I know it’s been awhile since I’ve blogged last, but I am going to try to get back in the swing of things. I let my blog get away from me with the winter holidays among us and then making a few trips to spend time with my family. It wasn’t until I received an email from someone asking to join my blog today that I realized I really need to get back on my horse.
A lot has happened since I’ve last blogged. The date 10-10-10 was a special day for me as that was the day that I was officially pain free. I began to decrease my medication there after and before November I was completely pain free and medication free. I was able to make it through the Thanksgiving holiday with no pain and surrounded by wonderful people. Around the Christmas holiday I started to feel a little pain but just chalked it up to the cold winter air. Just before the New Year my pain was back just as strong as before. The good thing is that it wasn’t occurring as often, but the bad thing is that I can’t quite figure out what triggers the pain.
In the months that followed, I have continued to experience pain. At first the pain was only occurring once a week, but by now it happens at least once a day. I am trying to manage without medication right now but if the pain continues then I will have to do something.
Overall 2011 is a little challenging in terms of the pain department but there are a few highlights. I was able to spend time with my family for about two weeks and I became an aunt to a beautiful, healthy nephew! That was a great way to start the New Year.
I’m trying to remain positive. Right now the pain is only happening a few times a day, several times each week, but it is no where near as bad as it was prior to my Glycerol Rhizotomy in September. My motto for the year is “A taste of Heaven in 2011.”
How are all of you doing with your pain? Have you had any procedures to help alleviate the pain? I want to hear from you. Please let me know how you are doing.
Friday, April 22, 2011
Saturday, October 9, 2010
In Gifted Hands
On September 13, 2010 I embarked on a journey in hopes that it would change my life. My husband and I loaded the car and began our journey to Baltimore, MD for the second time in just one month. Unlike last time, this would be more than a doctor’s appointment.
We met with Dr. Ben Carson at Johns Hopkins Hospital on September 14th and went over the necessary paperwork in preparation for my glycerol rhizotomy that was scheduled two days later. I was a little nervous after we left the doctor’s office. I didn’t know if it was because of all the tests that needed to be run preceding the appointment or because I was nervous of the outcome of the procedure scheduled for the 16th. Either way I knew I was really nervous.
Prior to having the surgical procedure, Dr. Carson scheduled me to have pre-operative work that included a medical exam, lab work, an EKG, and a cranial x-ray. After going up and down and all around the floors and buildings that make up the Johns Hopkins Medical Campus I knew that I was now more nervous then I was a few hours before. My husband and I left the hospital and returned to the apartment we rented for that week. We decided to take things easy and managed to relax a little bit.
The following day I chose to sleep in and sent my husband out to play a round of golf. I typically would prefer to join him on the links but out of fear of a loud sound or a sudden breeze I opted to stay behind. While he was golfing I managed to direct my parents around the busy streets of Baltimore as the arrived at “our apartment” to be there with me for my surgery. I managed to make the day before surgery as busy as possible and became a tourist for a day. I enjoyed spending time with my family as we walked the streets, cooked a home cooked meal and sat around talking to each other.
My alarm clock went off at 5am and I shot up out of bed. I am not usually a morning person but I knew that today wasn’t just a usual day. I knew that today would be a day I would remember for the rest of my life. It would be a day where I learn that my trigeminal neuralgia could either be put to rest for a few years or if this was something I will have to suffer through for awhile.
It felt like it took forever to arrive at the hospital, which was only a mile from “our apartment”, but once we did the pace quickly intensified. I checked in and was immediately taken back to pre-op where I was connected to an IV and the last tests were ran. My family was able to give a quick kiss and we said our ‘I love yous’ and then I was off. When I arrived in the operating room I noticed the clock reading 8:55 and I couldn’t help but think, “Oh crap! I was supposed to begin at 8:45am. I sure hope Dr. Carson isn’t upset that things ran a little slower then expected in pre-op.”
The next thing I remember is awaking to a nurse asking me what my level of pain was and me responding, “Eight.” She told me that it was better then the last time she asked me so I asked her where I was before. The nurse paused for a moment, looked at me and smiled, “I asked you about 30 minutes ago and you said ‘100!’” That alone made us both let out a laugh. Once I was awake all I could do was ask for my family to come back and visit. They were able to come back and give a quick hug and then they were taking back to the waiting room until I was more awake.
Shortly after that I was told that I was stable and able to be discharged so my husband was called back to hear my discharge instructions. After being told what to the Dr. Carson’s physician’s assistant, Ms. Carol James, came to do a neurological test to see if we could see any immediate changes from the glycerol rhizotomy. One test that was performed was when she would snap her fingers right next to my ear. It would cause so much pain that I cringed each time she had to perform this test. With my husband by my side Ms. James snapped her fingers. It was one of the loudest snaps I thought I’d ever heard and I cringed more then ever. I then paused for a moment, looked at my husband and then to Ms. James. I then asked her to snap her fingers again. That time I didn’t cringe at all as I knew that I didn’t feel pain when the test was performed. All I could to was think, “Wow! I can finally have my life back.”
