We're finalizing details and getting directions, medical records ready to take to Dallas next week. I managed to get an MRI appt. for 8am on Friday, so we can take the films with us. It was a big struggle with insurance today, but I think I finally got it worked out by the end of the day. Barnes first wanted me to do it on Thursday night during the debate time and I said "no way!"
I did hear of someone today that was significantly helped by the first surgeon that I am scheduled to see. His foot situation was totally different from mine, but at least it was good to hear that he had helped someone else.
It is really challenging to manage expectations with something like this. It is hard to not expect new doctors to have all the magical answers. I will be thrilled if two agree on and recommend the same treatment plan. I'm a firm believer that you learn something from every appointment, but sometimes it isn't as much as you'd like. I think it would be rare for a surgeon to tell me at the first appointment that they are out of ideas, but I guess it could happen. I really need to prepare myself to hear anything. This applies well .... "In nothing be anxious" - Philippians 4:6 Maybe we'll learn the greatest new treatment idea ever or perhaps we'll hear that we've tried everything .... time & faith shall tell.
My STL surgeon has done a lot of work in preparation for me to go to TX. He typed a summary sheet of the surgeries and has gathered all the x-rays onto several disks. We've e-mailed more than usual in the past two weeks & I'm still grateful that he does e-mail!
Tomorrow is our first day of students at work, so I'll be tired Wednesday night. Hope you are enjoying cooler temps and St. Louis fall days.
je
Tuesday, September 30, 2008
Friday, September 26, 2008
TX here we come ....
Texas scheduling finished - whew! The fact that I was able to get appointments with four doctors and the gait test scheduled in the past 48 hours was definitely done with a lot of prayer. My St. Louis dr. faxed the necessary paperwork to Baylor this morning. Within 30 minutes of them receiving it, I received a phone call from the President (doctor) of the lab. I happened to remember his name, because I had read article after article about him on the Internet. He was calling to make sure that they had allotted enough time and to confirm what needed to take place. We talked for several minutes & I told him that I'd have Dr. P call him .... they worked together at one point in their medical careers. She can explain to him exactly what she desires in the testing session. I was very excited that he took the time to call and wanted to make sure that they were being complete at Baylor. He was very complimentary of her and told me that I'd picked all the right foot experts in Dallas to consult with.
I was very impressed with the scheduling lady at Baylor as she was very accommodating. She asked me when I wanted to be seen .... what a first! We are seeing two doctors & doing the gait test on Thursday, Oct. 9th and are seeing a third doctor on Friday, October 10th.
My St. Louis surgeon has been really good this week about typing up a summary sheet, getting operative reports copied and x-rays on disks. We are doing an MRI of the foot toward the end of next week.
I do not have students at JA on Oct. 9 & 10, so that is another big blessing that I was able to do this without having to coordinate someone else to substitute for me. I also didn't have any meetings scheduled, appointments or nothing to rearrange .... I can't think of two consecutive days in the past year that I have not had something happening, so this is a small miracle in itself.
Ending the week here with a grateful heart that at least there is hope of fresh eyes, opinions, thoughts, suggestions, and perhaps a new way to help the current situation. My motto for this week has been .... things do happen when God is in the middle of it. Keep praying for open minds, wisdom for physicians that we'll meet and a clear treatment plan. Praising Him for working out trip details so quickly and thoroughly. It has been one "God thing" after the next this week. Looking forward to seeing God open more doors and work mightily in upcoming weeks!
Much love & hugs,
Jenny
Thursday, September 25, 2008
Appointments scheduled ....
We made a little more progress today .... I called the Baylor gait center early this morning and found out the process for scheduling an appointment. They faxed me the paperwork and I faxed it onto my two orthopods & told them they both had to race to get it returned first! The scheduling lady told me that I could likely get in for an appt. w/in the next two weeks. (I was impressed with her helpfulness on the phone)
I was then able to schedule appointments with three foot surgeons for Oct. 9 & 10 and am hoping to fit the gait test in there as well. The fourth doctor that we discussed seeing is out of the country until the end of October, but I can see someone else that works with him. A little more about the Baylor place ....
Baylor Motion and Sports Performance Center
The Baylor Motion and Sports Performance Center uses innovative and highly technical ways to study human movement and determine better ways to perform surgery, recovery and therapy techniques as well as help athletes perfect their sport.
Precise measurements and evaluation of human motion are captured by accurately measuring segment positions, joint rotations, joint forces and subsequent muscular activity with highly specialized equipment.
One of the first laboratories in the world to have the revolutionary new Vicon MX system, The Baylor Motion and Sports Performance Center utilizes 12 MX40 Motion Capture cameras with a high-speed 4.0-million pixel sensor. The cameras record up to 10,000 frames per second using a 10-bit grayscale precision, which allows motion to be captured with superior accuracy, speed and reliability. These cameras record the patient's movement from different angles. The views are then combined and sent to a bank of computers that creates numerical measurements of the movement. These measurements allow doctors to more closely diagnose pain associated with orthopaedic problems. For example, pain felt in the low back during walking may be caused by a problem in the knee or hip. Such close diagnosis can decrease the length of treatment and help to eliminate pain more quickly.
Patients with clinical problems such as sports injuries, cerebral palsy, arthritis, ligament injury, knee and hip replacement, foot and ankle injury, stroke and other disorders are seen in the laboratory so experts can study their movements for motion analysis.
The laboratory is also used for research studies on a variety of musculoskeletal disorders and neurological disorders. Investigators compare the effects of differing surgical techniques, evaluate the long-term effects of specific surgeries and test new bracing techniques, as well as monitor patient progress.
