There is not a lot new happening, other than the pain and struggle with walking tend to get a little worse each day. I did go to a pt appt. on Thursday of last week. Swelling was 1 1/2" larger on the bad foot/ankle compared to the other side. The loss of ROM was significant, but I expected that would likely happen. My therapist was shocked at how quickly this has reversed. Toes 2-4 are a little over an inch fixed in the air and toe #5 is even higher. I didn't leave the appt. in tears, but it happened when I made it to my car. It was pouring rain outside and I was crying inside ... what a mess. I have another appt. on Wednesday of this week .... just trying to do a little manual massage to keep it from getting any worse related to stiffness and height.
I requested a copy of Dr. K's (STL) office notes, so hopefully I will receive that early this week. I wanted to read his surgical plan in writing, as this is what he sent to TX.
All is set and scheduled for a 3:30pm appt. w/Dr. C in Dallas on Wednesday, May 12th and I am tentatively on his surgery schedule for 5/13. My mom is going w/me to Dallas and we will stay with a friend. We're praying for an accurate treatment option and that this will simply be an issue with the toes and not a structural problem with the ball area of the foot. Who knows about a cast, pins, no weight on it, etc. .... lots of questions still. Pray that it is correctable ... sounds that way now, but that has a way of often changing.
It is a little nerve wracking going down there and not having a total plan in place, but it is all part of being flexible. I feel comfortable w/this surgeon that we'll likely go with whatever he
recommends.
Better get to bed .... long week ahead with student visits all five days. I have Friday off, as we are returning to Ft. Wayne, IN to celebrate the 50th anniversary of the church where we attended before moving to St. Louis.
Keep praying for wisdom, acceptance, grace and pain relief!
Jenny
Sunday, April 25, 2010
Wednesday, April 21, 2010
Appointment Summary ....
At 2:00pm today, I got a migraine headache at work and started to lose vision instantly (stress related). I thought for sure that I was going to have to call and cancel the appt. at 3:20pm. I took some medicine, had a Coke and gave it thirty minutes …. Eventually, it worked enough that I could see to drive and talk coherently.
The appt. was about as positive as I could expect … thank-you for praying. Dr. K joked w/me upon entering that it had been 6 months since I had seen him, which is a major time record for my foot. He fully agreed that we are now back to where we were a year ago. He said to forget about attempting to figure out why it reoccurred, as we’ll likely never know & it will just prove to me more frustrating to keep searching.
He suggested cutting the tendon that is pulling it up and not necessarily lengthening it ….. he was not concerned about the “foot drop” possibility & said that it would not happen if the tendon was just clipped. It is supposed to be a relatively simple operation. He said that he wouldn’t pay for the pt, but I could do whatever I want on that topic …. won’t hurt it, but he said it will likely not reverse the problem. Dr. K’s explanation of the problem was essentially the same as the Dallas doctor. It is a little hard to tell if is just a toe positioning issue or if it is a bigger positioning issue w/the ball of the foot (hard to tell w/how I bear weight now). Dr. K & I lean toward to feeling that it will improve if the toes touch the ground & if I can bear weight on the entire foot.
He firmly believes that there is still a nerve issue & that I will likely deal with this the rest of my life. Because none of the neuro tests reveal anything, he said that you have to treat the symptoms, try to get it to be somewhat better, see how long it lasts and then do more treatment/surgery again as needed. He feels strongly that this is going to be ongoing and that any fix we do now will not last forever. He made the point that I am now having more time in between each surgery (which is good), so what we are doing/trying is working, but he fully expects the problem to continue to return at some level down the road …. doesn’t sound like there is any way around that & no one guarantees anything in the medical world.
Dr. K just saw Dr. C (Dallas dr.) three weeks ago at a conference and they talked about how well I was doing ….. ugh! Dr. K is going to send Dallas a letter with his thoughts/recommendations. Tomorrow I am supposed to call Dallas and make sure I can do surgery (assuming Dallas agrees upon seeing it) on May 13th, after my appt. on May 12th. Dr. K agreed to do the follow-up in STL …. if there are no wound issues, it sounds pretty minor. The Dallas dr. has never said anything about a nerve issue, so I’d be curious what he thinks on that point, but I’m hesitant to bring it up. Dallas may have another idea on solving the problem when I go to for the appointment …. this is hard to discuss over the phone.
