The pictures above show the two sides and the difference in both.
Saturday, July 28, 2012
Wednesday, July 25, 2012
Bad days
Lately there are some mornings I wake up unable to see right, walk right, talk right, just function on general. The last time things like this started happening was when things started shutting down. I try not to get scared or worry but its not possible.
I have more bad days than good ones and its taking a toll on my family and I. We are all scared but no one expresses it. All are trying to stay strong for each other. The other day I woke with the whole side of my face sloped and I couldn't talk right. It wore off after a couple of hours and I could finally carry on a conversation normally. So many don't understand because I don't let anyone around me when I am like this. My kids and my husband has seen it but they just hold their fear on.
Today has been a weird head day. I haven't had a headache just head pains. They aren't constant but when they happen it takes me down. Head pains are worse than headaches as for the pain but headaches are bad on the continuous side.
I was sitting at the sinner table tonight and went to hand the corn to my husband when my arm gave out on me. It was just for a few seconds but long enough to scare me. Now its almost bedtime and I feel like I am in a daze...a robot mode. I will tell you its not a fun thing to feel. Well I am going to lay down and hopefully I will feel better in the morning.
Don't assume....Just my thoughts
Someone looked at me today and said "seriously, you look perfectly fine".
Just because I look fine doesn't mean there isn't anything wrong. You don't see me on my bad days. You don't see the pain that I feel right now but have grown accustom to on a regular basis. I choose to not let this get to me. I have seen how dark this can bring my life but I choose not to let that happen anymore. I can't waste what life I do have being scared of living. So while I am here on this earth I will stand tall and I will fight. I will live the best that I can. Normal is a conceiving look!
Just because I look fine doesn't mean there isn't anything wrong. You don't see me on my bad days. You don't see the pain that I feel right now but have grown accustom to on a regular basis. I choose to not let this get to me. I have seen how dark this can bring my life but I choose not to let that happen anymore. I can't waste what life I do have being scared of living. So while I am here on this earth I will stand tall and I will fight. I will live the best that I can. Normal is a conceiving look!
Earlier post on Facebook
I will share some of the things I wrote over the last two years so you will see where I was at and where I am now. It's amazing how someone can find the inner strength to pull up and stand up proud and strong again.
When Normal Isn't Normal Anymore....
by Kristy Coleman-Tetrault on Tuesday, February 15, 2011 at 1:41am ·
Has anyone ever got to a point in life where something either makes you or breaks you.....When all you want to do is truly live and cherish every minute you are given doing it like you never have before yet you are so scared of dying that you forget to truly live.....How do you live your life normally when your normal isn't your normal anymore? Learning to live again is not as easy as everyone thinks.
When Normal Isn't Normal Anymore....
by Kristy Coleman-Tetrault on Tuesday, February 15, 2011 at 1:41am ·
Has anyone ever got to a point in life where something either makes you or breaks you.....When all you want to do is truly live and cherish every minute you are given doing it like you never have before yet you are so scared of dying that you forget to truly live.....How do you live your life normally when your normal isn't your normal anymore? Learning to live again is not as easy as everyone thinks.
Tuesday, July 24, 2012
Tuesday, July 17, 2012
MOYAMOYA..........ALL IN THE HEAD
Moyamoya
All in the head
Hello. My name is Kristy Coleman-Tetrault. I am the daughter of Rhonda (Taylor) Webber of Chandler and Don Coleman of Stroud. My grandparents are Dorthy and Bill Taylor of Chandler and the late Susan and J.E. (Pat) Coleman of Stroud. I am writing this story not for sympathy but to spread the news of a rare disease that has affected so many but no one has heard about. In order to tell you about this disease I am going to tell you my story.
