Patience and Waiting, Waiting and Patience

Two things that don't come easy for me. I haven't heard anything yet from the doctor. I don't want to constantly call since it is long distance. So I am trying to be patient and wait it out. But I just want a call. I am a little impatient. I have been having bad days emotionally. I wouldn't mind another baby but I would like to have the surgery also. And when I feel like I have psyched myself into waiting for a baby then I go church and a couple come and sit in the same pew as me with their tiny newborn So it doesn't help me when I see newborn babies at church or when relatives of mine are announcing the wonderful news that they are expecting. I have my moments when I want a baby now and do surgery later. I do get frustrated with this because I just want to do something besides wait. I guess if we had a baby first then surgery, I would definitely want to get the pediatricians approval with breastfeeding after surgery. In all honestly I don't know what I want to do. In Katie's world, this is how it would go: Get pregnant now and have the baby due in the fall, surgery at the beginning of next year, and then my second surgery at the end of the same year. Yes that is how I would like to ultimately like it to go. But that is Katie's world and now for reality. Here is really how it should go. Wait for the baby and do surgery first. So for now I will just keep doing what I am doing... WAIT and work on being PATIENT.

A Little Forgetful

As I have written in my first blog, I thought that it was in 2000 when I first went seeking info. and on top of that I thought it was my right hip bothering me more. Well yesterday, after dropping my oldest daughter off at dance, we rushed back to the other side of town to pickup some more office notes about my very first visit with the ortho. so I could fax to the doctor in Boston. On the way home I was reading through the reports, it was interesting to have my memory jogged like that. I thought I would remember my visits. But I didn't as well as I thought. First it was actually my left hip bothering more at the time. And when my mother and I went to see the two doctors, the first doctor, I guess, mentioned something about the procedure, which I can really only remember something about bone and surgery and correcting the problem to make me feel better. I honestly can't recall much except he was referring us the ped. ortho. doc. And what i remember from that visit was he thought I had multiple epipyseal dysplasia, wanted x rays of my knees and I couldn't take celebrex. But after reading his notes he wanted my knees x rayed to confirm his diagnosis. I never did get those x rays because I must have started back to school and just got busy. And plus there wasn't anything that could be done or that is what came across to me at the time. And now for the the really funny forgetful part...I didn't see these doctors in 2000 but 2002. How does one forget something like that. I have no idea. But let me clue you, it is embarrassing. And I have been thinking a lot about this forgetting and sort of came to conclusion, that I must deal with the present and deal with the hurt as it happens and then get on with my life once I feel "normal". I must admit that reading the office notes is kind of interesting. Now that I am up to date with the correct facts i feel a bit goofy for forgetting. I suppose this scenario could be something like having morning sickness that lasts for the first 5 months of pregnancy or giving birth naturally without an epidural, and then forgetting about it and doing it all over again.

To PAO or Not to PAO- That is the Question

After the consultation, my husband found this wonderful support group on yahoo- hipwomen. If anyone is ever diagnosed with hip dysplasia I highly recommended this groups. The women on there are terrific and so very supportive. At first I felt funny postings a comment but once I did I received some many responses from the groups all so heart warming.
I knew that I still wanted to meet another surgeon. This just gives a chance to see who I feel the most comfortable with. That entire week after the consultation, I was on the computer researching everything I could find about the surgery and recovery, worse case scenarios, etc. I did come across the blog about a lady who was actually currently going through the process. She had her first surgery done in March 2009 and her second in November 2009 by a Dr. Millis in Boston. I thought that was amazing to read an actaul story and that really helped me out mentally to know that it really does work. And still to this day I find following other blogs have helped me out the most in deciding what to do. I believe that the PAO is the answer. Because if I don't do it I am only going to get worse and fast where as the surgery could at least postpone it or better yet be lifetime. I personally am hoping for the latter but either will do. Just the thought of my right hip feeling like it is going to give out makes me happy.
So my other problem ended up being is that I still wanted to meet with one more doctor. And I asked others on yahoo about recommendations. Dr. Millis was mentioned. So I thought I would research him. And I found positive comments on him. He has also done 800 plus PAO's. That to me was making me want to see him. I mean if I am going to travel by golly I want a terrific surgeon and I will find him. So while doing research I came across two more blogs and can you guess... Dr. Millis was their surgeon. Wow this doctor seems to be pretty darn amazing but I should see him.
And that is where I am at now sending my x rays to him to have him review. I am hoping that I do hear back from him. He just seems to be amazing. And to me that would mean a lot to me, especially since I must wait to have another baby.

