Izzy's Fund
Donation protected
Below is my niece, Izzy's, story. It is hard to imagine what she has been through when you see her and she greets you with her warm and caring smile. She is strong, brave, poised, and beautiful inside and out. She so often speaks of how she wants to help others but has a hard time even thinking of asking others to help her.
She has suffered every day of the last three and a half years with chronic head pain. Please take the time and read her story. I hope it conveys to you the pure and warm spirit that she is and the strength of her convictions to meet her challenges head on and perserveer. She is truly remarkable and I am so proud to call her my niece! Together we can give her the help she needs to lead a "normal" life she so desperately deserves. This is her story....
My name is Isabella Savino and I am 16 years old and have had a headache everyday for the last three and a half years . I like to carry on with my days like I am just an ordinary teenager. But since November 2011 I have never had a moment without head pain. I am sharing my journey with you to help you understand what those three and a half years have been like.
In November 2011, I became very ill with a sinus infection, bronchitis, and other viruses for about six weeks. I was on multiple antibiotics, breathing treatments, steroids and was eventually admitted to Beaumont Hospital. Once I recovered from all of the other illnesses, I was left with a chronic status migraine, 24 hours a day, or at least that’s what the doctors thought it was for about a year. Not knowing what was causing my pain, I was sent to multiple specialists, both at University of Michigan and Beaumont hospitals. I had every type of test you could think of- MRI’s, MRA’s, MRV’s, EEG’s, heart tests, nerve blocks, and constant blood work. Along with all of that testing, I was given what seemed like hundreds of medications, to try and break my head pain. The worst part was not a single one ever worked. My headache continued to remain a "mystery" and instead of being able to find diagnosis to help me, I just got used to hearing “you’re complicated.” No one really understood why my headache was “unbreakable”.
Because of my ‘unbreakable’ headache, I had to become a homebound student for the rest of my 7th grade year. Homebound is when a student is no longer able to attend school, so you are assigned a tutor who comes to you to help you with your school assignments. The pain and fatigue took over my days. That’s when I knew I was different from most of my peers. It was so unbelievable to me and I just couldn’t understand why the doctors could not figure out what was wrong with me. My life changed right before my eyes. I couldn't play soccer, attend school, and missed out on so many “normal” middle school activities. Not willing to give up, I still completed my school assignments with chronic head pain. My dedication to my school work did not go unnoticed. I was awarded the Royal Oak Youth Assistance Rising Star Award. This award recognizes students that work hard to overcome personal or academic challenges, students who rise above life’s difficulties. I was proud to know that my hard work and personal goals of not giving into this headache were recognized by others as well. I didn't feel so alone.
It was sooo important to me to be back at school for my 8th grade year. I started to learn to deal with my pain most days and with the support of my family and friends I return to school during my 8th grade year. I continued to undergo medical, homeopathic, and alternative medical treatments, along with changes to my medications. Unfortunately, none of them gave me relief. But I still loved being back at school with my friends and feeling as ‘normal’ as possible. I was determined to never be homebound again, even if it meant going to school every single day with a headache.
A year and a half had passed. I was still a medical mystery, and I still had a headache every minute of every day. In 2013, I went to yet another neurologist, and she ordered a spinal tap (a needle placed into your spine ). This test looked for elevated pressure of my cerebral spinal fluid. Turns out, mine was indeed elevated, and pretty much everyone in the operating room was absolutely shocked. We thought we finally figured out the reason for my constant head pain. I remember my mom crying in relief because there was finally an answer. But then, the disappointment came when my headache didn’t decrease or go away after they removed a lot of the excess fluid. Instead, I ended up with a “spinal headache’ and had to go back for a blood patch. A blood patch is when they take blood from your arm and inject it into your spine. It took the spinal headache away, but I was still left with my normal headache which was still “unbreakable”. To be sure, they did the spinal tap test four more times over the course of four months, devastingly followed each time by a blood patch due to the spinal headache I would develop. These tests and treatments were extremely painful to endure. After the five total spinal taps, it became evident that the pressure in my head may have nothing to do with my headache.
That year I started high school! I was so excited to be there and be a part of it all!! I was determined to be able to stay in school, remain focused on my studies, get involved in school groups, and be with my friends as much as possible. Quickly, that excitement would come to a screeching halt and my worst fear became true. I was missing too much school due to the intense head pain I was experiencing and had to be placed on homebound again. I was devastated. I ended up missing what felt like my entire freshman year and everything that came along with it. My two very best friends kept me as normal as possible. They never left my side and are still with me today. That helped, but in the end I have goals to go to college and I was not going to give into this headache. I continued to complete school assignments and took online classes to try to keep up with all of the requirements of earning my high school diploma on time.