Three years ago I was pregnant with my son and I started having unusual headaches. What I mean about unusual is that these headaches felt like electrical pains that shot through only the left side of my head. My OBGYN did a CT scan without contrast because they kept getting worse. Nothing was found with this test. About a month later I started hearing noises in my left ear. At first I thought it was an oil well pumping in a distance because when it started it wasn’t constant and there are oil wells where I live. One day I was sitting on my front porch and the noise started again but this time it never stopped. It was a constant sound that would drown out all other sounds. People talking and the happenings around me were just background noise. My OBGYN said it was probably just my blood vessels swelled due to the pregnancy. Four weeks after I had my son the noise was still there. The doctor then told me that I needed to see my primary so he could refer me to an ear, nose, and throat doctor. I set up an appointment for the following day with my primary. When I went to see my doctor I told him of all the events that had happened. Due to his personal misfortune of the loss of his daughter the red flags went up. He ordered an immediate CT scan with/without contrast. What was to follow I would have never imagined or wished on my worst enemy. I received a phone call the following day, Friday November 6, 2009 at 4:55pm. It was my doctor’s office calling to tell me that I needed to start taking an aspirin a day, stay calm, and take it easy because I was susceptible to having a severe stroke at any time. The test showed that my left carotid artery had closed off. I needed to come in first thing Monday morning so we could make plans on where to go from there. I hung up the phone is total shock. I became numb. I started crying and couldn’t talk. My family sat by wondering what was going on and I couldn’t explain. By the time I collected myself enough to tell them the news all their questions couldn’t be answered because the doctor’s office was now closed. I sit through an entire weekend scared to death I was going to die.
The following Monday I went in to see my primary that was going to try and get me in to see a specialist. It took almost two weeks to find someone who would see me because no one knew who I actually needed to see, Neurologist, Neurosurgeon, Intervention Radiologist, etc. I was finally scheduled to see a doctor who performed a cerebral arterial gram. The results of this test showed that my carotid artery had closed off and I had what looked like a backup cluster of collateral veins that had opened up. These veins were now the main source of blood supply to the left side of my head but these veins were only temporary. And the noise that I was hearing in my left ear, it was one of these veins opened up behind my ear drum. Their suggestion was to go in with a stint and close off that vein so that it would stop the annoying noise. My answer to that was no. Now that I knew what that noise was I could deal with it. It was a comfort to hear it. I knew as long as I could hear that noise I had blood flow.
In January 2010 I was referred to a Neurosurgeon in Tulsa. He reviewed my test so far and then began scheduling more tests. He scheduled vision test, hearing test, MRI, and finally another cerebral arterial gram over the next two months. By February the noise in my left ear had stopped and I was really getting scared. I started losing focus, memory, vision, hearing, multitasking was becoming almost impossible, driving was becoming stressful, and I had started losing grip and/or function throughout my left arm and my left leg at times.
On March 17, 2010 I had my second cerebral arterial gram and a follow up was scheduled a week later. This is where my family and I were given the news that I had Moyamoya. Moyamoya, what is that? It is a rare disease that affects 1 in 200,000 people across the world. We were given print outs and told that we could look it up online for more information. The doctor told us that I would have to have surgery in order to have a chance to live. At this point all my collateral veins had died off and the amount of blood flow on the left side was 10%. The simple fact that I had not had a stroke was astounding. I was lucky to be alive. We were told that Moyamoya usually affects both sides of the head but it had only affected my left side. He said we would become very close because I had to be monitored closely for at least 5 years.
I went home scared to death, lost, and even more confused than I was before. I tried looking it up online. There was very little about the disease. Everything I could find online was the same thing the doctor gave me at my appointment. He had printed it off from the only websites I could find. For a month I tried looking for more information. I met a few people on Facebook who were also diagnosed with the same disease. I found more information within those few people than I did any doctor I have seen even to this day.
On April 27, 2010 I had a STA-MCA bypass done on the left side of my head. I never knew fear, courage, and the meaning of life until that day. When I woke up from surgery, I didn’t want to go back to sleep ever again. Recovery wasn’t easy. I had my mind set that I was going to be better but instead the headaches were worse, I started having more noticeable TIA’s (mini-strokes) and to top it off I got an infection in my incision. At my 6 week follow up I was told that I was good to go and could return back to my regular duties. WHAT?
