Third orthopedic specialist

Today we got to see Dr. Limoni, as referred by Dr. Schnaubelt last week. He was great.  He had already spoken with Dr. Schnaubelt and looked at her file and x-rays.  He cut right to the chase.

Dr. Limoni said we could go with fancy custom orthotics, but those would just be delaying the inevitable.  He said surgery would reconstruct her foot and realign her ankle.  It would remove the bunion she has as well. The tendons would also be adjusted as needed, with a possible plantar facssial loosening.  So she will be having 1st-5th metatarsal osteotomy, calcaneal osteotomy, and possible facssial loosening.  He said he doesn't feel she needs her calf muscle/tendon loosened, although there is some tightness there.

Because she is so young, recovery would be much better and easier for her.  The pins he may have to put in should be removable, as she should recover fully from the surgery.  The screw in her heel might need to stay there forever though.  She should not have any recurrence; however, it might move slightly as she gets older, in which case she would only need a simple orthotic insert.

He also prescribed a different medication for  her.  The naproxen did not work well for her; it gave her extreme upset stomach.  So he gave her an NSAID gel.  She has been through so much, I pray this surgery will finally cause her to be pain-free.

New orthopedic specialist

Today we saw a new orthopedic specialist.  He was great with Lily, but just as stumped as the others.  He didn't have any answers as to where her issues have stemmed from, but said there were a few things that could be done; however, he wants her to see his colleague who has more experience and surgery with special cases like Lily.

Dr. Schnaubelt gave Lily a prescription for naproxen, so hopefully that will help with the pain. He had two suggestions: a new type of custom orthotic that is more specific to pes cavus, and reconstructive surgery.  They would remove part of the heel and move the tendons/bones around to align them.

They took x-rays on both her ankles and feet today.  He compared her right foot x-ray today and the one she had done a year and a half ago.  He was really surprised at how high her arch was, and still is.  The arch has gone down some, but not enough.

 She is going to see Dr. Limoni on Thursday, when we will discuss more in depth options.  I am not sure which I'd rather do; try yet another orthotic, or just go to surgery.  We have seen so many doctors and tried so many different ankle/foot braces, including the other orthotic one, and none seem to help.  I'm beginning to thing surgery may be the only option.

The trouble with surgery is that she would have to be off her feet for several weeks, which would prevent her from being in the high school plays and musicals, which she absolutely LOVES  and lives for.  But if surgery is the route to go that will be best for her, we will go that way.

Still in pain

I'm sorry it's been a while, but there is no new developments.  Unfortunately Lily is still in pain.  She continues to do exercises that were recommended by her PT (although in my opinion she doesn't do them enough) and she is still in pain.

I am going to take her to a new orthopedic surgeon to see what he will do, and take a different route.  I am hurting that my daughter has to be in so much pain, and her pediatric orthopedic specialist/surgeon doesn't seem to want to do anything except throw her in orthotics.

Chiropractor

Lily's new chiropractor was very knowledgeable and give us lots of information, while also re-enforcing some information we already had.  He was able to do a type of ultrasound on her back muscles which were very tight, and after doing some things with her, they loosened up a lot.  He's hopeful that these muscles will all become stretched and perform how they are supposed to!

New chiropractor

Lily decided she wanted to try a chiropractor again.  So we found a new one in town, and I talked with the chiropractor there.  He sure seemed to know what he was talking about.  Hopefully this will be a step in the right direction and he can really help Lily out!

Forgot to post!

Lily was discharged from Dr. Edgar a few months ago (back in August),  She had improved greatly with her physical therapy, so he felt that she did not  have to go through any extended testing to figure out what was going on.  After he spoke with may specialists around the world, they were ready to send her to Mayo to do a lot of testing for hidden tumors.  He felt at this point there was no need for that, because if her issues were all being caused by tumors, she would not have improved with pt as she did.

Dr. Edgar and his colleagues believe that Lily may have what is know as 'arterio-venous malformation of the spine'.  It would not have shown up on her MRI of her spine because it is so small.  This could be the reason that she is having issues with hemiparesis, pes cavus,  back pain, hip pain, and limping.

Dr. McDougal, her pediatric orthopedic surgeon, saw Lily on the same day.  She is still concerned with Lily's foot, but agrees that there is not much to be done at this point except wear the orthotics.  Lily's bunion is still not doing well, but we were able to get to Hangar and have the plastic stretched so that the bunion isn't rubbing against it.  That does help; however, Lily still isn't keep on wearing her orthotics.

We did go to the Heel Store in Green Bay, and Lily was fitted with a great pair of shoes by a podorthist.  These really seem to help her, and she feels like her hips "work together" better.

Lily can't run a mile any more, as it causes too much pain.  She also can't swim laps, even just half the length of the pool as it hurts her hips.  She used to be such a great swimmer.  Her gym class is extremely challenging for her because she likes to do her best, and just isn't able to with this disability.