A hip that's not hoppin'!

I said a hip hop,

Hippie to the hippie,

The hip, hip a hop, and you don't stop, a rock it

To the bang bang boogie, say, up jump the boogie,

To the rhythm of the boogie, the beat.

http://youtu.be/Tpz5WcCrhR4

And that's my humor for today thanks to my sister. Enjoy!

Left Hip Consult with Dr. Mayo 1/5/15

It was a very long day. We were at Harborview for 4.5 hours. I expected this but decompressing from the day has been a challenge due to my head swirling. 

A lot of the afternoon was paperwork, lots of waiting around, seeing Dr. Mayo's (resident?) James Learned initially, then more waiting around, obtained additional x-rays, then we saw Dr. Mayo with his resident for maybe 45 minutes or so. I am really not sure the amount of time actually, I was in a weird time warp? The day was really overwhelming if I am honest. Overall, I have a top hip surgeon in the US sort of stumped with my case or at some road blocks proceeding with caution. I can't blame him and I highly value his expertise.

In summary, I have acetabular over coverage even after acetabular rim trimming with my previous hip scopes. My Acetabular Center Edge angle measures at 56 degrees on the x-ray from today. I currently do not have updated hip angles on CT after my last surgery. Once I have them from my additional imaging, I will be sure to update this post or add a new one. 

My anterior wall is prominent while my posterior wall is deficient. My hip starts feeling pain at 80-85 degrees flexion; he believes this is from the acetabular rim rather than AIIS impingment or from the femur itself. Normally this can be fixed in a hip scope but since two have already failed, Dr. Mayo doesn't think a scope can fix this. He would either need to remove more bone off of the rim or achieve this by reorienting the hip socket with a PAO or some sort of combo open procedure? He was suggesting what he might in way more detail but it is currently way over my head! He described the method as "unchartered". It is a little shocking to have a doctor who has been in the field for 30 years to call my case "unchartered". Yay me??

Next Steps:

1) Receive a cortisone injection into the joint with cortisone and lidocaine then keep a pain diary with a scale of 1-10
2) Prior to the cortisone injection maybe use the fluoroscopy as a diagnostic tool to obtain real time movement of the joint. I don't believe he has made a decision on this step.
3) More imaging via a CT. If the new 3D model on the computer doesn't give more answers then he will actually MAKE a 3D model to monkey with in real life in order to try and recreate my pain. This would help in diagnostics and how he could approach the repair. At that point we will have to decide if surgery outweighs the risks.

I should be scheduling the injection and CT within the next week. We need to see if the injection works and for how long. So I will follow up with Dr. Mayo in about 6-8 weeks. If we proceed with the surgery I am assuming it would then be another couple month wait. Can't I just snap my fingers and this be all over?! I dream of.... being a normal 30 year old!

But don't fret, I will certainly be obtaining multiple opinions before possibly slicing my pelvis in 3 areas and reorienting it. The good news is Dr. Mayo probably would have recommended trying the hip scopes if I had seen him in the beginning of the diagnosis path 3.5 years ago. So my arthroscopes weren't a huge waste of time! And this wasn't caused by any particular surgeon. Just stupid genetics with a wild adventure in mind!

Here is my CT imaging prior to the revision surgery. This is what we can compare it to in the next few weeks.

Do I need a PAO? December 2014

From the time Dr. Kelly suggested I see Dr. Mayo in July 2013 until now, Dr. Mayo has moved from Tacoma to Seattle at Harborview Hospital. Dr. Mayo works in the Orthopedic and Trauma center and only does open surgeries, no arthroscopy. He is THE doctor you want to see if you have a complex hip issue.

I called Harborview and requested to make an appointment. They require a message into his scheduling coordinators. His coordinators then called me back within a few hours, amazingly! She pre-screened me over the phone; it is my understanding he does this for all of his patients and I certainly do not blame him one bit! She asked me to fax my chart notes and mail my imaging. Given that I have over an inch thick of medical notes and about 7 discs of imaging over the years, I asked if I could hand deliver everything in person. She was happy about that and I did just that the next morning which was a Friday. She told me he would be reviewing my case on that coming Monday. I couldn’t believe how fast this was moving along. I had such a hard time last time when he was at the hospital in Tacoma so this was a major relief! Dr. Mayo reviewed by notes and imaging and would like to see me in persion. His coordinator did not elaborate WHY he wants to see me. It is also my understanding per my fellow hip buddies that if he wants to see me he thinks he can help me! I don’t think he would be wasting my time or his… he is just too busy for that!  I am super nervous about needing to see him. If I need a PAO, this means I may have been misdiagnosed for quite some time having the wrong surgeries to correct my bone anatomy. That is a hard thing to swallow… I have to trust that this has happened for a reason!