I should have scheduled the gait test first and the dr. appointments around that, but it happened the other way around. Several of these doctors offices were the first places that said they'd fax me something and within minutes it arrived .... just love it when people do what they say!
Hoping that the last piece of the puzzle falls into place tomorrow and we'll be set. Very thankful for having made huge scheduling progress in the past 48 hours and for Dr. P thinking of this state-of-the-art gait lab. We have friends in Dallas, so we are hoping to stay w/someone & avoid the hotel expense.
Love & hugs,
je
I was then able to schedule appointments with three foot surgeons for Oct. 9 & 10 and am hoping to fit the gait test in there as well. The fourth doctor that we discussed seeing is out of the country until the end of October, but I can see someone else that works with him. A little more about the Baylor place ....
Baylor Motion and Sports Performance Center
The Baylor Motion and Sports Performance Center uses innovative and highly technical ways to study human movement and determine better ways to perform surgery, recovery and therapy techniques as well as help athletes perfect their sport.
Precise measurements and evaluation of human motion are captured by accurately measuring segment positions, joint rotations, joint forces and subsequent muscular activity with highly specialized equipment.
One of the first laboratories in the world to have the revolutionary new Vicon MX system, The Baylor Motion and Sports Performance Center utilizes 12 MX40 Motion Capture cameras with a high-speed 4.0-million pixel sensor. The cameras record up to 10,000 frames per second using a 10-bit grayscale precision, which allows motion to be captured with superior accuracy, speed and reliability. These cameras record the patient's movement from different angles. The views are then combined and sent to a bank of computers that creates numerical measurements of the movement. These measurements allow doctors to more closely diagnose pain associated with orthopaedic problems. For example, pain felt in the low back during walking may be caused by a problem in the knee or hip. Such close diagnosis can decrease the length of treatment and help to eliminate pain more quickly.
Patients with clinical problems such as sports injuries, cerebral palsy, arthritis, ligament injury, knee and hip replacement, foot and ankle injury, stroke and other disorders are seen in the laboratory so experts can study their movements for motion analysis.
The laboratory is also used for research studies on a variety of musculoskeletal disorders and neurological disorders. Investigators compare the effects of differing surgical techniques, evaluate the long-term effects of specific surgeries and test new bracing techniques, as well as monitor patient progress.
I should have scheduled the gait test first and the dr. appointments around that, but it happened the other way around. Several of these doctors offices were the first places that said they'd fax me something and within minutes it arrived .... just love it when people do what they say!
Hoping that the last piece of the puzzle falls into place tomorrow and we'll be set. Very thankful for having made huge scheduling progress in the past 48 hours and for Dr. P thinking of this state-of-the-art gait lab. We have friends in Dallas, so we are hoping to stay w/someone & avoid the hotel expense.
Love & hugs,
je
Wednesday, September 24, 2008
Texas and new gait lab found ....
This is going to be quick and I'll write more tomorrow night .... (very long day)
My dr. appt. with the STL surgeon went okay today. He agreed that I should pursue more ortho opinions at the same time we are looking at anything else nerve related. The EMG/NCV test is the test that I've done twice in the past; can do it again, but probably won't show any change. Normally a nerve disorder is not something that suddenly appears after surgery; he really thinks we'd had seen it surface before now if there was a nerve issue.
He is calling two doctors in Dallas and I'm calling two doctors (checking on appointments). I called my two as soon as I made it back to the car in the parking lot and got two appt.'s scheduled for Thursday, Oct. 9th. Need to see if we can line up at least one more for either Oct. 9th or 10th. The goal is to get "fresh eyes" and see if two agree on something else that should be tried. He did say that we may hear nothing new or something totally fresh just don't know, but we both thought it was worth trying. All parties know we are not left with many options or at least it seems that way at the moment.
E-mailed Chicago and updated her tonight ... she e-mailed back right away and suggested that I visit a placed called Baylor Motion and Sports Performance Center (a state of the art gait analysis lab) in Baylor, Texas. Dr. P couldn't believe that she remembered this tonight, so maybe someone else was praying at that moment! This place is exactly what we need ....
The center conducts research into the link between orthopaedics and the movement of the body to improve treatment, therapies and sports performance by analyzing three-dimensional computer assisted motion analysis. The laboratory uses a 12-camera motion capture system, force platform, electromyographical system, six-degree-of-freedom electrogoniometer and foot pressure measurement system.
The lab also can produce electromyographic recordings, which provide information on muscular activity. The reports indicate which muscles are being fired and how strongly they're being fired. The lab synchronizes all the data gathered along with a digital video into a 3-D skeletal reconstruction and model of movement in real time. The results are presented on a simple interactive CD. A clinician can then manipulate the skeletal image in 3-D space, while simultaneously viewing the digital video or the graphs detailing the joint angle, velocity or athlete's acceleration. It can show any movement, including how and when the toe strikes the ground, how the pelvis rotates or the shoulders sway.
It is pretty high tech! We are going to check in the next few days on what it takes to be seen there & if this could be done on the same trip to consult w/the other doctors. Pray that if I'm supposed to get an appointment, that it will happen in a timely manner. The gait test must really be worth doing, because the Chicago surgeon is really trying to find somewhere to have it done.
I was pleased that I was able to schedule w/two Dallas docs so quickly this afternoon. We are going to do an MRI of the foot in St. Louis soon, so I can take these films with me.