No one prepared me for the after effects of surgery and what the disease itself had caused. I may not have had visible brain damage but I wasn’t right. I knew it and all my family and friends knew it. I use to love to write and I could spell with no problem what so ever. I couldn’t even remember how to spell some of the simplest words little alone write a quote. Poems and short stories were way out of the question. I couldn’t remember how to cook half the stuff I use to. I would get lost in conversations. I couldn’t remember things I did as habit all my life. Keeping up the house and the kids just wasn’t happening. I didn’t know what was going on or how to deal with it especially when the doctor would say I was fine. His PA said that I probably needed occupational therapy, speech therapy, and vision therapy but my neurosurgeon didn’t see the point in it.
From April until September I continued with no help with the headaches and TIA’s. In September I had a pretty moderate TIA with convincing signs that it was a full blown stroke. Another Cerebral arterial gram and MRI was performed in which I was told that no damage had occurred and the bypass seems to be holding. Four days later I ended up in the hospital for internal bleeding in the lower abdomen. It was a pretty moderate size hematoma. I stayed in the hospital for 2 nights and 3 days receiving blood through a pic catheter because my veins were too weak and narrow collapsing or blowing with every stick. It took me quite a while to rebound from that incident.
With my headaches, head pains, and TIA’s continuing there was no relief for any of it. I became depressed more and more so scared of dying I forgot how to live. I knew something was wrong but no one would listen. I had met a few friends on Facebook through the MOYAMOYA.COM page and on Moymoya.com itself. I decided to group all my friends together so I could easily find all my friends with Moyamoya. Well in doing that I accidently created a “group” on Facebook. I didn’t realize I had done that until the creator of Moyamoya.com and friend DJ notified me because of a picture. OOOPS……..After thinking about it I actually decided to keep the group. I was thinking at the time that it was a place that my friends and I could all privately talk openly about our disease and the way it affects each of us on every level.
Months went by when it was finally coming up on my anniversary date of my surgery. My surgeon had told me and my family at the pre-op appointment that I would have to have yearly exams to check the status of my vessels in my head. One to make sure the bypass had held up and two to make sure the right side was still healthy with no signs of Moyamoya development. I was so happy for this. Maybe I would get answers. That didn’t come though at that time. My neurosurgeon actually decided that he didn’t need to see me again unless I had a stroke. He blew me off from September 2010 through April 2011 to end with this. My family and I were furious and persistent in finding a doctor that would listen, find the facts, and do what was necessary.
I found a neurosurgeon in OKC that would take me on as a patient. The first time I seen him and he reviewed the test he said that there really wasn’t anything he could do and just enjoy the time that I have. Yeah not something I wanted to hear since I knew there were things that could be done. A friend of mine on Facebook recommended a doctor which I started seeing In June of 2011. After he studied all the scans I had done in 2010 before and after my surgery he told my husband and I that the bypass was not as successful as we were led to believe. It had only created about 30% more blood flow for me on the left side. He was hoping new blood flow had developed over the past 9 months since my last scans. The doctor’s next step was to get me scheduled for new test to see where things stood now.
Two weeks after we seen him I went in for routine test and found that I was around 14 days pregnant. OH WOW! What a surprise that was. We weighed all the options and the decision to have the baby was made. Since I was pregnant the test we were in the process of scheduling had to be put on hold due to the nuclear perfusion included with the test.
My pregnancy was great. I didn’t have any problems and I gave birth to a beautiful baby boy. We thought for sure everything was ok since it all went so well. Five weeks after our son was born scheduling commenced for testing on the status of my blood flow.
In April 2012 we had a cerebral arterial gram done. This showed that blood flow had not changed. No new vessels had formed since September 2010. In May 2012 a blood flow study was done. This showed that I was not receiving a sufficient amount of blood flow.