Our celebration was short lived as a chaos erupted among the recovery room. The staff members were quickly running around and shutting the curtains of all the patients’ “rooms” All of a sudden, things began to get quiet. For this being a large hospital with many patients recovering from surgery I knew something was wrong. About five minutes after that my husband and I were informed that there had been a shooting in the hospital where a doctor was seriously injured and the gunman was still in a room. We were also told that the whole hospital was on lockdown and that no one is permitted to leave the rooms that there were in. although this was a serious situation that the hospital had to deal with, all of the nurses and staff in the recovery room kept treating the patients as though nothing was going on. Around 12:30pm a gut shot was heard and everyone’s hearts skipped a beat. Again, the recovery room went silent. Once the noise was heard and the staff realized it was directly above us and that those they are directly treating were safe, they began to take care of their patients again. After two and a half hours of a hospital lockdown we were notified that the hospital was safe to reopen. The damage was already done. The gunman seriously wounded a Johns Hopkins doctor, took the life of his elderly mother and then turned the gun on himself.
When the nurse wheeled me outdoors to wait for my car I was in fear that I would be in pain. There were many news helicopters flying above and sirens of many first responders could be heard. No pain. I then got in the car and we began to drive away from the hospital. I put my window down, hung my head out and smiled. No pain. I went back to the apartment and ordered some real lunch. No pain.
About five hours after surgery I was very pleased at the outcome. I already could bear the sound of loud noises, wind in my face and solid food again. I couldn’t have been happier. Four days after surgery I was beginning to decrease my medication and felt like I was starting to get my life back
Unfortunately my happiness was short lived. After being pain free for 12 days I noticed that I was starting to get little “zaps” again. Immediately I feared the trigeminal neuralgia was back and called my doctor. The trigeminal nerve is where herpes zoster (shingles) lay dormant and because of the work done to my trigeminal nerve during the glycerol rhizotomy the spots decided to make an appearance. I am on my second dose of an anti-viral medication and hope that the pain I am currently feeling is associated with that. I am still hopeful that I will continue to mend and soon I will be pain free again.
Although I am still in pain it is much less than it was before my surgery. I am extremely blessed for the gifted hands of Dr. Carson, the hugs of his wonderful physician’s assistant Carol James, the kind nurses at Johns Hopkins Hospital, and the quick action of all law enforcement that helped to limit the damage in the hospital that day. My trip to Baltimore was definitely a trip that I will remember for the rest of my life.
We met with Dr. Ben Carson at Johns Hopkins Hospital on September 14th and went over the necessary paperwork in preparation for my glycerol rhizotomy that was scheduled two days later. I was a little nervous after we left the doctor’s office. I didn’t know if it was because of all the tests that needed to be run preceding the appointment or because I was nervous of the outcome of the procedure scheduled for the 16th. Either way I knew I was really nervous.
Prior to having the surgical procedure, Dr. Carson scheduled me to have pre-operative work that included a medical exam, lab work, an EKG, and a cranial x-ray. After going up and down and all around the floors and buildings that make up the Johns Hopkins Medical Campus I knew that I was now more nervous then I was a few hours before. My husband and I left the hospital and returned to the apartment we rented for that week. We decided to take things easy and managed to relax a little bit.
The following day I chose to sleep in and sent my husband out to play a round of golf. I typically would prefer to join him on the links but out of fear of a loud sound or a sudden breeze I opted to stay behind. While he was golfing I managed to direct my parents around the busy streets of Baltimore as the arrived at “our apartment” to be there with me for my surgery. I managed to make the day before surgery as busy as possible and became a tourist for a day. I enjoyed spending time with my family as we walked the streets, cooked a home cooked meal and sat around talking to each other.
My alarm clock went off at 5am and I shot up out of bed. I am not usually a morning person but I knew that today wasn’t just a usual day. I knew that today would be a day I would remember for the rest of my life. It would be a day where I learn that my trigeminal neuralgia could either be put to rest for a few years or if this was something I will have to suffer through for awhile.
It felt like it took forever to arrive at the hospital, which was only a mile from “our apartment”, but once we did the pace quickly intensified. I checked in and was immediately taken back to pre-op where I was connected to an IV and the last tests were ran. My family was able to give a quick kiss and we said our ‘I love yous’ and then I was off. When I arrived in the operating room I noticed the clock reading 8:55 and I couldn’t help but think, “Oh crap! I was supposed to begin at 8:45am. I sure hope Dr. Carson isn’t upset that things ran a little slower then expected in pre-op.”
The next thing I remember is awaking to a nurse asking me what my level of pain was and me responding, “Eight.” She told me that it was better then the last time she asked me so I asked her where I was before. The nurse paused for a moment, looked at me and smiled, “I asked you about 30 minutes ago and you said ‘100!’” That alone made us both let out a laugh. Once I was awake all I could do was ask for my family to come back and visit. They were able to come back and give a quick hug and then they were taking back to the waiting room until I was more awake.
