Wednesday, November 5, 2014
I re-tore my labrum in February 2014. Dr. P. Decided that a scope was my best chance. He found a significant amount of scar tissue, to the point he couldn't distinguish between the internal parts of my hip joint. He repaired the labrum. Removed part of the hip capsule and part of the synovial lining as well as more CAM impingement on the bone. I thought everything would be good and it was for a couple months. Then everything returned.
The increased pain, popping and decreased mobility. He told me I was beyond his realm of expertise and referred me back to Seattle to see Dr. Mayo, the Dr. who did my PAO in 2012. I go down on Monday and I'm absolutely terrified. They have me on the surgery schedule which I was initially told was for at a minimum a hardware/HO removal with an open joint clean up and to look at my labrum again but possibly a PAO revision. Steroid injections and physical exams indicate that the pain is still coming from the joint.
Oh yeah.. I was diagnosed with Ehlers Danlos Syndrome Hypermobility Type. I will also have more genetic testing done in Seattle to determine or rule out other types.
I am terrified of another technically successful but functionally failed surgery. I am terrified to hear there is nothing more they can do. I am just plain terrified. I feel like a burden. I feel like I'll never get better. I feel like a waste.
Guess we'll see what they have to say next week...
Wednesday, November 14, 2012
X-ray from September
3D Image from CT showing Fracture of the Superior Pubic Ramis 3D Image from CT showing a small heterotrophic ossification HO (bone forming in the muscle)
Friday, October 26, 2012
I have neglected updating this blog for a bit because I was hoping to have a better update with answers, advice and/or plan of action but I still don’t have it. Last I wrote, Dr. P (my follow-up surgeon) said the bones were healing well but was concerned about the painful popping I had along with my current pain levels. We agreed to continue with PT and see what was going on but a fall and increase in those symptoms looked like I was heading for more imaging.
Well when I met with Dr. P – he agreed that the increase was concerning. He didn’t think I did any real damage (to the bones & screws) but was worried about the labrum either not healing or tearing again. So I was sent off for another MRI or MR-arthrogram (with contrast dye). Dr. P also wanted me to have an inarticular steroid injection. He was hoping that it would help serve a diagnostic purpose (identifying it was actual joint pain) and offering some pain relief. I was worried about the screws but reassured that I wouldn’t have any discomfort with them and they were MRI safe but… they still don’t make it easy to see. What I also wasn’t prepared for was the changes in my hip – physiologically. As we get started with the injection – the radiologist is asking me about my surgery and current pain and proceeds to tell me about how with chronic pain and/or trauma the body reacts by increasing blood flow to the area. Well after so long… the body actually changes and grows more blood vessels and I have plenty – hypervascular. So hypervascular that he couldn’t get the dye to sit in the hip joint. Several pokes, repositioning and varied injection cocktails were needed to avoid overdosing me with the various meds that they were immediately being pulled away by my blood vessels. This also meant that I couldn’t have the steroid injection because it would not sit in the hip joint long enough to be effective. After he finally found a spot where only half the dye seemed to disappear, I was rushed in the MRI machine and after 20 minutes I was done and there was no more dye left in my joint – just a lot of pain. Another thing that was interesting was when he first turned on the fluoroscope he asked me if I had x-rays taken since my surgery. I said yes but was interested as to why he asked. He pointed to one of the osteotomy cuts and said it didn’t appear to be healed together. He immediately followed it by “well if your hasn’t mentioned it then it is probably just my angle.”
Well when I got the report back it was mentioned. The overall volume of bone callous at the puboacetabular junction was poorly seen and recommended a CT scan. He also said there was mild bone marrow edema in the femoral neck and over the bursa. I guess this could have something to do with the coxa valga and steep neck angles. He also reported a tear and fraying in the labrum and indicated that my CAM impingement was completely gone (go Dr. Mayo).
After meeting with Dr. P – he suggested that the labrum findings were inconclusive because of the extensive repair that was done during surgery – this kind of irritated me because I thought that was why we were doing the MR-A. He focused most on the puboacetabular junction and took another set of x-rays. He said it was hard to say definitively that the cut was healing together correctly. We discussed it at length. He said that it could explain the increased pain especially when sitting or weight bearing. Again I was frustrated because I have been complaining about this specifically for months. I understand that I am still not out of the realm of recovery where it would be completely atypical but I feel like I wasn’t listened to really.
