Living with an ankle fusion and subtalar fusion--Any advice?

Hello all - I'm new to posting here, and have a few questions. I underwent my 1st surgery 2/24/09 for PTTD - did a transfer, as well as put in a subtalar implant. 3 days post-op, I had a lot of discomfort at the implant site, and wanted it out. It didn't feel right, and my Dr. didn't believe me. I finally convinced him to take it out, but that wasn't until 8/6/09. It felt better after that, but I still had the same pain I went to him with initially. (First Dr. is a Podiatrist)

I changed Dr.s in 1/14/10, this time to an Ortho. She took one look at my x-Rays, MRIs, and everything else, and said that the transfer didn't look right, and started talking about fusion, but wanted to try bracing it 1st. I spent the next 2 weeks in a walking cast, then 6 weeks in an air-cast boot, then 6 months in an Arizona AFO... THEN I had the fusion, she redid the transfer, as well as a Tal Gastrocnemius Recession.

Now I'm the "proud owner" of a 7" scar on the interior of my foot/ankle, several 1" on the exterior, and a 2" on my calf. (www.go2warp.com/mare) Here are some actual pics 10 days post op.

My questions are, with all this going on, how long can I expect swelling? At the end of the night I'm still softball or larger size, and it keeps getting worse. My hubby has to take my shoe off for me because I can't. Also, how long should there be pain? Not a lot of pain, but enough to be uncomfortable, and a constant reminder that something isn't right. The pain gets worse through out the day as well.

My current Dr. wants me to go for a CT scan, but she came right out and said she doesn't think it's going to show her anything. So why go? Also, she's concerned about the swelling and pain, but since I've only been back to work and really driving (more than trips to the store) for about 1 month, she thinks it may be that. I'm just worried, because I'm pushing 6 months post-op.

Sorry this is so long and drawn out, but, as I'm sure most of you know, this isn't something to be taken lightly, and I'm starting to really worry.

Thanks all!
-Mare

Hi Anonymous,
Do you have to have a subtalar fusion? I had a complete pantalar fusion which includes the fusion of the subtalar joint. I don't know how different the recovery process is for a subtalar fusion, but I'm happy to share some of my experience with you.
I started PT about 3 1/2 months after my surgery. I went three times a week at the beginning as I made progress it went down to twice a week and then towards the end I was only going once a week.
Have you asked your doctor about the recovery process (including PT) and how long it will take to heal?
Good luck and let me know if you do have this procedure done.
Ang

Hello. I am researching what goes into a Subtalar fusion. Can you please let me know when you started PT and the frequency/duration you were seen for? I would greatly appreciate any information you are willing to share. Thanks!