Shortly after that I was told that I was stable and able to be discharged so my husband was called back to hear my discharge instructions. After being told what to the Dr. Carson’s physician’s assistant, Ms. Carol James, came to do a neurological test to see if we could see any immediate changes from the glycerol rhizotomy. One test that was performed was when she would snap her fingers right next to my ear. It would cause so much pain that I cringed each time she had to perform this test. With my husband by my side Ms. James snapped her fingers. It was one of the loudest snaps I thought I’d ever heard and I cringed more then ever. I then paused for a moment, looked at my husband and then to Ms. James. I then asked her to snap her fingers again. That time I didn’t cringe at all as I knew that I didn’t feel pain when the test was performed. All I could to was think, “Wow! I can finally have my life back.”
Our celebration was short lived as a chaos erupted among the recovery room. The staff members were quickly running around and shutting the curtains of all the patients’ “rooms” All of a sudden, things began to get quiet. For this being a large hospital with many patients recovering from surgery I knew something was wrong. About five minutes after that my husband and I were informed that there had been a shooting in the hospital where a doctor was seriously injured and the gunman was still in a room. We were also told that the whole hospital was on lockdown and that no one is permitted to leave the rooms that there were in. although this was a serious situation that the hospital had to deal with, all of the nurses and staff in the recovery room kept treating the patients as though nothing was going on. Around 12:30pm a gut shot was heard and everyone’s hearts skipped a beat. Again, the recovery room went silent. Once the noise was heard and the staff realized it was directly above us and that those they are directly treating were safe, they began to take care of their patients again. After two and a half hours of a hospital lockdown we were notified that the hospital was safe to reopen. The damage was already done. The gunman seriously wounded a Johns Hopkins doctor, took the life of his elderly mother and then turned the gun on himself.
When the nurse wheeled me outdoors to wait for my car I was in fear that I would be in pain. There were many news helicopters flying above and sirens of many first responders could be heard. No pain. I then got in the car and we began to drive away from the hospital. I put my window down, hung my head out and smiled. No pain. I went back to the apartment and ordered some real lunch. No pain.
About five hours after surgery I was very pleased at the outcome. I already could bear the sound of loud noises, wind in my face and solid food again. I couldn’t have been happier. Four days after surgery I was beginning to decrease my medication and felt like I was starting to get my life back
Unfortunately my happiness was short lived. After being pain free for 12 days I noticed that I was starting to get little “zaps” again. Immediately I feared the trigeminal neuralgia was back and called my doctor. The trigeminal nerve is where herpes zoster (shingles) lay dormant and because of the work done to my trigeminal nerve during the glycerol rhizotomy the spots decided to make an appearance. I am on my second dose of an anti-viral medication and hope that the pain I am currently feeling is associated with that. I am still hopeful that I will continue to mend and soon I will be pain free again.
Although I am still in pain it is much less than it was before my surgery. I am extremely blessed for the gifted hands of Dr. Carson, the hugs of his wonderful physician’s assistant Carol James, the kind nurses at Johns Hopkins Hospital, and the quick action of all law enforcement that helped to limit the damage in the hospital that day. My trip to Baltimore was definitely a trip that I will remember for the rest of my life.
Sunday, August 22, 2010
One Step Closer to Me
After spending yet another day in horrific pain I made a phone call to my neurosurgeon at Johns Hopkins on August 18, 2010 (Baltimore, MD, USA) and asked how soon I can have the Glycerol Rhizotomy. My doctor’s physician assistant promptly returned my phone call and stated that there is availability on September 16th to which I exclaimed, “Sign me up!” I received a phone call the next day explaining that I would have to meet with the doctor before I could have the surgery and I was given the date and time of that appointment. I thought that once I was given a date and time for my surgery that I was “good to go” but I didn’t quite anticipate the other steps that were needed. I was given a time for my pre-operative appointment with the anesthesiologist and appointment with the radiologist for full head x-ray. This was all coming together very nicely and I thought I was just ready to go but then my husband reminded me that I needed a hotel. I was overwhelmed with the idea of going through the 12 page list of hotels that Johns Hopkins gave me and was quite thankful when my mother offered to call. She went through the whole list of hotels and asked each one of them their daily rates, the price for parking, if they had a shuttle to/from the hotel and hospital and made a list of them all. After finding the most suitable hotel for what we needed it for, close enough to the hospital for convenience yet quiet enough for recovery, we booked it.