I am dealing with it all and am still processing the reality of the situation. The idea that this is likely going to be an on-going problem was something that I have heard before, but I really thought that being 13 months post-op …. maybe we had dodged that notion. Evidently not. One of the hardest things about this is the fact that most of the general public naturally assumes that if you have surgery you should be “fixed” forever, which is not the case in my situation. It is hard for me swallow, too.
For now, there still seem to be treatment options (even if just a few), for which I am grateful. Dallas & STL still seem to be willing to help, which is another praise – pray that it stays that way.
Thanks again for praying today … I’m thankful for supportive friends, family, faith, and strong medical care. Keep praying for wise decision making and pain management in the next few weeks.
Jenny
The appt. was about as positive as I could expect … thank-you for praying. Dr. K joked w/me upon entering that it had been 6 months since I had seen him, which is a major time record for my foot. He fully agreed that we are now back to where we were a year ago. He said to forget about attempting to figure out why it reoccurred, as we’ll likely never know & it will just prove to me more frustrating to keep searching.
He suggested cutting the tendon that is pulling it up and not necessarily lengthening it ….. he was not concerned about the “foot drop” possibility & said that it would not happen if the tendon was just clipped. It is supposed to be a relatively simple operation. He said that he wouldn’t pay for the pt, but I could do whatever I want on that topic …. won’t hurt it, but he said it will likely not reverse the problem. Dr. K’s explanation of the problem was essentially the same as the Dallas doctor. It is a little hard to tell if is just a toe positioning issue or if it is a bigger positioning issue w/the ball of the foot (hard to tell w/how I bear weight now). Dr. K & I lean toward to feeling that it will improve if the toes touch the ground & if I can bear weight on the entire foot.
He firmly believes that there is still a nerve issue & that I will likely deal with this the rest of my life. Because none of the neuro tests reveal anything, he said that you have to treat the symptoms, try to get it to be somewhat better, see how long it lasts and then do more treatment/surgery again as needed. He feels strongly that this is going to be ongoing and that any fix we do now will not last forever. He made the point that I am now having more time in between each surgery (which is good), so what we are doing/trying is working, but he fully expects the problem to continue to return at some level down the road …. doesn’t sound like there is any way around that & no one guarantees anything in the medical world.
Dr. K just saw Dr. C (Dallas dr.) three weeks ago at a conference and they talked about how well I was doing ….. ugh! Dr. K is going to send Dallas a letter with his thoughts/recommendations. Tomorrow I am supposed to call Dallas and make sure I can do surgery (assuming Dallas agrees upon seeing it) on May 13th, after my appt. on May 12th. Dr. K agreed to do the follow-up in STL …. if there are no wound issues, it sounds pretty minor. The Dallas dr. has never said anything about a nerve issue, so I’d be curious what he thinks on that point, but I’m hesitant to bring it up. Dallas may have another idea on solving the problem when I go to for the appointment …. this is hard to discuss over the phone.
I am dealing with it all and am still processing the reality of the situation. The idea that this is likely going to be an on-going problem was something that I have heard before, but I really thought that being 13 months post-op …. maybe we had dodged that notion. Evidently not. One of the hardest things about this is the fact that most of the general public naturally assumes that if you have surgery you should be “fixed” forever, which is not the case in my situation. It is hard for me swallow, too.
For now, there still seem to be treatment options (even if just a few), for which I am grateful. Dallas & STL still seem to be willing to help, which is another praise – pray that it stays that way.
Thanks again for praying today … I’m thankful for supportive friends, family, faith, and strong medical care. Keep praying for wise decision making and pain management in the next few weeks.
Jenny
Tuesday, April 20, 2010
Appointment tomorrow ...
Pray at 3:20 tomorrow .... Wed., April 21st .... hopefully it is a positive appointment with my STL foot, ortho doctor. I have not seen him since October. The positioning is about the same as when it started to go downhill last week. I am hoping to get a better understanding as to reality of pt working and if the Dallas/STL doctors should talk on the phone. We tried pt for this exact problem in the past with no success, but I am trying to keep an open mind.
