Jan. 24/'11 HR in Ontario

[LMS]

Hi everyone, another lurker here    I wasn't sure about posting since so many people here have already written about their stories & fears that are the same as mine & have had good good advice given to them.

A month ago I finally received "the phone call" from my surgeon's office (after a 2 yr wait from being put on the list) asking if I still wanted the surgery.  I was very confused & scared, & through doing a search on any further documentation on my surgeon, I stumbled across here.  My first tentative post ended up being far too long, so I'm giving it another try.

I was finally diagnosed with mild hip dysplasia, cyst in acetabulum & OA in the left hip at age 38 (imagine, since the age of 14, going from every imaginable specialist trying to figure out the cause of unpredictable back pain, cold, numb legs & sciatica.  Everyone missed the dysplasia & would ignore the clicking hip & sore SI joint).  After all these years of being told to stop riding & all activities, I finally gave in for the good of the hip & a yr later (Nov. 19, 2007) had a scope done (debridment & microperf).

One yr post op, I was gaining weight & was not progressing as well as hoped but once I stopped trying to reintegrate my past activities (meaning giving up many things such as housework, any physical activities, physio & teaching at the therapeutic riding school), that's when I was able to be almost pain free.  When I got the phone call 4 weeks ago, I'd noticed that my good hip was getting quite painful so decided to stop protecting my scoped hip to see if the surgery had been successful by doing the activities I used to do & I also started the physio again.  As of yesterday, the pain is finally back in the left hip & I'm still not back up to the activity level I was at when I was asked to quit it all 4yrs ago.

Because of my worries & confusion, I have an appointment with the surgeon this Tuesday coming.  I have to admit, I am quite concerned about making the right decision.  Now is not the best time to have this surgery, my job is very demanding, OH & I are self employed & this will mean my department will have to shut down & we're right in the middle of restoring 2 century old houses; one would need to be done by mid Jan. (before surgery date, since we live in it) & the other by June '11.  And we are moving our business home.  

Thanks for reading
Lynne

[jjmclain]

I don't think there is ever a perfect time for surgery...however, the only advice I can give is not to wait too long! The more your hip deteriorates, the less chance you will have of being able to get a HR, and instead might be looking at a THR. My hip problems only started 3 years ago after a bike crash at Ironman in Hawaii and I had been going to doctors for 3 years for a solution to my ever increasing hip pain. I developed arthritis from the crash and lost ROM immediately which got progressively worse. I feel I wasted 3 years of my life and wish I had known sooner about this surgery. I had a LBHR 3 weeks ago and look forward to getting back to competing again and not being miserable and being able to enjoy life with my family. Just some things to think about. I had some cysts and luckily my surgeon was able to take care of them, including one very large one. If I had waited to much longer, that might not have been the case.

Good Luck in making your decision.
June

[LMS]

I'm wondering if an elective surgery like this is scheduled during the cold season (Nov-March) because it's easier to be inside & be looked after so that when we progress, the nice weather & temps help as a boost.

Regardless, it's a difficult decision to make when the pain is easily controlled by choice (activity & its level), ibuprophen & rest.  But these past 4 weeks made me realize the thin line I was on that mediated how little I needed to cross over.  All I did was add simple core physio, stop all movement restriction and well... just basically live like a normal person & in less than 4 weeks, the pain returned.  And that wasn't even being close to the low level of activity I used to partake on a daily basis.

It seems to be more of a muscle/inflammation pain though, is that enough to warrant going ahead with a resurface?  I always thought that the bone had to be more involved in order to make this decision?  Or is it like a domino effect, the muscle & inflammation pain is a precursor & once the bone is involved, it's basically beyond the point of a resurface?

I'm asking this because my OH asked if it was a case of "hitting a mosquito with a sledgehammer".  And that made me think of what if he's right, how does the surgeon know that my hip could wait a little longer?  Do they base this with an x-ray or once he's in there & has a first hand look at the joint?

I remember him saying (at the scope 3 yrs ago) that he'd make his decision regarding addressing the cyst in the acetabulum once he'd have a good look at it & when I asked him about it post surgery, he had chosen not to touch it.