So he suggested a CT scan. I asked what that would tell us… He said it would tell us if I had non-union or slow union. I asked what would that change for a “recovery plan” and he said he didn’t know if it would… What?!?! Then why? He said since he was consulting with Dr. Mayo and has never really seen non-union he wants to have the most information to present to Dr. Mayo to decide what to do. I get that but I am just frustrated that I don’t have any other answers. Tired of waiting for answers. Tired of having the same pain and not knowing why after doing everything my surgeons have said. Sigh. CT is scheduled for tomorrow. We will see how it goes…
PT had been going well and I feel like I am finally starting to gain some muscle back and my therapist feels I am doing great although she is still concerned about what is going on in the joint. I had a little setback with the pain flare from injection and some sicknesses but have an appointment tomorrow before the CT scan… and so it goes on. Hopefully my next update will be better.
4.5 months bilateral hips (note swelling on right side still) Incision 4.5 months Atrohpy & Rebuild at 4.5 months Electrical Stim at PT Therapy Pool at PT - AWESOME
Saturday, September 22, 2012
I took her out to our cabin and tried to give them a solid Alaska experience. The weather cooperated and I even left the crutches in the cabin most of the weekend!!!! I think I was bound and determined to NOT be walking around on mine while she was walking around not just post PAO but post neck surgery (she has had a number of surgeries in the past year and still has a couple more to go). She is a huge inspiration. We had a great time! I even had a killer cold that came and stole my voice.
My meet-up with Laurie was a happy accident/coincidence. We had our follow-up appointments 30 minutes apart and didn't know it until that morning. She was in and out before my appt started but stayed and sat with me in the waiting room! She has young kids too and hopefully we will be able to schedule more times to hang out in the near future.
I feel very lucky to have met them both! Not everyone understands the enormity of the hip issues and the toll it takes on you emotionally as well as physically. It is great to meet a couple people that truly understand and are great/genuine people on top of that.
I had another follow-up with Dr. P. He doesn't think my progress is typical - well I totally agree and have been saying that for weeks. He took more x-rays and said the bones look good (yay) and I should only be restricted by pain at this point. He did state he thinks I am having more pain than what is typical but that I am not out of the woods yet so he isn't TOO worried.
However, on the physical exam... he could elicit loud painful popping in my hip with passive extension and external rotation. :( He said the likely causes are either a ligament/tendon snapping over boney overgrowth or scar tissue or.... get this... my labrum. I was very upset. The labral tear is what caused my initial pain and started me on this hip journey. It was detached and repaired during my RPAO but he said that the success rate was only about 70-80% because of the blood supply and how they have to try and revive that for the repair (cutting the labrum and the bone to create a vascular bond for the anchors to adhere to for repair). The decision at the end of that appointment was to finish out 5-6 more weeks of PT and see if strengthening all my muscles helps reduce the popping and the pain. I left that appointment upset but also trying to be optimistic.
Well... the weather here is AK has decided it needed a say in my recovery. I posted last time about our crazy windstorm. Well we have had several more since then - most recently the middle of last week. So during Alaska Windstorm #3 (AKA Arctic Hurricane #3) I was trying to keep our trashcan from catapulting itself off the mountain. The Mr. had tied it up to a weighed down wheelbarrow but once empty - it decided to pull away and take flight. I found it at the end of our street. They are fairly spendy cans (I know - we had to replace one over the winter due to winds). So I grabbed the keys to the pick up truck and backed it down the street next to the can so I could lift it in and return it to our garage. As I was getting out of the truck (already a feat in an of itself with the hip) a gust of wind decided to rip down the street. Well it grabbed the truck door and slammed it into me on the back right side as I was turning. It threw me to the ground. I got up angry and wet and had to catch our trash can which was now 10 feet further down the road.
As I was driving I noticed a rather sharp pain that radiated down my entire leg. Then over the course of the day my whole pelvis ached and my hip appeared to be popping on more and more movements. I definitely had have an increase in pain over the last couple days and it is deep in the groin. I called Dr. P's office (he is out for a couple weeks) and they said I could come in to the walk-in if the pain gets too bad. I also emailed Dr. Mayo's office and they said it was unlikely that I did too much damage but to keep an eye on it.
So yesterday, I told my PT about the fall and we had already discussed the popping & pain. She had previously agreed that we could strengthen everything and hope that it was a ligament/tendon. However when I told her about the fall and reiterated the symptoms HAVE increased since the fall. She asked to do a physical exam and "check me out." She got the same painful popping and clicking and did a couple other things that didn't necessarily hurt but then she looked at me and said "girl, this isn't good, I definitely think this has something to do with your labrum." So she called Dr. P's office and they suggested I come in on Monday and see his PA-C (since he still out of town) but she told them no, that she wasn't sure what he could do. She said she recommended new imaging done and that I meet with Dr. P as soon as he comes back.
