Okay, I'm a little scared and I don't scare easily.

[disneyjunebug]

I'm going to the specialist Tuesday morning. I don't know what he is going to say. I have been living with Avascular Necrosis for almost 10 years now in my ankle. I've had a partial fusion and 2 core decompressions and my Talus bone is still dying. My ortho doc says there is nothing else he can do, except give me meds (the last ones just caused me to gain 25 pounds in the past 4 weeks) and had me buy little gel pads to put in my shoes.

After much research, I found a specialist who specializes in post-traumatic reconstruction and does ankle replacements, among other things. Now I am scared that he will say I'm too young for one (I'll be 50 in October), or that there really is nothing that can be done and I have to wear a bledsoe boot for the rest of my life until my foot falls off.

I need to have something done. I've fallen several times because the joint keeps collapsing on me. And now my knee is starting to give me fits because the tibia and fibula are pulling on it as they slide into my ankle.

Thanks for letting me vent my fears. I'm trying to stay calm so that my 7 year old doesn't get upset. He just wants to go to Disneyworld in October and Momma wants to take him and make him happy (and me too!)

I've lived with this for a long time. It's the fallout from a car accident that I had almost 15 years ago, and if I have surgery again, it will be my 13th. I don't worry about the surgery, just getting the recovery done so that I can go to Disney or getting the word that nothing can be done and accepting that.

Thanks.

 

[SueM in MN]

Those are hard things to deal with.

One of the reasons they try to wait as long as possible for joint replacements is that the current ones have a limited life span and will need to be replaced at some time in the future. Each replacement, obviously requires a surgery and each time they remove an artificial joint for replacement, it makes some damage to the bone they are attaching too.
But, they also have to go by pain and what other options are available. Someone with little pain (or good pain relief) and little loss of function would wait longer than someone who has problems with both.

I think you will know a lot more after the visit to the specialist, so keep your hopes up until then. At least, you should have more answers. Some may be more radical than others, but it should give you some more options than just living the way you are now.

For WDW, you will want to look into renting an ECV - there is more information about that in post #2 of the disABILITIES FAQs thread near the top of this board (or follow the link in my signature to get there).

 

[kirstenb1]

Wow---I'm sorry you're having to deal with this. I feel like I can handle better when I do know exactly what's going on, when etc. I hope you get some answers, and you and your son can go on your upcoming vacation.

 

[cm8]

Not sure of how to answer your question, but just wanted to give you a and wish you and your son a happy and safe vacation. I hope your ankle issue gets taken care of before you leave

 

[hematite153]

Sorry you're having such a tough (and scary) time. I hope the specialist is able to help you out.

 

[disneyjunebug]

Thanks everyone! I'm worried about a lot of things, I guess. I've used an ECV, but only in EPCOT, so I've never rented one from an outside vender. I've always thought the other parks were smaller and I could handle walking with my boot at them. And I am making this trip by myself with my son, since my husband doesn't think he can get off work, and that's a little scary. If it was just me (I've done a solo trip many, many times with the leg problems), I wouldn't worry so much. But now I'm going to have a very active 7 year old who wants to see/do everything and momma probably can't do it all and I hate to disappoint him!

I'm also worrying about where to stay to make it easier. I would love to stay at the CR or BLT, but don't know if our budget will allow. With renting an EVC, will I need to get a Handicapped room or will it fit into a regular room?

For someone like me that has been to WDW over 35 times, this will be a whole new experience for me. Since I've had my son, I've only been once and my husband came with me. I would normally ask my mother to help, but she is 84 and she would need an EVC too!

Okay, mind is still spinning. I want to plan, but can't until DH and I talk with the Doc on Tuesday.

Again, thanks for listening.

 

[peemagg]

Is there an older teen friend or another adult that you could take with you that can do the things with your son that you can't? Maybe an older cousin? I would look into trying to find someone else to go with you.

 

[hematite153]

But now I'm going to have a very active 7 year old who wants to see/do everything and momma probably can't do it all and I hate to disappoint him!

Renting an ECV for the length of your stay from an outside vendor should make a big difference. If you ride around the resort and you ride during the transportation part of your trip (i.e. staying on the Monorail is less of an advantage if you're going to ride rather than walk to the parks), you'll have a lot more walking power available for the "fun" parts of the day.

One thing you may not have thought about yet, energetic 7 year olds can suddenly run out of steam and you won't be able to carry/push him.

Don't sell yourself short. Get an ECV and really make use of it. If you do that and have some serious conversations with your DS about staying with you and not walking in front of the ECV, you should to able to do everything that he might wish to do.

 

[disneyjunebug]

Well, I saw the specialist and I only have two courses of action with my ankle.
1st is an ankle replacement (which my insurance won't pay for and they cost $35,000) and 2nd is amputation and prosthesis (which my insurance will pay for). Needless to say neither option is great. I did get fitted for a brace, which should come back in about 2 weeks and until then, I am using my bledsoe boot.

I am still going on with the plan to go to Disney in October. I have a friend that I teach with that wants to go with her little girl, so I would have some help and Jay would have a friend to go play with, so that is good. I will have to rent an ECV for the entire trip.

Thanks for all the help and support! I suspect I will be on this board a little more for a while!

 

[maroo]

Aw man! I am so sorry!

Do you have recourse with your insurance company? I wonder why they won't cover that?

Blessings to you! I hope you have a wonderful trip!

 

[peemagg]

I sent you a private message. Hope it helps

 

[hematite153]

Yuck, sorry! Those aren't good enough options. Why won't your insurance pay for the ankle replacement? Isn't that cheaper long-term than replacing protheses? I wish you luck!

As for bringing a friend and her daughter, that sounds like a great plan.

 

[peemagg]

I think that probably insurances won't pay for ankle replacement is that it is not a common replacement and is relatively new process. It hasn't been tested and proved reliable enough yet to be covered.

 

[disneyjunebug]

Yes, my insurance won't pay for the replacement because they still consider it "experimental". But other Blue Cross/Blue Shields from other states will pay for it, so its really weird. I teach school part time, but make cheesecakes for friends to make a little extra money. It would take me making 1700 cheesecakes to make enough money to get the surgery! (at $30 a pop)

Just had my MRI's tonight on my knee and ankle, so doc will have those results next week.

On a bright note, DH has decided to go with me and my friend has gotten her DH to go too, so we will have a little group going! I'm definitely going, so any surgery, drastic or otherwise, will have to wait until after my October trip. I turn 50 at the end of October and this trip in the middle of the month is my birthday present! I am so excited!