My Journey Through Surgery

I met Tim like most other CMT'ers I've met - through the amazing world of the internet. Tim's story is actually very similar to mine, we're the same age, both have CMT Type 1A and he is getting ready to have his reconstructive foot surgery this week. He asked me to write an entry for his blog, which you can see below or by clicking here.

You can also check out his blog here: CMT creates: music. Good luck with your surgery Tim!!
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A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.

I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.

I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.

Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.

Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.

Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.

I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!

New Pics of My Footsie

So today I completed the blood work that my pain management doc requested. In total, 22 vials of blood. My little veins need some time to recover. LOL. And the final thing will be my 6-hour peeing session on Monday. Can't wait to hear the results from all these tests.

In the meantime, here are some new pics of my footsie, all healed but still swollen. I'm still taking it very easy because it's still hurting if I walk too much.

Two new feet

Two old feet

Surgery...Almost!

Well, sometimes not everything goes as planned.

I was thankfully very calm as the surgery got closer. The only time I got somewhat nervous and I think it really hit me is when I spoke to the hospital and got my surgery time. I needed to be admitted by 9:30am and the operation was scheduled for 11am. Oh boy! It was really gonna happen. But that was the only moment of nervousness.

I even woke up the next day (March 17) not sure why my alarm went off so early...LMAOOO. We got up, I made sure to put away all my bottles of water and my lotions in preparation and to avoid the temptation. I took my cat shower (yuck...you shower with anti-bacterial soap and then they give you these wet cloths to "dry" yourself with but they make your body sticky so I felt like I just licked myself like a cat! LOL). My mom, John and I were so calm it felt like it was going to happen to somebody else. I think all the prayers and positive energy from family and friends helped sooo very much!

We got to the hospital early and started the process. I put on my surgical outfit and just waited to see Dr. F as promised because he knew I was in a lot of pain and he wanted to see me before we went in to try to figure it out. While we waited, we people watched.

Dr. F finally stopped by to see me and he was accompanied by Dr. G (surgeon who is retiring me and kinda "dumped" me)!!!!! I was so happy to see him there. He came to watch my surgery like he said he would. I thought that was really nice. Well, Dr. F was really really concerned about this new pain, he was worried that the pain would get much worse after surgery and then he would just feel guilty for putting me in that situation. He preferred calling it off since it's an elective procedure and doing it any other time, but trying to figure out what it is right now. He said the first step would be to take an MRI to see if it would be a spine problem, then to see the neurologist, Dr. K (I had already met him 5 years ago when I was first getting diagnosed).

I can't say that I was not disappointed. I was actually really disappointed because I am sooo ready to start this process and it was also a little frustrating because I was just at the hospital on Monday and we could have done all of that then. But I was glad to see he was being cautious and worried about my condition so I had to be happy about that.

Soo then starts our tour through the hospital lol....we saw so many people and went to so many floors. First, I had to get discharged, then we went to the MRI where I was told there would be a really long wait..as long as we were already there, I didn't want to leave and have to drive back into the city. Thankfully I didn't have to wait long because the lady in front of me gave up after 5 minutes because she panicked. I had never done an MRI before so I had no expectations, I was okay because I thought I could just go to sleep and it was supposed to be 45 minutes. Little did I know, they ask you NOT to sleep while you're in there because sometimes your body twitches involuntarily in your sleep and the technician told me I had to be in there for an hour and a half!!!!!! Holy kakamoley!!!!! The machine I was in was sooo tight that I started having a panic attack, it felt like I was being buried alive, I tried closing my eyes and taking deeper breaths and it wasn't working. So I decided to pray...pray to every guardian angel and saint I could think of...just ask for them to calm me down so I could go through with the test. And since I so strongly believe in the power of prayer, what do you know??? Not even 2 minutes later, I could feel myself calming down. At one point, my body jerked a little because I was falling asleep and I started praying all over again for them to calm me down but not that much! LOL that I still needed to stay awake so I started singing songs in my head. The most uncomfortable thing is that my right leg and foot started going numb which is very painful for me. My foot felt like a rock and started to twitch a bit, which was out of my control (I didn't take my meds that day because of the surgery). Thankfully I MADE IT! The whole hour and a half!!! I was actually really proud of myself...