She said if I need it repaired than I need to do it right away so that I can combine recoveries and maximize insurance benefits for the year. I feel devastated now. I don't want to think about it but I knew the pain was familiar. I hate that I went through all this (PAO) and end up in the same pain. So it looks like I will be getting some more imaging next week - CAN I GET AN MRI WITH THESE SCREWS? Am I seriously looking at another surgery before I have really even started recovering from my last one???????
We'll see I guess.
Thursday, September 6, 2012
Needless to say I was worried about how much I would be hurting after this weekend. Then my dad calls and tells me we are going camping - guilted me into camping. He bought all the food and drink, set up driving (thanks Nancy & JB) and sleeping arrangements and said he/they could make I was back in time for the party. So now, not only did I have spend hours following a 5 year old around a water park & walking around the fair for another couple hours - I was adding 5 hours in the car and sleeping in the camper. He had camp already set up by the time I got off work Friday. All I had to do was show-up. Mentally I wanted to sooo bad. My PAO pretty much squashed a lot of the camping opportunities this summer and I love camping with my dad/family.
I am so glad I went. Had a great time. My kids and I had soooo much fun. Little man told me that is was the most perfect weekend ever "we got to go camping, swimming, eat ice cream/cake, have a sleepover with Mommy and go see Hot Chelle Rae". If only his words could melt the pain like they did my heart. I am sore and hurting but I got to see/feel more progress and hope then I have in a while.I was able to walk around on one crutch almost the whole time camping - even up a trail. The birthday party was hard but being in the water wasn't so bad - It was walking around in between. The concert and fair was great too. I did take more painkillers than I had been taking in the past couple weeks but I think I was finally able to get over a hump because of it and I can 'see' myself actually getting off crutches now. Hubby even came home with a nice caribou and we have 120 lbs of meat for the freezer! Progressing hope was there, I thought.
Tuesday morning - I woke up hurting and sick - sore throat, head cold, whole body muscle aches and the pain I was expecting with my activites. I didn't have any meetings scheduled and the kids were complaining about the same illness. We decided to stay home and veg-out, watching movies, snuggling and overall recuperating. I stayed on email from work and started getting crazy notices regarding the second windstorm that was moving in - threatening to do some serious damage. We live on the hillside and have experienced our fair share of 100+ mph winds. To me, all it meant was another night of not sleeping and it was my birthday the next day. sigh.
Well I woke up Wednesday morning a 33 year old who just survived the first 3 months (officially) of recovery post PAO+ sugeries and I was finally seeing and able to report progress. I also woke up to another day off of work!!! The wind storm did crazy damage and schools were closed, as well as, many state and city offices. 30k+ people were still without power. Ours had gone out Tuesday night but was back on by the morning. We get lots of wind and lots of snow but this was pretty crazy. It takes some pretty extreme weather to shut down schools here (our kids have outside recess until -10 degrees F and we have to get more than a foot in less than 24 hours). It was an AWESOME birthday wish granted to wake up on a Wednesday and not have to go to work (especially with the overworked body pain and headcold). Another day of watching movies and snuggling with my kiddos was a blessing. I teased all day that Mother Nature knew I needed another day of rest - and she grants birthday wishes with force & style! My dad's house still has no power and some people are going on 36-48 hours with power and Four of our schools operated today with no power and on back-up generators. Crazy!! We had sustained winds between 70-80mph and reported gusts (near my house) in the 130s! Trees uprooted and blown over - lots of damage all over Anchorage. We lost our trampoline and grill despite well-intentioned tie-down efforts. The trampoline speared itself on a tree between our house and the neighbors, the grill launched itself off our deck (pressed up against the house/almost under the stairs) and into the yard almost into the driveway. But no structural damage to the house and we only lost power for 8-10 hours. Could have been worse.
I realized when I requested my refill of pain medication that I had gone almost twice as long as I have been previously. Part of this is the fact that I am back at work and I can't take it during the day and while that has been incredibly hard on me it has proven I CAN stretch it. I think I have to take an higher dose when I get home and I still haven't found a way to adequately manage the pain during the day but I can tell it is getting better, slowly. I did start taking my Naproxen again. I have another follow-up with Dr. P next week and we will get down to some more details. I have started a list of questions in regards to pain. Did I go back to work too soon? My job involves a lot of sitting up at a desk - what are way to reduce the pain, with medicine or without? Do I need to discuss a modified schedule or alternate work site with my employer, is so, what is recommended and for how long? How long can I realistically expect this sit bone pain? When should I be concerned? I have started, stopped and restarted PT. The week I started was a significant increase in pain - combined with work, how long will this continue? Again - what can I take during the day - naproxen isn't cutting it - oral meds like tramadol or patches??? will patches help joint or bone pain or is that more nerve - I have both but the deep joint pain/bone is what makes a full day & week of work impossible. Nerve & muscle pain is what keeps me awake at night once I get the other pain under control. My muscles still cramp up during the night? How long is this typical?
