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stephie33

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47
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Boston, MA
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Hi everyone!

I'm Stephanie just turned 40 in January and apparently my body only came with a 40 year warranty because one month before my birthday everything went kaput! I keep telling my parents they should have opted for an extended care plan and I wouldn't be in this situation. [emoji5]

At any rate, in late November I got incredibly ill. Fever, severe muscle and joint pain and fatigue, brain fog and fever on and off. I was referred to rheumatology at a reputable hospital but it took the doc almost two months to discover that my symptoms were being caused by a recent Parvo exposure. I was diagnosed with Fifths Disease or Parvo-B19. Most people only have it briefly and have few symptoms if any. I am one of the lucky 15-20% who seem to have it chronically.

Prior to this discovery I mentioned to this doc that my left hip was killing me. The doc did an x-ray and we learned that I had avascular necrosis. I had no idea what it was and we still don't know what caused it. I saw a OS at that same hospital who ordered an MRI arthrogram. He got the results and told me that I needed to follow up with my PCP and call him in 3 months so that he could re-evaluate. I was not happy with this and sought a second opinion. This OS says that I have stage one AVN and am too young for a hip replacement but that a core decompression most likely help with the pain.

So here we are...fighting Fifths Disease and drilling holes in my hip in hopes that it will alleviate the left hip pain. I haven't been to work since the Monday after Thanksgiving and I work at a university so it looks like I'll be out the rest of the school year with recovery and whatnot. I have the summer off so I'll be able to rest as much as I need to.

My procedure is scheduled for April 12th though at this point I'm thinking...I have a drill in my toolbox and am debating taking my chances. The pain is unreal and if this is stage one I want no parts of any of the other stages! I believe that my right hip might be a bit jealous because it's starting to hurt in the past week. What fun!!

Looking forward to learning from and rooting for my fellow hippies. [emoji1479]



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Hi, Stephie....welcome to BoneSmart. My goodness, you have been through the wringer these last months! I'm so sorry. But it's obvious you are a fighter and that's going to help you with these challenges.

Have either of the surgeons you've seen been with the orthopedic department at Mass General Hospital there in Boston? The reason I ask is because you may want to seek yet another opinion. You actually are not "too young" for a hip replacement at all. In fact, we have several teenagers here on the forum now who have AVN and are getting their hips replaced. The core decompression really doesn't have a very good track record and, given your other health issues you really don't want to be just "trying" things to see if it will work.
 
I agree with Jamie - find a surgeon who is more up to date with this surgery. Saying you are too young is very old school thinkings. There are many surgeon's who are now specialising in younger, more active patients. You really don't want a temporary fix when there is a permanent solution.
 
@Jamie @Jaycey since being on this forum I've seen a lot of younger folks having hips replaced. I'm definitely thinking more about it. I have also heard that it's more old school thinking which is surprising as my OS is quite young himself. He mentioned me being in stage 1 of AVN as part of the reason for the core decompression over the replacement. Being familiar with insurance companies I am wondering if there is an issue with the insurance company not paying due to the stage of my diagnosis? I'll inquire though.

I started at Brigham and women's and moved to Tufts where my PCP is located.

Part of the problem is that I'm so tired with the Fifths Disease and other's that I don't have energy for much I'm averaging 2-3 appointments per week with medical care. Lots going on and lots to think about. I'll post back with an update!

Have either of you had personal experience with core decompression?


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I have not had personal experience with CD. But if you click this link it should take you to a page in the hip recovery area exclusively members who have had CD. Many are no longer posting. But you can get an idea about their journeys by reading their threads.
 
I've not had personal experience with a bad hip. But Jaycey gave you an excellent link to check out. I would be surprised if your insurance had a requirement to get this done before a hip replacement could be done. But you're wise to check just to be sure.
 
Thanks for sharing your experiences with me. I clicked the link but only saw people talking about the benefit of hip replacement surgery. I'll do a search for CD thanks for the recommendations and the insights!


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If you go to the Hip Recovery area and find a thread title with the grey prefix for CD - then click on that prefix. You will get every thread related to CD in our recovery area. Happy reading!
 
Hi @stephie33 , I wanted to send you some good vibes. It can be draining when you are in pain and are having to see drs, make decisions and so on. Ugh, I remember it clearly. I cannot comment on CD's as I've not had one (had OA) though the recovery may be longer and many seem to get a thr later on anyway. See as many OSs as needed to make an informed decision that feels good to you. There was a recent member here who had one, her name is danabanana, put her name in the search bar and you can read her thread, click on the gray box "core decompression" and you'll get a list of others and their experiences.

Agree about the youth issue, it's old style thinking. I was told the same thing, unfortunately, which simply delayed the inevitable and for me, wasted valuable time that was spent in pain, hips were getting worse, not better!
 
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@Horseshoe thank you so much for the good vibes! I really appreciate it and your thoughts. I'm trying to keep a positive attitude. But some days it's hard juggling primary care, GI, rheumatology and orthopedics while not feeling so hot.

I'm going to see my OS tomorrow so I'll check in with him on options. Ironically enough I had very little hip pain today. Like for once I could ignore it for the first time in months.



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Hi Stephie33,
I don't have a lot of time to write now, but wanted to let you know that there is some research that suggests that CD is most effective in early stages of AVN. I had CD with stem cell implantation in December, and I am healing nicely. For myself, I did not want to have the first procedure I try as being replacement. To date, I am glad that is the path that I chose, but every body and every surgeon is different and you must seek information from multiple places and decide for yourself. Since you are in Boston, check MGH. I have read about orthos there, and if you want to research, at least one does CD with stem cells. I'm rushing now, but will check back as soon as I can.
Take care,
Youch!
 
@Youch! Thanks for your message. I'm actually waiting to get a call back from my OS now. We've been playing phone tag but so far he's open to us talking about what the best option is... Which is a relief.

I was diagnosed at the end of December and only had little bits of pain here and there in the left. In four months it's graduated to severe constant pain in the left and in the last week my right hip has started to hurt as well.

Since the progression of AVN is unpredictable and my pain has picked up significantly in just four months I'm leaning towards wanting to be as aggressive as possible. I know it will be challenging but I'm determined to get my life back. I work at a university and have my summers off so I'll have plenty of time to heal and hopefully get back to some normalcy.

Would love to chat with you more when you have some time! Thanks so much for the message again!!
[emoji171]


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Stephie33-Wonderful to hear from you about your thoughts, and I'm confident you are making the proper choice for you. Inevitably along the way through this type of illness and recovery come thoughts, questions, and things you are dying to chat about with someone who gets it! Or at least knows something about it! This is just the spot to visit during those occasions.
Wishing you well,
Youch!
 
@Youch! I had the talk with my surgeon and decided to go for the CD with marrow aspiration! I shared my concerns with my OS and feel like it's the best option for what I have going on now at such an early stage. You're right the research shows that for early stage AVN it has a good chance of working.

There's always a chance that things will go to pot but that's a chance I'm willing to take. I hope to be able to slow this thing down and follow in your hip steps with a great outcome!

I'm curious about your diagnosis and recovery. Will do a search for your thread here.

Thanks for sharing your thoughts on the CD!


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Hi Stephie33,
Great news! I'm wishing you well! When is your surgery? I will post an update on my recovery this weekend. Things are going well, but I'm not yet 100%.
Take care,
Youch!
 
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