Big Prayer Week .....

This week needs to be a big one on the prayer front, so here are the requests:

1. Dr. B will get w/the radiologist early this week and will confirm if there is bone infection present or not.

2. Assuming they will need additional confirmation, that the indium (dye blood/scan) can be scheduled right away.

3. Dr. K (STL orthopod) talks w/Dr. B and gives his opinion, after reviewing the latest MRI scan. Good communication & coordination needs to happen here.

4. Timing - that things would move along & progress quickly toward a plan ... pray that God allows the next step in the medical process to happen ASAP.

This would be a lot to have happen in one week, but we're praying & believing big! The main thing that we need to know for certain ASAP is if there is or is not bone infection present. After seeing the scans on Friday & a few other minor things that have occurred, my gut feeling is that there IS a strong likelihood of infection. The dye test will require two days at the downtown Barnes hospital.

If we find out that infection exists, it will mean that it has been there since last November and was missed on a November, 2008 MRI radiologist report. You don't want to know the story behind this, as it will be more upsetting than anything you've heard in a long time.

Timing is really critical here .... I have work travel that I am holding on,
until we get this figured out. My attitude is up & down w/all of this .... I am hoping it will be better when we have a definitive answer on the bone infection question.

In His Grip,
je

Good News and Bad News ....

Just when you think you are almost done and have completed all the necessary tests, I’m not!! Today was a “good news” and “bad news” appointment …..

Bad News: The radiology report stated that there was no infection present, but Dr. B feels otherwise. Dr. B showed me color variation on the MRI. The bone area that he is concerned about is directly under the area that is open. Good bone is normally dark in color and infected bone is more of a white color. Well, the bone that is directly under the open area on the MRI film is white on my MRI scan.

So, Dr. B wants 2 weeks to talk with the radiologist and see why they feel that there is no infection present. He doesn’t want to do “exploratory” surgery and I don’t either. There is another test that may be then scheduled with dye, blood test and more scans to see if it shows an infection. Not sure why, but he didn’t want to order that test today.

If there is bone infection, then my STL orthopod would need to get involved and be present for the surgery as well ….. he’d do the “bony” part of the operation and the plastic guy would do the soft tissue part. Thankfully, they do both operate at Barnes West Co. on Thursdays. I was extremely frustrated that he had not talked w/the radiologist before I got there today – in my opinion, that should have been done in the past three days. So, it is highly likely that nothing is going to really progress on this in the next 4-6 weeks, unless Dr. B is able to talk to the radiologist right away. He noted that the open areas are getting larger.

Good News: Dr. B is being very thorough, covering all his bases, looking at all possibilities, and is trying to get to the bottom of the situation. I didn’t have my normal $50 co-pay because I was in and out of his office in like ten minutes. He gave no indication that he wouldn’t keep working with me.

Needless to say, this wasn’t the news I was hoping to hear today. I was so hoping to have the surgery & do recovery during the month of September ….. Oct/Nov. are not good months for me to have to shuffle around things at work. I am tired of buying gauze, tape, etc. & re-bandaging multiple times during the day. There is no sense of urgency with anyone on this. Today marks the six week mark, when I first saw the plastic surgeon. So, no surgery scheduled yet.

Big prayer request: Pray that Dr. B is able to consult w/the radiologist early next week and that things will move along. My STL orthopod is also now involved, so this is more coordination that needs to happen.

Need to get back to work and try to focus ….. je

No Infection!!

NO BONE INFECTION!!! I got the MRI report today from Barnes and it didn't show anything abnormal, which is a very good thing. Now there should be no reason for the plastic surgeon to be unwilling to close it. Will update more after the Friday appointment ....

je

Follow-Up Appt. on Friday ...

I have a follow up appt. scheduled with Dr. B for this Friday, August 28th at 12:30pm at his West Co. office (on Barnes West. Co campus). Very thankful that I was able to schedule quickly. We will discuss the MRI results and hopefully come up with a plan. I have absolutely no reason to believe that he won't agree w/plans to close it, but it is always a fear when you have had doctors bail on the situation before. Pray that he agrees to help!

