Foot Surgery Correction with TSF

Since my foot surgery ten days ago, I have had a lot of time to reflect on all the events over the past year that have led up to this surgery. It definitely has not been an easy year. I've had a lot of challenges, not only physically but mentally and emotionally as well. It's been a hard year to come to terms with everything and accept God's will and plan for my life. I've experienced things I never thought I would and hope that I will never experience them again. But I have also had some pretty amazing experiences as well and I wouldn't give those up for anything.

Waiting for the framing specialist to finish his fellowship and start working at the University of Utah Hospital was definitely the right decision for me. I have so much respect and admiration for both him and my other orthopedic surgeon. They truly are the best and I know without a doubt that I was led to them because they were the ones who needed to fix my foot. They were both so kind to me in the operating room as the anesthesiologist was trying so hard to place my IV. They didn't mind the delay and were very patient. I couldn't ask for better doctors. My admiration for my original orthopedic surgeon grew that day in the operating room and my admiration for the specialist grew when I was in recovery coming out of anesthesia. He talked to me and explained what happened during surgery (although I was still pretty out of it so I didn't comprehend it all) and then suited up to help with the x-rays that would to be used to help come up with a prescription for my foot. He also came to check on me before heading home for the day and then came again the next morning, which I thought showed a lot of dedication since it was a Saturday.

Once I was complety under general anesthesia my surgeons were able to assess what my foot would do without my brain telling the muscles to contract. Just like I had suspected beforehand, my foot didn't relax. I had figured that since the Botox injections didn't work my foot wouldn't relax under general anesthesia. During the surgery some of the tendons in my leg were lengthened and my high arch was cut to lower it. Those two things alone helped relax my foot and it automatically started to straighten out. Then my foot was put into an external fixator called a Taylor Spatial Frame (TSF). My frame comes halfway up my leg and there are three pins that go into a bone in my leg that are holding it in place. I then have four wires that go through the different bones in my foot and then a pin in each of my toes. The pins in the toes are to keep them straight so they don't curl under as my foot is brought up. Attached to this big metal frame are six struts that have to be turned every day.

From the x-rays that were taken both after surgery and during my follow-up appointment a plan was made with a precise prescription just for my foot. This prescription tells us what number each strut needs to be turned to each day. By turning these six struts everyday they will straighten my foot and bring it up so it will be in the correct position. I only have about 25-30 degrees more to go before it is to the position the doctors want.

I have been lucky so far and really haven't had a lot of pain with this frame. I lost most of the feeling in my leg and foot about two years ago, most likely because of the stroke. If I had feeling I believe that I would be in more pain. I can feel the deep muscle and tendon pain though and that hasn't been very fun. My surgeon believes that I'm already starting to feel the straightening because they had to do so much stretching and straightening during surgery. He also believes that once the turning of the struts start I will be in more pain. I have to be careful with what kind of pain medicine I take since I am on a 325 mg dose of aspirin every day and we don't want my blood to get too thin. I only take over-the-counter pain medicines because I refuse to take stronger pain meds for several reasons. So far I have been able to manage with just Tylenol or nothing most days. I've only had to take a naproxen once when I just couldn't stand the pain and Tylenol wasn’t cutting it. I start turning the struts this week so I may have to adjust the pain meds so I can handle the increased pain.

This frame is HUGE and really is a pain. I bump it into everything! Getting in and out of the house and car is a pain, so I try not to leave the house if possible. I have had to make several adjustments to my life because of this frame. I've had to rely on my parents a lot more and am learning that there are many things that I just can't do by myself. It's kind of been a humbling experience for me because I've always been one who is very independent. I've always had a hard time asking for and accepting help but now it seems like I'm asking for help all the time. It's frustrating but good for me.

I'm not exactly sure when I will be out of this frame. I have my guesses but it also probably depends on how my foot responds. I still have a goal to be walking by Christmas and I really hope that it will happen.

Year Marks

April and May 2017 are year marks for me.  April marked a year since I was in the neuro critical care unit at the University of Utah hospital with a subarachnoid hemorrhage, and May marks a year since I’ve been in a wheelchair.  This past year has been one of patience, healing, acceptance, and understanding.  It’s been a long year and I’m glad it’s behind me, but I have the feeling that the next year is going to be just as hard.

