Coming off Crutches

So I have been hesitant to write an update these past few weeks because coming off crutches for me has been extremely difficult.  I have never had such issues getting off crutches with all of my scopes, but I have to keep reminding myself that this surgery is nothing like a scope surgery.  I have yet to be able to see my surgeon for a follow up because of life events as well as the weather (norther Michigan in the winter, not fun).  But hopefully in April that will happen.  I thought that my strength would easily come back to my hip within a week or so of walking with just one crutch, but it has taken about 3 weeks of walking with one crutch to finally get to a point where I can walk without any aid around the house.  Outside of the house I am still using one crutch though.  It does not help that with spring on its way, everything outside is a sheet of ice.  I cannot wait for summer though.  Swimming and walking I think will help improve my overall demeanor and spirits.

I am still participating in PT, although I am only doing about 2 times a week.  Its been very helpful though in making me feel like I can start doing things.  I was able to pick up our apartment and do some household chores that I had not previously been able to, so there is definitely improvement in my everyday life.  I still am struggling with pain and limited ROM though.  I get intense pain very deep in my glutes as well as my knee, which constantly feels swollen and stiff with acute pain that wakes me up most nights.  I also have intense hip flexor pain and still cannot lift my leg up without intense pain in the front of my hip.  The combination of these things has been very frustrating for me and I feel like its holding be back from a 'normal' recovery.  I still have the lingering issue of my femoral anteversion which I think is playing a large part in my knee pain and hip flexor pain.  I expect at my next appointment for Dr. Buly to talk about femoral osteotomy surgery, which is a big bummer considering this was suppose to be the end of the right hip surgeries.  But I also knew that this was a possibility, so I just have to keep moving forward.

The nice part about moving back "home" to be with family is that my husband and I have a lot of support to help me get to and from PT, doctor appointments and also help provide me with some entertainment at times.  On Friday I got to attend a talent show that my younger sisters school was hosting and tomorrow is my Grandpa's birthday so we are all getting together for dinner.  I don't think that I could have done this surgery without having moved back home, as hard as it was, I am very thankful for all of the help and support that me and my husband have here.

So I guess overall, not much of an update.  Things keep plugging along.  It seems that within the next week or so I should be able to get off crutches completely, which its certainly about time, seeing as this week I am 4 and a half months post op!!  I thought that at this point I would be much further along in my recovery, but all I can do is take things one day at a time and hope that spring is right around the corner :)

6 Weeks post op PAO

Hey Everyone, so this past Thursday I was 6 weeks post op.  It seems crazy that its been that long, but here was are!  Excuse me if this post is cynical, after 4 right hip surgeries and 6 weeks on crutches. my ability to stay positive all the time is waning a bit.  So, not much has changed in the past 2 weeks, I still have a good amount of pain, still taking pain meds regularly.  I got to stop taking my asprin for blood clots though, so thats good, one less thing to take.  I had an unplanned hiatus from PT because of the holidays and one day I was not feeling well, so it was about 2 weeks between appointments.  On Friday though I had a reevaluation and it made me realize that there are some things that have gotten a lot better since surgery.  On Tuesday I get to start in the pool. which I am super excited about!  I think that it will really help me with my confidence about getting off crutches.  I am not suppose to get off crutches until I am cleared by x-ray, which should happen later this week.  I am nervous about it though cause most of the time my leg does not feel ready to take on more weight as of yet, so I guess we will see what the xray says.  This is all so different than my scopes, but because bones were broken this time, obviously we have to make sure they are healed before adding weight.  It seems like by 12 weeks most people are off crutches so I am about halfway there!!  As much as I want to just be done with the crutches,. I know that my hip is just not ready yet.  I have been able to lay on my operated side again, which feels soooo good.  I am a side sleeper so this has made my nights much more bearable.

My left hip has been acting up more and more though which is frustrating.  I know that eventually I will need surgery to fix the impingement and labral tear, but its so hard to imagine needing more surgery at this point.  My other fear though it that this PAO has opened up the proverbial 'can of worms' regarding my malalignment issues and that eventually I will need a femoral osteotomy and a possible tibial osteotomy before things will be correct.  But at the same time, worrying about these things will do no good, so I just keep trying to concentrate on whats in front of me.  I hope that this PAO at least gives me the opportunity to start working again.  I miss it greatly.

So later this week I will know a little more about my weight bearing status.  On the personal front, my husband and I have moved into our new apartment in our home town (about 8 hours from where we were living).  I am enjoying having a smaller space to get around and clean!  We went from a 3 bedroom house to a 2 bedroom apartment!  As much as I loved our house up north, trying to clean and do housework in such a large place was just awful on my hips.  Its odd how these hips have effected so much of my life.  I am enjoying being close to my family though (yet not living with them haha).