On June 4, 2012 I seen a Neurologist for the first time since all these problems began. In my time with him he explained everything and admitted to me that not enough is known about this disease. It is so rare it’s hard for them to learn enough. He also admitted he didn’t know enough to consider himself an expert. He said there really isn’t anything he can tell me that I haven’t learned on my own through the internet and support groups with others with Moyamoya. Toward the end of our visit he laid it to me straight.
Kristy you have went at least 3 years with 40% or less blood flow on the left side of your head. The simple fact that you haven’t had any other problems is astonishing. You living a somewhat normal life is remarkable. It’s a miracle you haven’t had a major stroke and nothing short of a miracle that you gave birth to a healthy baby without any problems. You are a miracle!
With that being said he felt like I could handle what he said next. Surgery is needed to try and establish new blood flow. If I decide not to have surgery he wanted me to know that a major stroke was inevitable. His exact words “you will either die or half of your brain will die”.
To this day the neurosurgeon that ordered the test still hasn’t called me back with a follow up appointment after the last test in May. The last visit with him he spoke of a surgery where he wanted to drill 8 new burr wholes in my skull and lay scalp arteries over my brain and hopefully in time it would create new blood flow.
With the fact that he wanted to do an experimental surgery that would cause more harm than good and he hadn’t called me back for a follow up appointment my husband and I decided that is enough playing around. We have decided to go to Stanford in California. At Stanford there is one of the top surgeons in the country. He has done well over 1000 surgeries on Moyamoya patients. Many friends and my neurologist all recommended Dr. Steinberg. Dr. Steinberg has since taken me on as a patient. We have scheduled the surgery for Nov. 20, 2012 but before we can go we have to raise money for the trip and medical cost that our insurance does not cover. We are in the process of raising money through fundraisers and charitable events.
There are many of us that have Moyamoya that do not receive the care we should. Insurance does not cover all cost and some of my friends do not have insurance to cover medical cost. In return they cannot get the help they deserve and need. Some people with this disease have had affects altering their life where they can no longer work. Social security does not recognize the disease as a disabling one because it is not one on their list yet the things in which this disease can cause is. Many have been denied due to the little known facts of this disease and how little the medical field knows. No one takes into mind the affects that brain surgery alone has neurologically. A person who has brain surgery may not have damage noticeable on an MRI but it can forever change the neurological patterns and signals inside. It did mine as it did so many others I know. I have head pains, headaches, twitches, and occasional TIA’s not counting how it has affected my everyday life and changed the way I did things. Without the professional help to learn how to deal and change my life I had to do it alone. I will tell you it’s not easy and it can break a person.
I have made many friends. The private group I have started on Facebook originally started with 23 of my friends I had made. Now “Our Family” has grown to 89. I am proud of the family I have made with my Moyamoya friends.
There are sites you can visit to learn more about this disease. Please take the time to learn and spread the word. It may change someone’s life.
http://www.moyamoya.com/
http://www.mayfieldclinic.com/PE-Moyamoya.htm
http://www.uptodate.com/contents/moyamoya-disease-prognosis-and-treatment
http://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm
http://stanfordhospital.org/clinicsmedServices/COE/neuro/moyamoyaDisease/
http://moya-moya.com/wp-content/uploads/2011/05/moya-moya.pdf
If you would like to donate to help raise money for my surgery you can visit:
Donations are being taken at BancFirst for: Kristy Coleman It’s all in the head.
http://achanceforlifewithmoyamoya.chipin.com/moyamoyabrain-surgery
http://www.gofundme.com/wivag
https://www.facebook.com/groups/472465792764716/
We are also trying to start campaigns raising awareness and assistance for families in need of help for medical funding.
Keeping up with my blog:
http://livingwithmoyamoya.blogspot.com/
All in the head
Hello. My name is Kristy Coleman-Tetrault. I am the daughter of Rhonda (Taylor) Webber of Chandler and Don Coleman of Stroud. My grandparents are Dorthy and Bill Taylor of Chandler and the late Susan and J.E. (Pat) Coleman of Stroud. I am writing this story not for sympathy but to spread the news of a rare disease that has affected so many but no one has heard about. In order to tell you about this disease I am going to tell you my story.