Trying to understand and accept that I’ve had two strokes (either 11 months or 5 months apart, we’re not sure which) and that they have caused damage to my body has not been easy for me.  I’ve gone over everything that has happened to me in the past two years almost every night, and I still can’t believe everything that has happened.  I’m learning to accept all the side effects from the strokes and know that my life is forever changed.  I’m not going to be able to do everything I once was able to do and know that adjustments and sacrifices are going to have to be made. 

As I have mentioned in past blog posts, damage to my left foot has occurred because of the strokes.  My muscles contracted and my left foot turned in and is now deformed.  As my foot was turning in last year, too much pressure was put on the ball of my foot which ended up causing an ulcer.  That ulcer is what initially put me in a wheelchair.  It took six months of aggressive treatments to get that ulcer to heal.  Thankfully it did heal, as the doctors were not sure it would because of the poor blood flow in my left leg and foot.  It took me a couple of months to figure out and come to the conclusion that once the ulcer was healed I still would not be able to walk because of the position of my foot.  Pretty much it was like déjà vu from when I was nine years old and had the same thing going on with my right foot.  I knew that in order for me to be able to start walking again I had to have surgery on my foot.  It took some time but I finally found the right orthopedic surgeon for me and I have been very impressed with him.  I feel like because I started seeing him everything else just fell into place, and for that I am very grateful.  Heavenly Father has a plan for me and this is all part of it.

My complex medical history has made my orthopedic surgeon want to bring in another surgeon who specializes in orthopedic framing.  This surgeon is finishing his fellowship back east but will be practicing here at the U in September.  My surgeon wanted me to wait if possible for this specialist.  This specialist happened to be out here the beginning of May, so I was able to meet with him.  He asked me what my goals were and then a plan was made.  My goal of being able to walk again is doable but it’s going to be a long process.  I will potentially have between 2-3 surgeries on my foot, possibly more depending on how everything goes.  Everything also depends on how my foot reacts when I am under general anesthesia, and my brain isn’t telling my muscles to contract.  I will most likely have tendon lengthening and tendon transfers done and then my foot will be put in a frame for 2-3 months.  During that time I will have to adjust the different struts on the frame and it will move my foot back into a straight position, or as straight as they can get it.  I will also have to have a chunk of bone removed to help lower my arch.  After that I may or may not have to be in a brace (I’m hoping not).  I will then start extensive rehab and will hopefully get back to walking.  The specialist told me that when I have the frame on there is a 100% guarantee that I will get an infection at the pin sites (not a comforting thought).  He told me that I will be in a lot of pain and that I need to prepare myself mentally for it.  He told me that had my goal been to run, that wouldn’t be possible.  In order for me to be able to run I would have to have my leg amputated.  Thankfully that is not my goal, so no amputation is necessary.  My surgery will more than likely happen in September sometime, although I am hoping that this specialist will be able to come out sooner to do the surgery so I don’t have to wait so long.  Only time will tell.  I’m anxious to start walking again, but scared at the same time because I don’t know what my limitations are going to be.

This past year (especially the past several months) I have been able to see what side effects the subarachnoid hemorrhage has caused.  My short term memory has been affected and it’s been pretty frustrating.  I’ve noticed though that some days are worse than others.  I really started noticing and piecing things together several months ago when two different things happened. First, I asked my sister a question and then a minute or two later I asked the exact same question, she gave me a look and I realized what happened.  Second, I went to check something out on my phone and literally two seconds later I couldn’t remember what I was going to do.  So frustrating! This happens when I teach my youth in Sunday school but thankfully my youth are amazing and understand when I can’t remember a question they asked or something that we were just talking about.  Not only is my short term memory bad, but I have a harder time concentrating and processing things. 

I feel like the past year has been an emotional roller coaster for me.  My emotions have been all over the place.  Some days I would be just fine and other days I was a mess.  I didn’t know if I could handle everything that I was having to go through or if I’d be able to handle everything that was going to come in the future.  I was upset with everything that had happened and didn’t know if I could keep going on.  There were many times where I let fear take over my life instead of faith.  When life got to be too much, I would just cry and start pouring my heart out to my Heavenly Father.  Those times when I have felt the lowest are the times when I have really felt my Heavenly Father lifting my burden off my shoulders.   Mosiah 24:14, in the Book of Mormon says, “And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.”  I have a strong testimony of this scripture!  I know with all my heart that Heavenly Father has lifted my burdens and made them easier to bear. I am so grateful for the gospel of Jesus Christ and the knowledge that I have.  I wouldn’t have been able to make it through everything that I’ve been through without it.  

