June 4, 2011

It took a long time to get a call from the doctor, mostly because the original bone scan was not done as ordered and the radiologist and surgeon needed to talk. Once they talked it was agreed that Sadie needed to re-do her bone scan with the original orders to get the best pictures of her ankle. The bone scan itself is not at all like an MRI, more like a CT scan with an opening therefore you are never "enclosed", but they take a long time and they had to put Sadie's ankle in very uncomfortable positions in which she was unable to hold them on her own so they would tape her foot this way or that. Each photo took 6 minutes, so imagine contorting in an uncomfortable way and then being made to hold still for 6 minutes all to do this over and over and over again for 1.5 hours! Sadie was glad the second one was over as it was not a lot of fun.

The second scan was done Thursday morning and Friday afternoon we heard from the surgeon, Dr. M. The good news... NO FUSION! Why? Well, they found the specific source of the problem and better yet there is a surgery to fix it. The not so good news... it is still a very big surgery with a big recovery time, but the fact that she doesn't have to have her joints fused and therefore she will retain her mobility is a very big praise!

Onto what is going to happen: Monday or Tuesday we will be scheduling surgery and the best way I can describe this is that Dr. M will reconstruct her ankle.

In a normal ankle you can see there is ligaments that hold together yet separates the calcaneus from the fibula. About a year and a half ago films showed that Sadie's calcaneus has shifted outward and this had caused the ligaments to stretch. Over time the calcaneus and the fibula acted more like a joint in itself, however in all films leading up to current (last were July 2010) there has always been a healthy space between the calcaneus and the fibula. On the screens done Thursday there is NO SPACE and the bones are completely touching and as the surgeon put it "causing most if not all of her current pain". Not only is the bone on bone issue causing her the pain, but her calcaneus seems to be the culprit as it appears it has shifted even further outward. The above picture is based on a ligament issue, but does give a good indication of what area is being talked about. However, what this picture doesn't show and what I can't find a good visual of is how far out her calcaneus has shifted. Most of what you can find online shows photos of the calcaneus shifting inward, but hers goes outward toward the outside of her foot.

The solution in 2 parts: 1) shave the area in which the bones are touching and causing the very painful impingement. 2) cut the heel bone, replace it in the correct area and screw it into place. The reason it is important for step 2 to happen is that it could shift again and cause the same issue AND the longer her heel bone is not aligned with the rest of the body the more likely it will be that she has continue issues. As Dr. M put it, your body wants to be in alignment - your shoulders to your hips, your hips to your knees, your knees to your heel. Sadie will have a few days in the hospital after the surgery which is slated to take close to 2 hours. She will then have 6-7 weeks in a cast followed by 2-3 weeks in a boot and then she should be home free. All that she should be starting school next year on a fresh foot (pun intended).

Dr. M was actually very excited that the films he requested showed the geometry of her ankle so clearly and he feels the geometry matches the biology and therefore he is very confident in his ability to help her through this surgery. The other thing he was very excited about was the fact from these bone scan films he was able to see that both her sub-taylor and her ankle joint look amazingly well considering and he feels if we can keep her arthritis under control... she may not need to have her ankle fused... ever! He said he couldn't promise, but that he was very happy with what he saw. As a doctor he did warn there is always a small chance this won't work and if that is the case and she is still dealing with pain fusion is something we can discuss down the line, but he said "once the joint is fused there is no going back, I feel much better about this option". Lastly, Dr. M said he really doesn't know how Sadie has been dealing with this pain and after looking at the films said that if that was his ankle he would have been screaming earlier to have this done because it is obviously a very painful situation. Sadie felt some relief knowing that there was someone who could clearly see what she has been feeling.

I hope that made some sense... it is very hard to explain, but I honestly feel really glad that there is an option outside of fusion. Keeping her mobility is a big deal. I have concerns about surgery and obviously will be praying that this works! The girl has paid her dues and it would be such a HUGE blessing to see her without pain!

I will update when I know the date of surgery.

Final note: Sadie has seen her rhematologist in between my last post and today's and the rest of her body is doing fantastic! To the point we lowered another med just a tiny bit!
Thanks for the continued support and prayers!