Three years ago I was pregnant with my son and I started having unusual headaches. What I mean about unusual is that these headaches felt like electrical pains that shot through only the left side of my head. My OBGYN did a CT scan without contrast because they kept getting worse. Nothing was found with this test. About a month later I started hearing noises in my left ear. At first I thought it was an oil well pumping in a distance because when it started it wasn’t constant and there are oil wells where I live. One day I was sitting on my front porch and the noise started again but this time it never stopped. It was a constant sound that would drown out all other sounds. People talking and the happenings around me were just background noise. My OBGYN said it was probably just my blood vessels swelled due to the pregnancy. Four weeks after I had my son the noise was still there. The doctor then told me that I needed to see my primary so he could refer me to an ear, nose, and throat doctor. I set up an appointment for the following day with my primary. When I went to see my doctor I told him of all the events that had happened. Due to his personal misfortune of the loss of his daughter the red flags went up. He ordered an immediate CT scan with/without contrast. What was to follow I would have never imagined or wished on my worst enemy. I received a phone call the following day, Friday November 6, 2009 at 4:55pm. It was my doctor’s office calling to tell me that I needed to start taking an aspirin a day, stay calm, and take it easy because I was susceptible to having a severe stroke at any time. The test showed that my left carotid artery had closed off. I needed to come in first thing Monday morning so we could make plans on where to go from there. I hung up the phone is total shock. I became numb. I started crying and couldn’t talk. My family sat by wondering what was going on and I couldn’t explain. By the time I collected myself enough to tell them the news all their questions couldn’t be answered because the doctor’s office was now closed. I sit through an entire weekend scared to death I was going to die.
The following Monday I went in to see my primary that was going to try and get me in to see a specialist. It took almost two weeks to find someone who would see me because no one knew who I actually needed to see, Neurologist, Neurosurgeon, Intervention Radiologist, etc. I was finally scheduled to see a doctor who performed a cerebral arterial gram. The results of this test showed that my carotid artery had closed off and I had what looked like a backup cluster of collateral veins that had opened up. These veins were now the main source of blood supply to the left side of my head but these veins were only temporary. And the noise that I was hearing in my left ear, it was one of these veins opened up behind my ear drum. Their suggestion was to go in with a stint and close off that vein so that it would stop the annoying noise. My answer to that was no. Now that I knew what that noise was I could deal with it. It was a comfort to hear it. I knew as long as I could hear that noise I had blood flow.
In January 2010 I was referred to a Neurosurgeon in Tulsa. He reviewed my test so far and then began scheduling more tests. He scheduled vision test, hearing test, MRI, and finally another cerebral arterial gram over the next two months. By February the noise in my left ear had stopped and I was really getting scared. I started losing focus, memory, vision, hearing, multitasking was becoming almost impossible, driving was becoming stressful, and I had started losing grip and/or function throughout my left arm and my left leg at times.
On March 17, 2010 I had my second cerebral arterial gram and a follow up was scheduled a week later. This is where my family and I were given the news that I had Moyamoya. Moyamoya, what is that? It is a rare disease that affects 1 in 200,000 people across the world. We were given print outs and told that we could look it up online for more information. The doctor told us that I would have to have surgery in order to have a chance to live. At this point all my collateral veins had died off and the amount of blood flow on the left side was 10%. The simple fact that I had not had a stroke was astounding. I was lucky to be alive. We were told that Moyamoya usually affects both sides of the head but it had only affected my left side. He said we would become very close because I had to be monitored closely for at least 5 years.
I went home scared to death, lost, and even more confused than I was before. I tried looking it up online. There was very little about the disease. Everything I could find online was the same thing the doctor gave me at my appointment. He had printed it off from the only websites I could find. For a month I tried looking for more information. I met a few people on Facebook who were also diagnosed with the same disease. I found more information within those few people than I did any doctor I have seen even to this day.