Our big, first day at JA today was a bust due to a good ole' water main break in Chesterfield ... no potties and no kiddos! We rescheduled for next Wednesday, but there were 58 really upset kids today.
Hoping to finalize more details tomorrow or at least learn soon whether or not it is an option to be seen at the Baylor gait lab. Thanks for praying today ... a few new doors opened and you've gotta be thankful for the good positive things.
"Don't let your hearts be troubled. Trust in God, and trust in me." John 14:1
je
My dr. appt. with the STL surgeon went okay today. He agreed that I should pursue more ortho opinions at the same time we are looking at anything else nerve related. The EMG/NCV test is the test that I've done twice in the past; can do it again, but probably won't show any change. Normally a nerve disorder is not something that suddenly appears after surgery; he really thinks we'd had seen it surface before now if there was a nerve issue.
He is calling two doctors in Dallas and I'm calling two doctors (checking on appointments). I called my two as soon as I made it back to the car in the parking lot and got two appt.'s scheduled for Thursday, Oct. 9th. Need to see if we can line up at least one more for either Oct. 9th or 10th. The goal is to get "fresh eyes" and see if two agree on something else that should be tried. He did say that we may hear nothing new or something totally fresh just don't know, but we both thought it was worth trying. All parties know we are not left with many options or at least it seems that way at the moment.
E-mailed Chicago and updated her tonight ... she e-mailed back right away and suggested that I visit a placed called Baylor Motion and Sports Performance Center (a state of the art gait analysis lab) in Baylor, Texas. Dr. P couldn't believe that she remembered this tonight, so maybe someone else was praying at that moment! This place is exactly what we need ....
The center conducts research into the link between orthopaedics and the movement of the body to improve treatment, therapies and sports performance by analyzing three-dimensional computer assisted motion analysis. The laboratory uses a 12-camera motion capture system, force platform, electromyographical system, six-degree-of-freedom electrogoniometer and foot pressure measurement system.
The lab also can produce electromyographic recordings, which provide information on muscular activity. The reports indicate which muscles are being fired and how strongly they're being fired. The lab synchronizes all the data gathered along with a digital video into a 3-D skeletal reconstruction and model of movement in real time. The results are presented on a simple interactive CD. A clinician can then manipulate the skeletal image in 3-D space, while simultaneously viewing the digital video or the graphs detailing the joint angle, velocity or athlete's acceleration. It can show any movement, including how and when the toe strikes the ground, how the pelvis rotates or the shoulders sway.
It is pretty high tech! We are going to check in the next few days on what it takes to be seen there & if this could be done on the same trip to consult w/the other doctors. Pray that if I'm supposed to get an appointment, that it will happen in a timely manner. The gait test must really be worth doing, because the Chicago surgeon is really trying to find somewhere to have it done.
I was pleased that I was able to schedule w/two Dallas docs so quickly this afternoon. We are going to do an MRI of the foot in St. Louis soon, so I can take these films with me.
Our big, first day at JA today was a bust due to a good ole' water main break in Chesterfield ... no potties and no kiddos! We rescheduled for next Wednesday, but there were 58 really upset kids today.
Hoping to finalize more details tomorrow or at least learn soon whether or not it is an option to be seen at the Baylor gait lab. Thanks for praying today ... a few new doors opened and you've gotta be thankful for the good positive things.
"Don't let your hearts be troubled. Trust in God, and trust in me." John 14:1
je
Tuesday, September 23, 2008
Gait test not happening ....
On Monday I learned that there is no one at Barnes/Wash U that does the gait analysis test. Supposedly they are building a new gait study lab and it will be ready sometime next year. There is also no one else in St. Louis that seems to do the test. Medical staff in Chicago came up with the same names that I had already tried. I also received a phone call on Monday stating that the Oct. 6th appt. w/the neurologist and physical therapist had to be moved to November 12th. I took the November appt., but do not feel like I can wait over another month for some action with the pain and function (or lack of) problem.
There was some mis-information last week, and I don't think the gait test can be performed in Chicago as originally thought. They do the test for children only. We may be able to do part of the test (as we've done twice in the past) in STL, but it would be a repeat of two previous EMG tests. It is my understanding that these tests usually don't change unless there is a brain injury ... not me! Still checking into the specifics on this.
Will meet with the STL ortho surgeon tomorrow afternoon and will see if he recommends going to Dallas for more opinions. Any way you look at it, it seems to me that we need more opinons. Will update the blog tomorrow evening ....
je
There was some mis-information last week, and I don't think the gait test can be performed in Chicago as originally thought. They do the test for children only. We may be able to do part of the test (as we've done twice in the past) in STL, but it would be a repeat of two previous EMG tests. It is my understanding that these tests usually don't change unless there is a brain injury ... not me! Still checking into the specifics on this.
Will meet with the STL ortho surgeon tomorrow afternoon and will see if he recommends going to Dallas for more opinions. Any way you look at it, it seems to me that we need more opinons. Will update the blog tomorrow evening ....
je
Sunday, September 21, 2008
Illinois weekend ....
We (mom & I) ended up going to central Illinois this weekend to visit my grandma who was in the hospital with several blood clots. We surprised her on Saturday afternoon and it was good to see her. She is doing better and is receiving good care, so hopefully she'll get to home in a few days. It felt strange to be visiting someone instead of me being there!
The foot is about the same. It was really swollen at the ankle, which is unusual, on Saturday night - probably because I sat most of the day. I have an appt. late afternoon on Wednesday with my STL orthopod. I have questions about seeking more advice in TX, would like to have an MRI done and want to see if he has any additional insight on where to go for the gait test. Wednesday will also be our first day this year with students at JA, so that will be a busy day.