I was not able to get in for a pt appt. earlier this week, as I had hoped. My first appt. is Thursday afternoon of this week. I did make an appt. in Dallas for May 12th ..... as it looks now, if surgery would be necessary I could do it the following day. We are going to "evaluate the situation" in another week and decide if they need to "pencil me in" on the surgery schedule. I'm not thinking about that possibility yet and hope to ask some more questions related to all of this tomorrow.
Keep praying ....
je
I was not able to get in for a pt appt. earlier this week, as I had hoped. My first appt. is Thursday afternoon of this week. I did make an appt. in Dallas for May 12th ..... as it looks now, if surgery would be necessary I could do it the following day. We are going to "evaluate the situation" in another week and decide if they need to "pencil me in" on the surgery schedule. I'm not thinking about that possibility yet and hope to ask some more questions related to all of this tomorrow.
Keep praying ....
je
Sunday, April 18, 2010
Tough Weekend ....
Post #396
The weekend was a big dose of how quickly things have changed, as pain quickly set in, more swelling, and walking has been labored & exhausting. The top of my foot and ankle area has been very painful, as I can feel the tendons/muscles (whatever it is) tensing up inside … feels like one big contracted knot with no relaxing in the immediate future. I was reminded of how far we had progressed and how quickly it has reversed.
I walked only for what I had to get done this weekend …. walking on the left side and heel is not going to last real long. At the moment, my tolerance for this set-back is pretty low. I have students all five days this week, which sounds really overwhelming - just taking it day-by-day.
I spent a little time on the Internet yesterday doing some research in hopes to understand a possible “why” to this suddenly reoccurring, but not a lot of luck finding something that truly applies to my situation.
My pt did e-mail me on Friday and told me that he would work me in earlier than Thursday, but I don’t have a specific time/date yet. My calendar is now suddenly full with medical appointments and I spent an hour today trying to juggle around some work obligations, so I can work in the pt stuff.
I realized another “sign” that this problem has existed for several weeks …. three weeks ago I bought a pair of silver sandals. Upon wearing them several times, you could see the “toe imprints” on the front portion of the sandal. Well, on the right foot the only toe imprint on the sandal is the big toe – hmmmm??? Obviously, none of the others were making contact.
I am still astounded by how this has deteriorated in a week’s time. I have a colleague from our JA Minneapolis office coming to shadow me for the first half of this week. She arrives tomorrow at 11am and will be with me until Wednesday evening ….. she may have to shop at Chesterfield mall a bit in order for me to go to pt and the Wednesday dr. appointment.
I am anxious for the Wed. orthopedic appointment. Maybe Dr. K will call Dr. C and discuss the situation, if necessary. I am going to ask him if he thinks there is even a chance of the pt working …. it is significant money, so I want to be realistic about it. In the meantime, I’m going to schedule an appt. w/Dr. C (in Dallas) for several weeks from now …. just in case I need it.
Pray hard for pain relief, good Wednesday appt. and encouragement this week!
je
The weekend was a big dose of how quickly things have changed, as pain quickly set in, more swelling, and walking has been labored & exhausting. The top of my foot and ankle area has been very painful, as I can feel the tendons/muscles (whatever it is) tensing up inside … feels like one big contracted knot with no relaxing in the immediate future. I was reminded of how far we had progressed and how quickly it has reversed.
I walked only for what I had to get done this weekend …. walking on the left side and heel is not going to last real long. At the moment, my tolerance for this set-back is pretty low. I have students all five days this week, which sounds really overwhelming - just taking it day-by-day.
I spent a little time on the Internet yesterday doing some research in hopes to understand a possible “why” to this suddenly reoccurring, but not a lot of luck finding something that truly applies to my situation.
My pt did e-mail me on Friday and told me that he would work me in earlier than Thursday, but I don’t have a specific time/date yet. My calendar is now suddenly full with medical appointments and I spent an hour today trying to juggle around some work obligations, so I can work in the pt stuff.
I realized another “sign” that this problem has existed for several weeks …. three weeks ago I bought a pair of silver sandals. Upon wearing them several times, you could see the “toe imprints” on the front portion of the sandal. Well, on the right foot the only toe imprint on the sandal is the big toe – hmmmm??? Obviously, none of the others were making contact.