On April 27, 2010 I had a STA-MCA bypass done on the left side of my head. I never knew fear, courage, and the meaning of life until that day. When I woke up from surgery, I didn’t want to go back to sleep ever again. Recovery wasn’t easy. I had my mind set that I was going to be better but instead the headaches were worse, I started having more noticeable TIA’s (mini-strokes) and to top it off I got an infection in my incision. At my 6 week follow up I was told that I was good to go and could return back to my regular duties. WHAT?
No one prepared me for the after effects of surgery and what the disease itself had caused. I may not have had visible brain damage but I wasn’t right. I knew it and all my family and friends knew it. I use to love to write and I could spell with no problem what so ever. I couldn’t even remember how to spell some of the simplest words little alone write a quote. Poems and short stories were way out of the question. I couldn’t remember how to cook half the stuff I use to. I would get lost in conversations. I couldn’t remember things I did as habit all my life. Keeping up the house and the kids just wasn’t happening. I didn’t know what was going on or how to deal with it especially when the doctor would say I was fine. His PA said that I probably needed occupational therapy, speech therapy, and vision therapy but my neurosurgeon didn’t see the point in it.
From April until September I continued with no help with the headaches and TIA’s. In September I had a pretty moderate TIA with convincing signs that it was a full blown stroke. Another Cerebral arterial gram and MRI was performed in which I was told that no damage had occurred and the bypass seems to be holding. Four days later I ended up in the hospital for internal bleeding in the lower abdomen. It was a pretty moderate size hematoma. I stayed in the hospital for 2 nights and 3 days receiving blood through a pic catheter because my veins were too weak and narrow collapsing or blowing with every stick. It took me quite a while to rebound from that incident.
With my headaches, head pains, and TIA’s continuing there was no relief for any of it. I became depressed more and more so scared of dying I forgot how to live. I knew something was wrong but no one would listen. I had met a few friends on Facebook through the MOYAMOYA.COM page and on Moymoya.com itself. I decided to group all my friends together so I could easily find all my friends with Moyamoya. Well in doing that I accidently created a “group” on Facebook. I didn’t realize I had done that until the creator of Moyamoya.com and friend DJ notified me because of a picture. OOOPS……..After thinking about it I actually decided to keep the group. I was thinking at the time that it was a place that my friends and I could all privately talk openly about our disease and the way it affects each of us on every level.
Months went by when it was finally coming up on my anniversary date of my surgery. My surgeon had told me and my family at the pre-op appointment that I would have to have yearly exams to check the status of my vessels in my head. One to make sure the bypass had held up and two to make sure the right side was still healthy with no signs of Moyamoya development. I was so happy for this. Maybe I would get answers. That didn’t come though at that time. My neurosurgeon actually decided that he didn’t need to see me again unless I had a stroke. He blew me off from September 2010 through April 2011 to end with this. My family and I were furious and persistent in finding a doctor that would listen, find the facts, and do what was necessary.
I found a neurosurgeon in OKC that would take me on as a patient. The first time I seen him and he reviewed the test he said that there really wasn’t anything he could do and just enjoy the time that I have. Yeah not something I wanted to hear since I knew there were things that could be done. A friend of mine on Facebook recommended a doctor which I started seeing In June of 2011. After he studied all the scans I had done in 2010 before and after my surgery he told my husband and I that the bypass was not as successful as we were led to believe. It had only created about 30% more blood flow for me on the left side. He was hoping new blood flow had developed over the past 9 months since my last scans. The doctor’s next step was to get me scheduled for new test to see where things stood now.
Two weeks after we seen him I went in for routine test and found that I was around 14 days pregnant. OH WOW! What a surprise that was. We weighed all the options and the decision to have the baby was made. Since I was pregnant the test we were in the process of scheduling had to be put on hold due to the nuclear perfusion included with the test.
My pregnancy was great. I didn’t have any problems and I gave birth to a beautiful baby boy. We thought for sure everything was ok since it all went so well. Five weeks after our son was born scheduling commenced for testing on the status of my blood flow.