I did find out that the neurologist that I'm supposed to see on 10/6 is really young & hasn't practiced medicine very long, which makes me leery. Everyone needs a start somehow, but I'm not sure if it is my case! Trying to stay "open minded" about it all and keep a positive attitude, but I really think I'd be wise to continue to pursue the ortho route at the same time we explore neuro possibilities. I definitely don't want a repeat of last Tuesday.
Need to unpack a few things and get ready for a busy week. Keep praying for the following:
- Blood clots for Grandma E to dissolve quickly.
- We find a place in STL to schedule the gait analysis test.
- Wisdom for Dr. P & Dr. K & JE ... that Wed. appt. (3:00) goes well.
- Decision making in whether or not we should go to TX soon.
- Pain management; especially as I'm on my feet more w/students.
Love & hugs,
je
The foot is about the same. It was really swollen at the ankle, which is unusual, on Saturday night - probably because I sat most of the day. I have an appt. late afternoon on Wednesday with my STL orthopod. I have questions about seeking more advice in TX, would like to have an MRI done and want to see if he has any additional insight on where to go for the gait test. Wednesday will also be our first day this year with students at JA, so that will be a busy day.
I did find out that the neurologist that I'm supposed to see on 10/6 is really young & hasn't practiced medicine very long, which makes me leery. Everyone needs a start somehow, but I'm not sure if it is my case! Trying to stay "open minded" about it all and keep a positive attitude, but I really think I'd be wise to continue to pursue the ortho route at the same time we explore neuro possibilities. I definitely don't want a repeat of last Tuesday.
Need to unpack a few things and get ready for a busy week. Keep praying for the following:
- Blood clots for Grandma E to dissolve quickly.
- We find a place in STL to schedule the gait analysis test.
- Wisdom for Dr. P & Dr. K & JE ... that Wed. appt. (3:00) goes well.
- Decision making in whether or not we should go to TX soon.
- Pain management; especially as I'm on my feet more w/students.
Love & hugs,
je
Friday, September 19, 2008
Hmmm .... What to do next?
This has been a challenging week with really no progress. After lots of phone calls, I haven't found a place to have the gait test done. It isn't done at Wash U/Barnes and they aren't really sure where I could have it done. My Chicago dr. advised that I meet with a neurologist (specializes in movement disorders) and physical therapist (at the same time) together. I have this appt. scheduled for October 6th, but I have reservations about it. It is long & complicated but their initial thinking has already been ruled out by two previous neurologists, so I am somewhat thinking it isn't going to be anything I haven't heard already. My confidence in that medical system is really lacking & I haven't been impressed w/what I have seen.
I can have the gait test done in Chicago, but it is in two parts and would involve two days (mid-week) there. I'd need to miss about 2 1/2 days of work to accomplish it all, hotel expense, etc.
I'm meeting with my STL surgeon next Wednesday and am going to explore the possibility of going to Dallas for more ortho opinions. I am not comfortable relying only on the neurologist appt., because this may not be a nerve problem at all. I have had multiple nerve tests that have always come back with no problems. After the fiasco with the appt. this week, I am not looking forward to going down there again and being disappointed, etc. Time is ticking away here, so I'm trying to be somewhat proactive and not put all of our faith in one person/appt. Overall I'm feeling pretty frustrated that I'm supposed to be having a test that is so specialized, we can't find anyone here to do it. The test may/may not reveal what we need to know. I think I need to be exploring the nerve issue possibility and the ortho route at the same time, but this is much easier said than done. Coordinating 3 appointments in Dallas on the same day will be a major task in itself.
Last night I went to a shoe store that specializes in quality shoes for people with foot issues. They had about 40 shoe styles; I was there over an hour and tried on over half of them. I could not wear ANY of them. It was very disheartening to say the least.
Update: After I typed the above note, I got an e-mail stating that there are actually two tests that need to happen:
1. Gait test - walking which is videotaped and evaluated
2. EMG/NCV - nerve test
I am fairly sure that we've already done the second test two times and it came back totally fine (i.e. all nerves working). I guess anything can change, but I was told at one point that usually those tests don't change with time.
Better get to the gym .... need to relieve some stress on the bicycle.
je
I can have the gait test done in Chicago, but it is in two parts and would involve two days (mid-week) there. I'd need to miss about 2 1/2 days of work to accomplish it all, hotel expense, etc.
I'm meeting with my STL surgeon next Wednesday and am going to explore the possibility of going to Dallas for more ortho opinions. I am not comfortable relying only on the neurologist appt., because this may not be a nerve problem at all. I have had multiple nerve tests that have always come back with no problems. After the fiasco with the appt. this week, I am not looking forward to going down there again and being disappointed, etc. Time is ticking away here, so I'm trying to be somewhat proactive and not put all of our faith in one person/appt. Overall I'm feeling pretty frustrated that I'm supposed to be having a test that is so specialized, we can't find anyone here to do it. The test may/may not reveal what we need to know. I think I need to be exploring the nerve issue possibility and the ortho route at the same time, but this is much easier said than done. Coordinating 3 appointments in Dallas on the same day will be a major task in itself.
Last night I went to a shoe store that specializes in quality shoes for people with foot issues. They had about 40 shoe styles; I was there over an hour and tried on over half of them. I could not wear ANY of them. It was very disheartening to say the least.