I am still astounded by how this has deteriorated in a week’s time. I have a colleague from our JA Minneapolis office coming to shadow me for the first half of this week. She arrives tomorrow at 11am and will be with me until Wednesday evening ….. she may have to shop at Chesterfield mall a bit in order for me to go to pt and the Wednesday dr. appointment.
I am anxious for the Wed. orthopedic appointment. Maybe Dr. K will call Dr. C and discuss the situation, if necessary. I am going to ask him if he thinks there is even a chance of the pt working …. it is significant money, so I want to be realistic about it. In the meantime, I’m going to schedule an appt. w/Dr. C (in Dallas) for several weeks from now …. just in case I need it.
Pray hard for pain relief, good Wednesday appt. and encouragement this week!
je
Thursday, April 15, 2010
Oh, No .... Toes Lifting
Today has been an incredibly difficult day in relation to the foot. Since November, things had been going very well and I have been walking with minimal pain and pretty much back to everyday life. Last weekend I was in Chicago with friends and we commented on how great it was that I could go on the trip with no crutches/cast. Things have now changed significantly in the past few days.
Over the past 4-5 months, I have had a continual callus, swelling and soreness on the left side of my big toe. I attributed it to my big toe being fused, using it more now, etc. Basically I’ve just dealt with it & thought it was an inconvenience that I’d need to live with. At the same time that was happening, my little toe (#5) was off the ground. I noticed that when I wore different shoes in would get stuck in a strap or poke out the top of a sandal. I tried on sandals last weekend in Chicago & my co-workers even asked me why that small toe was sticking up ….. I told them then that was just the way it was. .
During this week, I’ve come to realize that the toe positioning problem that we had a year ago has returned. Now the four small toes are fixed off the ground and nothing makes contact with the floor ….. exactly where we have been twice before. There is an strong inch+ gap between the toes and the floor .. the little toe is even higher. I can run my entire hand under the toes.
I only bear weight now on the heel and left side of the foot. I am about 13 months post-op, so the fact that this has suddenly returned is quite puzzling. I now realize that all the issues with the side of the big toe have likely happened because that was the only side of the foot that was making contact with the ground. It is most disheartening to say the least …. I thought we were so far beyond needing to have anything else done, I was going to close my medical bank account this weekend (not now). Why it took me so long to put it all together is beyond me!
I called the ortho dr.’s office in Dallas this morning and got a new receptionist to relay a message to his assistant (both were in surgery). Dr. C’s PA called me back & then went and spoke w/Dr. C, while I stayed on the phone. I won’t do justice to explaining this well, but basically the tendons that were lengthened are weak and it is causing other tendons to overwork to compensate … to the point that they are pulling up the toes. There is more to it, but I was in such shock that I only grasped a few facts.
It feels just like it did a year ago – tense, pulling up, etc. …. it is scary at how quickly this has gone from good to bad. In the past, the pattern has always been that once the toes come up, they do not go back down. We have to try pt, but I am doubtful.
Dr. C does not want to lengthen the tendons again (would be the 3rd time), as the risk of “foot drop” (droopy, floppy foot) happening is quite high … the risk is likely not worth taking. The tendon leading to the small toe could be lengthened. The solution for now is to resume pt immediately to try and manually get the toes to relax, come down and stay down. If I do pt for 3-4 weeks with no results, then Dr. C could lengthen the small toe and see if this would be enough to get the others to come down or maybe pt will work on toes 2-4 and then we fix the small toe.
I promptly scheduled pt appointments, but the soonest I could get in is next Thursday ….. pray for a cancellation. We need to work on this sooner than later, if there is hope of turning it around. I do have an e-mail into my therapist begging for something sooner. Thankfully, the pt office is right next door to JA so I can be over there in a few minutes, if needed.
Between now and the end of June, I have a super busy work schedule … students every day and three weeks of summer camp in June. It is not a good time for me to have this happening or leaving mid-day for pt appointments. I will figure out a way to make it all happen, but it seems like a big task at the moment. I am glad there is only one day of work left this week …. I need the weekend to wrap my head around this. I am very thankful that Dr. C’s PA called me back today in between surgery cases.
