Hey Friends - I am feeling better! My Lumbar Sympathetic Nerve Block that I wrote about a month ago was a bust. I had a numb thigh for one day and that was it. I do not recommend that procedure to anyone!
What has been successful is my physical therapy. Rather then being an all out assault on my tender foot nerves, this has been a slow and gradual process. Light touch through a sock, light touch without a sock, and a little more distress as tolerated. I have had wonderful success with this and can now tolerate walking barefoot for short periods of time and sleeping barefoot (praise Jesus!).
Cymbalta is working well to keep my nerve pain in check and the anti-depressant aspects of the medicine have been a Balm in Gilead. I feel so much lighter, happier, and able to move forward despite my chronic conditions. I may need to add in Lyrica as my body gets used to these meds but for the time being things are stable.
What has happened is that my brain has been able to take the confused nerve input from my left foot and register it simply as someone or something touching that foot rather then as pain. My left foot feels as weird as ever, and it always will. It will never feel good to have someone touch that foot. But, my brain now registers these sensations simply as left foot "new normal" as opposed to left foot "pain alert". This is a tremendous blessing and an answer to prayer.
So, we are in a holding pattern. My ankle is showing signs of the tumor's return which is no surprise, but it will be several months before that is confirmed with an MRI. Thank you all for your thoughts and prayers as I have navigated these difficult months. I am finally feeling good and hopeful and I will just cross that next bridge when it comes. I am happy to enjoy my foot for these next few months as I am able.
Take care friends!
deck
Monday, February 10, 2020
Saturday, January 18, 2020
Shot in the Back
It's been a while and I need to update you all on how I'm doing. Last Friday I had my sympathetic nerve block in the lumbar region. Not fun!
First, this procedure happens at a special outpatient surgery center. Which is great if you are in a hurry but less great if you are afraid. Lots of people moving in and out of various waiting areas and operating rooms. It is early January so my day starts out by paying my full deductible up front. "I hope you take a credit card."
I am hustled into the back room where I do prep which includes nothing. I put a hospital gown on over my clothes and booties on over my shoes. Good look. The pain doctor comes to see me and draws with a marker on the side of my back we are doing. Then I wait.
"Someone is in there now so it will be 10 minutes."
I am alone and I am scared. I focus on my breath and relaxing and prayer. I ask myself what I am so afraid of. I am afraid that it will hurt and be scary. Ok, I tell myself. I can do it. Just relax.
The wheelchair brings a man back to the area next to mine, gets wiped down, and picks me up. We roll back into the operating room which is just as cold and foreboding as every other room I've been operated on in.
Everyone has big aprons and I ask why. Its because they will do x-rays and with x-rays all day they need to protect themselves.
They ask me to lay face down on the skinniest table ever and put my head into a little massage pillow. I make jokes about how much I paid for this and ask if they will be giving me a massage as well. Trying to be funny and trying to calm myself down.
I lay into this little pillow and look at nothing. Unlike the massage table there is no hole to see out of. I am so scared at this point. So very scared.
They pull up the back of my shirt and the nurse says "I'm going to pull down your pants". Great. She pulls them down half way and folds them over. It is freezing in this room and half my butt is on display. "just relax" yeah right!
Doctor comes in and tries to be friendly. First the numbing agent. "pinch and a burn" Oh GOD! I'm crying out in pain. Needle into the side of my lower back and it burns like Satan's fire. Son of a Biscuit!
OK, now pressure. The doctor begins pressing the needle closer and closer to my spine, deeper and deeper in my back. I don't know until later but he is coming in at a deep angle so he can hit the interior portion of my spine.
At this point I am in extreme pain and completely terrified. Everything I counseled myself about earlier is happening. This is literally my worst nightmare. I am face down into the pillow and trying to relax. I know my tense muscles will make it hurt more. I listen to my heart beat being projected loudly into the room and try to calm down.
Pain pain pain as the needle moves deeper and deeper. I can feel the table moving up and down as he asks for x-rays and tries to get into just the right place. I can't help but cry out "Oh God!" and "I don't like this" I can feel the pressure in the front of my body on the table, like he's hitting my ovaries or something.
Finally he starts to say, "we're getting close". The contrast dye goes in and finally, after about 10 minutes which feels like an eternity, the medicine goes into my back. And finally finally, the needle comes out.
I am so sad, and in so much pain. I look back over my shoulder and ask to see the needle. "Are you sure?" Its 12 inches long and they show me that it went in more than half way.
They ask me to climb off the table and I just want to die. I make a joke about a massage again and then say "just kidding, don't touch my back." I ask lots of questions as I get into the wheelchair. They do upwards of 25 of these a day from the sacrum to the neck. No thanks.
I'm wheeled back to the waiting area, stripped of my gown, told to take it easy and am sent home.
My Dad drove me so I look for him in the waiting area. We slowly make our way to the car and as we walk I ask if I can hold his hand. I am so scared, shaken up, and in pain. In the car I cry for awhile. Not fun.