Surgery date – check
Doctor appointment – check
Pre-operative appointment with anesthesiologist – check
X-ray appointment – check
Hotel reservation - check
Transportation – check
It seems like I have everything in line for my first surgical procedure to attempt to relieve me of trigeminal neuralgia pain. I feel, for the first time in eight months, that I can relax and not worry about my next course of action. I just need to make it through my pain attacks for the next 25 days. Sounds easy, right? Over the next 25 days I have a lot planned. I will be finishing out another month’s end at work, which is extremely busy for us, I will be traveling 430 miles by car (thanks to my youngest brother for flying down to drive me those 430 miles), attending my best friend’s wedding (my twin brother’s wedding), traveling those 430 miles again to return home (this time my husband will be with me to drive me home), make it through another busy work week, and then travel 5 hours to Baltimore for my appointments and surgery. That makes me tired just typing all of that information but I cannot wait for that week in September. This is what I have been waiting for. I have been longing for the day for a medical procedure to help rid me of the pain, which allows me to come off of the medications that make me feel like I have the brain capacity of a two year old. This is just one step closer for me to be ME again.
Surgery date – check
Doctor appointment – check
Pre-operative appointment with anesthesiologist – check
X-ray appointment – check
Hotel reservation - check
Transportation – check
It seems like I have everything in line for my first surgical procedure to attempt to relieve me of trigeminal neuralgia pain. I feel, for the first time in eight months, that I can relax and not worry about my next course of action. I just need to make it through my pain attacks for the next 25 days. Sounds easy, right? Over the next 25 days I have a lot planned. I will be finishing out another month’s end at work, which is extremely busy for us, I will be traveling 430 miles by car (thanks to my youngest brother for flying down to drive me those 430 miles), attending my best friend’s wedding (my twin brother’s wedding), traveling those 430 miles again to return home (this time my husband will be with me to drive me home), make it through another busy work week, and then travel 5 hours to Baltimore for my appointments and surgery. That makes me tired just typing all of that information but I cannot wait for that week in September. This is what I have been waiting for. I have been longing for the day for a medical procedure to help rid me of the pain, which allows me to come off of the medications that make me feel like I have the brain capacity of a two year old. This is just one step closer for me to be ME again.
Sunday, August 15, 2010
Invisible
Editor's note:
An entry from our first Guest Blogger.
You can request to become a guest blogger as well by emailing your blog entry to mytnpain@gmail.com for approval. Be sure to include your name (or let me know if you want to use a nickmane or remain anonymous) and city/state/country.
**************************************************************************************************
It's there, but no one can see it. We appear perfectly normal, and yet we are not.
The only evidence of this pain is our response to it. Is it the way we stop talking mid sentence while invisible ice picks jab us in the face, taking our breath away? Is it our heads turning downwards or covering up to escape the cool wind; refreshing for others, but torture for those of us with TN? Is it our absence at work, family gatherings or other social outings? Or is it this new version of ourselves - the one who looks fine but fakes health and happiness to get through an event, in order to avoid discussions about something that is difficult for even us to understand? Or maybe we dismiss concerns or questions with a wave of the hand and a “I have a headache” or whatever generic phrase we have found useful. We all have them, those simple, meaningless explanations. Who of us launches into the full details of trigeminal neuralgia? Few people have ever even heard of it, let alone know how to say it, explain it or certainly understand it. So what do you do, what do you say, to get through those moments? How do you explain such a complicated condition? Maybe we can learn from each other as we have been doing on forums, journals and now blogs all along. Maybe discovering key words, or the perfect phrase just might be the ticket to making life a little less difficult for someone.
One thing I have learned is this: “We are trying to live in a normal world with an
abnormal condition.” These genius words are not mine, but they have changed me. (thank you Jady) Like a lightbulb going off, they have helped me begin to accept things. How can my life possibly go on as it was before when I am not as I was before? If it was a broken limb or another visible ailment, we would not hesitate to modify our lives to make things work better or expect support from friends, family or coworkers. We would not have to ask for empathy or to explain. People would just accept our condition and make whatever adjustments were necessary. Perhaps if we want others to understand and accept the limitations TN creates, then we need to be willing to do the same ourselves. They can't understand us if we don't give them the tools to at least try. Maybe we all need to take the time to come up with a simple explanation for casual acquaintances to make life easier. Close friends and family probably don't need one. They'll ask questions and learn with us as we go through this journey. Hopefully they will share that with others so we don't have to.
Of course we owe no one an explanation. We don't have to say a word. We can continue to cover our heads, avoid parties and loud events, refrain from foods and beverages that are bothersome and other triggers that make our life more difficult and bring us pain. Telling someone won't make us better. But, it might make life easier,
cause others to stop and think, to at least be aware of the things that make our life more challenging, to clear the path for us so to speak, to be our support team. We don't owe anyone anything, but we do owe ourselves - to do what's best for us. And for those who support us. Wouldn't you do the same for someone else?
Please share how you “explain” this invisible condition to people, how you find ways to get support and understanding in the normalcy of life that continues to whirl around you.
-Submitted by Painterchic from North Carolina, USA
An entry from our first Guest Blogger.
You can request to become a guest blogger as well by emailing your blog entry to mytnpain@gmail.com for approval. Be sure to include your name (or let me know if you want to use a nickmane or remain anonymous) and city/state/country.