So I want to say that my days at work are getting better but I have to be realistic and mention that I have taken several half days - worked with my buildings to go home early (take lunch at the end of the day) and I have taken several sick days. So I am not really working at full capacity yet and that is going to change very quickly. My year is picking up very quickly and thanks to the day off yesterday + a couple days out for training - I will have to reschedule 4 meetings agh. One day at a time right? But I am not coming home in quite as much pain and I have noticed a HUGE increase my abilities. I know I was home for a couple days relaxing (and therefore walking around a small space with lots of things to cruise on and lots of rest) but I haven't used my crutches at home for the last 2.5 days. I was a little too optimistic today (after 5 days off) and decided to only take 1 crutch to work. I realized how big a mistake that was about halfway to my office - walking into the building. Tomorrow both crutches get to go with me and if I leave one in the car or my office while walking around the school - okay, but at least I have them both. It took me a LONG time to get back out to my car at the end of the day. Sleeping is still hard. I still wake up several times and have been cutting and adjusting my ambien trying to find a dose that helps me sleep but doesn't make me feel drunk the next day. I will maybe talk to Dr. P about that as well - of course if I get everything under control - I might actually stay asleep. I am definitely feeling more positive, less hopeless.
There still isn't a light at the end of my tunnel but the darkness isn't as consuming. :) That is enough right now to push me along.
Kids camping! trail-walking - 1 crutch Happy Kids at the Concert/Fair 12 weeks/3 months
Hubby's hunting trip - 120 lbs of caribou!!!
And some wind damage
Saturday, August 25, 2012
I recently found my surgical report and have been slowly and surely trying to understand what the heck is says… This week marked my “right anterior hip arthrotomy with repair of acetabular labral detachment, osteoplasty of femoral head and neck, and RPAO – officially.
I started PT this last week after starting back to work last week - definitely a shock to the system. The day I started work I had a couple stitches pop through and 2 holes opened up in my incision. Well a couple days later another hole opened and a 4th was threatening to but a trip to the Dr., some antibiotic cream and gauze bandaging has allowed them to close back up. Yay! I took it as a sign of doing too much too soon – all at once. My job is not really strenuous but is a lot of sitting upright at a desk though. I am going to start the year off pretty busy and unless I were to give away some of my caseload or one of my schools for awhile – I really can’t take it easy. I have a feeling I am going to love being at both of my schools and am excited to work with both of my teams so it bums me out that I have basically driven home in tears everyday. Before work started I stopped taking pain meds during the night and when I woke up to see if I could make it through the workday. I was making it until about 2-3 before I was super bitchy and really needing to take something. Well…. At work…. I am only making it to about noon before I hit that same pain mark but I am at work so… I told my co-workers to ask for favors and schedule meetings early in the day for the next couple weeks. ;)
I started PT and I already am very unsure of my therapist. After reading some of the posts on here and wanting to be very sure of starting PT I decided to go with my local OS’s suggestion for PT because he refers out most for PAOs and he does the follow-up for Dr. Mayo’s patients in AK and the PT office is affiliated with his same clinic. I had a previous PT that I liked from last year when I injured myself. She was the reason I was sent in the direction that led to my diagnosis. She was the one who suspected the labral tear and requested that they do an MRI. I wrote Dr. Mayo’s office and asked for a copy of the PT protocol so I could pick an office. They stated that Dr. Prevost (my local OS) has been taking care of their patients for years and they would agree with whoever he suggested as they would be aware of their very specific PT protocol.
Well I don’t think the therapist I was paired with is aware. When I walked in… my first introduction to her… She says “soooo, you’re still on crutches??” I said “yeah.” Then she said, “soooo, your surgery was in June right?” “Yes.” “Is there a reason you waited so long to start PT?” ………….. um yes. I was a little taken aback and felt slightly like a errant child. I said – “well when I went in 2.5 weeks ago for my follow-up, the x-rays showed that the bones weren’t quite healed and he told me to wait 2 more weeks.”