Update: After I typed the above note, I got an e-mail stating that there are actually two tests that need to happen:
1. Gait test - walking which is videotaped and evaluated
2. EMG/NCV - nerve test
I am fairly sure that we've already done the second test two times and it came back totally fine (i.e. all nerves working). I guess anything can change, but I was told at one point that usually those tests don't change with time.
Better get to the gym .... need to relieve some stress on the bicycle.
je
Tuesday, September 16, 2008
Frustrating Afternoon .....
Let me start by thanking you for praying this afternoon for the gait test. I was calm, ready to go, had typed out a bunch of notes in bullet format to make it easier for the person to "come up to speed," etc., but the test was a total bust today!!! My experience w/medical care at Wash U has always left a lot to be desired and unfortunately today was no different.
I spent an hour driving to get to the appointment .... waited 20 minutes & filled out the usual paperwork. Describing surgeries for over 4 yrs. is enough to give you a headache alone. There was construction happening in the building where the office was located and it was so much that I had to escorted to the area (never would have found it by myself).
I was told that this office did the gait test through their physical therapy dept., but they were clueless as to what test had been ordered from my doctor's office in Chicago. Supposedly there are several different "gait tests." Some they do and some they don't. I firmly said, "Do them all!" They didn't go for that.
I attempted to explain that we were trying to see what was happening with the nerves/muscles, etc. as I was walking & the test was supposed to tell what was firing, wasn’t firing, etc. The pt gal told me three things:
a. She didn’t know which gait test we wanted …
b. They had new equipment that she didn’t know how to operate it
(don’t you love it!)
c. Exercise will not correct my problem (heel and toe issues)
She watched me walk and took a short video to send to a neurologist, but that was all that occurred. Honestly, I’m not sure if this office is the right place or not. Obviously I need to go back if it is the right place, but I need to see what exactly they should be doing & then figure out if they can do it or not.
Needless to say I left the office a 4:30 and was more frustrated than ever. I went and got an iced-tea and chocolate chip cookie at Bread Co. across from the hospital and attempted to calm down before driving home in rush hour traffic. You almost have to laugh about it or you'd be crying about it ..... I've NEVER heard the "new equipment" line before!! Chuck up that $35 co-pay & taking 3 hours off work. All I can say is that if this is the best we have in STL, I need to go back to Chicago. The medical "process" to everything is just so frustrating .... nothing happens fast or is truly imporant to anyone else.
Going week after week with no measureable improvment or progress is what upsets me the most. Weeks turn into months very quickly. I e-mailed my Chicago orthopod and explained the situation and asked for advice on what to do next ... I'm sure the rest of this week will be lost.
Thanks again for praying and thinking about me this afternoon ... keep believing that we'll get it figured out one way or another at some point.
je
P.S. If there is ever equipment that you don't know how to operate, don't tell
anyone.
I spent an hour driving to get to the appointment .... waited 20 minutes & filled out the usual paperwork. Describing surgeries for over 4 yrs. is enough to give you a headache alone. There was construction happening in the building where the office was located and it was so much that I had to escorted to the area (never would have found it by myself).
I was told that this office did the gait test through their physical therapy dept., but they were clueless as to what test had been ordered from my doctor's office in Chicago. Supposedly there are several different "gait tests." Some they do and some they don't. I firmly said, "Do them all!" They didn't go for that.
I attempted to explain that we were trying to see what was happening with the nerves/muscles, etc. as I was walking & the test was supposed to tell what was firing, wasn’t firing, etc. The pt gal told me three things:
a. She didn’t know which gait test we wanted …
b. They had new equipment that she didn’t know how to operate it
(don’t you love it!)
c. Exercise will not correct my problem (heel and toe issues)
She watched me walk and took a short video to send to a neurologist, but that was all that occurred. Honestly, I’m not sure if this office is the right place or not. Obviously I need to go back if it is the right place, but I need to see what exactly they should be doing & then figure out if they can do it or not.
Needless to say I left the office a 4:30 and was more frustrated than ever. I went and got an iced-tea and chocolate chip cookie at Bread Co. across from the hospital and attempted to calm down before driving home in rush hour traffic. You almost have to laugh about it or you'd be crying about it ..... I've NEVER heard the "new equipment" line before!! Chuck up that $35 co-pay & taking 3 hours off work. All I can say is that if this is the best we have in STL, I need to go back to Chicago. The medical "process" to everything is just so frustrating .... nothing happens fast or is truly imporant to anyone else.
Going week after week with no measureable improvment or progress is what upsets me the most. Weeks turn into months very quickly. I e-mailed my Chicago orthopod and explained the situation and asked for advice on what to do next ... I'm sure the rest of this week will be lost.
Thanks again for praying and thinking about me this afternoon ... keep believing that we'll get it figured out one way or another at some point.
je
P.S. If there is ever equipment that you don't know how to operate, don't tell
anyone.
Sunday, September 14, 2008
Send up prayers on Tuesday afternoon ....
The gait test is Tuesday afternoon at 3pm and it is time for the prayer brigade once again .... pray that it reveals something either way. We need to know if there is a nerve problem or if there is still something bony wrong. The next step will then be to decide what we are going to do next. I'm trying to decide if we need to fly to Dallas for more opinions or if we wouldn't hear much new (it is a hard call). The good thing about Dallas is that there are four recommended foot surgeons there, so I could see multiple doctors in one trip.
Emotionally I'm doing okay .... still have lots of thoughts about continuing to work with the Chicago dr., but trying to take it one day at a time.
I'm continuing to exercise pretty hard. I did 5 miles on Saturday and 5 miles on Sunday on various cardio machines at the gym. The past two nights have been the first nights in easily two years that I have slept without medication ... I'm hoping it continues.