**************************************************************************************************
It's there, but no one can see it. We appear perfectly normal, and yet we are not.
The only evidence of this pain is our response to it. Is it the way we stop talking mid sentence while invisible ice picks jab us in the face, taking our breath away? Is it our heads turning downwards or covering up to escape the cool wind; refreshing for others, but torture for those of us with TN? Is it our absence at work, family gatherings or other social outings? Or is it this new version of ourselves - the one who looks fine but fakes health and happiness to get through an event, in order to avoid discussions about something that is difficult for even us to understand? Or maybe we dismiss concerns or questions with a wave of the hand and a “I have a headache” or whatever generic phrase we have found useful. We all have them, those simple, meaningless explanations. Who of us launches into the full details of trigeminal neuralgia? Few people have ever even heard of it, let alone know how to say it, explain it or certainly understand it. So what do you do, what do you say, to get through those moments? How do you explain such a complicated condition? Maybe we can learn from each other as we have been doing on forums, journals and now blogs all along. Maybe discovering key words, or the perfect phrase just might be the ticket to making life a little less difficult for someone.
One thing I have learned is this: “We are trying to live in a normal world with an
abnormal condition.” These genius words are not mine, but they have changed me. (thank you Jady) Like a lightbulb going off, they have helped me begin to accept things. How can my life possibly go on as it was before when I am not as I was before? If it was a broken limb or another visible ailment, we would not hesitate to modify our lives to make things work better or expect support from friends, family or coworkers. We would not have to ask for empathy or to explain. People would just accept our condition and make whatever adjustments were necessary. Perhaps if we want others to understand and accept the limitations TN creates, then we need to be willing to do the same ourselves. They can't understand us if we don't give them the tools to at least try. Maybe we all need to take the time to come up with a simple explanation for casual acquaintances to make life easier. Close friends and family probably don't need one. They'll ask questions and learn with us as we go through this journey. Hopefully they will share that with others so we don't have to.
Of course we owe no one an explanation. We don't have to say a word. We can continue to cover our heads, avoid parties and loud events, refrain from foods and beverages that are bothersome and other triggers that make our life more difficult and bring us pain. Telling someone won't make us better. But, it might make life easier,
cause others to stop and think, to at least be aware of the things that make our life more challenging, to clear the path for us so to speak, to be our support team. We don't owe anyone anything, but we do owe ourselves - to do what's best for us. And for those who support us. Wouldn't you do the same for someone else?
Please share how you “explain” this invisible condition to people, how you find ways to get support and understanding in the normalcy of life that continues to whirl around you.
-Submitted by Painterchic from North Carolina, USA
Friday, August 13, 2010
A Journey for Hope
I was unable to sleep as thought after thought went through my mind. “Would he say that I have trigeminal neuralgia? Would he tell me that I have nothing at all and that I should see a psychiatrist? Would he tell me it is something in between both of those thoughts?”
When the alarm finally went off at 4:30am on August 8, 2010, I was ecstatic as my husband and I began our journey. A journey that started almost eight months ago that has left me in anguish and my husband in complete frustration. We were headed for answers to our many questions. We were headed to a possible solution to rid me of pain. We were headed off to Baltimore, MD for an appointment with one of the most famous names in neurosurgery.
Upon arriving in Baltimore we tried to make a “vacation” out of our five-hour drive by visiting the National Aquarium, touring the Inner Harbor and the historic boats that were docked there and trying to find Baltimore’s best crab cake. In between all of the tourist attractions I couldn’t help but think, “Is this going to be the appointment we have been waiting for, where we would finally hear of a treatment plan? Or, is this going to be a trip where we look back and say, ‘At least we were able to have a mini-vacation!’” I worried every minute of that trip, hoping that Tuesday (August 10, 2010) would be the day that ends my misery and can allow me to focus on what lies ahead.
When out to lunch, the day before my appointment, I couldn’t help but notice a newlywed couple sitting at the end of the bar. I offered them a warm congratulations and continued to eat my mashed potatoes with a warm glass of water, through a bendable straw of course. While they tried not to stare at me I could tell that the noticed my ear plug sticking out of my ear (who couldn’t miss it? It was bright blue!) and the water that was dripping down my face as I did my best to eat my lunch. Then, the kind woman asked me, “So, what brings you to Baltimore?” Well before I could chime in my loving husband shouted, “We wanted to visit the Inner Harbor. Plus, she has a doctor’s appointment tomorrow at Johns Hopkins.” He is always quick to come to my defense and, not knowing if she was going to say something about my ear plug or peculiar “lunch” he tried to explain the reason for our pilgrimage. The woman went back to enjoying her champagne with her new husband but I could tell she wasn’t intimidated by my husband’s response and rather curious to know more. She then went on to explain how she is an ultrasound technician at a nearby hospital and was wondering who I would be seeing in the “ENT department.” I had to then explain to her that I was experiencing some nerve damage on the left side of my face and that the ear plug was only in to try and eliminate any loud noises which trigger the pain. I then explained that I would be seeing a doctor in the neurosurgery department and, of course, she wanted to know who I would be seeing there. I explained that I would be seeing Dr. Ben Carson and before I could say anything more she gasped, “Ben Carson? Ben Carson! BEN CARSON!!!!” I confirmed that is the doctor I will be seeing and she went on to kindly “yell” at her husband for about an hour for not knowing who the great Ben Carson is.
