Hip Update

I hope everyone had a wonderful Christmas and a very Happy New Year!  My hope is that 2014 brings healing, health, and happiness to all of us!

I have spent the past month researching hip dysplasia, the specialists who treat it in the US, and the periacetabular osteotomy and femoral osteotomy surgery.  I’ve joined several support groups, and have talked with several patients who’ve had the PAO surgery.  I have come to terms with my diagnosis due to the research that I’ve done, the pain in my hip that keeps alerting me that something is not right, and by listening to my instincts.  At first I was scared and feeling very fearful – I just had a major surgery…can I make it through another one?  What if this surgery doesn’t fix my issues?  I didn’t want to put my family through another big surgery.  Then I just felt mad – mad that they didn’t find this sooner, mad that I’ve been feeling like something was wrong for the past 10 years and was dismissed and told everything was “normal.”  There was one book on Amazon about Hip Dysplasia in young adults, and this, along with the support groups, has become a great resource for me.

For a while, I was in denial about the whole thing – I’ll just keep doing more yoga and stretching…that will fix my problem, right?

The more I researched and read, the more I found about how hip dysplasia is a mechanical issues and needs a mechanical solution.  The joint is deformed and, unless you fix the joint, it will continue to get worse until you have full-blown osteoarthritis, walk with a limp, and require a total hip replacement.

From the support groups, I learned that there were several females who were told their labrum was torn, had a scope, and a year later, it re-tore because the underlying issue (hip dysplasia) was not fixed.  One woman had 3 hip scope surgeries before she was diagnosed with hip dysplasia!  I also spoke with women who had pelvic pain, in addition to their hip pain, before the surgery, and both pains improved after surgery.   Hearing this gave me such hope!  I am praying this is the solution for all of my issues!

I got my final CT scan report, and it made things a little easier to accept, seeing the results in black and white:

Joints: Degenerative changes of the symphysis pubis and bilateral SI joints.

Acetabular version, adjusting for pelvic tilt 2.5 to the left

At 1:00 (normal 5): 49

At 2:00 (normal 10): 46

At 3:00 (normal 15): 40

Femoral version (normal 5-15): -14

After reading this report, I sat my little deformed, I mean “special,” hip down and accepted the diagnosis more.  It explains my SI joint pain, pelvic pain, left hip pain, and occasional left knee pain. 

Many women on the support group told me that their hip angles and acetabular/femoral version was not accessed until much later.  I am now so grateful I got a diagnosis when I did, and that my doctor at UTSW made sure to do a CT Scan and perform the appropriate hip protocol to assess for dysplasia.  <Part of me wants to go back and throw the report in the face of the PMR doc who told me my hip/pelvic pain was all “anxiety” and that I just needed to be put on anti-anxiety and anti-depressant medications…but that is not the nice way to handle these things, I suppose, but when I think about it, it makes me smile a little.>  🙂

You body will tell you when something is not right, and mine definitely is.  I decided to sit on the floor to wrap some Christmas presents a few weeks ago, and my hips were sore and ached for a whole week!  Wild!  I didn’t even do strenuous exercise or anything! I was just sitting!! Not normal.

After doing tons of research, asking around on support groups, and finding who was in-network with insurance, I have a list of potential surgeons who do PAO surgery.  There are a limited number of orthopedic surgeons who are skilled in this area, and all but one are out of state.  I’ve sent off imaging to Washington, Michigan, Chicago, St. Louis, and Dallas.  The whole process is a little overwhelming, but I am trusting that my instincts will guide me in choosing the right person for the job. 

I feel like we will soon be off for another medical sabbatical again.  We are traveling to Houston at the end of the month for more scans at MDACC.  They are doing an MRI of my abdomen, to check for post-surgical changes, as well as an ultrasound of that spot I found under the right side of my ribs.  After that, we fly to St. Louis for an appointment with a specialist there.  He does around 10 PAOs per week, and young adult hip dysplasia is his specialty.  On Feb 5, I am going with my Dad to Dallas to meet a surgeon at UTSW.  He mainly works at Texas Scottish Rite Hospital for Children as a pediatric surgeon, but once a month he does a PAO on an adult.  I know both of these surgeons have around a 2-3 month wait for surgery.  In the meantime, I hope to hear back from the other surgeons regarding their review of the imaging CDs that I sent out, and I will keep doing more research, checking out the support groups, and work on preparing my mind, body, and spirit for this journey.  I have found that a rice heating pad helps me manage my pain during the day and is essential for being able to sleep at night.  It’s a journey, but I am no longer as fearful as I was before, which is a start.  Thanks so much for your prayers and support.  Have a wonderful new year!