I did find out from his nurse today that he does do some surgery at Barnes West County .... it all depends on how involved & complicated the procedure. Anything complex is downtown only, so hopefully mine is a simple deal.

je

MRI fiasco ....

The MRI appt. today was one huge fiasco! There was so much that went wrong, I won’t even begin to remember it all to share with you. It is behind me now, but I am SO, SO, SO done with Barnes downtown. I was at the MRI appointment for 4 ½ hours!!!

There were no orders for the test from the dr. when I arrived. The MRI machine was a specialized one for a foot & my foot wouldn’t fit in the tub thing properly (lack of flexibility), so it got stuck. I was in a ton of pain before anything even started (from all the positioning nonsense) and then I had to stay still in that position for what ended up being 2 hrs. & 15 minutes. I told the technician in the middle of it to just keep going w/the scans, even if I moved …… I wasn’t about to start the process over again. I knew there was no way I could remain in the crazy position that they wanted w/my foot all bent a weird way. I’ve never had issues with a simple MRI before & to my knowledge there shouldn’t be pain involved.

In the middle of it, some genius radiologist decided that I should have been having some contract material via IV, so all came to a halt to get that started. Small veins & a rookie IV tech took up another 45 minutes.

My toes were purple when I was done … I limped to the cafeteria to get a drink to take a pain pill. And then to top it all off – the parking garage attendant didn’t have change for a $50 bill, so I waited for someone to bring smaller bills. I’m emotionally finished forever with Barnes downtown!!

I will be stunned if the test reveals anything substantial. I was in there for so long that there wasn't even a "billing code" for the time that they had spent doing the test .... can't wait to see that bill.

I’ve already decided that if I can’t have this dr. close it at Barnes West Co. hospital, then I am going to find another doctor (no idea where). Hoping to have test results back on Wednesday or Thursday of this week …… pray that the results don’t get lost, deleted, etc. My toes all need some TLC tonight.

je

MRI Appt. tomorrow ....

We're back from Dallas! My prayer all last week and early on Friday morning was that it would be clearly obvious which doctor I should be working with to get the incision situation closed. It was overwhelmingly obvious that I need to continue working with the STL plastic surgeon that I saw on August 14th and hopefully get him to close it.

The Dallas dr. was very nervous about my past history and wasn't nearly as thorough as I need in a physician. He didn't want to discuss much at all, hardly asked any questions, wanted me to try an Rx of neosporin for two weeks and then come back if it doesn't heal naturally. I've already been using what he prescribed & he knew it! He took a biopsy of the area but I should not have let him do it, because now there is a larger area open, draining, hurting, throbbing, etc. (made shopping challengign). I didn't think it was going to be a big deal - wrong! He was spooked by why it had not closed naturally ..... he had no idea how to explain it, & thought it would result in a skin graft eventually. Like when? It takes 5 days to get the biopsy results, but he said himself that he doubted it would yield anything substantial.

I didn't like him well enough to merit traveling to Dallas, more expense, follow-up hassle, etc. I need someone who is overly thorough with this (STL dr. qualifies), as we don't want anything messed up now.

I moved my MRI appt. up, so I have it at 8am on Monday (8/24) at Barnes downtown. Hopefully by Wed/Thursday of this week, we can get some treatment plan in place and move forward. Now that the area is larger there is more chance for infection, so I am really keeping it carefully covered.

Other than the medical stuff & a bit of disappointment with that, we had great fun visiting Dallas & I enjoyed getting pampered for a few days. I just love southern hospitality & sweet tea!

Need to get to bed, as I'll be up w/the birds and headed downtown early tomorrow morning. Keep praying for NO bone infection to show up on the MRI .... the problem will quickly become much more substantial, if this exists. Also pray that the STL dr. will be quick w/a treatment plan. Hoping to get MRI results back on Tuesday, but will ask about this tomorrow.

Thanks for praying!
Jenny

Dallas appt. tomorrow ...

We're off to Dallas .... mom is going with me, although we are not staying at the same place. She has a "girls weekend" with three friends from High School and they meet each August. It just happened that they are having it in Dallas this weekend and they are going to the Women of Faith conference on Friday & Saturday.