Well, if I wasn’t nervous and anxious enough about my visit I sure was now. This woman didn’t even work at a Johns Hopkins, yet she knew of the man I was scheduled to see the following morning.
After all the exciting things we did on Monday, I was hoping I would be able to fall asleep (and stay asleep) until the alarm sounded at 6am the next day. Boy was I wrong! When the alarm finally went off I jumped into the shower and packed the car and off we were. After driving through the Inner Harbor of Baltimore we drove around and around and around and ... well, you get the picture ... around! We got lost but eventually found the amazing red bricks of Johns Hopkins Hospital and Medical Campus. Upon checking-in I anticipated waiting in the waiting room for awhile until I was called back to meet the Dr. Carson. Instead, I was given a sheet of paper with directions and told to follow them for my appointment. I didn’t think anything of the directions I was given as I assumed I just arrived at the wrong location as it was a feat just to get to the hospital. After following the directions that were something like, “Go back down the elevator to the first floor, Take a right and go up the long stairs, then the short stairs, around the corner and past the gift shop, up some more stairs and then take the elevator to the 8th floor” I finally arrived to my doctor’s office. No, I don’t mean the room where I will be greeted with a receptionist and a variety of magazines to choose from. I literally arrived in his office! I was taken into the “exam room” which was really just a conference room. I was then greeted by Dr. Carson’s WONDERFUL physician’s assistant, Ms. Carol James, and given a thorough examination and explained my history that led to me being in their office that day. She then explained that she would go look at my MRI and be back in a few minutes.
About five minutes later I looked up to see a man that looked so familiar to me. A man that I have read so much about. A man whose book was turned into a Hollywood film. A man I have been longing to meet. I thought he would be just dying to know more about me and my story but instead he looked over to my husband and began questioning him. I was confused for a few minutes and almost blurted out, “Hey, Dr. Carson, I’m the one who has trigeminal neuralgia!” but then I stopped and listened to the questions He was asking. “How is she tolerating the pain? Do you think the medication is helping her? How does she act on the medicine?” I guess they were all important questions because he turned to Ms. James and said, “I’ll do a Glycerol Rhizotomy” and he then explained the procedure, stood up and shook our hands, and off he went in his full surgical regalia with mask. Those were the two words I have been longing to hear. To me, those two words were the beginning to ending my pain.
Ms. James went on to explain what the procedure entails and how this could be my saving grace before answering our laundry list of other questions and concerns. She was the most patient, educated, gifted, and loving medical professional I had met along my journey, and probably will ever meet in my lifetime. Just before we left she gave me a big hug and said, “Welcome to the family and hang in there hun because there is hope at the end of your tunnel.” And, for the first time in almost eight months, I truly feel that I found the place I belong (Johns Hopkins) that will make me become ME again. My “vacation” had, in fact, become the wonderful journey towards hope I’d been longing for!
When the alarm finally went off at 4:30am on August 8, 2010, I was ecstatic as my husband and I began our journey. A journey that started almost eight months ago that has left me in anguish and my husband in complete frustration. We were headed for answers to our many questions. We were headed to a possible solution to rid me of pain. We were headed off to Baltimore, MD for an appointment with one of the most famous names in neurosurgery.
Upon arriving in Baltimore we tried to make a “vacation” out of our five-hour drive by visiting the National Aquarium, touring the Inner Harbor and the historic boats that were docked there and trying to find Baltimore’s best crab cake. In between all of the tourist attractions I couldn’t help but think, “Is this going to be the appointment we have been waiting for, where we would finally hear of a treatment plan? Or, is this going to be a trip where we look back and say, ‘At least we were able to have a mini-vacation!’” I worried every minute of that trip, hoping that Tuesday (August 10, 2010) would be the day that ends my misery and can allow me to focus on what lies ahead.