This is my last week without kiddos at work, so we are busy finalizing changes and making final preparations. My first teacher training session is tomorrow night, so long day on Monday.
Hope you have a joyous week!
je
Emotionally I'm doing okay .... still have lots of thoughts about continuing to work with the Chicago dr., but trying to take it one day at a time.
I'm continuing to exercise pretty hard. I did 5 miles on Saturday and 5 miles on Sunday on various cardio machines at the gym. The past two nights have been the first nights in easily two years that I have slept without medication ... I'm hoping it continues.
This is my last week without kiddos at work, so we are busy finalizing changes and making final preparations. My first teacher training session is tomorrow night, so long day on Monday.
Hope you have a joyous week!
je
Thursday, September 11, 2008
Gait Test Scheduled
I FINALLY got the test scheduled today .... we are doing it at 3:00pm next Tuesday (Sept. 16th). The test is with Washington Univ. School of Medicine/Barnes. I do know one person that told me this office does a good job with the test, but hardly anyone does it so there wasn't a lot of choice. I am hoping that it reveals something! It isn't done by a doctor, so that had me a wee bit concerned. Not sure if it is one of those things that I'll be able to tell results right away or may need to wait for a fax report.
I still have an appt. scheduled with another orthopedic surgeon in Springfield, MO for 9/19, but I'm thinking I'm going to push that back. I need the results of the gait test first and am still not convinced that it is worth the expense. I could fly to Dallas and consult w/4 doctors for less than the one visit in Springfield will cost - go figure! I still really don't want to do anything else with more doctors, so I'll do the test and see with the Chicago dr. thinks. Wait, I know!
The area at the top of my incision that had not healed is now looking a bit better. It has been really slow to heal and I've had it covered all week, which seems to be working. As long as nothing weird happens with it, we might have turned the corner with that.
Last night I skipped the gym and came home and planted mums outside instead. I needed a break & was trying to get them in before it rains all weekend.
je
I still have an appt. scheduled with another orthopedic surgeon in Springfield, MO for 9/19, but I'm thinking I'm going to push that back. I need the results of the gait test first and am still not convinced that it is worth the expense. I could fly to Dallas and consult w/4 doctors for less than the one visit in Springfield will cost - go figure! I still really don't want to do anything else with more doctors, so I'll do the test and see with the Chicago dr. thinks. Wait, I know!
The area at the top of my incision that had not healed is now looking a bit better. It has been really slow to heal and I've had it covered all week, which seems to be working. As long as nothing weird happens with it, we might have turned the corner with that.
Last night I skipped the gym and came home and planted mums outside instead. I needed a break & was trying to get them in before it rains all weekend.
je
Tuesday, September 9, 2008
Appointment scheduling in process ...
We made it home from Illinois safely on Sunday night. After lots of phone calls yesterday, I think I have found a place with Washington University/Barnes Hospital that will do the gait test. You wouldn't believe how many places I called that didn't have any idea what this test was or involved.
I am waiting for some information to be faxed from my Chicago doctors office to Barnes, before I can schedule the appointment. Pray that this occurs soon ... I want to get this done, so we can get the results.
I have been on my feet a lot more the past two days (preparing for kids in two weeks) and have really noticed an increase in pain. I have also noticed how slow I walk. I was trying to walk with someone through a big warehouse today and what would have been a "normal" pace for the average person was entirely too fast for me.
Hoping to get the gait test scheduled soon ....
je
I am waiting for some information to be faxed from my Chicago doctors office to Barnes, before I can schedule the appointment. Pray that this occurs soon ... I want to get this done, so we can get the results.
I have been on my feet a lot more the past two days (preparing for kids in two weeks) and have really noticed an increase in pain. I have also noticed how slow I walk. I was trying to walk with someone through a big warehouse today and what would have been a "normal" pace for the average person was entirely too fast for me.
Hoping to get the gait test scheduled soon ....
je
Saturday, September 6, 2008
Chicago Appointment Details
Good Morning! I apologize for the delay in writing and not updating on Friday night. Yesterday was a really long day. I had to find a Panera bread to get wifi access and then I needed a few minutes to sit and type. My mom's sister is in IL from FL, so we had dinner with her last night. We are staying at the Eickhorst family farm and there is no wifi in the corn field.
Here is the scoop .....
Thank you, thank you for praying & thinking of us during a challenging appt. yesterday ... we felt it! Overall the appt. went much better than I expected and I was able to make it through the entire meeting without any tears. We waited over an hour to see her, but it was worth it. I wore a new fall outfit and managed to find a pair of shoes that I could get into at Macy's, so I was feeling good. I had a list of 22 typed questions that I was prepared to ask. I had prayed hard before the appt. for strength to get through whatever would happen.
Dr. P was her usual calm, gracious self and was happy to see us. She started by stating that she felt really awful about my situation and that she knew I was in a hard spot. She explained that her reluctance to recommend further surgery simply came from the fact that most of the operations we have done have not yielded the intended result. She wanted to examine my foot & then wanted to hear me talk about it, so that happened. She told me that she has thought and thought about my situation and how to help.
She thought that the way the foot looked and healed from the transplant (TX) surgery was the best that she'd ever seen. The swelling was totally gone and the overall appearance looked fantastic .... I'd agree. She said again that my TX dr. did an awesome job.
