Update!

These last couple weeks have been very difficult for me. I have had a lot of news to digest in regards to my health. Dr. Millis told me that I will need a femoral derotational osteotomy to fix my femoral retroversion. I did not even know that I had femoral retroversion until that point in time. I knew I had hip dysplasia and that my case was more difficult, but with the additional diagnosis it would only further complicate the surgeries and recoveries. He also spoke to me about getting a referral for genetic testing for a connective tissue problem because it is clear that something else is contributing to the problems. That was a very difficult phone conversation to have. By the end of the conversation I was speechless and in utter shock. Dr. Millis kept explaining different things, but I just couldn't believe that everything was happening. The tears just rolled down my face. Just thinking about going through a FO and it not being enough, then still having to do a RPAO for the second time. I knew this would take awhile to digest.

This past Monday, I followed-up with Dr. Maiers, my local OS per Dr. Millis's request. I wasn't expecting anything that I had not already heard from Dr. Millis. The appointment went as planned and he just reinforced what Dr. Millis said. He said that my problem was definitely very complicated and "way above his pay grade." However, unlike my bestie, Jess, I would not have the option of having the surgery here in Indy by Maiers, like she did because of the complexity and my routine post-op complications that I experience. He also agreed with Millis about a referral to a geneticist. There is clearly something else going on. Maiers did however approve of an alternative PT test for the Army. I would be allowed to do the bike event instead of running. This was a good part because at least I will be able to participate more in my unit and would allow for more job opportunities. I could definitely use a job with a decent income to help pay for all the medical and travel expenses.

Wednesday, I went to Meridian Health Group, the pain management clinic I am using, for a morning full of appointments. They had called me earlier in the week about my lab results and that I had a vitamin D deficiency. My day started with OT to help with different therapies and daily changes I could do to help with the pain and improve my daily functioning. Then I saw the nurse anesthetist for an injection consult. She suggested that I could get some different joint injections to help with the hip pain and nerve issues. I opted for a sympathetic nerve block under sedation. Later, I met with Dr. Wright, an interventional radiologist. He suggested to have a couple of nerve blocks first, then to do the sympathetic nerve block, because it would have a better result. I would do a block in the front of my hip first, then a week later a piriformis block in the back of the hip. I would allow my hip to rest for two weeks and then we would do the sedation and sympathetic nerve block. We got all of the injections set up to be done in the month of March. Next, I went to see the podiatrist to check on my gait, etc., to see if there were any adjustments to be made. My "bad" leg, or right leg was actually structurally longer in length. A temporary fix, was just to add a lift in my left shoe to help. It also is part of the reason I continue to get bursitis in my left hip from overuse. The final appointment of the day was a psych consult. I knew this part would be emotionally draining having to talk about everything that has happened, what I have lost, my stresses, fears, etc. My psychologist, Linda, and the head psychologist, Dr. Gleckman, couldn't believe how young I was and how many incredible things I have had to deal with already and what I would be continuing to face medically. It was definitely an emotional session. I try to put a happy face on, a cheerful façade, but it doesn't always work. They said that I am so strong and people tell me that a lot, but there are so many times I do not feel that way. It had been a long morning of appointments and I was spent by that point, so I headed home to finish homework before class.

I had only been home a couple of hours, when I got a phone call from my family doctor's office. The nurse had called to tell me that my Pap results came back abnormal and that I was being referred to a GYN to get a colposcopy and biopsies. I couldn't believe it! I almost immediately broke out in tears. I was so upset and had no idea how this could possibly happen. I am a health conscious person, had my Gardasil vaccine, yearly check-ups, etc., etc. Now, I have one more problem that I have to deal with. The nurse continued to explain what the abnormalities were. It is called low-grade squamous intraepitheleal lesions. LSIL are caused by the HPV virus, there are over 100 strains, and can also be referred as mild dysplasia. They are abnormal cells that are not cancerous, but can lead to cancer untreated. Some strains of HPV lead to plantar warts on the feet or hands. When I looked up the information it scared me because it was one of the groups of abnormalities that requires treatment and that can't just be watched carefully. Usually docs will run another regular Pap before referring to a specialist, but I was referred immediately, which completely freaked me out. I set up the specialist appointment yesterday and when the nurse asked for me to wait so she could check that the "procedure" room is available, I nearly lost it! She told me not to worry, that this happens a lot, but that was not reassuring at all. I just do not have that kind of luck, no matter how hard I try to take care of myself. When I got off the phone I broke down. I have been feeling so overwhelmed with just dealing with my hip & leg, but now I could be dealing with a potential serious and scary issue. I just don't know how much more I can take. I felt as if I was drowning with no way out. Just the words of "cancer" or "procedure" just sends me over the edge. I just think of all the procedure rooms I will be in, injections, testing, surgery, etc., has me so anxious and it makes me feel so anxious just thinking about it. I am so scared for what is to come and if I will be strong enough to handle it all...

Completely Unexpected!!!

About 5 weeks ago, I had my 4th hip surgery at Boston's Childrens Hospital with Dr. Millis. Dr. Millis performed a hardware removal and scar revision on my right hip. I stayed at Childrens overnight and was released the following evening after an MRI with contrast was performed. My hip was pretty swollen and bruised, but the incision looked a lot better than the first time around. The surgery did send my nerves into overdrive and I had intense burning sensations down my leg. The sensations would take my breath away and I could not touch my leg when the flares would occur. They have decreased with an increase in nerve meds and time. Dr. Millis told me that he would call me with the results, but he was "cautiously optimistic" that the screws were causing the problems and this would be very helpful. It was also necessary to remove the screws so that he could get useful imaging.

I got to keep my screws!!!

It took over 4 weeks for Dr. Millis to call with my results, despite numerous emails and many phone calls and messages. He called as I was getting dismissed from my drill weekend. He asked how my incision was healing because 3 weeks post-op it got infected. My incision is still healing, but is definitely better! This is when I got the curve-ball. Millis told me that my acetabulum didn't actually look too bad. It could use an adjustment, but he didn't think that was where a majority of the problem was coming from. He then told me that I had Femoral Retroversion, a twisted femur, and the femoral head was hitting against the hip socket, causing pain, bruising and tearing the labrum. When my knee is straight the femoral head hits the socket, but when my leg is twisted outward, like sitting indian style, its "normal," fitting how it should. He wants to do a Femoral Derotational Osteotomy, where the femur will be broken, realigned and plated back together. He thinks could eliminate the problem, but if I continue to have problems then a re-RPAO would be a last resort to readjust the acetabulum.

I was in SHOCK! After everything, now I find out that my femur is twisted! It is more rare than hip dysplasia. Hip dysplasia is 1 in 1000 and femoral retroversion or anteversion is like 1 in 5000. Also, because of my current issues and medical history, Dr. Millis wants me to get some genetic testing done for a connective tissue disorder such as, Ehlers Danlos Syndrome. It might explain a lot of the problems such as poor wound healing, the rare issues, etc. I am also going to a pain clinic to deal with the increased nerve problems, pain management and to see a pain psychologist. I got slammed with so much information to digest. I didn't even know what to say in response. Lastly, Dr. Millis wanted me to go back to Dr. Maiers for an extensive physical exam and to review the op notes from Jan, as well as the imaging. He wanted to see what he thought, if he agreed and then we would all get together to discuss the game plan.

I see Dr. Maiers tomorrow and will hopefully know more and be able to schedule my Femoral Osteotomy at CHB and be one step closer to a better hip/leg. Updates will follow!!!

Me, Dr. Maiers, Jess & Randy