Mayo Clinic Consultation

It didn't take long at all once I received an appt. for Nov. 30,2009. I must admit that traveling to Minnesota was going to be mini vacation. We left (husband, youngest two kids, and my parents) early Sunday morning, around 230 am. We left that early so that we could hopefully arrive there by 100 pm to shop at the Mall of America, which by the way is the 3rd largest mall in the world the other two being in Japan and Canada. And it was HUGE! There was even an indoor amusement park. I did get a new American Girl doll out of it all (Felicity). But enough about shopping and on to the consultation now.
I had to checking with admissions at 1130 am on Monday. This was to make sure that they had all the info. they needed, which they did. So then we had time to spare before I had to go to get my hips xrayed. To waste time me and hubby went to go get icecream at DQ. Yum. I nice treat before meeting with the Doc. After prolonging icecream for as long as possible, we went to the xray dept. And they gave me a pager that beeped when it was our turn. While waiting for that they had in the center of dept. computers, tv, brochures, etc. Kind of cool. My pager didn't take long. We had to wait in a little room until the patient ahead of me was done. They had a small tv in that room. And I believe we watched the disney channel. I guess that could be because that is the channel the kids watch at home. And they have funny shows. Any way once it was my time, the tech. took 5 different poses. Looked at them to make sure they were good, which they were. And then we waited again with the pager. That didn't take long either before it went off. I met at first with a Dr. Sisco. He looked at the x rays asked some questions, had me walk and did some different range of motions (rom). He then asked if we were going to be in town for another day, which we weren't but we could make it happen if need be. So he stepped out to see what he could do.
Before I knew it we then seeing another doctor. This time a Dr. Sierra. Again we received another pager. But again we didn't have to wait long. This time his PA or resident, not sure which, came in and asked me some questions. Left and then Dr. Sierra, his PA/resident, and and intern came in, all young too. Dr. Sierra did also some ROM with my hips and had me walk. He aked if that is how i always walked. He said I had dysplasia and that he gave me no longer than 2 yrs. He said that I am too young for THR and that if I wait too long to do the PAO there is a chance then it won't work. He also said that there was no guarantee that in the future I wouldn't need a THR. I asked where the scar would be. And he kindly took my pen and drew it on me. Yes I dread the thought on a scar. I mean I have had 5 kids and no stretch marks. So the idea of a scar is terrifying. I feel like it would bother me to look into the mirror and have that self image make me sad. But anyway I can talk about that later. We did ask how long he is booked out for surgery and at that time it was Feb. So after the consultation we met up with my parents in the lobby. I explained a little about what I was told to them. And then we walked to the car and left for the 9 hr. trip home.
On the car ride home I talked about the consultation. My dad was hesitant about cutting of the bones and at that time was pretty darn unsure, even though in the end it is my choice. I then also became really sad and fought off the tears because I was hoping the doctor would say I could wait for a while but he didn't. And as crazy as this sounds I actually do want more kids. And I love them close. They keep busy but it is worth it. I just loving being a mommy. It is something I feel like I am good at. Anyway, I was sad because I was hoping that we could have another baby before having to do the surgery. But I knew deep down inside me that I needed to do the surgery first and then think about more children. As a mother I need to be able to keep up them and I sure don't like that feeling of my hip giving out. Oh and before I forget both doctors said to get the kids x rayed. One said all the other said the girls since this is more common is girls.
After the consultation and the long ride home I just felt confused and overwhelmed. I didn't know what to do. I guess part of me felt disappointed and I don't know why.

The Beginning of My Story

I have been diagnosed with having Congenital Hip Dysplasia. I have had this since birth. But to get to the diagnosis wasn't so easy.
I can remember in high school my right hip bothering me. I don't know why. I assumed it was because I had what my dad had. I never looked into until the year 2000. Why? Because my right hip was really starting to hurt more. A couple of my close friends would ask if I hurt myself because I would limp. Sometimes I would notice it other times I felt "normal" even though I know I didn't ever walk normal. Which made me feel a little out of place. But I didn't let me get down much. Anyway in 2000 I went to see my primary care doctor (pcp) and he ordered an MRI and X-rays of my hips. And then referred me to an adult orthopedic specialists. He looked at both and explained what he could do. But at the end of the consultation he didn't feel comfortable doing anything so he then referred me on to a pediatric ortho. specialists. He then said I had multiple epipyseal dysplasia and I could take celebrex for the pain but that I was to young for hip surgery (THR). Well at the time I was breastfeeding and couldn't take that either. So I left his office figuring there was nothing else to do and left it at that.
Which brings us to now. While I was pregnant with our 5th child, I noticed that my right hip would on occasion feel like it was just going to give out. I blamed it on being pregnant. But after I had her, I noticed that it didn't go away and that I was having that feeling more often. My right hip pain was on and off. But somedays when it hurt IT HURT! So I called my PCP and he took some more x rays. This time he noticed that I had a decrease in cartilage which he found rare because I was so young (only 28). He referred me to a different ortho (the other left the state to practice elsewhere). This doctor actually gave me a more detailed diagnosis of acetabular dysplasia secondary to arthritis and that BOTH hips are affected and that lefty is worse than grumpy righty. He then went over non surgical and surgical options with me. A periacetabular osteomony is the procedure to correct my hips, meaning they cut my hip bone in three spots and rotate it to give the femur head the correct coverage. But he said that the closest doctor is in St. Louis. Let my tell you that I left that appt. stone faced. I didn't know what to think. I mean at least now I know that I am not wierd and that this was all in my head but wow cut my bones in three spots and on top of that have to travel out of state for this. So I left that appt. went home and researched the surgery. I decided that I needed to meet at least a couple of surgeons who actually do the surgery. This would really help me out because they would give me the best info. And that is what I did. My doctor here in town recommended a Clohisy, another name (can't recall) and then any doc at the Mayo Clinic. Clohisy wasn't covered by our insurance and either was the other doc. But the Mayo Clinic was. I called them and gave them all my info. And then after that all I had to do was wait for an appt. And I will stop here and post that on a new section.