[LMS]

I've just received my first package from my surgeon's office & was quite surprised to see a post op. instruction sheet for a THR.  Are they basically the same as for a HR?  I found some of the items are quite different from what I've read on here & some were also non present, so I've put together a list of questions to ask him tomorrow.

I thought I should mention that my surgeon is Dr. Beaulé & it was a bit reassuring to see that he's been mentioned in the main site as well as has answered one of the questions in the FAQ section.

In this first package is a small pre-admission booklet, it had the surgery date & location but not the pre-admin date.  I have to call Dr. Beaulé's office to let his receptionist (I'm assuming that's who I was previously speaking to) know how the appointment went, I'll ask her about the date.  There is also a bone donation letter from the Bone Bank, consent form & a questionnaire.  And finally another letter/consent form explaining the study that Dr. B is the leading investigator of & a questionnaire.  I'll bring it with me tomorrow.  I also will have to ask him about the previous study I had consented to regarding the scope I had 3 yrs ago; I only received one questionnaire at the 1 yr post op.

I think maybe I should fill you in with the background that led up to the upcoming surgery in 7 weeks' time.

P.S. I changed the title, noticed I had the wrong date on it

[Pat Walter]

Some of the post op recovery for a THR and HR are similar.  A lot depends on the surgeon.  My surgeon allows his patients to be on one crutch for one hip replacement normally.  He allows 100% weight bearing, but that is not possible in the begining.  He allows you off your crutch when you don't limp which for me was about 3-4 weeks.  Other surgeons have other protocols and are very conservative.  It would never hurt to follow a THR recovery protocol with a resurfacing as far as remember.  Usually the resurfacing patient is more active sooner and has no restrictions after about 4-6 weeks with the 90degree rule.  The aspect of having your body sliced open and your joint repaired is serious surgery in both cases.  I would not let that worry you.

Be sure to ask questions.  That is always best.  I don't think being a part of a study is bad.  I was one for infection.  The did not contact me much or ask many questions.  Just depends on the study and doctor.

Good Luck.

Pat

[littleb]

When I went to my pre surgical meeting everything I was given was THR aimed with only brief mentions of RS and when I signed off on my surgery I actually signed off for a THR. I was told that the hospital and doctor have to be covered incase the resurf isn't possible once they start the surgery.

[jjmclain]

As Pat said, a lot of the protocols are the same. I signed off for a BHR, with an added contingency that it could end up being a THR. Most HR surgeons do that I think.

[LMS]

Just got back from my appointment... it did not go at all the way I thought it would.  I had my list of questions all ready & we were both quite surprised by the x-ray; everything looked incredibly good!  The joint was a very nice uniform shape & the OA looked like it has slowed down.  Dr. Beaulé seemed quite surprised when he compared the 1yr post op image with this 3 yr post op.  He cancelled the resurface surgery right there.

I mentioned about the pain in the "good" hip & it looks like there's some degeneration in there so he's ordering an MRI & we'll discuss both hips then. (Since there is still pain in the left hip)

Lynne

[LMS]

Feeling discouraged now for the past week.  I called the office as I had a couple of questions that had been left unanswered at the appointment.  I was told that my left hip (the one that was supposed to get the HR) will not be investigated any further because of the surgery cancellation.  The wait time for the MRI for the right hip is 5 months.  And the moment that I had agreed for the HR 2 yrs ago (at my 1yr scope post op), it canceled my participation in the scope study which explains why I didn't get a questionnaire at the 2 yr post op (last year).

I understand the reasoning for not doing this surgery but it's such a mental let down to have looked forward to finally have relief after 27yrs of pain.  The way I feel, the way the hip feels does not correspond with the way that x-ray looked.

[jjmclain]

Will your insurance allow a second opinion? Can you get your records and x-rays to send to another doctor?

[Pat Walter]

Lynne

Have you asked about a cortisone shot into the hip capsule to stop pain or for pain meds?  You can get a free consultation from Dr. De Smet of Belgium and Dr. Bose of India if you send them emails with a copy of your x-rays in a digital format as a .jpg    It might be nice to know what other surgeons think.  Dr. Antiniou is also one of the best in Canada.  Can you get a second opinon with him?  I don't know a lot about your health system.

Pat

[LMS]

Hi guys,
Merry Christmas & Happy New Year!