I was starting to wonder if this woman even read my file. Then after the initial exam she tells me that we are going to start slowly because she is worried we are going to be competing with pain issues and starts going over the exercises she wants me to start with. I only have three but one of them is a clamshell with a resistance band. I paused and said I wasn’t sure I was supposed to do that. I said that I wasn’t quite sure when the restrictions were lifted on the abductions and straight leg raises. She tells me she is pretty sure it is fine but we can start with the lowest resistance band and she will double check. I did one or two – not to her liking because I didn’t get my leg out as far as she wanted. I didn’t care because I wasn’t sure I should do it anyway. The other exercises are an adduction with a pillow and bridges. I am supposed to do 30 reps once a day.
Well I sent a message to Dr. Mayo’s office and explained that I wasn’t sure when my restrictions (straight leg raises & abduction) were lifted that I didn’t know if it was at the 8-10 week mark or if it was at a couple months. The response I got back this morning was “We prefer that you never do straight leg rises. You may begin active abduction at this time but we prefer you do them standing nor side lying against gravity”… So I am guessing if I shouldn’t do them against gravity then I shouldn’t be doing them again resistance bands, right?
Never?!? Never do straight leg raises. Never run… Suddenly the enormity of all this hit me again. I cried. Driving home hurting like hell on Friday – all I could think about was running. I was listening to a song that I have never ran to but all I could think about how good it would be to run to. I felt like I did very little at PT but still hurt like hell as a result. I can barely make it through my days. I am not sleeping well and my left hip has been starting to ache on a daily basis – that familiar deep achy pain that I am pretending isn’t there… But to be honest… by the end of the day, driving home, I almost can’t tell which side is hurting worse because my entire pelvis aches. Also... sitting on the toilet hurts. This is depressing.
The husband and I were talking about caribou hunting and he said “next year… blah blah blah” and I said – we said that last year and look where I am now – I am not far enough into the tunnel to see the light at the end of yet. And I am so tire of my crutches. I want to throw them away but I am afraid I might even need them again for the other side…. Sigh.
Maybe next week will be better.Incision - 10 Weeks Close-up of stitch holes looking better Atrophy at 10 weeks Incision 9 weeks Stitch holes
Saturday, August 11, 2012
That was before the days when at any given moment I am THAT close to tears because... I feel lazy, I feel fat, I hurt, the sun is out and I don't want to move, I am feeling ok but it is raining, I want to drive, I want my husband to back off and stop telling me to start driving, I want to say I no longer need pain meds, I want them to give me more cause it still freaking hurts, I want someone to see how I am doing without me reaching out first, I want to not talk about the pain, I want to get OUT OF THE HOUSE, I don't want to start work, I want to go camping, I don't want to admit summer is over, I want to jump on the trampoline with my kids, I want to go for a walk with my kids, I want to be BIGGER than the pain so I can get past it, I don't want to think about dinner places based on how I can sit in their chairs, I want people to stop telling me they will be there "just call", I am tired of not sleeping, I am tired of sleeping in, I am tired of being tired having done nothing for 8 weeks.
Now let's see if I can take any day the author describes above and leave the hip stuff out... I can't. It's not only there, it is smothering. This will be me in a couple days because I go back to work. Only it's going to be worse. Every "mommy, what's for dinner" is going to be dreaded because of the thoughts of "what do we have that I can make without going to the store. I can't drive to the store because I barely made it home to take pain killers. He isn't going to want to go back down to the store because he picked up the kids. I can make this but I don't think the kids will eat it. Oh gawd, I just need to sit until the painkillers kick in." That will be followed by "Mommy, I need help with my homework or I need to bring this to school" which will require a similar set of thought trains that end with needing the pain to stop."
I did this surgery so it wouldn't be like this anymore. When will it not be like this anymore? I want to enjoy my kids. I see little glimpses of these upcoming tweenage and teenage years with my daughter and I want to press pause. She wanted me to play Barbies with her yesterday while it was just me, her and Grandma because the Boys are off hunting. I didn't want to get down on the floor. Pretty soon, not only is she not going to WANT to play with me, she isn't going to want me around in her day and I have lost a year now to hip pain. My son. My little guy. He is starting preschool. He is getting so big. He still likes to snuggle. I know we aren't having anymore kids so I have the pounding reminder to treasure everything now but I struggle to. I feel like I am losing that struggle and I am going to miss it.
So back to the some days are better... Yes, living each day/minute like we might die the next is impossible and exhausting. I get that we need to recognize our not so good days and mix them up with the good and great days and to note that some days are better and be okay with it.
But somedays... sometimes it's just as easy to say... some days aren't better, some days are worse... and leave it there.