In April 2012 we had a cerebral arterial gram done. This showed that blood flow had not changed. No new vessels had formed since September 2010. In May 2012 a blood flow study was done. This showed that I was not receiving a sufficient amount of blood flow.
On June 4, 2012 I seen a Neurologist for the first time since all these problems began. In my time with him he explained everything and admitted to me that not enough is known about this disease. It is so rare it’s hard for them to learn enough. He also admitted he didn’t know enough to consider himself an expert. He said there really isn’t anything he can tell me that I haven’t learned on my own through the internet and support groups with others with Moyamoya. Toward the end of our visit he laid it to me straight.
Kristy you have went at least 3 years with 40% or less blood flow on the left side of your head. The simple fact that you haven’t had any other problems is astonishing. You living a somewhat normal life is remarkable. It’s a miracle you haven’t had a major stroke and nothing short of a miracle that you gave birth to a healthy baby without any problems. You are a miracle!
With that being said he felt like I could handle what he said next. Surgery is needed to try and establish new blood flow. If I decide not to have surgery he wanted me to know that a major stroke was inevitable. His exact words “you will either die or half of your brain will die”.
To this day the neurosurgeon that ordered the test still hasn’t called me back with a follow up appointment after the last test in May. The last visit with him he spoke of a surgery where he wanted to drill 8 new burr wholes in my skull and lay scalp arteries over my brain and hopefully in time it would create new blood flow.
With the fact that he wanted to do an experimental surgery that would cause more harm than good and he hadn’t called me back for a follow up appointment my husband and I decided that is enough playing around. We have decided to go to Stanford in California. At Stanford there is one of the top surgeons in the country. He has done well over 1000 surgeries on Moyamoya patients. Many friends and my neurologist all recommended Dr. Steinberg. Dr. Steinberg has since taken me on as a patient. We have scheduled the surgery for Nov. 20, 2012 but before we can go we have to raise money for the trip and medical cost that our insurance does not cover. We are in the process of raising money through fundraisers and charitable events.
There are many of us that have Moyamoya that do not receive the care we should. Insurance does not cover all cost and some of my friends do not have insurance to cover medical cost. In return they cannot get the help they deserve and need. Some people with this disease have had affects altering their life where they can no longer work. Social security does not recognize the disease as a disabling one because it is not one on their list yet the things in which this disease can cause is. Many have been denied due to the little known facts of this disease and how little the medical field knows. No one takes into mind the affects that brain surgery alone has neurologically. A person who has brain surgery may not have damage noticeable on an MRI but it can forever change the neurological patterns and signals inside. It did mine as it did so many others I know. I have head pains, headaches, twitches, and occasional TIA’s not counting how it has affected my everyday life and changed the way I did things. Without the professional help to learn how to deal and change my life I had to do it alone. I will tell you it’s not easy and it can break a person.
I have made many friends. The private group I have started on Facebook originally started with 23 of my friends I had made. Now “Our Family” has grown to 89. I am proud of the family I have made with my Moyamoya friends.
There are sites you can visit to learn more about this disease. Please take the time to learn and spread the word. It may change someone’s life.
http://www.moyamoya.com/
http://www.mayfieldclinic.com/PE-Moyamoya.htm
http://www.uptodate.com/contents/moyamoya-disease-prognosis-and-treatment
http://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm
http://stanfordhospital.org/clinicsmedServices/COE/neuro/moyamoyaDisease/
http://moya-moya.com/wp-content/uploads/2011/05/moya-moya.pdf
If you would like to donate to help raise money for my surgery you can visit:
Donations are being taken at BancFirst for: Kristy Coleman It’s all in the head.
http://achanceforlifewithmoyamoya.chipin.com/moyamoyabrain-surgery
http://www.gofundme.com/wivag
https://www.facebook.com/groups/472465792764716/
We are also trying to start campaigns raising awareness and assistance for families in need of help for medical funding.
Keeping up with my blog:
http://livingwithmoyamoya.blogspot.com/
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