My appointment was supposed to be January 12^th 2015, but I was able to get it moved to January 5^th 2015. I truly believe he is either my answer or can help get me to the right answer and direction. In order to seek well rounded PAO opinions, I have an appointment scheduled with Dr. Downer at Orthopedic Specialists on January 23^rd and Dr. Lee at Virginia Mason(again) on January 29^th. It can be awhile to get into these folks and if I end up not needing to go the PAO route they would still be good specialists to see for a hip scope since they can do either procedure.  I have all of my questions typed out and my sister will be going with me for support. Wish me luck!!! I will update once I have more information.

Dr. Nowak Consult 11/4/14

Going back to Dr. Philippon’s suggestion from July 2013, I made an appointment with Dr. Nowak on 11/4/14. He spent about an hour with me and reviewed by pre-op imaging from Midwest Ortho (Rush Hospital) in Chicago. Since it had been 14 months since the operation and the results are null due to operation changes, he ordered a new MRI with dye of the left hip only. That was done on 11/10/14 at Everett Bone and Joint. We went over the results in person on 11/19/14. Dr. Nowak stated my case is very complex and he doesn’t have an answer to my lingering pain. Actually this was stated multiple times. The bony impingement should be gone based upon the x-rays. There was a metal artefact on my MRI which distorted the imaging where the dye was supposed to help isolate the soft tissues. They don’t believe the labrum to be re-torn in the anterior region. There is a possible tear posteriorly. The capsule looks good. No bursitits... even though I feel  like I have it, my outer hip is SOO painful.  He  had me walk of the door with my imaging and chart notes in hand… I am guessing so I don’t come back! LOL

I immediately sent the results overnight to Dr. Nho for his review. I really wanted insight why there was metal in hip that I wasn’t aware should be there as well as why I am continuing to be in pain so far out. It turns out the metal is not a big deal since it a small flake measuring 1mm in size embedded in the hip. This is likely from a bur when they made the anchor holes during the scope. This can happen sometimes and should not be impacting me. There is more risk to remove it rather than just leave it there. If I have to have another MRI there is an ‘artefact reduction’ technique they can use to increase the MRI quality. The last one in November is pretty awful! So, at 16.5 months post op, Dr. Nho suggests a cortisone injection to see how I respond to that. I am willing to do it but am not hopeful. I guess the biggest question is why I do have posterior tears on both hips if all of the bony impingement is supposedly corrected? I have put off going to Chicago until the end of January if I decide to go that route. The holidays were just very busy and it is more expensive to fly during that time. And I am certainly not going back to Dr. Nowak! 

Through sorting out all of this chaos between Dr. Nho and Dr. Nowak, someone reminded me Dr. Kelly suggested that I see Dr. Mayo. It certainly wouldn’t hurt to rule out hip dysplasia and the PAO path. I would be one step closer to getting a proper diagnosis and plan for recovery. I would love to be living a ‘normal’ 30 year’s life at the moment! 

Here are some snapshots of my MRI 11/10/14 and X-Ray 11/4/14:

Left Hip Decline after Revision (months 9-16)

As I increased my physical activity around 8 months post op (April 2014), things kind of hit a downward slope. I was able to get up to 2.5 mi walk but had to push through it. I tried getting back into hot yoga again and it felt great even if I couldn’t do every pose due to restrictions. I did make sure to listen to my body and was very careful. I still continued with my ART and chiropractic sessions about 2 times a month. Since I was so far along he didn’t really feel I should need the adjustments as much just to focus more on the physical therapy aspects. Personally I feel like I cannot survive the muscle issues without constant ART sessions and chiropractic adjustments. I had also started volunteering at a horse rescue barn for about 3-4 hours every Thursday. I was so tired of being “woe is me” and needed to give back to my community. My physical therapist thought it was good for me to go for the mental and physical reasons, too. I agreed it was good for me emotionally but ended up finding myself in more pain and very exhausted after my rounds on Thursdays. I have really struggled to find a balance of what is too much activity. I have since stopped volunteering at the barn and just trying to focus on my health. It was a very hard decision but I hope to find other ways to help the organization.

