my life as it unfolds..

This is basically a copy/paste from what I wrote in my daily Runners World thread this morning, so I apologize if you already read, but it’s definitely time for an update. And don’t say I didn’t warn you – this is a novel:

I haven’t posted much this last week because between class, homework, work, and doctors appointments there has been literally NO time. AND the fact that I talking about this whole hip mess when things are still up in the air just makes me 10x more stressed. When I’m not for sure about what’s going to happen, that’s when things go downhill. 

Well.. now it’s [for the most part] for sure – when I go home at christmas I’m going to have surgery. “For the most part” because now the doctors and I have to decide WHICH surgery I’m going to have. The less invasive option (#1) would be to place pins running through my femoral neck to stabilize the area of fibrous dysplasia. The more intensive option (#2) would be to completely cut my femur all the way through, and reposition it to fix the angle that it has deformed into over the years (from the FD). There would also have to be plates put in to keep the area solid. 

Surgery #1 would take less recovery time, but without fixing that angle of my femoral neck there’s chance of refracturing, and I will still most likely always limp. 

Surgery #2 is a longer healing process, but maybe it would be better in the long run?

I only have a 2 week christmas break, but I’m thinking I’ll be able to go home a week early because none of my professors decided to have their finals during actual FINALS week. SO, hopefully I’ll be able to get out of my one Friday class which would be the 12th of December, fly home the 11th (Thurs), have surgery the next day, and have until the 4th of January when I need to be back. Of course all of this depends on whether or not the surgeon can do it at that time too. 

There is just so much “unknown” in this situation.. and for someone as type A as me, that’s really hard. I want to know that if I have surgery #1, it’s going to last in the long run. I want to know if I do surgery #2, I’ll be able to run again. And I don’t just want to run again. I was never just an “average” runner. I raced. I did marathons. I was part of a team.

The orthopedic surgeon that I’m working with here is amazing. He’s apparently the best in Boston for orthopedic surgery, and more specifically, for hips. He came in yesterday (Saturday MORNING) and talked with me for almost FOUR hours, when Children’s doesn’t even operate on the weekends! We were like the only ones there aside from some other employees! He gets that I don’t want to just “run”, and he wants to do everything possible to make that an option. I’m just scared now because he wont be the actual one doing the surgery. The surgeon back in MN is the chief in the department of orthopedic surgery at the University of MN, and he has tons of accreditations to his name. My doctor HERE has even worked with him before, and he attests that he’s a great guy. I just get scared that he’ll have a different attitude with me – a lot of people have given me the eye roll when I talk about returning to running again.

I do realize that I may need to readjust my expectations. It may not be possible that I can ever run distance again. I may never be able to race again. Let’s be real – I may never even be able to run again. But there are a lot of people out there who have it worse than I do right now. It’s not like they need to amputate my leg, I’m not going to die from this, it’s not cancer, etc. I’m just sortof in this whirlwind right now of the anticipation of surgery (even though its like 40 days away) and the uncertainty of what my life will be like after this. I have no clue.

My doctor sent me home with some goodies:

It’s pretty easy to see the area that is fibrous dysplasia on my left side. It’s that whole encircled section.

You can see it here too. Children’s has their own photo viewing software, but it’s made for PCs so trying to run it through Parallels on my mac is giving me a headache. If I figure it out more later on I’ll get more posted, but right now I have a buttload of work to do today, so I should get started on it. Hope everyone had a nice weekend. I’ll hopefully be back soon!

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13 Responses

  1. Hi!

    I’m part of the runner’s world forums…and I am SO sorry you are going through this.

    I lost running for nearly four years due to a chronic nerve entrapment disorder. I know how much it sucks to want to run – and you can’t. And right now, ALL you want to do is run, I’d bet.

    All I can tell you is to get through this you need a team of people who really believe you’ll run again. You need docs, orthos, chiros, therapists, friends, & family who BELIEVE. Thats what I had – after searching and wondering an feeling like my identity as a runner was gone. I develped a cracker jack team who believed and got me up and running again. It sounds like that ortho is a keeper 🙂

    So, good luck and think big. Think postitive. I hope in the next year or two this will have been a big “hiccup” in your running career.

    A “hiccup” would be nice. Really nice. I’m hopeful that my doctor back in MPLS will be just as optimistic and gung-ho about getting back to running as my doctor here (and ME!!), and if he’s not, well I’ll have to find someone who is. Staying on the RW forums helps me think that I WILL be coming back to this, and it really helps to hear stories like yours to know that it’s a possibility. Thank you so much for the encouraging words.

  2. BIG HUG sperly! You will make it through just fine I bet.

    Thanks Grace – it’s so good to have all you guys over at RW for support. Even though I’m obvi not running right now I’m still gonna be with you guys every morning!

  3. Oh Sperl. Oh honey. *hugs*

    You can get through this!!!! You are my freaking inspiration for running!!!! You can do this, girl. You’re a BAMF!!!! You give me the courage to go out and be a BAMF!!!!!!!!!!!!