My mom remained adamant that we would find someone that could help me. I used to tell her, “mom, no one knows what’s wrong with me and no one can fix me” or “I will be like this forever”. She refused to believe that and found the Michigan Head and Neurological Institute (MHNI), one of the top head pain clinics in the world. After a couple of appointments there with their headache experts it was clear I had to be admitted to their hospital for more intensive medical treatment. I spent 2 weeks there and that included my 15th birthday. I had tons of IV’s and they tried so many medications to try and break my head pain.
(In MHNI with her best friends there to support her)
Even though my time at MHNI did not help my headache, while I was there I met another 15-year old girl that was just like me! Her name was Ellie. Little did I know how meeting her might later change my life. Our moms couldn’t believe how similar we were. Up until now our medical journeys had been so lonely, no one else understood our situation. I had never had anyone to talk to about this that completely got it. We had almost the exact same story- we were both ‘mysteries’, doctors could not figure out why our headaches were unbreakable and we had all of the same symptoms. We both left the hospital with no relief, but both continued on our medical journeys in hopes of finding an answer and an end to our constant headaches. I stayed with the doctors at MHNI and tried their botox treatment (32 needles put into my face, head, and neck). This resulted in the doctors telling my mom that I was one of their most complicated young girls to treat because again the botox didn't work to break my headache. This was hard to hear yet again, I had been hearing how complicated my case was for two and a half years and now the doctors that were considered some of the best in the world were telling me the same thing. It felt like we had run out of options. I wasn’t on any medications, because none of them worked, and I was faced with the reality of my situation. I would likely continue to have chronic head pain for the rest of my life.
However, on a hunch, my physical therapist guided us to a world renown eye specialist that she thought might be able to help me in some way. Even though I have 20/20 vision this doctor explained that I had vertical heterophoria and that wearing glasses with specialized prism lenses could help my headache by allowing the muscles in my eyes to rest. This in fact made enough difference in my headache to allow me to get back to school, this year, for my sophomore year. I still have a constant headache when wearing my glasses but the intensity of my headache is reduced most days. I remain focused on my studies and try to maintain what is potentially my new “normal”. Now, I try to enjoy my life with my friends and focus on my future and how to achieve the goals I have for that future.
But then came the encouragement of a message on facebook that there may still be something that can help me. Ellie had continued her medical journey going to the University of Texas Southwestern Medical Center. She had finally got relief after becoming a candidate for and receiving nerve decompression surgery! Ellie was, for the first time in over three years, pain free! I was so happy for her and I had hope again. Her mom, Deb, (my mom calls her an angel), urged my mom to have the doctor look at my case. She believed that if he could help Ellie than he could help me. I was all in! I had nothing to lose and everything to gain.
My mom sent all of my medical records to the doctor in Texas to review. She and I then spoke with him on the phone. After speaking to us about my case and my current symptoms he told us that he believed I was a candidate to come for a consultation with him! My mom and I flew to Texas, where we saw him for two separate appointments for two different treatments. The first visit is when he did nerve blocks. I already had many of these done in Michigan and they never worked. But he assured us that his procedure is very different from the ones I had done before. He knows exactly where the nerves are located that are believed to be causing my head pain. When he did the nerve blocks he placed a large needle in each of my temples and around my right eye. These blocks are only to provide relief for about 4 hours, if they work. We all weren’t sure they would work, but they did! For the first time in 3 and a half years I felt no pain in my temples and eye! My exact words to my mom were, “I can’t believe that actually worked.” This was big step towards becoming a candidate for nerve decompression surgery. Two days later, at my second appointment, he gave me Botox injections as well. Again, these were very different from the treatments I had before. The aftermath was probably the most painful experience I had. But the pain I endured would show the doctor how to understand the nerves in my head and create a surgery plan for me.
This nerve compression surgery is my best chance for relief and could change my life. I would no longer be a mystery with an unbreakable headache. After my surgery, I plan to be able to go to school and live my life like a truly normal teenage girl. To know that my headache could no longer be an obstacle for my future is absolutely amazing. I could finally see my dream of going to college and becoming a psychiatrist becoming a reality. I’ve never given into this headache and I never plan to, but the thought of having an opportunity to not have to deal with this pain every day is a godsend.
The only roadblock for me having this surgery at this point is the money needed to pay for it. Unfortunately, my insurance does not cover the surgery. After three and a half years of medical bills and insurance premiums my parents, Adam and Jami Savino, do not have the means themselves to pay this like many families who deal with chronic illness. We have exhausted all of the possibilities we can think of and that has now brought us to you. I would be forever grateful.