She thoroughly examined the foot, moved it every which way, and watched me walk in her hallway multiple times. She agreed fully that we still have two substantial problems:
1. Heel problem - I walk on the heel only and the toes remain fixed off the ground Even in a shoe, I still bear weight only on the heel. She tried to push it down manually and it pops right back up. She couldn't believe that they didn't go down when the toes got tired, but I said they are always fixed up.
2. Forefoot motion - none exists
The thing she is most concerned about is the first problem. She stated that it is definately not a "liveable" situation, which was good to hear this clearly stated. I will have back, knee, hip issues occur if it is not fixed. She was surprised that I am not in a lot of pain now, w/the odd gait pattern that exists. There is no obvious reason why this has happened & she has not seen it before. She isn't sure how the heel situation can be fixed, but she wants more information.
In the middle of her looking over the foot, the idea came to her to have this test run called "Gait Analysis." It was like a little lightbulb just went off in her head. It is a test related to nerves and walking that clearly shows what is working, firing, and happening when I step and walk. (We've done nerve tests before, but never while I was walking.) She even said herself that the idea just came to her, so I felt like someone was praying for wisdom at that moment. The test is usually run on children, but it is also used for adults.
She does know (at a minimal level) the doctors in Baltimore and Dallas, that my STL surgeon recommended for a second opinion. Her advice was to do the gait test and we'll see what that reveals, before we decide on any next step. She thought it was premature for me to meet with the amputation doctor or spend a lot of money on other opinions right now. They may still be needed, but for today her recommendation was to do the test, wait, and see what happens. She wasn't convinced that I'd hear a lot different or new in Baltimore or Dallas and she totally understands that I don't want to spend a lot of money without good reason.
Although it was hard for me to hear do the test and wait, I was amazingly okay with that advice yesterday. She gave no indication that she was done working with me or wouldn't continue to meet/consult. If the gait test comes back normal, we will then need to figure out the next best step. I was going to ask if she'd continue to consult, but I skipped that since she didn't bring it up. She knows I am doing everything I can from my end to make this better & fully agreed that it is not about me trying any harder.
I didn't ask the majority of the questions that I had prepared because I felt like the conversation just kinda played out differently and most were "ahead" of what she was thinking. I made it very clear that I didn't want to rush or pressure her, which I think helped. She may still not recommend more surgery, know what to do next, and we may still be totally out of options, but none of that happened yesterday. She said to keep exercising on my own and hold off on more pt for now.
Finding someone to do the gait analysis test in STL is going to be somewhat challenging, but she is going to see if the person in her office that does it might know a place where it can be done in St. Louis. As we wrapped up the appointment, she gave me a hug and told me that we needed to get my foot functioning as pretty as I looked (big self esteem boost, that I needed).
I was very thankful for ....
- no indication that she was going to stop working with me.
- amount of time she spent with us was significant
- that she realized a real problem still existed and that it needs attention
- waiting; perhaps this is the wisdom that was revealed - perhaps surgery would be
more appropriate in several months.
- candid advice; we don't have to hurry off to see a new dr. tomorrow
Although we don't have any big "plan" in place, for today I can live with doing the gait test, continuing to exercise and then talking further. I left her office with a great amount of peace and thankfulness for our doctor/patient relationship .... I will never find anyone that cares more & was very happy that for now we can continue to work together.
Many thanks again for praying .... we felt the encouragement and hope to hang in there a bit longer yesterday.
Love & hugs,
jenny
Here is the scoop .....
Thank you, thank you for praying & thinking of us during a challenging appt. yesterday ... we felt it! Overall the appt. went much better than I expected and I was able to make it through the entire meeting without any tears. We waited over an hour to see her, but it was worth it. I wore a new fall outfit and managed to find a pair of shoes that I could get into at Macy's, so I was feeling good. I had a list of 22 typed questions that I was prepared to ask. I had prayed hard before the appt. for strength to get through whatever would happen.
Dr. P was her usual calm, gracious self and was happy to see us. She started by stating that she felt really awful about my situation and that she knew I was in a hard spot. She explained that her reluctance to recommend further surgery simply came from the fact that most of the operations we have done have not yielded the intended result. She wanted to examine my foot & then wanted to hear me talk about it, so that happened. She told me that she has thought and thought about my situation and how to help.
She thought that the way the foot looked and healed from the transplant (TX) surgery was the best that she'd ever seen. The swelling was totally gone and the overall appearance looked fantastic .... I'd agree. She said again that my TX dr. did an awesome job.
She thoroughly examined the foot, moved it every which way, and watched me walk in her hallway multiple times. She agreed fully that we still have two substantial problems:
1. Heel problem - I walk on the heel only and the toes remain fixed off the ground Even in a shoe, I still bear weight only on the heel. She tried to push it down manually and it pops right back up. She couldn't believe that they didn't go down when the toes got tired, but I said they are always fixed up.
2. Forefoot motion - none exists
The thing she is most concerned about is the first problem. She stated that it is definately not a "liveable" situation, which was good to hear this clearly stated. I will have back, knee, hip issues occur if it is not fixed. She was surprised that I am not in a lot of pain now, w/the odd gait pattern that exists. There is no obvious reason why this has happened & she has not seen it before. She isn't sure how the heel situation can be fixed, but she wants more information.
In the middle of her looking over the foot, the idea came to her to have this test run called "Gait Analysis." It was like a little lightbulb just went off in her head. It is a test related to nerves and walking that clearly shows what is working, firing, and happening when I step and walk. (We've done nerve tests before, but never while I was walking.) She even said herself that the idea just came to her, so I felt like someone was praying for wisdom at that moment. The test is usually run on children, but it is also used for adults.