Surgery #20

Back in August 2016, I started to realize that once the sores on my foot were healed I wouldn’t be able to walk because the stroke had turned my left foot inward.  Coming to this conclusion wasn’t easy, I had been denied the ability to walk for months and I desperately wanted to walk once the sores were healed.  So I started the process of finding an orthopedic surgeon who could fix my foot so I would be able to walk sooner than later.  I found an orthopedic surgeon who I liked but after two visits with him, he recommended that I see an orthopedic surgeon at the U because they were more skilled in treating someone who has had complications from a stroke. 

I called to make an appointment with the surgeon that was recommended but he was booked up until December.  I didn’t want to wait that long so I asked if the chief surgeon (who had also been recommended) had any openings sooner.  It turned out that he had had a cancelation, so I scheduled my appointment with him for a couple of weeks later. 

I met with my new orthopedic surgeon the second week in October and he presented a plan that made more sense than what the previous surgeon had said.  The plan was to frame my foot (put it in a halo) for six weeks and slowly bring it up to the right position, and then he would lengthen my Achilles tendon and do some other tendon transfers to keep my foot in place.  The goal is that this procedure will allow me to get up and walk again, but I may have to be in a brace the rest of my life and will possibly not be able to walk without the help of a crutch.  I’m determined though to do whatever it takes so I can walk on my own without a crutch to help me.   During my visit with this surgeon my dad and I explained my complicated medical history and as a result he wanted me to try a Botox injection first and see a vascular surgeon. 

I met with a vascular surgeon who examined me and then set up some different tests that would determine what percentage of blood flow my leg and foot had.  She didn’t seem to be concerned and figured the blood flow in my left leg and foot would be about 70%, which would be good enough to do foot surgery and heal from it.  I had the test a week later and got the results the same day.  Unfortunately I only had about 50% blood flow in my left leg and foot which isn’t good because there’s no guarantee that I would heal from any kind of foot surgery.  The CT scan that was ordered showed that my left superficial femoral artery is blocked.  My vascular surgeon was quite surprised by the results because my right leg which has 70% blood flow looks worse compared to my left leg.

 

I also met with a physical medicine and rehabilitation doctor who gave me an aggressive Botox injection to see if it would help the muscles in my leg and foot loosen up.  He wasn’t positive that it was going to work but I had to at least give it a month to see.  At the end of the first month I went back in to see the PM&R doctor who confirmed what I already knew.  The Botox injection had not worked.  The doctor believed my only option now was foot surgery.

After talking with my orthopedic surgeon, he informed me that he won’t do any kind of foot surgery until the blood flow in my leg and foot is improved.  If the foot surgery were done without an increase in blood flow there is a good chance that my foot wouldn’t heal from the surgery and I could end up losing my foot entirely.  After talking and meeting with the vascular surgeon it was recommended that I have my left superficial femoral artery bypassed in order to increase blood flow. 

I was scheduled to have my artery bypassed on December 27, 2016.  The morning of my surgery I went in and as I was waiting to be taken back to the O.R., the anesthesiologist came in and told me that he did not feel comfortable putting me under anesthesia because I have severe aortic stenosis (narrowing of my aortic valve).  Being put under anesthesia for a long time when you have severe aortic stenosis is dangerous.  There is always the chance that I could have had a stroke, heart attack, or worse while on the operating table.   Another echo was performed and then all the doctors involved talked with my vascular surgeon.  After they looked at the notes and talked with my cardiologist it was determined that it would be best to try and coordinate having my aortic valve replaced through the TAVR (trans catheter aortic valve replacement) procedure and do the femoral artery bypass at the same time.  So the surgery was canceled and I went home. 

I wasn’t very happy about having the surgery canceled, but after talking with my dad, he helped me realize that it was a blessing.  I am grateful for the doctors who didn’t say “let’s just do the surgery” but instead determined what was going to be best for me. 

