The journey continues .....

This blog post comes with a huge WARNING:

1. Grab Kleenex before you read it ….. sad post today.
2. Don’t attempt to understand or make sense of the details, as I can’t comprehend and understand it myself.
3. This is a blog post that I never dreamed I’d have to write.

Over the past five days the unthinkable has happened and deep down my greatest fear has occurred ….. the tendon contraction problem or some neurological issue has returned in my foot. For whatever reason, the November surgery “fix” did not last and on Monday of this week my four small toes began pulling upward off the ground. It has become significantly worse as the week has progressed and they are now all close to 1” off the ground. I can only walk on my heel area. I’m back to taking narcotics, which hasn’t happened in 4-5 months. I can physically feel the pulling, tightness and stiffness in the tendon area (much stronger than before).

My gait pattern has been altered and I’m back to walking with a clomping motion, instead of the normal “toe-off” step through pattern that is normal. Pain is now 7/10 (ten is ER pain). I can no longer walk around the grocery store, Wal-Mart or really anything that requires more than about ten minutes of standing/walking.

Wednesday was my last pt appointment and the range of motion that I now have is less in all areas than when I started pt in early January, after the last surgery. The therapist and I measured multiple times because neither of us could believe that I was now in the “negative number” category for range-of-motion. We both were in shock to say the least.

All of this has happened since Monday of this week. Just last Saturday night, mom & I were having a fun dinner at the Weber Grill restaurant in Chicago and we went to dine at someplace nice to celebrate being done w/the foot ordeal. We talked about what we had learned, fun things I wanted to do this spring and dreams that I wanted to pursue. I even bought fun shoes that I’m shipping back tomorrow.

No one can explain why any of this has occurred so suddenly. The past 3-4 months have been fantastic and I can honestly say it has been the best several months of living in the past five years. I am right at the 3-month post-op mark, since the November surgery and this is pretty unusual for complications to happen this late – considering I’ve been in no pain, able to walk well, exercise, etc. with absolutely no problems.

I’ve spent considerable time this week on the phone with doctors and e-mailing for opinions. My Chicago orthopod says this is totally beyond her comprehension & she believes there is still an underlying neurological problem that has been missed. Dallas says to try a Botox injection (to try & stop the contraction before it becomes worse) and if it doesn’t work the November surgery needs to be re-done …. although the same thing could happen again. This morning I met w/my STL orthopod and he also believes there is some neuro issue; he will try to get me into see a neurologist in STL as soon as possible. I cannot see a neurologist for an appt. quickly w/out the help of another dr. scheduling it for me. I’ve already seen 4 top neurologists and have had all the tests done in the past and everything comes back negative, but I’m open to trying again.

I really need to find the top neurologist in the US & see this individual like ASAP –don’t have a clue who that is. Most neuro people tell me that this is an orthopedic problem and vice-versa – totally frustrating. I did learn this morning that this has not happened because of anything that I did or didn’t do (i.e. over exercising, walking, etc.).

Needless to say, it has been a sad and disheartening week because I have been doing incredibly well ….. a million times better than I could have ever hoped. None of it makes sense and none of it is fair. My feelings about it all have been all over the board this week. I have three top orthopedic doctors and none of them have seen this happen, know what caused it, they don’t know how to fix it and they are as exhausted with it all as I am.

Just last week I sent a long thank-you note to the Dallas surgeon telling him how well things had progressed and thanking him for his medical help ….. this week I am calling him begging for answers, pain medication and talking about another surgery date.

The risk of re-doing the November surgery is quite high because it involves opening up the previous incision for the second time, which is NOT good in my case – total open door for big time wound issues. My past success with “re-do” operations has not been good for the most part. The bottom line is that we have to get to the root of the problem and figure out why this is happening (this is way easier said than done). Today I can’t deal w/the idea of an 18th surgery, so I’m not dwelling on that for now.

In the short term, I need to find a strong neurologist & meet this person like w/in the next 1-2 weeks. If we are going to do the Botox, it really needs to happen this next week or hope of it working won’t happen (time issue). We are stopping pt for now. My mom came over tonight and did some simple cleaning at my house, as walking is really difficult and painful now. I have student visits (100-125 kiddos) every day from now through the end of May, so that will be rough.

All I can say is PRAY, PRAY, PRAY!! Take heart in the fact that God is still in control and His plan is always the best. This is debilitating, but not life-threatening. I’ll get through it, but obviously our journey with this has not ended. Keep believing, hoping and praying that God will provide wisdom, peace and courage to go on with what is ahead & that somehow we’ll figure out the best physician to consult with and I’ll get the necessary appointments scheduled quickly. I really need to see a neuro doctor that has seen neurological foot issues in other patients …. He/she is out there somewhere!

Rest in the Lord, and wait patiently for Him …. Psalm 37:7

Love,
Jenny