Then we headed to the neurologist's office. Again they were fitting me in as an emergency so we waited a bit and then he came in. He was sooo good!!! He knew exactly what to do and what do you know??? All this pain I'm feeling IS a result of the injection I did last week. Not because of the steroids but because the nerve where they applied the injection is irritated. He touched the place on my hip and I immediately felt the exact same pain on my thigh. He's confident this is not a lasting problem and I should be okay within the week. He didn't give me any medicine to take but told me to put the lidocaine patch on it and it should get better. He thinks we should hold off on the surgery for about a week and I should be better by then. Thank GOD! Our last stop was to do a blood test to check to make sure the Vitamin B level in my blood is within a good limit otherwise it could impact how I feel in a negative way.

Today I called my surgeon's office and he's out of town at a conference and will be back on Monday. I guess I'll know more then. The pain is teensy tiny bit better today, it's been a little easier to walk and to stand up. John and I went and sat on Boulevard East because it was such a beautiful day and I just wanted to feel some sun on my skin.

Sometimes life has other plans for us and we have to roll with the punches. I've never been great with a change of plans but I've been so relaxed that I really feel okay about this one. I know it will happen when the time is right.

My Left Foot - BEFORE Pics

I can't wait to see my "AFTER" pictures :)

Finally....SURGERY!

I was waiting for a date to finally write this entry...March 17. But so much happened while I waited that now I have lots more to write about.

When I was diagnosed with CMT in 2005, I was immediately referred to Dr. G, a doctor with the Hospital for Joint Diseases. At the time, I didn't like him because he had a one-track mind: SURGERY! Back then, I was certainly not ready. I wasn't even expecting to hear I had a genetic neurological condition, let alone talk about getting surgery! So I pushed the thought to the back of my mind. Over the last couple of years, my pain has certainly increased exponentially and more and more I had to think of that option that I pushed to the back of my mind.

Things in life happen for a reason because I was definitely not thinking surgery in 2009. But it's when I moved to Stamford, CT with John and commuted to/from work in NJ a couple times a week and my pain definitely hit a peak. So over the summer, I started to think that I definitely wouldn't be able to commute for too much longer and I started looking at jobs in CT. This also happens to be one of the worst economic times our country is going through so it was slim pickings and even then, hard to get a call back or interviews.

Sooo brilliant mind that I am, I started thinking that if I was going to be either unemployed or settling for a job that I would be bored with, I might as well consider the thing I've been avoiding all these years! There are many reasons to avoid this surgery, which is why I have done it for so long: it's going to take a huge chunk of time to recover so I obviously couldn't do it while employed, painful, scary, very complicated procedure, what if it's worse after??

I started doing some research on doctors and called Dr. G again, not because I loved the guy but because I knew he was good. I also scheduled a few other appointments with different doctors. My first appointment was with a doctor who will remain nameless in NJ, who just does not have the experience with CMT or this type of procedure. When we met with him, he told me that it would be an extremely complicated surgery and he wasn't sure if I wasn't beyond repair. OMG I went home and cried that night and the next day...thinking that I waited all these years and maybe I waited too long and lost my opportunity. I've always thought of this as a last resort and now what would I do?

Thankfully my appointment with Dr. G was after this and he was extremely confident about the procedure. He has dealt with TONS of CMT patients before and done several surgeries similar to this one. Not only was I sure he was the man for the job, but I actually liked him now. I guess now he and I were both on the same page. He gave me the name of one his patients who I could contact and talk to about her experience (Thanks Tecile for this tip!). At this meeting sometime in November 2009, we took new x-rays which showed the progression of the problem. There's a new problem with my right ankle I wasn't even aware about. Dr. G. warned me that there are so many things that need to get fixed that he wouldn't be able to fix it all at once with one surgery because it would be too stressful on my foot and that I may need to go back in a couple of years from now to finish it. To sum it up, the problems are: extremely high arches, hammer toes, foot drop, foot turning inwards, problem with right ankle and other issues with nerves and muscles that are medical terms I can't remember LOL. Seriously I am keeping track of plenty!