Pray for clear direction, peace with whatever I learn tomorrow and that perhaps this plastic surgeon will have seen what I have happening w/some previous patient. My Dallas dr. says he is great & that I will like him, and am safe to go w/whomever I am most comfortable. I got the CD from the hospital (from appt. last Friday) w/my current x-rays, so we won't have to do those again.

It has been a very busy week at JA this week, so I am looking forward to a little break. I have a 12:30am appt. tomorrow .... he is meeting me between two five hour surgery cases.

Thanks for your faithfulness in praying!
je

Slow week ....

Not a lot new happening this week, other than I am getting increasingly frustrated by w/all the medical scheduling stuff. Everything happens at a MUCH slower pace than it should. I have an MRI scheduled for late afternoon on 8/25 in STL (it has to be done at the big Barnes downtown, so scheduling w/them is a big process). Then I'd need to do another follow-up appt. w/that surgeon and then get something surgery wise scheduled, if he decides it is necessary .... we are looking at a time frame of September.

Pray that the Friday consultation/appt. goes well w/the Dallas plastic surgeon. The appt. is at 12:30pm & I've been very impressed with his office staff. If I like him and decide to have it done in Dallas, there is a small chance that I might be able to stay and have it done on Monday (8/24). Pray for clear direction, safe travel, & that I'll be able to tell which surgeon is the best for my situation. I may need to make a quick decision, which can sometimes be tough.

Unfortunately I will not have Internet access Thursday through Sunday ... sorry.

My patience on all of this is definitely wearing thin, so pray for a positive attitude going into a long weekend. There is more drainage this week at the incision site, so the bandaging and re-bandaging is getting old.

Hugs -
je

Plastic surgeon appt. report .....

My appt. w/the plastic surgeon this morning went well. He was extremely thorough and wanted all the details on my flap surgery in San Antonio. I spent over two hours with him going through everything. There is some hardware that is very close under the skin to the area that is open, so that was the first possibility for cause to the problem.

We took new x-rays and he carefully looked over old MRI pics that I brought with me. There were a few things on both the x-rays and MRI that he questioned and noticed were not “right.” We looked at the pictures together and he explained 5-6 things that he was somewhat concerned about. He wants to make sure there is no deep bone infection, so this afternoon he received a former MRI report from the radiologist & he was going to see if he could learn anything further. He will call me early next week and will likely order a new MRI. Closing the incision is the easy part, but he doesn’t want any surprises during surgery as to a hidden infection or something …. this would be unlikely, but sometimes they take a long time to surface.

If there is no infection, it is an easy & straightforward skin closure surgery (likely less than 1 ½ hrs). If it gets complicated with something else, hardware issues, or a bone issue, everything quickly becomes much more involved. So, we will likely talk on Mon.-Tues. and see what he thinks.

At any rate, I really liked him & was super comfortable with him … he was personable, professional & would be good to work with. His West Co. office is in the same building as my hip surgeon at Barnes West hospital. His nurse gave me her direct phone number, which is always good. He normally does big cases like chest closure, open heart closure & lots with breast cancer reconstruction, so my situation is very tiny in size, but very significant with “past medical history.” I don’t think I would have gotten to see him if it had not been from a referral of someone at church – very grateful (it was a parent of a past student).

I have a crazy busy week next week. On Tues-Thurs. noon, I have a JA conference at work with 45 people (all from out-of-town) & I am responsible for evening entertaining, dinner, snacks, & making sure all are happy. We leave for Dallas late afternoon on Thursday & return Sunday night.

Thanks for your e-mail notes, calls, and prayers this week. I am okay and I am confident that God will continue to lead, direct and open doors as needed.

Headed to IL for the weekend ….. hope it is a relaxing one for you, too!

Love & hugs,
jenny

Appointments scheduled .....

I got some sleep last night, but it was hard. I kept trying to think of a way to make it work to have the surgery in San Antonio, but it is just not possible. The doctor there is actually “over qualified,” if you can imagine. He is a plastic micro surgeon and orthopedic surgeon, and I just need a top-notch plastic surgeon (not as specialized). I have to be thankful that he was available, willing and able to work with me when I needed him most a year ago for such a large operation.

