Today I need to start doing some minor things so I can be ready for surgery. I spoke to the nurse at Dr. F's office and I need to stop taking some of my medications. I have to completely stop taking Vitamin C (I take 1500 mg a day because there's been some initial research about the positive effects of Vitamin C on CMT patients), my birth control pills (YIKES!), and pain relievers.
All of these contribute to thinning your blood so I need to stop them immediately so that won't be a problem as we get closer.
Next up...my pre-op testing and lidocaine injection on March 8!
Tuesday, February 23, 2010
Friday, February 5, 2010
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.
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.
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About Me
- Michele
- CT, United States
- I'm a girl with hopes and dreams who has Charcot-Marie-Tooth (I know! You've never heard of it!). In this blog, I talk about my journey with this invisible disease and 2 reconstructive foot surgeries (and a 3rd minor surgery) I've gone through in the last 18 months. And I try to do it all with a positive attitude and a smile on my face :)