On the whole, I would not recommend this procedure to my worst enemy. I could do it if you put me asleep. Wide awake it was literally torture. Plus, it didn't work at all! I had a numb thigh for a day and that was it. Thanks but no thanks.
It has taken a week for me to recover. Ice packs and sore back. But I have survived and am so thankful it is past now.
Other than this terrible episode on the whole I am doing well. Physical therapy has been a pleasant surprise, I will write on that next time. And we are four weeks into my anti-depressants. Which means I'm starting to feel like things will be OK. Even if I am in constant pain.
Blessings friends. And watch out for those shots in the back. Not recommended!
First, this procedure happens at a special outpatient surgery center. Which is great if you are in a hurry but less great if you are afraid. Lots of people moving in and out of various waiting areas and operating rooms. It is early January so my day starts out by paying my full deductible up front. "I hope you take a credit card."
I am hustled into the back room where I do prep which includes nothing. I put a hospital gown on over my clothes and booties on over my shoes. Good look. The pain doctor comes to see me and draws with a marker on the side of my back we are doing. Then I wait.
"Someone is in there now so it will be 10 minutes."
I am alone and I am scared. I focus on my breath and relaxing and prayer. I ask myself what I am so afraid of. I am afraid that it will hurt and be scary. Ok, I tell myself. I can do it. Just relax.
The wheelchair brings a man back to the area next to mine, gets wiped down, and picks me up. We roll back into the operating room which is just as cold and foreboding as every other room I've been operated on in.
Everyone has big aprons and I ask why. Its because they will do x-rays and with x-rays all day they need to protect themselves.
They ask me to lay face down on the skinniest table ever and put my head into a little massage pillow. I make jokes about how much I paid for this and ask if they will be giving me a massage as well. Trying to be funny and trying to calm myself down.
I lay into this little pillow and look at nothing. Unlike the massage table there is no hole to see out of. I am so scared at this point. So very scared.
They pull up the back of my shirt and the nurse says "I'm going to pull down your pants". Great. She pulls them down half way and folds them over. It is freezing in this room and half my butt is on display. "just relax" yeah right!
Doctor comes in and tries to be friendly. First the numbing agent. "pinch and a burn" Oh GOD! I'm crying out in pain. Needle into the side of my lower back and it burns like Satan's fire. Son of a Biscuit!
OK, now pressure. The doctor begins pressing the needle closer and closer to my spine, deeper and deeper in my back. I don't know until later but he is coming in at a deep angle so he can hit the interior portion of my spine.
At this point I am in extreme pain and completely terrified. Everything I counseled myself about earlier is happening. This is literally my worst nightmare. I am face down into the pillow and trying to relax. I know my tense muscles will make it hurt more. I listen to my heart beat being projected loudly into the room and try to calm down.
Pain pain pain as the needle moves deeper and deeper. I can feel the table moving up and down as he asks for x-rays and tries to get into just the right place. I can't help but cry out "Oh God!" and "I don't like this" I can feel the pressure in the front of my body on the table, like he's hitting my ovaries or something.
Finally he starts to say, "we're getting close". The contrast dye goes in and finally, after about 10 minutes which feels like an eternity, the medicine goes into my back. And finally finally, the needle comes out.
I am so sad, and in so much pain. I look back over my shoulder and ask to see the needle. "Are you sure?" Its 12 inches long and they show me that it went in more than half way.
They ask me to climb off the table and I just want to die. I make a joke about a massage again and then say "just kidding, don't touch my back." I ask lots of questions as I get into the wheelchair. They do upwards of 25 of these a day from the sacrum to the neck. No thanks.
I'm wheeled back to the waiting area, stripped of my gown, told to take it easy and am sent home.
My Dad drove me so I look for him in the waiting area. We slowly make our way to the car and as we walk I ask if I can hold his hand. I am so scared, shaken up, and in pain. In the car I cry for awhile. Not fun.
On the whole, I would not recommend this procedure to my worst enemy. I could do it if you put me asleep. Wide awake it was literally torture. Plus, it didn't work at all! I had a numb thigh for a day and that was it. Thanks but no thanks.
It has taken a week for me to recover. Ice packs and sore back. But I have survived and am so thankful it is past now.
Other than this terrible episode on the whole I am doing well. Physical therapy has been a pleasant surprise, I will write on that next time. And we are four weeks into my anti-depressants. Which means I'm starting to feel like things will be OK. Even if I am in constant pain.
Blessings friends. And watch out for those shots in the back. Not recommended!
Thursday, January 2, 2020
CRPS
As a result of repeated surgeries to my left ankle, I have unfortunately developed Complex Regional Pain Syndrome. This is a nervous system disorder and is my body's unfortunate response to the repeated trauma in my foot. This is why I am having such sensitivity and nerve pain.
The special pain doctor I am now seeing diagnosed the condition, and my tumor surgeon agrees. There is no way to know who will develop this secondary condition but it is most common in wrists and ankles. Just like with the Giant Cell Tumor I am in the unlucky minority.