I'VE HAD ANKLE PROBLEMS FOR 12 YEARS NOW I HAD A BAD SPRAIN WHEN I WAS 14 THE DOCTORS DIDN'T REALISE THAT I ACTUALLY HAD TORN MY LIGAMENT I DIDN'T FIND THIS OUT TILL NOV 2006 ONLY BECAUSE I WENT TO THE DOCTORS CAUSE MY ANKLE KEPT GIVING OUT ALL THE TIME. I FOUND OUT IN NOV 2006 I HAD TORN MY LIGAMENTS IN MY RIGHT ANKLE MY SURGEON SAID I WOULD BENEFIT FROM HAVING A LIGAMENT RECONSTRUCTION. SO IN AUGUST 2007 I HAD A RIGHT LATERAL LIGAMENT RECONSTRUCTION DONE ON MY RIGHT ANKLE THIS WAS MY FIRST OPERATION AT FIRST MY RECOVERY WAS GOING GOOD THEN IN FEB 2008 MY PHYSIO FOUND A LUMP IN MY SCAR. WHEN I WENT BACK TO MY SURGEON HE TOLD ME THAT THE SUTURES THEY USED TO REPAIR MY LIGAMENTS WERE COMING LOOSE SO HE WOULD HAVE TO REMOVE THEM SO IN AUG 2008 I HAD A SECOND OPERATION TO REMOVE THE SUTURES FROM MY RIGHT ANKLE. THREE WEEKS AFTER THIS OPERATION I DEVELOPED A TREMOR IN MY RIGHT LEG EVERYTIME I PUT WEIGHT THROUGH MY RIGHT LEG MY LEG WOULD TREMOR I CAN ONLY STAND ON MY LEFT LEG AS IF I STAND ON MY RIGHT LEG AT ALL IT TREMORS. THEN IN AUGUST 2009 THEY FOUND ANOTHER LUMP IN MY SCAR AND I ENDED UP HAVING A THIRD OPERATION TO REMOVE ANOTHER SUTURE AND SCAR TISSUE FROM MY EXISTING SCAR. I STILL HAVE THE TREMOR & THEY DON'T KNOW WHAT IS CAUSING IT, I HAVE HAD FOUR PHYSIO'S & HAD 50 SESSIONS OF PHYSIO IN THE LAST 3 YEARS WITH NO IMPROVEMENT. I HAVE NO HEEL TO TOE ACTION WHEN WALKING THERE'S NO STRENGTH IN THE FOOT OR ANKLE I HAVE HARDLY ANY MOVEMENT IN MY ANKLE AT ALL I HAVE TO WALK WITH CRUTCHES & WEAR AN ANKLE BRACE AS MY ANKLE STILL GIVES OUT EVEN THOUGH I HAVE HAD MY LIGAMENTS REPAIRED. I HAVE A BAD LIMP IF I WALK WITHOUT CRUTCHES AND BECAUSE I HAVE BEEN LIMPING FOR SO LONG MY PELVIS HAS NOW TILTED. I'M IN A GREAT DEAL OF PAIN WITH MY ANKLE AND PELVIS EVERYDAY HAVE BEEN FOR THE LAST 3 YEARS NEARLY 4 I CAN'T EVEN DO NORMAL DAILY TASKS CAUSE OF MY MOBILITY PROBLEMS I HAVE BEEN ON THE SICK FROM MY JOB FOR A YEAR & FIVE MONTHS AS I CAN'T COPE WITH THE PAIN I'M IN. IVE HAD PAIN INJECTIONS, PAIN PATCHES AND LOTS OF DIFFERENT PAIN MEDICATIONS WITHOUT ANY OF THEM WORKING. MY LAST SCAN ON MY ANKLE SHOWED THAT I HAVE LOST MOST OF THE CARTILAGE IN THE JOINT, MY ANTERIOR TALOFIBULAR LIGAMENT IS VERY THIN, I HAVE BONE DEGENERATION AT THE BOTTOM END OF MY TIBIA BONE & I HAVE A BONE SPUR AT THE BOTTOM END OF MY TIBIA BONE. MY SURGEON HAS DISCHARGED ME SAYING THERE IS NOTHING ELSE HE CAN DO FOR ME. I'M ONLY 26 & I'M FED UP OF BEING IN AGONISING PAIN EVERYDAY THEY DON'T SEEM TO CARE THAT I'VE BEEN IN AGONISING PAIN FOR THE LAST 3 YEARS NEARLY 4 BEFORE I HAD THE FIRST OPERATION MY ANKLE WAS CONSTANTLY SPRAINING MY SURGEON SAID IF I DIDN'T HAVE THE OPERATION TO REPAIR MY LIGAMENTS I WOULD END UP BREAKING MY ANKLE & I WOULD BE WORSE OFF BUT BEFORE THE OPERATION I WAS MOBILE NOW I'M BASICALLY DISABLED I'M SO DESPERATE ILL TRY ANYTHING. THE DOCTOR HAS SAID THERE IS A VERY HIGH CHANCE THAT I AM GOING TO DEVELOPE ARTHRITIS IN MY ANKLE. I AM WAITING TO SEE A MUSCOSKELETAL SPECIALIST TO SEE WHAT DAMAGE HAS BEEN DONE TO MY OTHER JOINTS AS I HAVE ONLY BEEN ABLE TO STAND ON MY LEFT LEG & I STILL AM HAVING TO STAND ONLY ON MY LEFT LEG. I WILL DO ANYTHING FOR A BETTER QUALITY OF LIFE ITS JUST A STRUGGLE TO WALK TO BE ABLE TO WALK NORMAL AGAIN & PAIN FREE I WOULD DO ANYTHING.
I'M CONSIDERING ASKING IF I CAN HAVE MY ANKLE FUSED I WOULD LIKE TO KNOW WHAT OTHER PEOPLE THINK OR WHETHER YOU HAVE ANY SUGGESTIONS ANY COMMENTS WELCOME THANK YOU GEMMA.

Anon - We have several threads on the site related to ankle fusions.
https://www.empowher.com/community/ask/ankle-fusion
https://www.empowher.com/community/share/ankle-fusion-i-know-i%E2%80%99m-not-alone
https://www.empowher.com/bones-joints/content/ankle-fusion-vs-ankle-replacement
https://www.empowher.com/bones-amp-joints/content/what-ankle-fusion-dr-horton-video
https://www.empowher.com/community/share/second-ankle-fusion

If you'd like to hear from others it would help to post your question or questions using the site's "Ask" feature so that more people will see it.
We have a lot of caring, informed members who've had ankle fusions.
Take care,
Pat

hi my name is ian in august 2009 i fell from a ladder and shattered my heel bone the surgeon counted 44 pieces since then i have had metal work taken out, i still cannot bear full weight on my foot without being in alot of pain having a second steroid injection in november they have already said about a double fusion of ankle and subtalar joints not looking forward to it but will be nice to be pain free anybody had this done or got any good advice about this

Hi Trude - Thanks for writing on behalf of your mom. You may also be interested in some of the other threads on the site about ankle fusion, which are listed above. I hope Anne responds to your request. If she doesn't I wanted to make you aware that if you register and join the site as a member you will be able to use the site email system to send a private message to Anne at her user name which is anneh8sldrs. And, if you or your mom have specific questions just let us know.
Take care, Pat

Hi Anne,

I am wodnering if you would mind if I asked you some questions re your op / recovery?

My mother is due to have her ankle fused in a couple of months and is absolutely terrified. I have some real concerns about how able she will be post op and how well I will be able to look after her and balance my job.

Any advice you could offer would be greatly appreciated.

You sound so positive and it would be wonderful to be better informed an fore-armed before the op.

Many thanks

Trude

Hi Anne - We have many threads on this site with comments from women who've had ankle fusions. You may find helpful information and advice in the threads, and you're also welcome to contact others directly through the site's email feature. I hope your recovery continues to go well. Take care, Pat

Here are some of the threads:

https://www.empowher.com/community/share/ankle-fusion-i-know-i%E2%80%99m-not-alone

https://www.empowher.com/community/ask/ankle-fusion

https://www.empowher.com/community/share/ankle-fusion-2

https://www.empowher.com/community/ask/living-ankle-fusion-and-subtalar-f...

https://www.empowher.com/community/share/ankle-fusion-1

https://www.empowher.com/community/share/ankle-fusion-pain

https://www.empowher.com/media/video/ankle-joint-replacement-and-ankle-fusion-what-are-long-term-complications-dr-horton-vide