Overall I have been battling the increased nagging groin, trochanter bursa, TFL, glute medius and glute minimus pain. I’ve since tried to get back into pool therapy combined with land physical therapy. I see some strength and balance benefits but I still feel really unstable again and my left hip constantly pops internally and externally. It sometimes can hurt really bad other times it is just a nuisance. Acupuncture with TENS and cupping were my next attempt alongside PT. This can give me some relief but only lasts maybe a day or two. The constant cycle of pain and limitations affecting my life can be very draining! The thing I cannot understand is I am not on narcotics anymore but push through more of what I wouldn’t have previously. I feel like it is just my new "normal". Maybe this is as good as it gets? Am I asking too much?  I know it is hard for my boyfriend to see me in pain. When I envision us having a family in the future, I want to be able to keep up! I struggle now even holding a baby for awhile or lifting them repeatedly. I definitely would not be able to carry a child for 9 months, give birth or take care of our children. It makes me really sad :( Having a surgeon out of state it is hard to keep flying to see them. Honestly didn't think I would be having complications but that is the reality that I didn't take into account. I realized I needed to find a surgeon in state who is knowledgeable enough AND willing to take over my complex case. Every doctor or specialist I have met over the years has told me I am very complex. This is a very hard and daunting task....

Left Revision Surgery 8/30/13

I had my exploratory surgery revision on my left hip August 30^th, 2013 at Rush Oak Park in Chicago, IL under Dr. Nho. It ended up being 3.5 hours long, normally it is around 1.5-2 hours. 

I had a very hard time in recovery for several hours. Luckily before surgery I had requested to stay the night rather than going home that same day. Well, to the IMD Guest House for Rush patients. (Please look them up http://www.imdguesthouse.org/ Normal rate is $50 a night unless you qualify for a discounted rate. It is such a great place to stay where it feels more at home and there is a full kitchen to cook and eat real meals)

When I woke up from my very long surgery, I was so worried they wouldn’t have found anything wrong. Dr. Nho and his assistant at the time advised there was a 5mm hole in my hip capsule before any action was taken by them. When they put your hip into traction for the surgery it should require some force. The hip apparently went like “butter” and did not require any force. This is NOT good; imagine my femur wobbling around, unstable, for almost a year? Here I was starting to feel like a crazy person seeing all of these doctors without any solid answers. He did not have to use the cadaver grafts and had enough tissue to repair both my labrum (2-3cm tear) and capsule with two anchors. He had to make a third surgical hole to check my glute medius and minimus and luckily there was no tear there. He cleaned up around the trochanter bursa but did not actually have to remove it.  A very small amount of bone was removed from my femur as well as my acetabulum that was missed in my first surgery. The final step was a capsule plication. He gave me a good analogy about plication: instead of patching a hole in your jeans with a patch, you are grabbing the jeans and cinching and tightening the fabric then sewing it. In the case of the capsule, this is in hopes to provide stability to the joint for a hip that has been very unstable.

I stayed in Chicago for about 5 days and saw the physical therapist a few times. Dr. Nho has a very clear post op protocol. The stationary bike and isometrics were started pretty much right away which I was not used to with Dr. Bruckner. It was such as nice change! I could already tell my joint was more stable. Dr. Nho also prescribes a CPM (continue passive motion machine) and an ice machine. All surgeons are different but I feel these two medical devices made a huge difference in my immediate post op pain.

Strapped into my boots at the hospital 

Hanging at the IMD guest house in my boots! 

So lucky up have a fellow "hippie" visit me at the guest house in Chicago. Samantha had never met me and picked up some extra Rx for me at Walgreens as well as some food. Talk about instant bond! 

First few days at physical therapy at MOR off of Harrison. Make sure to see Katy!

My mobilegs are in the back there :-)

Due to all of the work I had done, especially with the capsule plication, I was expected to be very limited with weight bearing 6-8 weeks. In the end I was on crutches (mobilegs) for about 12 weeks. He was worried about my recovery at about 6 weeks out, better by 12 weeks… just a very very slow recovery for me.

Here's some pretty bad bursitis post op!

My dog took care of me while in my CPM machine!

I really really focused on my physical therapy. Luckily I found someone who does ART and focuses on the janda method. Things weren’t perfect and I definitely felt better after my second surgery but still not better than before my first surgery. I had to move in February 2014 which was physically really hard on me.  I also was in a small car accident in February 2014 where I was rear ended.  I don’t believe the car accident impacted me in any way, luckily!