3 pm she got there (thought having her dad there would help her but she had an anxiety attack & thankfully he was in front and EMT was in back with her).

She had to stay in hospital 2 extra days as she wasn’t keeping food/water down they FINALLY got the right pain meds for her (had to go thru diff one’s till they found correct 1–Oxycodone) even if they had her on a med schedule to try stay ahead of pain before they figured which 1 she had 2 horrible painful days after surgery (15 & 16) but day/night of surgery she was great (she had told us like on the 13th “it seems like I am in a dream I can not believe this is going to happen tomorrow” and when we were in the room having IV put in she said “mommy am I dreaming or is this happening” & I told her “no dreams it is real”–in recovery she even asked me “mommy am I dreaming that I had surgery”” I said no sweetheart you had it” and she said “it don’t feel like it cause there is no pain”) She couldn’t even believe it happened the rest of the day as no pain. On 15th & 16th we could not take it seeing her in that pain she was in till they figured out the right meds & dose–we were relieved as she was also.

Since the 17th in hospital till 19th they kept her pain free as she was on a schedule to stay ahead of pain. When we were getting discharged they gave her some Tylenol AND Oxycodone for the 2 hr ride home. Since we got home the 19th we gave her Oxy & Tylenol before bed as pain cause of getting in & out of car & in house & all but also in hopes she could sleep better. She stayed upstairs sleeping in recliner at nights & during days napping. But since the 19th she has had to take MAYBE 6 Tylenol (1000 mg) & MAYBE 6 Oxycodone—which is not bad at all. But since about 26th I think she decided that she wanted to be in her own room AND sleep in her bed as she hadn’t done in about 2 weeks so she has been going down 12 stairs at night & up 12 in mornings with us going down with her to be there/help her get down & get into bed & all as still in crutches & no weight bearing/etc & in morning going down to get her up from bed & up stairs/etc.

She still in ways thinks its a dream as no pain. She has gone through ALOT with this prior to surgery cause of pain then her school was terrible against her & us (we tried to work with them but they didn’t seem to want to work with us). Thankfully she did not have to go back to school when she got home as our doctor said no school till 5 Jun (her school had only till 2 Jun) AND she was to have a tutor in home 5 days a week for 1 hr a day (as he thought she would have to take the narcotics more than she did I guess he was basing it on pre-op pain) well school got a tutor in for 6 hrs for 6 days and then when I asked to extend it so she could catch up more they said no we just did it for those days for her cause we did not have to—I said whatever.  So now school is over for Summer she is also in better spirits cause no worrying about them (I told her do NOT worry about school during your recovery/Summer). WE ARE SO HAPPY TO HAVE OUR DAUGHTER BACK—I say that cause the pain she had to endure all them months she “was not herself” so down/upset/in pain/crying/etc. It is so good to FINALLY NOT SEE HER IN PAIN and in such a better mood & all! If any questions just ask me I will try answer them!