Sorry haven't responded, it's a crazy time of the year & also the only time we can actually take a week off work (all our suppliers are closed, so we might as well too) & catch up on renos.  That left hip has been feeling all the strain I tell you!

I have medical provincial insurance only (my private insurance is only if something new happens medically, so after the fact to cover for loss of work.  So not for this instance), so yes it would cover a second opinion within province only & that's a long process to begin with.  I don't have the resources to pay privatly or out of country.  I honestly don't know how it works for out of province.

I've been trying to get a copy of my x-rays (would be a bonus if I could get a copy of the MRI or records) but I'm not getting any reply back.  If it's for my own records, I have to pay to get copies.  To have it sent to another medical professional it's free but not in the same format & goes straight to them.

No I haven't asked about cortisone shots & most probably won't.  I've had a discussion about it for my elbow 4 yrs ago with my GP & also I've seen it's effect on a few close people & I'd rather put up with the pain I currently have than to get injected.  Right now high doses of tylenol & advil when it aches too much along with rest & time seem to work.  I'm just putting up with it for the time being. 

I would love to know what other surgeons think but I think right now I still need to step back from this roller coaster & not think about it.  I also don't want to seem like a pest to these doctors.  I'm still feeling a bit "numb" about the mental let down.

[LMS]

Hi guys, it's been a while! (again)


I never did get the MRI that was ordered what, 5 years ago now?  The hospital, unfortunately, botched that right up.  Received 3 phone calls many months later, by three different people (from same department in hospital) asking if I still wanted the MRI & when I replied yes, they'd say "We'll call you right back, we need..."  First person "Oh you have an IUD, I'll call back", 2nd person (asking all the same questions) "Oh, you have an IUD, I'll call back", and third person "OK let's go over the paperwork before I schedule you a date... oh, I'm missing some info.  Paperwork is not all here... I'll call you back"!


Ugh... after me calling them back & not getting anywhere, I gave up!


I had to quit my teaching job because I couldn't give a signed document by my surgeon or GP that my hip would not be an issue.  I had to stop doing many many things and for all of you who are also active people, you can understand how difficult this was to accept.


As long as I drastically restricted my activities & basically became a couch potato, rested after the moment I felt the hip/glute area tighten up (as well as take OTC extra strength med combos, get deep tissue massages & hot soothing baths), I could recuperate within 24 hrs.


This past year has been the worst though since 2011.  The good hip now clicks & spasms where you end up bent over like an old geriatric & the bad hip... well now I understand the slight difference in pain between inflammation & bone pain.  I asked my GP I wanted to see Dr. Beaulé but I was told to up my meds, alter lifestyle & maybe cortisone shots.  I felt so deflated & just kept asking for a referral.


My GP retired & in came the replacement doc... she was ... well I knew we were not going to get along!  I did not want to go back to the type of doctor (the "let's monitor & see" approach") that I had before 2006.  I hightailed it out of there & found a wonderful new doctor who listened & explained her approach to why she recommended what she did.  I agreed to compromise.  If the x-ray showed cortisone would benefit, then I would go ahead with it.  The x-ray came back & it was bone on bone!  Right there & then she ordered an MRI of both hips (to expedite I had to go to a different city), orbital x-ray (I cut metal) & typed the requisition to Dr. Beaulé right in front of me & sent everything off before I got home!


I hand delivered the CD of the MRI to my GP today (Dr. Beaulé's office was asking for it. Once they have it, they are calling me for an appointment) & I see my GP tomorrow morning.


Many others will relate, your quality of life becomes nil in order to keep the pain under control.  And even then, standing, sitting, lying down hurts.  I can't put on my shoe by myself, can't be intimate, can't play with my horses or my dog to the level I need to be.  You can't sit down or get back up without looking like a 100 yr old sloth contortionist.  You feel terrible having to ask for narcotics because taking high doses of OTC acetaminophen, ibuprophen or naproxen doesn't quite work as well without that like opioid kick. 


I'm also giving in to husband's & son's request & asking for a temp. handicap parking permit tomorrow (in my mind, there are people who need it more than me but they say no, I need it).  I still refuse to use a wheelchair though have my cane handy when I can't even move from where I'm standing.  Pride I guess, I've been forced to stop doing so many things in order to function enough. (have gained 30lbs because of it all)  You learn to hide it all until it hits the 10/10 mark & then people look at you in utter shock when they see what you are actually dealing with.  And they start asking all these questions.