4 weeks post op RPAO!

Well, today is 4 weeks post op.  I kind of thought that at this point I would be further along in my healing process I guess.  Compared to my scope around this point in time, I am still getting a lot of pain, which is frustrating.  I have pain when standing and walking almost all of the time.  Usually in my hip flexors, groin and deep in my glutes.  I still have at least another 2 weeks on crutches at 20% weight bearing and then most likely I can work on weaning off of them.  I have been doing PT 2-3 times a week and thats been going well.  I can definitely see progress, its just all a lot slower than I anticipated.

And of course, because my life is not interesting enough with surgery, finally there has been movement on the adoption of the 3 foster kids my parents have.  The adoption petition was filed last week and is set for finalization in Feb.  Our family is beyond elated and we could not have asked for a better Christmas present!  As well, my husband and I are moving back to our home town.  So in the next few week and months we have a lot of personal things happening which are exciting, not to mention the prospect of getting of crutches soon!!

Two Weeks post op

Hey Everyone!

So in a few hours I will be 2 weeks post op.  It seems odd that I am so far out from surgery in some ways as I am still stiff and sore, but in other ways I see how much I have improved.  The two days I was in the hospital I could barley push myself upright!  Now, I move in and out of bed pretty well, I can lay on my non-operated side for a bit as well as my stomach.  It feels sooo good to be able to move around a little bit.  I had my first physical therapy appointment yesterday and that went well.  The PT just covered basic stuff like ROM, health questions, etc. and then gave me some isometric exercises to do.

Other than PT, I do not do much.  I do the basic after surgery, at home alone, protocol, which is watching Friends, Everybody Loves Raymond (who does not love the classic sitcoms!), as well as some reading and keeping people updated on my surgery.  So far the pain is not too bad, although the last day or so has been worse than normal, but even these 'bad' times are manageable.  I got my surgery report and I got 5 screws put in.  Dr. Buly was able to change my anterior central edge (CE) angle from 11 degrees (normal is 25-40 degrees) to 37 degrees!  I was lacking a LOT of anterior coverage, so hopefully thats all fixed now.  Other than that, the surgery report did not say much other than they had a hard time getting my socket loose to move it, but after some extensive cutting, it came loose.

So I just wanted to do a quick update.  Things are going well and pain is well controlled.  I should be getting a CD with my images from the hospital soon and once I do I will post before and after pictures of my hips.  Hope everyone else is pain free and enjoying some nice winter weather (ie, snow!).

Edit:
So yesterday I got my CD from HSS with my images, so here is my post op x-ray

The day before surgery with Dr. Buly at the Hospital for Special Surgery

Hello Everyone!!

So tomorrow is the day, I will go under the knife for my first PAO and my 4th right hip surgery.  I am still in shock with how I got here, it all kind of seems like a bad dream, but in the end I hope that my long hip ordeal can provide a learning experience for anyone else suffering with hip pain.

Yesterday I had my pre-op appointments which were no big deal.  Basically they went over all the usual stuff with me (height, weight, blood pressure, etc.) and then I had to get some blood drawn.  I was worried that my surgery might be cancelled again due to high CRP and Sed. rates but the pre-op doctor that I saw said that my numbers from the end of Oct. were no big deal and he was not concerned so that made me feel better.  The only think different this time from my other pre-op's was that they did an EKG which I thought was pretty neat.  I guess it did not show anything bad cause I got my surgery time.....8:30 tomorrow morning (Thursday, Nov. 21st) and I have to be to the hospital at 5:30 am!  I am glad that its early though cause otherwise I would be up all morning just worrying about surgery.

Today my husband and my mom and I, we went on a boat tour of the statue of Liberty and lower Manhatten.  It was really amazing to see all these sights!  Its stunning the amount of people and the history that is here!  We had a great time, but its about 2 in the afternoon and my hip is pretty much done with sight seeing and ready for a rest.

So, thats the story so far.  New York is amazing and so far our trip has been great!  I hope surgery tomorrow follows that trend as well.  I will update my blog as soon as I get a chance after surgery.  Until then, safe hip travels everyone!

When life gives you lemons...