When out to lunch, the day before my appointment, I couldn’t help but notice a newlywed couple sitting at the end of the bar. I offered them a warm congratulations and continued to eat my mashed potatoes with a warm glass of water, through a bendable straw of course. While they tried not to stare at me I could tell that the noticed my ear plug sticking out of my ear (who couldn’t miss it? It was bright blue!) and the water that was dripping down my face as I did my best to eat my lunch. Then, the kind woman asked me, “So, what brings you to Baltimore?” Well before I could chime in my loving husband shouted, “We wanted to visit the Inner Harbor. Plus, she has a doctor’s appointment tomorrow at Johns Hopkins.” He is always quick to come to my defense and, not knowing if she was going to say something about my ear plug or peculiar “lunch” he tried to explain the reason for our pilgrimage. The woman went back to enjoying her champagne with her new husband but I could tell she wasn’t intimidated by my husband’s response and rather curious to know more. She then went on to explain how she is an ultrasound technician at a nearby hospital and was wondering who I would be seeing in the “ENT department.” I had to then explain to her that I was experiencing some nerve damage on the left side of my face and that the ear plug was only in to try and eliminate any loud noises which trigger the pain. I then explained that I would be seeing a doctor in the neurosurgery department and, of course, she wanted to know who I would be seeing there. I explained that I would be seeing Dr. Ben Carson and before I could say anything more she gasped, “Ben Carson? Ben Carson! BEN CARSON!!!!” I confirmed that is the doctor I will be seeing and she went on to kindly “yell” at her husband for about an hour for not knowing who the great Ben Carson is.
Well, if I wasn’t nervous and anxious enough about my visit I sure was now. This woman didn’t even work at a Johns Hopkins, yet she knew of the man I was scheduled to see the following morning.
After all the exciting things we did on Monday, I was hoping I would be able to fall asleep (and stay asleep) until the alarm sounded at 6am the next day. Boy was I wrong! When the alarm finally went off I jumped into the shower and packed the car and off we were. After driving through the Inner Harbor of Baltimore we drove around and around and around and ... well, you get the picture ... around! We got lost but eventually found the amazing red bricks of Johns Hopkins Hospital and Medical Campus. Upon checking-in I anticipated waiting in the waiting room for awhile until I was called back to meet the Dr. Carson. Instead, I was given a sheet of paper with directions and told to follow them for my appointment. I didn’t think anything of the directions I was given as I assumed I just arrived at the wrong location as it was a feat just to get to the hospital. After following the directions that were something like, “Go back down the elevator to the first floor, Take a right and go up the long stairs, then the short stairs, around the corner and past the gift shop, up some more stairs and then take the elevator to the 8th floor” I finally arrived to my doctor’s office. No, I don’t mean the room where I will be greeted with a receptionist and a variety of magazines to choose from. I literally arrived in his office! I was taken into the “exam room” which was really just a conference room. I was then greeted by Dr. Carson’s WONDERFUL physician’s assistant, Ms. Carol James, and given a thorough examination and explained my history that led to me being in their office that day. She then explained that she would go look at my MRI and be back in a few minutes.
About five minutes later I looked up to see a man that looked so familiar to me. A man that I have read so much about. A man whose book was turned into a Hollywood film. A man I have been longing to meet. I thought he would be just dying to know more about me and my story but instead he looked over to my husband and began questioning him. I was confused for a few minutes and almost blurted out, “Hey, Dr. Carson, I’m the one who has trigeminal neuralgia!” but then I stopped and listened to the questions He was asking. “How is she tolerating the pain? Do you think the medication is helping her? How does she act on the medicine?” I guess they were all important questions because he turned to Ms. James and said, “I’ll do a Glycerol Rhizotomy” and he then explained the procedure, stood up and shook our hands, and off he went in his full surgical regalia with mask. Those were the two words I have been longing to hear. To me, those two words were the beginning to ending my pain.
Ms. James went on to explain what the procedure entails and how this could be my saving grace before answering our laundry list of other questions and concerns. She was the most patient, educated, gifted, and loving medical professional I had met along my journey, and probably will ever meet in my lifetime. Just before we left she gave me a big hug and said, “Welcome to the family and hang in there hun because there is hope at the end of your tunnel.” And, for the first time in almost eight months, I truly feel that I found the place I belong (Johns Hopkins) that will make me become ME again. My “vacation” had, in fact, become the wonderful journey towards hope I’d been longing for!
Wednesday, August 4, 2010
Alone in this Big World
No one understands. No matter how you explain it or how others explain it no one understands. It seems like the more often people say, “I understand what you’re going through…” the more and more I get frustrated. Until you experience the pain day after day, night after night, minute after minute, please don’t tell me, “I understand.” Now I know that I shouldn’t say that NO ONE understands because other trigeminal neuralgia sufferers do understand the pain and suffering I am going through. It is my hope that the dedication to this blog will allow a place for other TN sufferers to show me that they do understand what I’m going through.
I have tried to explain to my family what I am going through. They have read up on TN to familiarize themselves with this “condition” but they still don’t understand. They will tell me daily that they understand what I am going through and each time I hear that I want to say, “Please, let me stab you in the face with an ice pick” then they can tell me that they know what the pain is like but until they are struck with it time and time again they still won’t truly understand. Feeling isolated from my family is not fun.