So I scheduled a follow up with Dr. G for January 12 after he got back from his vacation for a final consultation and set up the surgery date and I also planned to meet with his patient that morning. It was great to meet with her and see how "cute" her foot is now...sorry, but when you live with ugly feet your whole life, it's kind of exciting to get new cute ones (and it's also better to focus on this stuff than on the stuff I'll talk about in a second). It was extremely helpful to meet with her to know what to expect pre/post-op and to hear about her recovery. I definitely found out some things that I definitely wasn't expecting...
- How I won't be able to shower or go to the bathroom while I'm in the hospital and possibly my first week at home. YUCK! I already feel bad for my mom who will be taking care of me...
- How hairy my leg will be when we take the cast off
- How painful the recovery process will be
- The length of time in recovery which is not set in stone for any patient
- Great! I really should've written this in January because now it's almost a month later and I can't remember all the things she told me...oh well...I'm sure it'll come back to me at some point.

After meeting with her, I headed downtown to meet with Dr. G. Since he was just recently back from vacation, he said he couldn't give me a date yet and would get back to me the following week. He also gave me some interesting pointers. He said I should not pity myself and that I need to actively work in my recovery. That the more of a fighter I am and the more I push myself (as advised by my physical therapists), the quicker my recovery can be. This was great to hear because 1. I don't pity myself, even though I'm sure I'll have my moments and 2. I had not even thought of being "active" in my recovery and how important that will be for me. The one thing he said that stayed with me (how could it not?) is that this will be really painful, to the point that I will probably come to regret having the surgery. Thanks!!! At least I am going in ready for the worst!

Unfortunately, when he called me the following week, it was to tell me he has made a very important decision in his career...that he will be retiring from surgery. That he will continue to work but will definitely be scaling down his responsibilities. That he will be happy to stand in the surgery room with whomever I choose, but he will not be the main surgeon. That if I was only having 1, he would be more than happy to make an exception but since I would be having 2 surgeries now and possibly more in the future, he thought I would be better off with someone who would follow my case from beginning to end....which I agree. I was just really disappointed that he waited so long to tell me. I had already finished all my research and chosen him and I had just been at his office the week before and he "forgot" to mention this very important fact. But he said he felt really bad and he would make some calls to doctors he trusted and discuss my case.

I obviously worried and stressed but thankfully we were leaving on a vacation to Mexico in 3 days so I decided I would just deal with it once I got back and put it off my mind. We had an amazing time on our vacation but I definitely had some reminders of why I'm so ready to have this done. Like how difficult it was to get out of the beach because there were so many sea shells in the sand that I needed help, or how I have to walk to the edge of the pool in my flip flops and immediately put them on once I get out because I can't stand on the ground, or even how hard it was to just stand in the pool floor, or how exhausted I was from dancing two nights in a row that I had to stay in the room and rest for a few hours before enjoying the day...many little things that people take for granted. But I will be so grateful when these things are no longer obstacles to overcome. Sometimes we have to go through situations to make us appreciate them. Maybe I wouldn't have valued these things had I been given them naturally, maybe I needed an extra push to realize one of the most amazing things that we can have in our lives: health.

So we get back to the US and Dr. G. recommended a new surgeon who also works for the Hospital for Joint Diseases. I call to make an appointment and he's in Haiti helping out with their relief efforts (I already like this guy!). John and I drove into the city on February 4 to meet with Dr. F. (who I should mention is good looking =) John says he looks like Nicolas Cage but I definitely think he looks cuter! LOL. Immediately we can tell he knows what he's talking about, that he's just as confident about doing this surgery, that he can really help me with my feet. Also, he's the Chief of Surgery for one of the departments at the hospital. Not bad!

His main concern is the pain I have on my thighs that I can't get rid of. He's not sure, as no doctor has been sure up to now, that the surgery will improve that pain at all. He thinks it's related to my hips so we do x-rays and everything looks normal. Doofus me! I completely forgot to tell him I broke my hips when I was 5. I didn't just forget to tell him, I forgot it happened! LOL..my mom reminded me as soon as I left the appointment and I had to send him an email. His suggestion is to try a lidocaine injection directly into my hips (sounds painful and I'm not sure of all the details here) to see if that will work. He also thinks I could try Aleve to see if it helps (which I never tried for that reason) but I won't be able to do that as we get closer to surgery because it thins your blood too much and that could be a risk during the surgery.