The hip appt. earlier this week was not real productive. I was going to get another opinion on it this coming week, but given the foot issues the hip is taking a back seat. There are mixed feelings on the right time to do the revision surgery. Forget the hip issues for the time being …..
Wednesday, April 21st – 3:20 appt. w/Dr. K in STL – to get his opinion on the situation.
The bottom line is put my name back on your prayer list …. Pray specifically that the pt will be effective & for an appt. to happen by early next week. Pray for wisdom, strength, grace, acceptance, and a positive attitude.
In His Grasp,
Jenny
Over the past 4-5 months, I have had a continual callus, swelling and soreness on the left side of my big toe. I attributed it to my big toe being fused, using it more now, etc. Basically I’ve just dealt with it & thought it was an inconvenience that I’d need to live with. At the same time that was happening, my little toe (#5) was off the ground. I noticed that when I wore different shoes in would get stuck in a strap or poke out the top of a sandal. I tried on sandals last weekend in Chicago & my co-workers even asked me why that small toe was sticking up ….. I told them then that was just the way it was. .
During this week, I’ve come to realize that the toe positioning problem that we had a year ago has returned. Now the four small toes are fixed off the ground and nothing makes contact with the floor ….. exactly where we have been twice before. There is an strong inch+ gap between the toes and the floor .. the little toe is even higher. I can run my entire hand under the toes.
I only bear weight now on the heel and left side of the foot. I am about 13 months post-op, so the fact that this has suddenly returned is quite puzzling. I now realize that all the issues with the side of the big toe have likely happened because that was the only side of the foot that was making contact with the ground. It is most disheartening to say the least …. I thought we were so far beyond needing to have anything else done, I was going to close my medical bank account this weekend (not now). Why it took me so long to put it all together is beyond me!
I called the ortho dr.’s office in Dallas this morning and got a new receptionist to relay a message to his assistant (both were in surgery). Dr. C’s PA called me back & then went and spoke w/Dr. C, while I stayed on the phone. I won’t do justice to explaining this well, but basically the tendons that were lengthened are weak and it is causing other tendons to overwork to compensate … to the point that they are pulling up the toes. There is more to it, but I was in such shock that I only grasped a few facts.
It feels just like it did a year ago – tense, pulling up, etc. …. it is scary at how quickly this has gone from good to bad. In the past, the pattern has always been that once the toes come up, they do not go back down. We have to try pt, but I am doubtful.
Dr. C does not want to lengthen the tendons again (would be the 3rd time), as the risk of “foot drop” (droopy, floppy foot) happening is quite high … the risk is likely not worth taking. The tendon leading to the small toe could be lengthened. The solution for now is to resume pt immediately to try and manually get the toes to relax, come down and stay down. If I do pt for 3-4 weeks with no results, then Dr. C could lengthen the small toe and see if this would be enough to get the others to come down or maybe pt will work on toes 2-4 and then we fix the small toe.
I promptly scheduled pt appointments, but the soonest I could get in is next Thursday ….. pray for a cancellation. We need to work on this sooner than later, if there is hope of turning it around. I do have an e-mail into my therapist begging for something sooner. Thankfully, the pt office is right next door to JA so I can be over there in a few minutes, if needed.
Between now and the end of June, I have a super busy work schedule … students every day and three weeks of summer camp in June. It is not a good time for me to have this happening or leaving mid-day for pt appointments. I will figure out a way to make it all happen, but it seems like a big task at the moment. I am glad there is only one day of work left this week …. I need the weekend to wrap my head around this. I am very thankful that Dr. C’s PA called me back today in between surgery cases.
The hip appt. earlier this week was not real productive. I was going to get another opinion on it this coming week, but given the foot issues the hip is taking a back seat. There are mixed feelings on the right time to do the revision surgery. Forget the hip issues for the time being …..
Wednesday, April 21st – 3:20 appt. w/Dr. K in STL – to get his opinion on the situation.
The bottom line is put my name back on your prayer list …. Pray specifically that the pt will be effective & for an appt. to happen by early next week. Pray for wisdom, strength, grace, acceptance, and a positive attitude.
In His Grasp,
Jenny
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