Mind you, my husband & sons know full well the extent of it all.  I sound like a person with tourettes with all the screaming bursts of yelps & choice words when that lightning bolt pain sears through.  They shout "You ok?", I shout back "Hip", they respond back "Need help?", which means they sometimes need to come rescue me & save me from where I'm stuck.  It's scary when it happens in the stairwell.


Anyhoo... wow, 5 years worth on this post... cookies & drinks for everyone that's read through it all.   

[JHippy]

So you're on your way then? Fantastic. What a frustrating experience you've been through.

[blinky]

Good luck! Look forward to hearing about your new life.

[LMS]

Thank you!  Yep, on my way!   


It's bittersweet though when you think about it (and this is all to be taken light heartedly while understanding it all)...  I'm in pain, fix me, make the pain stop now.  You're not ready yet... grumbles.  Finally time comes, ok life will still be on hold for another year post op.  Ugh... another year!  But I wanna do things NOWWWWWWW!


Lol.  Ah well, might as well sit back & enjoy the ride now. 


The horses will just have to be hay burners for yet another year.  (I can hear my husband's eyes rolling!)


On a serious note though, there is a lot to do before then.  Well that is if I am going to be a candidate.  My BP is so high right now that my GP mentioned (today when I asked) that surgery will probably not happen until it stabilizes back down closer to normal.  She's doing her best to find out why it's up & how we can fix it.


Darn this getting old bit!


And it's a catch 22, hip pain = raises BP, high doses of naproxen to lower hip pain = raises BP.  *Le Sigh.


I am just itching to get back to how things were without the pain & wrestling.... and not look like I am a mixture of a cowboy that's ridden all day & Dr. Frankensteins lab helper, shuffling/hobbling about, while doing them.  Lol!

[Kingrob]

My blood pressure was running high for years. It got to the point where I was borderline going on pills. I never had a problem with my blood pressure until I hurt my hip and could not run anymore. I always thought it was the fact that I couldn't run anymore that caused the high blood pressure. I worked hard on the stationary bike but could only keep just below the point they were going to put me on pills.

I was wrong about it being the running - it was my weight. I am 6' 1" and weighed 220LBS when I got scheduled for my surgery. I was a little concerned that my high blood pressure could be a problem. I had always planned on losing weight before the surgery and did not realize that this was the solution for the high blood pressure. I weighed in at 203LBS on my surgery date and my blood pressure was normal. I had been going to CVS every day checking my blood pressure and new it would be good. I retired from the USAF in 2005 and weighed 200LBS and never had a problem with high blood pressure. I did not think 15-20 LBS could make that much of a difference. I just weighed myself today and I am at what I feel is my ideal weight of 195LBS and my blood pressure is great.

[LMS]

Yay, I have an appointment with the surgeon for April 8th.

[LMS]

Well my BP is finally back in the normal range but it meant having nasty side effects still keeping me at risk of a stroke (went too low too quickly). I've switched meds & we're monitoring to see if it'll help.  And not only that, because of the increased hip pain, I was doing what I was told to do & self medicate with OTC pain killers (approved & monitored with my doc & pharmacist) & wouldn't you know it, my body finally decided that it had had enough of this... cue pancreatitis like symptoms, sharp gut pain, nausea & vomiting.  I had to stop all pain meds (I was now on Tylenol 3 & Naproxen on the really bad days).


Come onnnnn 3 weeks... 3 more weeks to wait & see what the doc says...


My life is almost at a standstill now, activities hurt, standing hurts, sitting hurts, lying down hurts, can't play with my dog (husky), can't play with my horses, can't "play" with my husband, can't take a bath properly, can't put pants, socks or shoes on, can't bend down to pick up something... can't can't can't... I'm so sick of saying can't! I have to depend on my boys (thank goodness they still live at home!) & my husband for everything.   


Sorry for the rant, I'm just frustrated.   

[blinky]

Aaargh! Hang in there. The waiting is the hardest part.


I trained for the surgery to help pass the time. (But then some of my activities were taken away as I got worse and worse, which was disappointing.)


This is three weeks for the surgery or for the consult to see if you can have the surgery?