I have all the classic symptoms of this condition. Extreme sensitivity and nerve pain, swelling and redness, shiny looking skin, dry skin, and a strange bruise like pattern. While my sensitivity is limited to my foot, my pain extends to my knee. For example, I can't cross my legs left over right because the pressure on my calf is too painful or I can't maintain child's pose in yoga because its too much pressure on my calf.
My left foot literally hurts all the time. My brain continues to send a signal that I have a burn or an open wound over the top of my foot and on my toes. Its not extreme pain but it is extremely distracting. Imagine the annoyance of a blister that never ever heals. My shoe is always bothering me and my sock is always bothering me but I can't go barefoot. The air literally bothers my foot. I need a sock to block out some of the sensation so I seek out soft socks without too big of a seam.
Meanwhile there is literally nothing wrong with my foot, its all in my brain and my nervous system which is really strange and hard to process. Its enough to drive a person crazy.
The primary medication for this is Gabapentin and we know that's not an option for me. My pain DR currently has me on Cymbalta which is for depression and then also helps nerve pain. It doesn't affect my sensitivity but it does alleviate the random jolts of electric pain I sometimes get. Depression is a side effect of this condition, so I guess anti-depressants are my new normal. As much as I have counseled parishioners to get on meds if needed, it has been a struggle for me to accept this as my only way forward. We may add Lyrica later, which has the same risks as Gabapentin but hopefully with a system full of Cymbalta I can do it. Who knows.
In a week or so I will go in for a sympathetic nerve block in my lumbar region. I am terrified of this as I hate back stuff but oh well, I hope it will help. Then I have three sessions of "de-sensitizing" physical therapy which will no doubt be painful. I'll write and tell you about all the ways I am being tortured.
This has been an extremely difficult New Year and I am really working on holding on to hope. That's my resolution. Keep hope alive.
I was joking with Lars about how awful this all is. The diagnosis is chronic pain and the plan is
1. we put you on meds so you don't go crazy
2. we stick needles in your back
3. we torture you repeatedly
4. surgery again
It can be hard to keep hopes up. Every time someone asks me if my foot is better I don't know what to say. People look so hopeful, and while I have recovered from surgery my foot is not better and not getting better. So, I usually resort to simply shrugging my shoulders, my foots ok. Right now I just keep going and am thankful the pain is simply an annoyance and not unbearable. I can power through my day and I can sleep most nights.
But I miss my old life . . . a lot.
The special pain doctor I am now seeing diagnosed the condition, and my tumor surgeon agrees. There is no way to know who will develop this secondary condition but it is most common in wrists and ankles. Just like with the Giant Cell Tumor I am in the unlucky minority.
I have all the classic symptoms of this condition. Extreme sensitivity and nerve pain, swelling and redness, shiny looking skin, dry skin, and a strange bruise like pattern. While my sensitivity is limited to my foot, my pain extends to my knee. For example, I can't cross my legs left over right because the pressure on my calf is too painful or I can't maintain child's pose in yoga because its too much pressure on my calf.
My left foot literally hurts all the time. My brain continues to send a signal that I have a burn or an open wound over the top of my foot and on my toes. Its not extreme pain but it is extremely distracting. Imagine the annoyance of a blister that never ever heals. My shoe is always bothering me and my sock is always bothering me but I can't go barefoot. The air literally bothers my foot. I need a sock to block out some of the sensation so I seek out soft socks without too big of a seam.
Meanwhile there is literally nothing wrong with my foot, its all in my brain and my nervous system which is really strange and hard to process. Its enough to drive a person crazy.
The primary medication for this is Gabapentin and we know that's not an option for me. My pain DR currently has me on Cymbalta which is for depression and then also helps nerve pain. It doesn't affect my sensitivity but it does alleviate the random jolts of electric pain I sometimes get. Depression is a side effect of this condition, so I guess anti-depressants are my new normal. As much as I have counseled parishioners to get on meds if needed, it has been a struggle for me to accept this as my only way forward. We may add Lyrica later, which has the same risks as Gabapentin but hopefully with a system full of Cymbalta I can do it. Who knows.
In a week or so I will go in for a sympathetic nerve block in my lumbar region. I am terrified of this as I hate back stuff but oh well, I hope it will help. Then I have three sessions of "de-sensitizing" physical therapy which will no doubt be painful. I'll write and tell you about all the ways I am being tortured.
This has been an extremely difficult New Year and I am really working on holding on to hope. That's my resolution. Keep hope alive.
I was joking with Lars about how awful this all is. The diagnosis is chronic pain and the plan is
1. we put you on meds so you don't go crazy
2. we stick needles in your back
3. we torture you repeatedly
4. surgery again
It can be hard to keep hopes up. Every time someone asks me if my foot is better I don't know what to say. People look so hopeful, and while I have recovered from surgery my foot is not better and not getting better. So, I usually resort to simply shrugging my shoulders, my foots ok. Right now I just keep going and am thankful the pain is simply an annoyance and not unbearable. I can power through my day and I can sleep most nights.
But I miss my old life . . . a lot.
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