So these last few weeks have been really difficult.  It was such a shock hearing that a need the ultimate hip surgery to fix the real problem with my hips.  I feel betrayed by the medical community and frustrated with the surgeons I had seen.  For so long I was told that nothing was wrong.  For example, the first surgeon that I saw in Marshfield, WI after I got my diagnosis told me that since I had good range of motion still that I did not have FAI and that if I continued to have pain that I should go back to my general practitioner.  Well of course I was going to continue to have pain, I had already been in pain for 5 years!  The blatant dismissal without any further investigation was heart breaking for me at the time.  I did not give up on my hip though and pursued a second opinion with the surgeon who would eventually do my first scope.

Looking back at all the surgeons I saw, all the PT that I did, and all the general practitioners that I went through, all the while hoping that maybe, just maybe, this surgeon or doctor or PT would make it all better, once and for all.  Because of the lack luster care from the medical community, my distrust in doctors has gown exponentially.  I always want second (or third, or fourth) opinions about things.  I do a ton of research about everything now before I trust anything a doctor says to me, which really goes against everything I was taught growing up.  I was taught that the doctor knew how to fix you when you were sick and that was the end of it.  There was no questioning him/her, it just was.  Which is why I think that this was all so hard from the beginning.  To question that a surgeon could be wrong was just not something that I had heard of, but it is now something that is second nature to me.  Which, when you think about it, is a great thing.  Critical thinking should always be used in all things, but to have to question someone who is suppose to make you feel better, who is suppose to be on your side, seems maddening.  Add to that the hundreds of dollars you get the privileged to pay for their 'opinion' and I sometimes feel insane!  If I wanted to discuss opinions then I would just have a heated conversation with certain family members and that's free.  But to pay for the privileged of someone to tell you that your wrong about your pain and discomfort seems barbaric in our modern society.  But I shall digress from this conversation seeing as I could go on forever about the American medical system and the insanity of it all.

What I really wanted to write about tonight (or early this morning) was how much I have learned and how I want to share what I have learned with everyone!  I never want someone to suffer like I have.  I never want someone to think that they are crazy because some untrained doctor or radiologist cannot find the correct diagnosis for their pain.  In the past week I have been sharing my story high and low, in all corners of the internet trying to get the word out about FAI, labral tears, femoral anteversion, etc.  I see posts on Reddit about groin pain and how they are told is a hernia or a strained muscle and I can only shake my head because I know that at least 10 of those 20 posts I saw are going to be misdiagnosed and most likely have either FAI or labral tears but they will suffer in pain until someone somewhere down the line makes a correct diagnosis.

What happened to me should have never of happened.  Doctors, PT, nurses, etc all have a duty to patients to not give up on them until finding out the true reasons for someones pain.  For $500 for an initial consultation with a surgeon, patients deserve more than 'I do not know, see someone else' and pass the buck onto a different doctor.  Its maddening!  And its awful that its allowed.  Everyday people are passed off and shoved away when answers are not easy to find.  Is that was med. school is teaching students, how to pass the buck without follow up?!  I find this unacceptable.

But, given my situation I want to make the proverbial lemonade out of lemons.  I want to share my story in as many places as possible, with as many people as possible to get the word out about FAI, labral tears and how finding a well educated and trained surgeon is the single most important thing you can do for your care.  It does not seem like a big deal when you are looking at your first scope because if your are anything like me, you'll think 'I am not special, I do not need a "top" surgeon to fix me, I just need someone who is a surgeon', but I beg of you, please do not fall into this trap.  While I did not have any glaringly obvious done deformities, like dysplasia, I have a ton of rotational issues, none of which were found by my first two surgeons because a rotational study was not done.  Imagine how much pain and money and heartache would have been saved for me if my first surgeon had the training and forethought to order a rotational MRI or a CT scan?  I even had family members encouraging me to see the hometown surgeon because "You don't need the best, you just need someone who can get the job done".  Oh how wrong they were.  I think that hip surgery is often mistaken for knee surgery, especially scopes, in the sense that its easy, its done routinely, and often has very little complications.  But the hip is a very DEEP and hard to reach joint, something that the knee is not.  Thus access is tricky and limited.

So to wrap up this late night rant, PLEASE go to the best surgeon you can afford.  Find a surgeon who has trained at top hospitals like the Hospital for Special Surgery, or who has done a fellowship with top scope surgeons like Dr. Philippon, Dr. Kelly, and Dr. Byrd.  ALWAYS ask for a rotational study to be done either through an MRI or a CT scan (this is more accurate).  Then get a second opinion and a third opinion.  Many surgeons like Philippon and Kelly do free film reviews, take advantage of this!  Send in your films.  And last, but not least, please educate yourself on these things.  Know what would make you a good scope candidate and what would not, know what your angles are (alpha angle, CE angle, version angles are all important) and if your surgeon does not know, run for the hills, run as far away from that surgeon as possible!