 

 

Hip Diagnosis

Well, I got a call this morning from my orthopedic surgeon in Dallas. He told me the results are in from the CT Scan…and I have hip dysplasia. Hip dysplasia means that the hip joint is the wrong shape, or that the hip socket is not in the correct position to completely cover and support the femoral head. This causes increased force, and abnormal wear on the cartilage and labrum. He is referring me to see a hip dysplasia specialist, who only comes to UTSW once a month, for a consult regarding an osteotomy. Surgery to change the shape of the hip joint typically involves re-shaping the shallow hip socket (acetabulum) so it is in a better position to cover the ball of the hip joint (femoral head). Osteotomies may be performed on the hip socket side of the joint or on the ball side of the joint (upper thigh bone). Surgeries are on the hip socket side are called “acetabular osteotomies” or “pelvic osteotomies”.

Basically, this is a big deal and will require major surgery to correct. If I do nothing to fix it, the joint will continue to wear out, and I will end up having to have a total hip joint replacement if I do not have hip preservation surgery now.

This surgery involves cutting the pelvis around the hip joint and shifting it into a better position to support the stresses of walking. After the hip is re-positioned, it is held in place with screws until the bone heals. After the bone heals, the screws can be removed, but this is not usually necessary. After the operation, patients should not put full weight on their leg for up to three months, so crutches or walkers are often recommended along with a wheelchair for longer distances until the bone has healed in its new position.

When I hung up the phone, I immediately felt fear. Lots of fear. I just had my abdomen reconstructed, and now we are going to rebuild my hip joint? I then started saying “I trust you, God” and repeated this many times until I started to believe it. I am trying hard to stay calm. We don’t know what the specialist will say. I need to just do some research to learn more about this and wait until the consult. I don’t know when the consult will take place. I was told the office will call me later this week to schedule the appointment.

My symptoms do match up with hip dysplasia pain – anterior hip pain and pooping/clunking. I have had these issues for many years, and it is starting to get worse. I just don’t understand how this went undiagnosed for SO long. In PT school, I learned about hip dysplasia in babies and young children, not in adults. This is all such a shock. I never would have guessed this was the problem. I’ve had x-rays and an MRI read here in Amarillo that came back “normal.” I guess that just proves how important second and third opinions are and the skill of the radiologist reading your scan.

This may be the cause of the pelvic pain that I have been dealing with since adolescence. My pelvic pain specialist agreed that hip dysplasia is a “classic problem that can be associated with persistent pelvic pain in some cases.”

Still just shocked. This will take a while for me to process. As scary as all this is, it is nice to have a diagnosis…even if it possibly means more surgery. I am trying to stay calm and wait until we have more information. It’s a journey. I will do more research and decide what the best option is from here. Thank you for all the prayers and support. I pray this might be the answer to all my hip and pelvic pain issues.

Health Update

I’m sorry it has taken me so long to provide you with an update.  I hope everyone had a great Thanksgiving.  Here’s what has been going on…

I made it through my Whole30 Paleo challenge!  I decided to stick with what my functional doctor recommends and continue with a paleo lifestyle.  I noticed a big decrease in my brain fog symptoms during the Whole30, but am still dealing with terrible fatigue.  It is a big challenge for me to get up in the morning.  I still feel very tired during the day.  People talk about getting “Tiger Blood” on the Whole30, where they experience lots of energy, but that didn’t happen for me, and now we know why…

My functional medicine doctor in Dallas ordered a stool test, and it came back positive for Enterobacter, an opportunistic bacteria, as well as Blastocystis, a parasite.  I did some research, and both the bacteria and parasite cause fatigue…bingo!  We also found out that I do not have much good bacteria in my gut, which is why the bad guys (bacteria/parasite) are winning…for now.  I am so glad my doctor ordered this test!  I cannot believe that no one else has thought to do a stool test.  70-80% of your immunity comes from your gut, and right now, mine is compromised.  She also believes that I have damaged mitochondria (the powerhouse of the cells), which explains a lot of other symptoms that I have.  She has started me on supplements to kill off the bacteria/parasite, and to support and heal my mitochondira.  I am also taking a ton of probiotics to repopulate my good gut bacteria.  I will also start a bioidentical Progesterone cream, since my hormones were out of balance, which I hope will help prevent all the painful ovarian cysts that I have been having.  I will also be getting Vitamin B12 shots, and she is having it compounded by a local pharmacy, so I can give them to myself.  She wants me to continue the Paleo diet, and limit fruit to only a small amount of green apples and berries.

