Tuesday, March 16, 2010

Not what I wanted to hear............

Well........ today did not turn out like I had hoped.  My hope was that I was going to be able to go into Dr. Santore's office...... he would look at my X-rays and say " Yep.... I can fix you with a PAO...... lets do this!"....... haha..... thats not exactly what came out of his mouth.  Turns out I have more problems than I knew I had...... I not only have dysplasia, I also have Femoral Acetabular Impingement (FAI) of both the Cam and the Pincer on both hips, and he is also pretty sure that I have some labral tears.  He basically said that he doesn't know how to fix me.........  He said that its not a clear cut case, with a clear cut solution..... usually when somebody has limited range of motion in the front or the back, they are pretty open in the other area, so that he's able to do a PAO and he has room to move the pelvic around into a better position to get the desired range of motion......... well that's not my case..... I am both too tight in the front and the back...... so he has no room to play around with and move my pelvis anywhere..... if he moved it back to open the front, that would make it to where i can't move my leg backwards at all, and vise versa in the front.  He also said that I am abnormally flat footed, especially in my left foot...... so that is also causing some issues as well.  He doesn't want to do one surgery that is just going to cause or worsen other problems, so he's kinda baffled at this time. While doing his range of motion tests, my hip popped a few times on the left, and he had his assistant mark it down as a "one" ...... and then he moved to my right hip... it popped so loud that he jumped back! haha! he said " Woah! Write that down as a Three! You can hear that all the way from across the room!" ....... and then he was doing a certain range of motion with my right and it popped... he did it again.. it popped... he did it again and it popped... then he says " Yep... did it three times... popped three times"  haha!!  He was making sure that it wasn't just a fluke the first time apparently... I think you had to be there to see how funny of a little bald guy he is! :)    He wants me to get a CT and an MRA done so that he can get a better picture of my bone structure and so that he can confirm the labral tears.  All of this is NOT what I wanted to hear :(    One good thing that I got out of this appointment was some validation....... halfway through the exam after hearing he's not sure how to fix me I started crying... I felt so stupid, I didn't want to cry.......... but I just couldn't help it.  I am just SO TIRED of being in pain everyday and all I want to do is be able to go to the mall with my mom and sister, I want to be able to do some photography trips with my dad,  I want to be able to hold my baby nephew without feeling like my hips are going to give out on me, I want to be able to walk, and run, and hike like I used to without pain...... i just want to LIVE MY LIFE again......... so as I was wiping tears from my eyes Dr. Santore said "  You have a real problem here, these are real issues.... they aren't just in your head" ........... THAT is what I have been waiting to hear for YEARS........ I knew that it was not just in my head.... that my pain is real...... but after years and years of getting told that it's in your head and nobody really understanding how much pain you're in, it really does start getting to your head and start to make you feel so lost and so alone.

So that's where I am right now in this very long, painful, and tiring journey..... I will follow up with Dr. Ezzet, who is the one who referred me to Dr. Santore, as Dr. Santore said he was going to email Dr. Ezzet and have him request the CT and the MRA because he is in my medical plan so I SHOULDN'T have a problem with them approving the tests.

That's it for tonight.......... im emotionally drained, sore from being bent and moved and adjusted and tortured for 30 minutes.... and honestly just kinda out of words.  I really wanted to be able to come and write and tell you guys that everything went GREAT! .......... but it didn't........ I at least have more information than I went in with because I didn't know about the FAI........ I had suspected and was not surprised about the labral tears..... but the FAI threw me...... so I think im just still trying to take everything in and I need time to re-adjust my mindset on still having to go through more testing and appointments.   Thank you guys for all of your support!!!   I couldn't go through this without the love and support of my friends and family... and especially my Hip Chicks!!  I love you guys! xoxoxo

7 comments:

  1. Hey girl...
    First, sorry to hear that it did not go as you hoped... And it stinks that you have all the problems you have. BUT - the good thing is that all these problems were discovered now. And that it's just the beginning of the road, which will end in the successful recovery, no matter how hard the road will be. But Krystal, who said it is going to be easy? You were persistent enough to get to see Dr. Santore, and he will find a way to fix you, he just needs some thinking to do and look at the tests. But it's all good because now you are not going to be in pain and think about what it is - you are going to work on fixing it! Could have been much worse if you didn't get to see him at all, or if you had to wait another few months for it... right?
    I myself hate the fake positivity and the "everything's going to be allright" stuff, and I've heard it so many times - and many times it was coming out of nowhere. But I think that after your appt you will "sleep on it" - and realize that it's really not that bad. Because you did it. And you are cool, and amazing, and hip chicks love you and cheer for you, and we are all in this together and will get through it... Cause we rock, and you ROCK (although your hips pop, but that will change, and soon=)!
    Hang in there Krystal.
    Oh and one more thing. Never feel that you are stupid. You are not. And when you feel like crying, just let it all out and cry, it just makes it all so much better.
    If you ever feel like venting or talking or whatever, please feel free to email me, or call, whatever you wish.

    Arpine

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  2. You aren't stupid! And never think that of yourself. You are a bright girl and a fighter. Look at where it has gotten you. You have seen a doctor that has diagnosed you and told you that the pain is so very real. And you take the time to cry. It is such a big disappointment when we don't hear what we were expecting believe me it has happended many times to me. The doctor will figure out what to do. Just try to take one step at a time. Get the CT and MRA done and maybe the doctor will know what better to do.
    Krystal you are strong, you have fought for this. And you are going through to get through this. We hip chicks are all here for. We love and will support you through this whole thing. We are your backbone when you feel like falling. We will never leave your side. And you vent all you need too. But never call yourself stupid. Hang in there and take one step at a time and you will get yourself to the end of this journey and be on your way to that life you so long desire! Sending you all my hugs and support!

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  3. Krystal:

    You are in he best of hands for this. I just heard from my second opinion doctor and he wants a couple different x-rays, but mainly I am with you. Some surgery will make it worse, so I will be going in to get the x-rays and talk about my options. It may be a THR. We are at the same phase, so hang in there and I will hang in there. Please know that you starting this site has been a GODSEND! Arpine is correct!, YOU ROCK!

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  4. Just caught up on here.... Thinking of your dear.

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  5. Hey Krystal, at least now you seem to have a doctor that knows how to really figure out how to fix you. And he's not just rushing into the surgery without being convinced it'll help you. It really sounds like you finally have the right person looking into your case. I know it's hard, but keep your chin up, he sounds like he'll be able to figure out something to help you.

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  6. You continue to amaze me with your strength girl! You know you're in great hands and the waiting for the tests is going to be hard, especially when you want answers now. It's all going to happen as it's meant to but unfortunately just not at the speed you want it to. I am praying everyday that you get those scans done soon!!!!! xoxo

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  7. Krystal, Just know that although this is not what you wanted to hear, and you are nowhere near having all the answers you need, knowledge is power, and even a little bit is progress. It sounds like you have been going through a lot, but you have some amazing endurance, persistence and strength to get to this point. BTW I cried when I first saw Dr. Santore too!! YOU ARE NOT ALONE, my friend. You have been through a lot and you are allowed. Take a breathe, take one day, step, at a time! Thank you for creating the forum for all of us hipchicks, who will be all there for you. I hope you get your tests quickly, reviewed expeditiously and that Dr. Santore has the wisdom and urgency to take care of you girl! Hang in there, xoxo Marianna

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