So I will leave you all with that note.  I will be spending a lot of time on the internet these next few weeks, trying to spread my story far and wide so that I can hopefully help just one person avoid the heartache and pain that I have endured due to the medical communities error.  If your reading this, please share with anyone you might know suffering from hip/knee/lower back pain.  You may just save their sanity!  Thanks for reading!

Consultation with Dr. Buly at HSS

Its been a while again since I have updated my blog because I was waiting until after my appointment at HSS with Dr. Buly which was a week ago today.  I consulted with Dr. Buly originally for my femoral anteversion which was found on my pre-op MRI in Dec. of last year.  I was told that it may or may not cause continued issues, that only time would tell.  Well, before I had surgery in Jan. I told myself that I would not wait longer than 6 months to get this checked out.  Dr. Philippons team wanted me to wait a year before consulting with someone, but I had already waiting long enough for answers, I was unwilling to accept waiting any longer than 6 months from surgery.  So when I was still in some pain in August, I booked an appointment with Dr. Buly.

The few weeks leading up to my appointment with Dr. Buly I was not in a lot of pain and even contemplated cancelling, but I didn't as my mom had already set up time to come with me, etc. so I kept my appointment.  My mom and I decided to drive out to NY seeing at plane tickets were almost $500 per person.  Add that too a cost of cab fares and hotels and for a 2 night stay in NY city it would have cost about $2,000.  So driving and staying north of the city at a campground was the cheapest.  It was a beautiful drive out to NY and the campground that we stayed at was perfect.  Since we are not city people, it was nice to be able to leave the city after a busy and exhausting day at the hospital.  So we left Traverse City (where my parents live) and drove out to NY on a Sunday as my appointment was on Monday.  It was a beautiful drive and PA is so pretty!  We got to NY around 6PM and had just enough daylight to set up the tent and then fall asleep.

We left for the city pretty early the next morning even though my appointment was not until the afternoon so that we could look around the city a little.  So driving into the city was not nearly as bad as I thought that it was going to be and we got lucky because the president was at the UN, only about 10 blocks away, but FDR drive was not shut down, so we were not effected at all.  We got a little lost coming into the city, but the GPS put us back on track and we got to the hospital without a problem.  After parking we walked around a little through some of the neighborhoods and saw a cool collection of Buddist art at Sotheby's, even though scary looking men in suites follow you around.

After looking around for a bit, my hips were getting tired so we ended up back at the hospital early so I just got checked into x-ray and had those done as well as my CT scan.  After that we went to Dr. Buly's office to wait for my appointment.  Dr. Buly and his assistant Elaine are so nice and personable, it was unreal.  There were no fellows, or nurses, or other staff, it was just Dr. Buly and Elaine, it was so nice to spend so much time with the actual surgeon!  Dr. Buly, after looking at my x-ray and CT images, recommended a PAO (periacetabular osteotomy) and an FO (femoral osteotomy).  I was really shocked by this recommendation because never before had hip dysplasia been mentioned to me, which is usually what PAO are used to fix.  But I guess after all these surgeries, the rim trimmings done had actually made my hip slightly dysplasic, which when combined with my femoral anteversion means that there is not enough acetabulum to cover the top of the femur head.  Dr. Buly then called his colleague, Dr. Helfet, into the exam room so that he could look at my images and examine me to get his opinion.  He agreed that a combination PAO and FO would be the best course of action.  Dr. Buly also wanted me to consult with Dr. Sink to get his opinion about the PAO.  So we stayed in NY an extra day so that we could see Dr. Sink on Tuesday.  Dr. Sink basically agreed with Dr. Buly and Dr. Helfet.

Today I got the results of my MRI and CT scan as well, which shows excessive femoral anteversion on both the left and the right, as well as excessive tibial torsion externally.  The combination of these is known as miserable malalignment syndrome.  I also have a labral tear and FAI in my left hip with will have to be taken care of at some point.  My MRI showed a lot of cartilage wear and tear on the front of both hips, although the right hip is so much worse.  I was told that if I do not go through with surgery for the PAO and FO I will most likely be looking at a total hip replacement in 5 years.

So, now that this post is getting really long, I am now in the process of booking my first surgery with Dr. Buly for the PAO and FO.  I am really just super disappointed and scared.  3 years ago when I had my first scope, this was never suppose to be an issue, but here we are, staring down the barrel of at least 3 more surgeries to fix all of these issues.  I am still in shock I think, but time will help me get over it I am sure.  Anyways, no good news this time, but I will keep everyone updated as surgery gets closer!