 It is kind of gross to think that I have a parasite living in me.  Yuck!  My chiropractor thinks I may have gotten it when I went to Europe in high school…that was over 12 years ago!  Who knows for sure how and when I got this stuff.  The Enterobacter is common from hospital stays and causes frequent UTIs – another issue I have been dealing with.  I am praying as we starve off and kill this stuff, that my health will continue to improve and that I will feel better and get to experience that tiger blood soon!

A few months ago, I noticed a small mass appear under my right ribcage.  It doesn’t hurt when you palpate it, and it shows up when I do my strengthening exercises for my abdominal muscles.  Maybe it’s a muscle?  Not sure.  I don’t think it is another desmoid tumor, but at this point, it is better to be safe than sorry (my desmoid tumor was in my left abdominal wall).  I am monitoring it, and I contacted MD Anderson Cancer Center today and sent a message to my nurse.  I am getting an MRI of my abdomen done in January to check for recurrence after the complex abdominal wall reconstruction.  I just asked that the lower ribs be covered on the scan as well.  It will make me feel better.

It still amazes me how much sneezing hurts along that abdominal repair.  It scares me a little bit, because it almost feels like I am ripping from the inside, and I definitely don’t want another hernia.  When this happens, I remind myself, it won’t be like this forever.  🙂  Someday, this will not hurt.

I recently heard on a podcast that pain is a reminder to be kind to your body…that is so true.  So, I’m just taking things one day at a time and trying to be extra kind to my body while it is healing.  It will take time.  This is all a lesson in patience.  That’s about it for now.  Enjoy the holiday season!  🙂

Day 30 – I made it! :-)

Day 30 is finally here!  Victory!  I feel really proud of myself.  It’s like I had to prove to myself that I could do this.  I feel good!  I know I can do challenging things, and I believe in myself. 

Here’s the menu for day 30!

Breakfast – Sweet potato hash with green apple, ghee, and eggs.  I love this stuff and look forward to it each morning!

Lunch – Finished off the pumpkin soup, which was a perfect meal for this cold snowy day.

Dinner – Pumpkin Spice Chicken Cacciatore.  This turned out really good!  I ended up putting everything in the crock-pot this morning and let that do all the work.  I had this over spaghetti squash.  Even my husband gave it 9 out of 10 stars.  Definitely give it a try.  Here is the recipe:  http://civilizedcavemancooking.com/entrees/poultry/pumpkin-spice-chicken-cacciatore/

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I have learned on this journey that I can live without sugar, even dark chocolate.  🙂  The brain fog has improved dramatically!  That has been the biggest benefit that I have noticed so far.  I can think clearer…finally!  I floss more, because real food tends to stick in your teeth.  🙂  I have learned to cook and am getting better at it.  I still have medical issues that I am working through, but feel that my body has really taken well to the paleo lifestyle.  The Whole30 newsletter states that, for some people, it takes longer than others to get that tiger blood.  I will stick with the paleo lifestyle for a while, since I am seeing improvement.  I probably won’t stick to the hardcore Whole30 plan all the time, but I feel this is a great detox and can see myself doing this a couple of times a year, like an oil change for my body.  🙂 

Tomorrow, I may have some bacon, but I feel like for me, sugar is something that I should continue to stay away from.  I don’t want to get sucked back to sugar island by the sugar dragon again.  I have already found a paleo apple spice cake that is only sweetened with green apples to make for myself for Thanksgiving.  I would like something that I can have while others are eating the pies and cakes that come with the holidays.  I have many different health issues that I am working on, some that I’ve had for almost 15 years.  I understand that it will take time to overcome these issues, but feel like a healthy diet is key for me to beat this.  I am encouraged that I have some doctors appointments coming up this week, which will hopefully provide me with more answers on my journey.  I probably will not post every day, but will continue to give updates and share the great recipes that I find.  Thank you so much for following my journey!  Oh, and I believe I need to purchase a fabulous t-shirt to commemorate this achievement.  🙂

Day 29 – One More Day! :-)

I’ll keep this post short and sweet.  It is past my bedtime, and all the traveling has worn me out.  It feels like winter!  We got snow today here in Amarillo, and it is currently 27 degrees outside…brrr!