Wow …. Many of you must have been praying this morning, because I did well in scheduling appointments. I will likely not need all of these appointments, but this is what I have lined up:

Friday, Aug. 14th – 9:45am – Appt. w/Dr. B (goes to my church) –(STL)
Monday, Aug. 17th – 3:30pm – Appt. w/Dr. A – in Bloomington, IL
(I am there this weekend visiting family, so I will just stay a bit longer
& my uncle went into the office and talked with them early this
morning)

Friday, Aug. 21st – 12:30pm – Dr. A (in Dallas) – referral from my Dallas surgeon …. I am supposed to be in Dallas for a few days of fun next week (Thurs-Sun).

It is better to have more scheduled than you need. It would be much easier to do the surgery here or IL, but I was very impressed with the Dallas office staff on the phone. I had two secretaries (at other STL offices) tell me that I didn’t need to see a plastic dr. & gave me the medical ring-around …. just love how they do administrative work & are able to determine medical need during a one minute phone call – blew them off & moved on.

Pray that the appt. tomorrow morning goes well & that it will be obvious which physician is the best fit for my situation and need. Hugh thanks for praying today and for the initial step of getting appointments rather quickly ….. God is good.

je

Good News & Not-So-Good News ....

The verdict is that it looks like I need to have a plastic surgeon close the open incision on the foot. The good news is that my Chicago orthopod, STL orthopod and my Dallas doctor all feel like a plastic surgeon needs to see it ASAP ... and then likely close the open wound/incision ..... everyone feels like the "allergic reaction to suture material" is probably unlikely, but we don't really know.

There is no infection or wound issue there now, but we'd like to get it closed before this happens. It is a simple surgical procedure to cut out the old area and re-stitch with external sutures only.

The bummer news today was that the surgeon in San Antonio that I've had great success with in the past & really like is moving soon from TX to PA, so it is not possible to have him do this procedure. I was really disappointed because this doctor is top notch and he already knows my history.

The process of starting over w/a new doctor is not the easiest w/my history, but I'm trying to believe that it will be okay ..... the Dallas dr. was new and he was a good fit. It is very challenging to find a plastic surgeon that does wound/incision work and does not only specialize in the "cosmetic" end of plastic surgery.

Tonight I did learn of a plastic surgeon that goes to my church, so pray that I can get into see him. Thanks Laura for calling your contact, too ... will try him tomorrow as well.

I have lots of phone calls to make early tomorrow morning to see if I can get an appointment set up quickly.

Prayer requests:
- The "right" physician will have scheduling availability w/in the next week.
- Acceptance of the situation .... really thought all of this was over.
- Wise decision making
- Need to find someone that will agree to closing it sooner than later
- No infection happens while we are trying to get details to fall into place

Just a little set-back I guess ..... it will work out ..... you'd think starting over with a new dr. would be easy by now for me, but I really dislike it. Have to keep reminding myself that this should be a very short term patient/dr. relationship ....

Long day .... we'll see what tomorrow brings.
Love & hugs,
je

Waiting on more opinions .....

I don’t have much to update yet as for progress. I’m still dealing with multiple spots on several suture lines that are open. Unfortunately, the Rx from the dermatologist dr. last week was not helpful and there is more open now than there was last week.

I am suspecting that the area is going to need to be closed surgically. Past experience tells me that once an area is open, it is nearly impossible for it to close “naturally” in my case.

I have an e-mail into my plastic surgeon in San Antonio and the orthopod in Dallas …. and I scheduled a tentative appt. w/my STL ortho guy for Wednesday afternoon. I’m back into the thick of scheduling appointments, juggling work stuff, and trying to make decisions in the midst of a not-so-common situation. All of this is somewhat a shock, because I thought & had hoped all of this was behind us.

Pray for appt. scheduling details to fall into place & that I can get some dr. to move on this in a timely manner. I don’t want to end up with an infection or wound issue, which is possible the longer it is open.