She has suffered every day of the last three and a half years with chronic head pain. Please take the time and read her story. I hope it conveys to you the pure and warm spirit that she is and the strength of her convictions to meet her challenges head on and perserveer. She is truly remarkable and I am so proud to call her my niece! Together we can give her the help she needs to lead a "normal" life she so desperately deserves. This is her story....
My name is Isabella Savino and I am 16 years old and have had a headache everyday for the last three and a half years . I like to carry on with my days like I am just an ordinary teenager. But since November 2011 I have never had a moment without head pain. I am sharing my journey with you to help you understand what those three and a half years have been like.
In November 2011, I became very ill with a sinus infection, bronchitis, and other viruses for about six weeks. I was on multiple antibiotics, breathing treatments, steroids and was eventually admitted to Beaumont Hospital. Once I recovered from all of the other illnesses, I was left with a chronic status migraine, 24 hours a day, or at least that’s what the doctors thought it was for about a year. Not knowing what was causing my pain, I was sent to multiple specialists, both at University of Michigan and Beaumont hospitals. I had every type of test you could think of- MRI’s, MRA’s, MRV’s, EEG’s, heart tests, nerve blocks, and constant blood work. Along with all of that testing, I was given what seemed like hundreds of medications, to try and break my head pain. The worst part was not a single one ever worked. My headache continued to remain a "mystery" and instead of being able to find diagnosis to help me, I just got used to hearing “you’re complicated.” No one really understood why my headache was “unbreakable”.
Because of my ‘unbreakable’ headache, I had to become a homebound student for the rest of my 7th grade year. Homebound is when a student is no longer able to attend school, so you are assigned a tutor who comes to you to help you with your school assignments. The pain and fatigue took over my days. That’s when I knew I was different from most of my peers. It was so unbelievable to me and I just couldn’t understand why the doctors could not figure out what was wrong with me. My life changed right before my eyes. I couldn't play soccer, attend school, and missed out on so many “normal” middle school activities. Not willing to give up, I still completed my school assignments with chronic head pain. My dedication to my school work did not go unnoticed. I was awarded the Royal Oak Youth Assistance Rising Star Award. This award recognizes students that work hard to overcome personal or academic challenges, students who rise above life’s difficulties. I was proud to know that my hard work and personal goals of not giving into this headache were recognized by others as well. I didn't feel so alone.
It was sooo important to me to be back at school for my 8th grade year. I started to learn to deal with my pain most days and with the support of my family and friends I return to school during my 8th grade year. I continued to undergo medical, homeopathic, and alternative medical treatments, along with changes to my medications. Unfortunately, none of them gave me relief. But I still loved being back at school with my friends and feeling as ‘normal’ as possible. I was determined to never be homebound again, even if it meant going to school every single day with a headache.
A year and a half had passed. I was still a medical mystery, and I still had a headache every minute of every day. In 2013, I went to yet another neurologist, and she ordered a spinal tap (a needle placed into your spine ). This test looked for elevated pressure of my cerebral spinal fluid. Turns out, mine was indeed elevated, and pretty much everyone in the operating room was absolutely shocked. We thought we finally figured out the reason for my constant head pain. I remember my mom crying in relief because there was finally an answer. But then, the disappointment came when my headache didn’t decrease or go away after they removed a lot of the excess fluid. Instead, I ended up with a “spinal headache’ and had to go back for a blood patch. A blood patch is when they take blood from your arm and inject it into your spine. It took the spinal headache away, but I was still left with my normal headache which was still “unbreakable”. To be sure, they did the spinal tap test four more times over the course of four months, devastingly followed each time by a blood patch due to the spinal headache I would develop. These tests and treatments were extremely painful to endure. After the five total spinal taps, it became evident that the pressure in my head may have nothing to do with my headache.
That year I started high school! I was so excited to be there and be a part of it all!! I was determined to be able to stay in school, remain focused on my studies, get involved in school groups, and be with my friends as much as possible. Quickly, that excitement would come to a screeching halt and my worst fear became true. I was missing too much school due to the intense head pain I was experiencing and had to be placed on homebound again. I was devastated. I ended up missing what felt like my entire freshman year and everything that came along with it. My two very best friends kept me as normal as possible. They never left my side and are still with me today. That helped, but in the end I have goals to go to college and I was not going to give into this headache. I continued to complete school assignments and took online classes to try to keep up with all of the requirements of earning my high school diploma on time.