Breakfast – I heated up the leftover eggs and sweet potato hash (that I did get to eat on the trip since we came home early) in the cast iron skillet.  This dish tastes way better when it is completed heated.  🙂

Lunch – Leftover paleo meatloaf and spaghetti squash with pesto sauce.

Dinner – Leftover pumpkin soup.  Again, this tastes way better when warm.  🙂

Today, before the weather got bad, I planned out my meals for the upcoming week, and we made a store run.  I’m definitely glad I did, as we are getting more snow tomorrow, and I hear the roads are starting to get bad already.  I now feel like I can confidently shop for a paleo lifestyle with ease.  I start with the produce and get all my veggies, head to the meat section for my organic grass-fed meats, on to the free-range organic eggs, and I’m good to good.  I also feel so proud when I look into my cart and see only real foods and nothing from a box or bag.  It’s rewarding.  On the menu this coming week: Pumpkin Spice Chicken Cacciatore and Cabbage Rolls with Tomato and Cranberry Sauce.  Yum!  That’s right, I’m sticking to Paleo for a while.  Maybe not hardcore Whole30, but definitely staying paleo.  I am hoping if I keep up with it, I will get to the Tiger Blood phase soon!  Even though I am not bursting with energy yet, I still have seen many positive changes, more so than anything else I’ve tried, and have a strong feeling that this is what I need to stick with to heal my body.  Stay warm!

Day 28 – Traveling

It was challenging to stick with the Whole30 while traveling.  I made sweet potato hash and egg for breakfast, but our room did not have a microwave.  The mini-fridge was very cold, and my breakfast was frozen.  The hotel had a community microwave, but I don’t think it worked very well because, even after 3 minutes, there were still frozen areas in my breakfast…but I ate it anyways.

I don’t think my breakfast had as much fats as it should, because I started getting hungry about two hours later, so I had some raw cashews to tie me over until lunch.

It was very cold, windy, and rainy, and I decided for lunch I really wanted to eat something warm.  We ended up going to Chipotle, and I had a salad with greens, beef, peppers and onions, and avocado.  I think the protein and fat did a great job of holding me over for a full 4 1/2 hours.  It was a little challenging, since the last time I was in a Chipotle, I had rice and beans, but this meal was still good without the grains and legumes.  We needed to get on the road before the weather turned bad, so this was a good place to go to get higher quality food fast. 

For dinner, I had cold pumpkin soup in the car.  I knew there would not be a place we could stop on the road where I could get a hot meal and stay true to my Whole30 challenge, so cold soup it was.  I liked it much better warm, but it wasn’t horrible.  We stopped at a Sonic, and I asked for a cup of hot water so that I could make some herbal tea (I always travel with my own tea).  It was nice to drink something warm when it was 23 degrees outside, crazy windy, and sleeting.  Again, I don’t think the soup had enough fat in it, because I became hungry three hours later.  So once home, I had a few slices of green apple and some raw almond butter to tie me over.

Not bad for a day of travel.  I ended up eating a few cold leftover meals, but did the best I could under the circumstances.  It really makes me appreciate my cast-iron skillet and having warm meals, especially during the cold weather.  As a bonus, I did not suffer from any travel constipation!

Day 27 – Travel Day

Well, today is the day that we are going to travel for the first time on the Whole30.  I packed my meals for the road and packed some snacks as well so that I will not have to rely on fast food or snacks from a gas station on this road trip.

Breakfast – Sweet Potato and diced apple with ghee and Leftover Meatloaf.  I ran out of eggs and did not have time to run to the store, so leftover meatloaf was my morning protein.  Improvising!  🙂

Lunch – Spaghetti Squash with Meatloaf and Walnut Pesto Sauce.  This turned out really good!  I loved the Walnut Pesto sauce.  It adds so much flavor to the spaghetti squash!  Yum!

Dinner (on the road) – Leftover Pumpkin Soup.  I heated the soup and placed it in a Thermos before leaving, so it was warm for me when I was ready to eat it.  It was interesting to eat it in the dark, but that’s all part of the fun.  Plus, we managed to fit all the food into a small hotel mini-fridge.  Winning!  🙂