He will keep trying to help me find something that helps with this pain that refuses to go away because this is not common in the patients he usually sees.

He stresses some of the same facts I've already heard but he said something different that I liked. He thinks that depending on my recovery, we can try going in 6 weeks after the first surgery to do more surgery on the same foot to finish working on all the problems. I think this is so much better than doing it a couple years from now when I'll be back to a regular life. Since I am kind of stopping my life specifically for this surgery, let's get it all out of the way now. I really like the new doc, his staff, and I'm happy that he's younger and hopefully I'll be able to have him follow my progress for years to come.

Sooooo...March 17...St. Patrick's Day! 6 weeks. So much to do until then, we're moving to Shelton this week so I want to make sure we are settled, babies' birthday parties, my birthday...

I know John and my parents are ready to help me in this new chapter of my life. Although we all know it will be a difficult one, I think it will come with great rewards. I am thankful for all the support I have gotten, the phone calls, emails, text messages. For my mom, who will be the best nurse anybody can ever ask for. I thank you in advance because I know this will be just as hard on you, if not harder, to see me like that. For my dad, who may have to carry me around. For John, who gives me so much calm and strength. For my sisters, I wish you could be here!

I have to say that I can't wait to look back on this time...when I am walking around hardwood floors barefoot and wearing cute shoes and not tripping all the time (I am clumsy so we'll have to see about that).

So in preparation for the big day, I'm going to skip all the negative and painful things I could be thinking about and I'm going to focus on the good things I'm looking forward to doing.

This is my journey...

The reason I decided to write about this is because I have a terrible memory so I thought I should get a diary, I would like to look back on this a year or two from now and remember where I was. But I think I would be too lazy to write it down so typing is easier. Well, since I'm gonna type it then I would like to share it with my sisters, parents, and boyfriend...so why not just do this? I'm very comfortable talking about this stuff and for me, talking helps. It's definitely therapeutic. So here it is...

I feel that I have been a very fortunate and happy person. Fortunate to have amazing parents who raised my sisters and I in a happy home. Blessed to have a great belief system and faith in God. So happy to have found someone who loves and supports me.

We had a great childhood, lots of time playing on the streets with friends, going to the beach, being at grandma’s house with all the crazy laughter and loudness, even hanging out at the farm here and there...building a solid foundation that would prepare us for the obstacles later in life.

We moved to the US in 1996, in the middle of my teen years. I’ve always been the good, responsible, A+ student so I applied myself and learned the language quickly and grew to love this country to be my home. I continued to push myself in college and got myself a job in Manhattan where I would gain great work experience.

I’d say things started to change a bit in college, can’t say exactly when but I started to feel a lot of pain on the bottom of my feet and calluses started to form under the balls of both my right and left feet. At first, I would soak my feet and cut the calluses off with scissors but the calluses always grew back. My technique wasn’t the best and there were times when I’d cut deeper than necessary and end up hurting myself more. Eventually, I came to find a doctor who I truly appreciate and visit regularly to this day, Dr. A, who uses a blade to shave the calluses off (I feel absolutely no pain while he is doing it). He has been extremely important in helping me throughout this process…as you will see.

My commute to NY was pretty grueling and in college, I would go into the city, walk uphill to the bus (sometimes stand in it through traffic into the city), walk to the train (sometimes stand in the train til my stop), and finally walk to the office. Then I would do it all back home, get in my car, sit in traffic and drive to campus to take night classes. In a way, I’m glad things were just starting then because I would never be able to do that today.

I went through a pretty stressful situation in college and this is when CMT came into my life. It was there all along because it’s genetic but until then, it hadn’t really come out. My feet started to get worse and I started to visit Dr. A. a lot more to deal with my calluses. Shoes became more impossible to find and even worse, wear! It was hard in the summer, because my feet couldn’t hold flip flops. It was hard at work because I couldn’t find decent looking shoes for the life of me. And in the winter, it was hard to find boots that my high arches could fit into.