Co-workers. They will tell me that they are sorry I don’t feel well. My boss will tell me the same thing. But should I put a blanket over my face to block the air condition from blowing on me they are the first to laugh. I explain to them, like I have many times before, that I have a disability and it is something that helps me. Still, they laugh. To me this is them all laughing at a disabled person and it is down right ignorant. They don’t laugh at an overweight person that is eating. They don’t laugh at a soldier who lost his leg at war and walks with a prosthesis. Yet when one places a blanket over their face to prevent pain caused by air blowing, they laugh? This is probably the same person that prays for his or her family member’s health each evening before bed. Another example of loneliness.
The pain is intensified by cold/warm air blowing on my face. Loud noises also cause pain. At times I find myself hibernating in my bedroom because I can control the noise level and where the air the air is blowing or how to protect myself from my air conditioner and ceiling fan. Still feeling alone.
For those suffering from trigeminal neuralgia I am reaching out to you to let you know that you are not alone in this big world. I am here with you, suffering right along side of you. For those that had trigeminal neuralgia and have since been cured, please reach out to us currently suffering and encourage us during this difficult time. You have probably witnessed the same type of pain as we are experiencing now, and know what we are going through. If you are a family member or a friend who has a trigeminal neuralgia sufferer please reach out to that loved one and tell him or her that you may not understand (actually saying this alone could be the most supportive thing you could say) what they are going through but that you are there to support them. If you are surrounded by someone who suffers from trigeminal neuralgia ask how you can help him or her instead of making them the victim of your jokes. Help to make them realize that although they may feel alone with the pain they are being supported. Help the sufferer realize that he or she is not alone in this big world!
I have tried to explain to my family what I am going through. They have read up on TN to familiarize themselves with this “condition” but they still don’t understand. They will tell me daily that they understand what I am going through and each time I hear that I want to say, “Please, let me stab you in the face with an ice pick” then they can tell me that they know what the pain is like but until they are struck with it time and time again they still won’t truly understand. Feeling isolated from my family is not fun.
Co-workers. They will tell me that they are sorry I don’t feel well. My boss will tell me the same thing. But should I put a blanket over my face to block the air condition from blowing on me they are the first to laugh. I explain to them, like I have many times before, that I have a disability and it is something that helps me. Still, they laugh. To me this is them all laughing at a disabled person and it is down right ignorant. They don’t laugh at an overweight person that is eating. They don’t laugh at a soldier who lost his leg at war and walks with a prosthesis. Yet when one places a blanket over their face to prevent pain caused by air blowing, they laugh? This is probably the same person that prays for his or her family member’s health each evening before bed. Another example of loneliness.
The pain is intensified by cold/warm air blowing on my face. Loud noises also cause pain. At times I find myself hibernating in my bedroom because I can control the noise level and where the air the air is blowing or how to protect myself from my air conditioner and ceiling fan. Still feeling alone.
For those suffering from trigeminal neuralgia I am reaching out to you to let you know that you are not alone in this big world. I am here with you, suffering right along side of you. For those that had trigeminal neuralgia and have since been cured, please reach out to us currently suffering and encourage us during this difficult time. You have probably witnessed the same type of pain as we are experiencing now, and know what we are going through. If you are a family member or a friend who has a trigeminal neuralgia sufferer please reach out to that loved one and tell him or her that you may not understand (actually saying this alone could be the most supportive thing you could say) what they are going through but that you are there to support them. If you are surrounded by someone who suffers from trigeminal neuralgia ask how you can help him or her instead of making them the victim of your jokes. Help to make them realize that although they may feel alone with the pain they are being supported. Help the sufferer realize that he or she is not alone in this big world!
Tuesday, July 27, 2010
Welcome!
This blog has been created as a place for Trigeminal Neuralgia (TN) sufferers, family and friends, and other supporters of TN sufferers to come together and share stories and experiences. If you would like to post a blog as a guest author, I invite you all to feel free to contact me at mytnpain@gmail.com.
As a TN sufferer myself I've been up and down this TN roller coaster ride. With the support of all TN sufferers and support links we can take the ups and downs and twists and turns together and make sure we stay on the tracks.
In the near future I hope to have some subject tabs up (medicine, home remedies, doctors, links to support groups, and other resources). I am asking all of you to please comment on what you would like to see appear on this blog and I will do my best to make it happen for the benefit of everyone. It's not just my trigeminal nerve facial pain, it's yours and it's everyone else's.
I look forward to hearing from you and I'll post all that I can, whether it gets on my nerves or not - even if it's a pain in my ... face.
As a TN sufferer myself I've been up and down this TN roller coaster ride. With the support of all TN sufferers and support links we can take the ups and downs and twists and turns together and make sure we stay on the tracks.
In the near future I hope to have some subject tabs up (medicine, home remedies, doctors, links to support groups, and other resources). I am asking all of you to please comment on what you would like to see appear on this blog and I will do my best to make it happen for the benefit of everyone. It's not just my trigeminal nerve facial pain, it's yours and it's everyone else's.
I look forward to hearing from you and I'll post all that I can, whether it gets on my nerves or not - even if it's a pain in my ... face.
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