    I’m going to be praying hard for you. Keep us posted!!! I am not slacking on RW/blogging anymore!!! You guys are too important to me!!

    *hugs*

    Go sperl, go!!!

    Haha Court.. you made me cry! You honestly don’t know how much it means to me to hear stuff like that. I’m gonna work as hard as I can to get back out there. Maybe a regular person would stop running.. but BAMFs like us never stop. 😉

  4. woah sperly this really sucks…!!!

    *sending many hugs your way*

    you WILL run again. just like you said, this is just a bump in the road, its not cancer, your not going to die, you;ll get through it. i garuntee you will run again. whos gonna be around to kick my butt? if you need anything at all, don’t even hesitate to send me a pm, email, comment blog, or whatever. just remember… your a bamf! 🙂

    You’re already faster than me by now for sure, but I’d love to be back at it trying to catch up. Thanks for all the support Matt 🙂

  5. Ah Erika this whole situation sucks so much for you… You are SO strong to be able to push on through. You’re such a talented runner, and I’m sure that drive will get you back running after surgery! Its horrible that such a bad setback had to come your way, but you are an inspiring person and you’ll make it!!! I’m pulling for you!

    Thanks so much Andrea – right now I’ll take every bit of support I can get! It means a lot.

  6. ::hugs:: ::prayers:: ::love::

    Ugh.. I’m waiting for a REAL hug once you get out here. Counting down the days!

  7. Hey, I have monostotic FD also. When I was ~27 I had surgery to “scrape it out” and put a gamma nail in, and a bone graft (donated) to fill in the window where they scraped.

    While I’m better than I was before the surgery, there is still pain though I am not sure if it’s from the gamma nail or from the bone, or a mix. Running for me is uncomfortable, but I still manage to do workouts including squats and deadlifts, although not with much weight.

    Since you are considering plates, I would hit your university library and check out pubmed to see what the research has to say, but it does sound like you’re in good hands with your care.

    Whatever direction you go, it’s not fun but as you stated, it helps to keep in mind that there’s a lot of people who have it much worse than you or I do (even reading about folks with polyostotic FD breaks my heart). Best wishes to you.

    Dave

    Dave – at this point a bone graft hasn’t been recommended, and I haven’t heard anything about using a gamma nail. They do want to take a biopsy, but I also haven’t heard anything about them scraping out the area of FD.

    Its good to hear that you’re still able to be active after surgery. I tried searching “fibrous dysplasia” and “athletes”, and got little to no return (at least not in what I was looking for). I’m trying to be optimistic about a return to running, but at the same time also trying to prepare for needing a change of plans. I’ll definitely keep updating as this continues.

  8. I wish you nothing but the best and am so sorry that you are dealing with such a tough decision. I’m glad you have a doctor on your side and that you are keeping such a positive outlook through it all – it’s really inspiring. I’ll be thinking of you.

    Thanks for the kind words. It definitely helps to have people pulling for me!

  9. i’m so glad you found such a great doctor. boston really does have some pretty amazing health-professionals. either way you’re going to ROCK rehab, and you’ll be so strong after.
    They really do – I considered staying here to have the surgery just because my doctor is so amazing, but I think I would be better off with the support of my family at home. Thanks for the encouraging words!

  10. I was shocked when I read your blog because I am going through pretty much the exact same thing as you right now. I have a fracture in my femoral neck and I’m using crutches. I’m also in college and I totally know what you mean when you say crutches such! I saw my orthopedist a few weeks ago and he said that right not the fracture is in a spot where it is not displaced but if I were to continue to run / walk on it, it would get displaced and I would need the same surgery that you are talking about (where they place rods in your hip).
    I also completely understand that you have higher expectations regarding running. I used to run A LOT and I’ve done a half marathon and then I got a stress fracture in my metatarsal last November/ December, followed by tendonitis in my ankle and now a femoral neck fracture!
    I know how hard this is and I totally get what you’re going through. Not being able to run is SO hard and sometimes I just can’t take it. I don’t know if this helps, but my mom always tells me that this isn’t permanent. It will pass. And even if you can’t run as much as you used to, you will be able to do something and who knows, maybe you’ll find something that you really like.
    Hang in there! I’m here if you ever need someone to talk to!

  11. Keep your hopes up Sperly, hope everything goes perfectly for you, as it should! We will be running the Charles again in no time, don kid yourself 🙂

  12. 😦 sorry

    try swimming!

  13. Hi there,

    I can empathise with your situation. as I also am a fairly keen runner, and was diagnosed with FD in my femoral shaft this summer. I had been having a few months of increasing thigh pain, made worse by long runs and speedwork.
    I am from the UK where I guess we are a bit more conservative about surgery, but I am following a ‘wait and see’ approach.
    At the moment I am running 2 sessions per week instead of 5, and substituting road and mountain-biking mainly as cross-training – this has helped, and the discomfort is now manageable.

    People will tell you not to run again, and do something else. I imagine you have also had that puzzled look when you tell them you want to get back. You just need to get some positive support from friends who understand what running means, and find a way of getting back.

    All the best

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