Today I have been at the Nuffield Orthopaedic Centre in Oxford recieving treatment for the Fibrous Dysplasia in my arm that caused this break in the first place.
Basically this involved a Zoledronate infusion, which sounds way more exciting than it actually is, and involved me being hooked up to a drip for 15 minutes while they pumped me full of aforementioned drug. This should solve the problem of the Fibrous Dysplasia by slowing down bone remodelling in my arm, i.e. inhibiting the cells that break down the bone, and allowing those that rebuild bone to work more effectively. There is also a bonus effect- it should make my break heal quicker...
Really it is a pretty harmless drug, and the only side effects tend to be flu-like symptoms, which so far I am not experiencing. It does however mean I need to increase my calcium intake- which is great! It is now better for me medically to eat more cheese, chocolate and creamy things and to drink plenty of Nesquik!
Now all that is left treatment-wise is straight forward fracture based and hopefully some physio too. At this point I'm praying nothing else will go wrong, but already I'm worried my treatment has fallen into some administrative limbo between Oxford and Swansea, so will be on the phone on Monday kicking some consultant's secretary butt!
In the mean time I'm travelling back to Swansea tonight and will be spending the weekend stripping wallpaper in our living room. Good times....!
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4 comments:
Some random thoughts I had while reading your blog...
...'Infusion' makes it sound like a herbal tea...
...Nesquick is made by Nestle and therefore to be avoided, Crusha is better anyway...
...are you sure stripping wallpaper helps the healing process?
Anyway glad to hear you're on the mend and free of side effects. Take care :)
Hi, Graham!
Just checking in to see how you are doing. I'm glad you're recovery is moving along.
I have some info I'd like to share. I watched a 2006 NIH medical presentation on MAS and FD. I.V. Bisphosphonate infusions seem to work great in releiving bone pain. It also stated to avoid bad flu-like symptoms to pretreat with 40mg (per adult) Prednisone. This should only happen within the first or secong infusion...After that this side effect shouldn't happen. A friend's son also takes Pamidronate Infusions and I believe they just give him Tylenol. You might ask your doctor about this.
These disks can be ordered for a donation of $10 (suggested) at www.fibrousdysplasia.org. They also cover much about all aspects of FD.
Keep feeling better and we'll keep praying for you! Take care and God Bless-
Tanya (mom to Lauren MAS/FD)
Hi, Graham!
I found an entry I posted on our blog last fall, regarding IV infusions and thought it might be helpful.
If you'd like, please visit www.laurenourbravelittlehero.blogspot.com and search the archives for the Sunday, September 28, 2008 entry. It's titled "OJRD: Treatment of FD with Bisphosphonates". Hope it helps.
Stay strong and God Bless-
Hi Tanya!
Thanks for checking in, and linking into your blog- I've found it really helpful, not really knowing that much about FD, beyond what the doctors have told me. Turns out I did get pretty bad side effects, just like you described in your September 28th entry. I've been taking paracetamol which helps a bit! Thankfully they *seem* to be dying down now which is good!
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