She does know (at a minimal level) the doctors in Baltimore and Dallas, that my STL surgeon recommended for a second opinion. Her advice was to do the gait test and we'll see what that reveals, before we decide on any next step. She thought it was premature for me to meet with the amputation doctor or spend a lot of money on other opinions right now. They may still be needed, but for today her recommendation was to do the test, wait, and see what happens. She wasn't convinced that I'd hear a lot different or new in Baltimore or Dallas and she totally understands that I don't want to spend a lot of money without good reason.
Although it was hard for me to hear do the test and wait, I was amazingly okay with that advice yesterday. She gave no indication that she was done working with me or wouldn't continue to meet/consult. If the gait test comes back normal, we will then need to figure out the next best step. I was going to ask if she'd continue to consult, but I skipped that since she didn't bring it up. She knows I am doing everything I can from my end to make this better & fully agreed that it is not about me trying any harder.
I didn't ask the majority of the questions that I had prepared because I felt like the conversation just kinda played out differently and most were "ahead" of what she was thinking. I made it very clear that I didn't want to rush or pressure her, which I think helped. She may still not recommend more surgery, know what to do next, and we may still be totally out of options, but none of that happened yesterday. She said to keep exercising on my own and hold off on more pt for now.
Finding someone to do the gait analysis test in STL is going to be somewhat challenging, but she is going to see if the person in her office that does it might know a place where it can be done in St. Louis. As we wrapped up the appointment, she gave me a hug and told me that we needed to get my foot functioning as pretty as I looked (big self esteem boost, that I needed).
I was very thankful for ....
- no indication that she was going to stop working with me.
- amount of time she spent with us was significant
- that she realized a real problem still existed and that it needs attention
- waiting; perhaps this is the wisdom that was revealed - perhaps surgery would be
more appropriate in several months.
- candid advice; we don't have to hurry off to see a new dr. tomorrow
Although we don't have any big "plan" in place, for today I can live with doing the gait test, continuing to exercise and then talking further. I left her office with a great amount of peace and thankfulness for our doctor/patient relationship .... I will never find anyone that cares more & was very happy that for now we can continue to work together.
Many thanks again for praying .... we felt the encouragement and hope to hang in there a bit longer yesterday.
Love & hugs,
jenny
Wednesday, September 3, 2008
Friday Chicago appt.
We leave late afternoon tomorrow for Illinois. We'll spend the night tomorrow night with relatives and then will head to Chicago on Friday morning for our appt. with the orthopedic surgeon (11am).
Specific prayer requests:
- Pray that she will continue to consult w/me, although it appears she is out of
answers or a fix. My two ortho dr.'s are at a loss regarding what to do next.
- Pray that I get most/all of my questions answered ... long list.
- We are trying to make some decisions about getting a second opinion;
insurance is a big issue with one place & we need wisdom to make the right choice.
Pray for strength, grace & that I can be be rational or not emotional during our Friday meeting. I find myself easily in tears these days and I need to get through the appt. and remain in one piece. I do want to go, although I know it will not be easy. Last but not least, I really want to exhibit strong faith in all of this ... pray that He will be glorified and honored.
Good thoughts that I read today from Max Lucado .....
What is God doing when we are in a bind? When the lifeboat springs a leak? When the rip cord snaps? We know what we are doing ... but what does God do? He fights for us. He steps into the ring and points us to our corner and takes over. "Remain calm; the Lord will fight for you." (Exod. 14:14) His job is to fight. Our job is to trust. Just trust. Not direct. Or question ... Our job is to pray and wait.
Lord help us to pray, wait and trust ... no matter how long it takes.
Taking the laptop and will try to update the blog on Friday evening ....
Love & hugs,
jenny
He is my defender; I will not be defeated - Psalm 62:6
Specific prayer requests:
- Pray that she will continue to consult w/me, although it appears she is out of
answers or a fix. My two ortho dr.'s are at a loss regarding what to do next.
- Pray that I get most/all of my questions answered ... long list.
- We are trying to make some decisions about getting a second opinion;
insurance is a big issue with one place & we need wisdom to make the right choice.
Pray for strength, grace & that I can be be rational or not emotional during our Friday meeting. I find myself easily in tears these days and I need to get through the appt. and remain in one piece. I do want to go, although I know it will not be easy. Last but not least, I really want to exhibit strong faith in all of this ... pray that He will be glorified and honored.
Good thoughts that I read today from Max Lucado .....
What is God doing when we are in a bind? When the lifeboat springs a leak? When the rip cord snaps? We know what we are doing ... but what does God do? He fights for us. He steps into the ring and points us to our corner and takes over. "Remain calm; the Lord will fight for you." (Exod. 14:14) His job is to fight. Our job is to trust. Just trust. Not direct. Or question ... Our job is to pray and wait.
Lord help us to pray, wait and trust ... no matter how long it takes.
Taking the laptop and will try to update the blog on Friday evening ....
Love & hugs,
jenny
He is my defender; I will not be defeated - Psalm 62:6
Monday, September 1, 2008
Prayer needed ....
We are at a big crossroads with my foot situation. Please pray really hard this week about wisdom, comfort, answers, and peace related to it all. A lot has happened this weekend (all negative), but it is a bit much to share at this time. I've had meltdown after meltdown all weekend and emotions are running high at the moment. Pray that I'm able to function at work this week and concentrate. We are still going to Chicago at the end of the week, although the appt. will be somewhat different and a tough one to get through. We're trying hard not to give up, although there aren't many options left.
Love,
Jenny
Love,
Jenny
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