Love,
je

Chicago Report & Skin issues continue .....

Our Chicago weekend was fun, had great weather and we got to go places that we’d never been before because I could walk. I was thrilled to NOT be parking in handicapped parking. My appt. w/Dr. P on Monday was probably one of the best ever! She has two young boys and they love the Cardinals and Mr. Pujols, so we chatted about that. She spent a lot of time with us …. went to her next patient (quick one) & then came back to our room to finish with us. We had not seen her since February, so there was a lot to cover. She was very impressed w/the improvement, watched me walk, and the overall opinion was what I have now is about as “good as it will get” for movement and functionality.

She encouraged me to try to wear a heel shoe more because in my case that position forces my toes downward, which is the position we want to encourage/keep. She understood that it may not “feel” great at the beginning, but slowly keep trying them & try more on weekends for several hours at a time. She saw my STL & Dallas doctors at a big foot conference (in Canada) in July …. they all discussed the “Eickhorst case.”
There should be “medical royalty money” there somewhere …..

Actually, she has another patient that had to have major foot reconstruction similar to my situation, but because of my success w/the tendon lengthening in Dallas she is going to do it on this other patient. She asked a lot of questions about what we did differently in March & post-op procedures.

My open incision was horrible on Monday and she got to see it on one of the worst days! (I was somewhat glad, because it is very deceiving at times). The 3” area was all open, bleeding, draining, etc. … it was a mess to say the least. She was shocked that it was “her incision” & it was 2+ years old! She wanted me to go see the plastic surgeon in Chicago that I’d seen in the past, so she called his office & arranged for me to go there after I left her office.

On our way out of town we went to Evanston to see Dr. H …. I had really mixed feelings because it had been over a year since I had seen him & my last appt. w/him did not go well ….. this is why I ended up going to San Antonio for the flap/artery transfer, as he wouldn’t do it! Thankfully, he didn’t ask who did the flap surgery, but I bet he wondered.

Dr. H thought that it was an internal suture allergic reaction causing the skin breakdown & said to follow up w/a dermatologist in STL. Great …….. I’ve heard that diagnosis before.

This afternoon I went to the dermatologist in STL & she agreed w/Dr. H. Supposedly even though the incision that is the worst is from 2+ yrs. ago, the body still produces symptoms of an allergic reaction …. & the skin on the top of the foot is so thin that if I itch it, if it rubs on a shoe or anything the area repeatedly comes open and it is a continual cycle.

The dermo. dr. said that it is really tough to clear up (possibly 6-12 months) & sometimes you ultimately have to do a skin graft over the area that won’t close. She wrote a script for a topical steroid (Ultravate) & oral steroid to see if it helps any … if it doesn’t start to work in a week, she said that the next step is some nerve injections to try & get the nerves to stop producing the reaction symptoms. I have to wrap the foot in Saran wrap and wear it that way all each night for the next week – wish me luck on sleeping. Supposedly this skin scenario happens w/multiple surgeries & thin skin – I qualify with flying colors for both.

Typically the skin breakdown area starts small and gets bigger with time & what doesn’t start out as a “wound issue” can end up looking like one ….. we’re done with wound care & surgery, so hopefully the medication will help – no open skin is all I’m going for. This is my year for dating & fun shoes!

BIG PRAYER REQUEST: Pray that the oral steroid medication and cream works, because I don’t want this to linger on or have to get involved with returning to San Antonio. (I’ve been using the cream & have not had success.)

In my case this is somewhat serious because the bigger the open area gets, the harder it will be to get it to permanently close. I don’t know if I have enough skin there or not, as it is now – HOPEFULLY I DO!

Better get to bed ….. sorry for the long post, but I would greatly appreciate stepping up the prayers for the week ahead. I am shocked at how the picture below looked last week, as now the top of my foot is so irritated, raw & open now you wouldn't know that it is the same foot - stuff changes quicker than I'd like at times. I have to return to the dermo dr. next Tuesday for a follow-up appt. & to see if we are on the right track w/treatment or if we need to go to the next plan .... if the Rx is going to work, she said I should see big improvement within a week.

Keep the faith!
je