At this point, my pain had escalated to feeling it with every step that I took, 24 hours a day (obviously not when I was asleep), 7 days a week. One day, on a regular visit with Dr. A. I noticed that he was touching my toes and I couldn’t feel that he was touching me. So he poked my toes with a needle and we realized that I had lost some sensitivity. This is the first time I heard of Charcot-Marie-Tooth (CMT), which is a neurological disorder. This is when my search for answers begun. I felt all this pain but no doctor could ever give me a clear direction. At least now I had a clue of what to look for. I saw so many doctors, podiatrists, neurologists, geneticists, etc in my search for a diagnosis.

After seeing many doctors, I stumbled upon a geneticist and his team at the Hospital for Joint Diseases who ran some more specific (and at times, painful) tests, including a blood test that would officially diagnose me as a CMT Type 1A patient. It was a relief to know...to be able to give it a name...to read about all the symptons...to read similar stories. At the same time, the diagnosis is that CMT is a progressive and degenerative condition with no cure or specific treatment or medication, so it would continue to get progressively worse and there was no sure way to stop or treat it.

I think this is when faith in God comes in and the belief that everything happens for a reason. I was blessed to be raised in a spiritual home where we believe in God and his love for all his creatures. We believe that we are all here to learn a lesson, to grow spiritually and to learn to love one another. CMT is here to help me grow as a person and to help me correct wrongs that I did in the past, in another life. DISCLAIMER: I'm not sure who will be reading this and you don't have to agree with what I am saying here but this is what I believe in and I know I am better person because of it so please don't rain on my parade LOL.

Because of Spiritism, I have never once questioned: WHY ME? I am ok and prepared to face whatever situations may come my way, but there are obviously times when emotions spill over and you can get a good cry out and then back to normal.

Eventually, I have started to feel a lot more pain in my thighs, a lot more cramping on my calves and my feet have gotten more deformed. Now, I can feel myself get exhausted from a simple supermarket trip or standing in line for a few minutes. I need a few days to recover from any extra activity outside my normal routine. I would not dare go to a theme park or zoo and walk around all day because I know that 1. I wouldn't be able to do it for more than a couple hours, 2. I would be in even more pain than I usually am. If I did want to go (which hasn't happened in a while), I would be willing to rent a wheelchair for the day to enjoy.

I think one of the hardest things is that I don't really think that people believe you're in as much pain as you say you are or that you're just lazy. I'm young, pretty (sometimes...lol), talkative, outgoing...how can I possibly really have what I say I have? But I don't look like I'm in pain...how do I explain that? Well...for me, I feel pain every minute of my life, so how can I live my entire life showing how much pain I'm in, how miserable would that be? You kindda get used to it and learn to deal so that it doesn't normally affect my personality that much. On days when things are worse, then it's impossible to hide it but even then, an outsider can't see!!! It's not like I have an open wound, or like so many people have heard about CMT, so you just have to believe me. Recently, I have had a few people dispute my "handicapped" parking because I couldn't possibly need the help to park closer...those were fun experiences!!!

Please don't feel sorry for me...I've had and will continue to have a very full life. I lived up my years in college, partied with friends, traveled back home and danced all night to Ivete and Banda Eva (which had its consequences later lol), etc. I've gotten older and my interests have changed. I don't enjoy the same things I used to like going club on a regular basis. Now, I'd much rather hang out at home and have game nights with our friends. I don't care if these little adjustments are due to the fact that I am maturing or CMT. I'm still happy either way. Lately, I've been working on my prayers and trying to just be grateful for this opportunity that I have to learn...learn from my mistakes and work through my own karma.

Recently, I've decided to have surgery on my feet. After trying every possible recommendation that might help the pain (i.e. physical therapy, acupuncture, pain medication, yoga, etc) and finding the effects only last for a short while, surgery is really the last resort. So now I am unemployed and just waiting for the surgery to be scheduled. I know it will be a long year ahead of me but I am ready....more on that on the next post!

CMT may have taken me, but it's not going to beat me!