On January 9, 2017, I met with the TAVR team down at the University of Utah Hospital.  The team consisted of two thoracic surgeons, and an interventional cardiologist.  The first surgeon that I met didn’t impress me.  He hadn’t read my case and didn’t know why I was there.  After we told him why I was there, he presented his plan.  He talked about putting the new valve inside my old valve (called a valve in valve).  But since the valve I had was small it would make the valve even narrower.  He wasn’t sure how it was going to work.  I wasn’t very confident in him and wasn’t sure if a TAVR was the right thing for me.  I met with the second heart surgeon, Dr. G, next and he impressed me from the beginning.  He had read over my case and knew exactly why I was there and had a plan.  His plan made so much more sense than the plan the other surgeon had suggested.  It was still considered a valve in valve but the new valve would sit higher up in my aorta.  I next met with the interventional cardiologist, who I also really liked.  He was very familiar with my case and had been in contact with my cardiologist over at Primary Children’s Hospital.  His plan was the same as the Dr. G’s.   They planned on coordinating with my vascular surgeon and also bringing another doctor over from Primary Children’s Hospital.

I went home from meeting with the TAVR team not sure how to feel.  I couldn’t believe that it was time for me to have my aortic valve replaced for the second time.  It had only been 5 ½ years since I had it replaced the first time.  When I had it replaced back in 2011, my heart surgeon told my parents that my new valve should last between 7-10 years if I was lucky.  But it could also last shorter or longer than 7-10 years.  We were all hoping it would last closer to 10 years, but the odds weren’t exactly in my favor because I was young and a girl which meant the valve could calcify quicker.  After I had it replaced in 2011, I was pretty confident that I would get married and have at least one child before I had to have it replaced.  I was wrong though, I didn’t get married and don’t know when or if it will ever happen.  I knew that since it had to be replaced again I had to make sure I was doing the right procedure at the right hospital. 

I learned the first time around that it’s very important to find the right hospital and the right surgeon to do my heart surgery.  I started researching the procedure, the doctors, and the different hospitals that have done TAVR’s before like crazy.  My dad did his research and we would talk about what we found.  I emailed my doctors with lots of questions and I’m sure that after the third email they were sick of me.  I knew that I had to do my homework before Heavenly Father would give me an answer.  After three weeks of researching and talking with my dad constantly, I decided that the TAVR procedure was the way for me to go.  When I came up with this answer I took it to Heavenly Father who confirmed that this was the way to go.  The next step was to figure out where to have it done.  I had my aortic valve replaced back in 2011 at the Cleveland Clinic.  I knew that they were the #1 heart center in the country and that they would do a good job, but my circumstances were different this time around and I wasn’t sure if I really needed to go back to the Cleveland Clinic.  If I wasn’t considered high risk for open heart surgery and needed to have open heart surgery, I would have gone back to them in a heartbeat.  After doing more research and talking with my parents I felt like the University of Utah would be okay.  I also took this to the Lord and the answer I got was that it didn’t matter where I had the procedure done at.  With that answer I went ahead and set up a date that I could have my combined surgery. 

My surgery date was scheduled for February 22, 2017, and honestly it couldn’t get here fast enough.  From the time I met with the TAVR team up until the day of my surgery I started to get more symptomatic from my severe aortic stenosis.  It’s crazy how fast things can change.  I went from having energy to being very tired very quickly.  I would wake up exhausted, be tired all day, and go to bed exhausted.  Doing the littlest things wore me out!  Severe aortic stenosis is not something to take lightly, especially when you become symptomatic. 

The day of my surgery arrived and surprisingly I was a second case which meant that I didn’t have to be to the hospital until 10am.  Once I got checked in I was taken back to get prepped for surgery.  The TAVR team and my vascular surgeon came in to talk to me about the surgery, and I was very happy to hear that Dr. G would be the heart surgeon putting my new valve in.  I met with the anesthesiologist, who I really liked (this doesn’t happen very often).  He gave me medicine to make me feel loopy and calm, then he took me back to the O.R.  Once in the O. R. he put in my first arterial line (which is not a pleasant thing to have put in).  Once the arterial line was in I was put to sleep and didn’t wake up until I was in the cardiac ICU five hours later. 