My mom remained adamant that we would find someone that could help me. I used to tell her, “mom, no one knows what’s wrong with me and no one can fix me” or “I will be like this forever”. She refused to believe that and found the Michigan Head and Neurological Institute (MHNI), one of the top head pain clinics in the world. After a couple of appointments there with their headache experts it was clear I had to be admitted to their hospital for more intensive medical treatment. I spent 2 weeks there and that included my 15th birthday. I had tons of IV’s and they tried so many medications to try and break my head pain.
(In MHNI with her best friends there to support her)Even though my time at MHNI did not help my headache, while I was there I met another 15-year old girl that was just like me! Her name was Ellie. Little did I know how meeting her might later change my life. Our moms couldn’t believe how similar we were. Up until now our medical journeys had been so lonely, no one else understood our situation. I had never had anyone to talk to about this that completely got it. We had almost the exact same story- we were both ‘mysteries’, doctors could not figure out why our headaches were unbreakable and we had all of the same symptoms. We both left the hospital with no relief, but both continued on our medical journeys in hopes of finding an answer and an end to our constant headaches. I stayed with the doctors at MHNI and tried their botox treatment (32 needles put into my face, head, and neck). This resulted in the doctors telling my mom that I was one of their most complicated young girls to treat because again the botox didn't work to break my headache. This was hard to hear yet again, I had been hearing how complicated my case was for two and a half years and now the doctors that were considered some of the best in the world were telling me the same thing. It felt like we had run out of options. I wasn’t on any medications, because none of them worked, and I was faced with the reality of my situation. I would likely continue to have chronic head pain for the rest of my life.
However, on a hunch, my physical therapist guided us to a world renown eye specialist that she thought might be able to help me in some way. Even though I have 20/20 vision this doctor explained that I had vertical heterophoria and that wearing glasses with specialized prism lenses could help my headache by allowing the muscles in my eyes to rest. This in fact made enough difference in my headache to allow me to get back to school, this year, for my sophomore year. I still have a constant headache when wearing my glasses but the intensity of my headache is reduced most days. I remain focused on my studies and try to maintain what is potentially my new “normal”. Now, I try to enjoy my life with my friends and focus on my future and how to achieve the goals I have for that future.
But then came the encouragement of a message on facebook that there may still be something that can help me. Ellie had continued her medical journey going to the University of Texas Southwestern Medical Center. She had finally got relief after becoming a candidate for and receiving nerve decompression surgery! Ellie was, for the first time in over three years, pain free! I was so happy for her and I had hope again. Her mom, Deb, (my mom calls her an angel), urged my mom to have the doctor look at my case. She believed that if he could help Ellie than he could help me. I was all in! I had nothing to lose and everything to gain.
My mom sent all of my medical records to the doctor in Texas to review. She and I then spoke with him on the phone. After speaking to us about my case and my current symptoms he told us that he believed I was a candidate to come for a consultation with him! My mom and I flew to Texas, where we saw him for two separate appointments for two different treatments. The first visit is when he did nerve blocks. I already had many of these done in Michigan and they never worked. But he assured us that his procedure is very different from the ones I had done before. He knows exactly where the nerves are located that are believed to be causing my head pain. When he did the nerve blocks he placed a large needle in each of my temples and around my right eye. These blocks are only to provide relief for about 4 hours, if they work. We all weren’t sure they would work, but they did! For the first time in 3 and a half years I felt no pain in my temples and eye! My exact words to my mom were, “I can’t believe that actually worked.” This was big step towards becoming a candidate for nerve decompression surgery. Two days later, at my second appointment, he gave me Botox injections as well. Again, these were very different from the treatments I had before. The aftermath was probably the most painful experience I had. But the pain I endured would show the doctor how to understand the nerves in my head and create a surgery plan for me.
This nerve compression surgery is my best chance for relief and could change my life. I would no longer be a mystery with an unbreakable headache. After my surgery, I plan to be able to go to school and live my life like a truly normal teenage girl. To know that my headache could no longer be an obstacle for my future is absolutely amazing. I could finally see my dream of going to college and becoming a psychiatrist becoming a reality. I’ve never given into this headache and I never plan to, but the thought of having an opportunity to not have to deal with this pain every day is a godsend.
The only roadblock for me having this surgery at this point is the money needed to pay for it. Unfortunately, my insurance does not cover the surgery. After three and a half years of medical bills and insurance premiums my parents, Adam and Jami Savino, do not have the means themselves to pay this like many families who deal with chronic illness. We have exhausted all of the possibilities we can think of and that has now brought us to you. I would be forever grateful.
Organizer and beneficiary
Kristin Smith
Organizer
Royal Oak, MI
Jami Savino
Beneficiary