The surgery went great!  Since I was having a combined surgery I had all the doctors from the TAVR team, my vascular surgeon, and another interventional cardiologist who came over from Primary Children’s Hospital who dealt with congenital heart defects in children and adults.  I had a HUGE team, for which I am grateful.  My vascular surgeon started the surgery by exposing my femoral artery and then the TAVR team took over and ran a catheter up my artery and then the new valve.  The TAVR procedure normally takes anywhere from 1 ½-2 hours, but they were able to place my new valve in an hour.  I was definitely watched over during this procedure.  I know that the surgeons had help from the other side of the veil.  Everything worked out perfectly.  They were able to place the new valve the first time, and my old valve helped secure the new valve.  I have no regurgitation (leakiness) which is a huge blessing! Plus the pressures in my aortic valve went from 40+ (severe) to 14 (really good)! We learned after the surgery that my valve was placed without the help of an echo probe.  My chest cavity is small so not everything would fit at the same time.  After my new valve was in, the vascular team took over and were able to use one of my own veins to bypass the portion of my blocked femoral artery.  My vascular surgeon talked about bypassing two different areas but only ended up having to bypass one area.  Another huge blessing!

Waking up from surgery wasn’t as bad as it would have been had I had open heart surgery.  When I wake up from open heart surgery I normally have a breathing tube down my throat and an extremely sore chest.  I LOVED not waking up to either of these things!  I wasn’t in a lot of pain either and only took Tylenol to take the edge off.  My throat was so sore though, it was pretty swollen because of everything that had to be put down it.  I also wasn’t able to chew on ice chips or drink anything because I had to have a swallow test done first and that wouldn’t happen until the morning.    

Getting any kind of rest in the ICU is pretty much a joke.  There were so many people coming to check on me constantly.  My nurse came in every hour to check the pulse in my foot (which was so strong) and give me different medicines.  He even came in at 3 in the morning to give me a heparin shot! Then someone from the lab came in to get blood three times during the night, and even housekeeping came in.  I think I only got about three hours of decent sleep that night.  On top of everyone coming in to check on me, my mind wouldn’t turn off.  Normally I don’t have problems with this after surgery but since I wasn’t on any strong painkillers that make me tired, I was wide awake. 

During that night in the ICU I couldn’t help but feel so lucky and so blessed.  I could feel my Heavenly Father’s love for me and it was so strong.  I knew that He had answered my prayers and the prayers of everyone who had been praying for me.  I knew that He knew my fears and that He made sure everything went exactly how it was supposed to during surgery.   I knew He had heard the pleadings of my heart to have my great grandparents and my uncle be with me throughout my surgery.  I know they were there because I felt them.  The love and assurance that I am His daughter was very strong that night.

I ended up being in the ICU for less than 24 hours before I was moved up to the cardiovascular unit.  While waiting for a room to open up I did my swallow test and was finally allowed to start drinking and eating.  I was also able to get out of bed and sit in a chair.  I had my arterial line and my central line taken out, which felt so good.  Once I was transferred up to my new room I was able to get out of bed more and start a little cardio rehab.  All of my doctors were happy to see that I was doing so well and they didn’t see any reason why I couldn’t be discharged the next day.  I had to fight off physical therapy, who tried to get me up and walking.  It didn’t matter how many times we told them that I can’t put any pressure on my foot, they were determined to get me up and walking.  They even got to the point where they said they would put my foot in a brace so that I could start walking.  We had to inform them that my orthopedic surgeon said that if I put any kind of pressure on my foot, I will crush my bones because of the way my foot is deformed.  We finally got them to back off and I didn’t have to deal with them anymore. 

Before I was able to be discharged I had to have another test done (called an ABI) on my leg and foot to get a new baseline for where my pressures were now.  In November the test showed that I had 50% blood flow in my left leg and foot.  Now I have 100% blood flow!  I love having great blood flow in my leg and foot.  It’s been amazing to see the progress the scars from the sores on my foot have made in just a week.  Before the surgery they were still pretty red and had some scabs on them.  Now the scabs are gone and they look great.  I was discharged from the hospital about 48 hours after I was admitted.  It was a very fast hospital stay considering everything that was done.

I have been doing great at home.  My leg is still pretty sore because the incision is close to a foot long and I’m pretty bruised and swollen.  Ice has been my best friend and really helps.  I haven’t had to take a lot of pain medicine which is good, but when I have it has mainly been Tylenol.  I feel great and can’t believe that I had a major procedure/surgery done last week.  I am able to go out and about like nothing ever happened.  The next step for me is to have foot surgery, but I’m not sure when that will happen because there are still some major factors that will play into it.