Ryan's Reed Procedure
Donation protected
**Please, don't mention this to Ryan. Erin would like to surprise him once we have the final count :) Thank you!**
Ryan and Erin first met in 2006 when they were both students in the MLIS program at Kent State University. The first few years of their relationship were relatively normal - they did all of the standard things that couples do: went out on dates, hung out with friends, and even went on some vacations together. However, as time passed, Ryan started noticing some issues with his balance; he started feeling increasingly dizzy. At first, doctors thought that he had an inner ear issue, and he went through a number of tests and saw and number of specialists to determine what was going on.
Eventually, more symptoms began to surface. After more tests and more doctors, Ryan was diagnosed with chronic migraine disorder.
As Erin and Ryan have quickly learned, a migraine is not "just a headache" - it's more complex than that, and it can include disturbances in vision, light sensitivity, nausea and vomiting. This can last for hours to days - and sometimes longer. The summer prior to their wedding in 2014, Ryan had continuous migraines from May through August, with very few non-migraine days in between.
A migraine has phases. Not every migraine will go through each phase - and the phases aren't always in order. At times, a migraine can even cycle between phases, lasting for days. The standard phases are:
-Premonitory/warning phase: physical or mental changes
-Aura: usually before the headache portion and can include vision changes, numbness/tingling, weakness, vertigo, speech and hearing disturbances, memory changes, fear/confusion, partial paralysis, or fainting
-Headache/main attack: throbbing pain made worse by movement. Can be on one or both sides. The phase can also include light/sound sensitivity, nausea and vomiting.
-Resolution
-Recovery/posdrome: a "hangover" type feeling that can last hours/days after a migraine
Chronic migraine is defined by the International Headache Society as more than 15 headache days per month over a three month period. With respect to the number of headache days per month, every month is a little different for him, but Ryan most definitely suffers from this condition.
Ryan has spent years and seen multiple doctors trying to find an appropriate – and effective – treatment. Most of the treatments that have been suggested have been abortive – they exist to stop the migraines once they’ve started: medication, steroids, and infusions (essentially, being hooked up to an IV at the hospital for hours over a three day period to try and break the migraine cycle). However, some of the treatments have been an attempt to prevent the migraines from starting: vitamins and supplements, medication, Botox injections, and a surgery that included partial excision of his trigeminal nerve. So far, although they've seen a slight improvement over time, nothing has successfully gotten rid of the migraines, nor are they under control.
Chronic migraine has kept Ryan home from work, from being with his friends, and from spending time with family. It’s prevented him from functioning. He even had a migraine on their wedding day, which meant he spent a large portion of the reception outside of the hall, away from the lights and music, instead of being able to enjoy the day with friends and family.
Erin and Ryan recently learned about a surgery being performed on chronic migraine sufferers known as the Reed Procedure. This peripheral nerve stimulation treatment was developed by Dr. Kenneth Reed specifically for migraineurs. Essentially, leads are implanted under the skin in the forehead and back of the neck, adjacent to areas of pain, and deliver mild electrical pulses to the nerves – these stimulators serve as a “pacemaker for pain.” The pulses replace the feeling of pain with a tingling/massaging sensation.
Candidates for the procedure typically experience frequent, severe and debilitating head pain that has not responded to more conservative treatments.
Patients who are candidates for this procedure first have a 3- to 7-day non-invasive test to determine whether the neurostimulators will work for them prior to having these implanted. A test stimulator is used, much like an IV tube under the skin, and is left in for a few days to see if the patient stops feeling the headaches. If the unit will work, it will do so immediately and dramatically. The patient will leave the hospital that day and will wear the unit for a few days. Upon returning to the hospital, the patient will know if the unit has worked and if they will be moving forward with a permanent stimulator implant.
Erin and Ryan have already been approved by their insurance company for Ryan to undergo the trial portion of this procedure, which will be happening in mid-November. The next step is for them to travel to Dallas, Texas, for Ryan to undergo the trial which will show them if neurostimulation will work to control his migraine pain. This has an 80+% success rate! If the neurostimulation trial works, they will move forward and contact insurance to get approval for the leads to be implanted permanently. These leads are located in the forehead and back of the neck, just under the skin. The approval can take 3-4 weeks, which would mean a second trip to Dallas for the “real” surgery.
Comments from some of Dr. Reed’s patients have all had the same bottom line: “I’ve been given my life back.” This is ultimately what we are hoping for!
While their medical insurance has approved the trial surgery, they were informed that there would still be out-of-pocket costs for this; they still do not know if insurance will ultimately approve the final surgery. In addition, they will have to travel to Dallas and stay there for the duration of the trial and surgery, which will likely be a week for each procedure.
As Erin's sister, I've seen the toll this condition has taken on both Erin and Ryan. My sister and Ryan deserve to have a life together that does not involve constant migraines and the repercussions that stem from them. They deserve to have a normal life, doing the things that they love together, and not having to worry about Ryan's health.
We want to provide Ryan with a lasting soultion to his migraines, and I know that all of our friends and family want to do the same.
We hope to reach our goal by the beginning of November. Thank you for your contributions! Erin and Ryan are grateful for all the support they have received from their friends, family, and co-workers.
If you would like to learn more about this procedure, click here.
Ryan and Erin first met in 2006 when they were both students in the MLIS program at Kent State University. The first few years of their relationship were relatively normal - they did all of the standard things that couples do: went out on dates, hung out with friends, and even went on some vacations together. However, as time passed, Ryan started noticing some issues with his balance; he started feeling increasingly dizzy. At first, doctors thought that he had an inner ear issue, and he went through a number of tests and saw and number of specialists to determine what was going on.
Eventually, more symptoms began to surface. After more tests and more doctors, Ryan was diagnosed with chronic migraine disorder.
As Erin and Ryan have quickly learned, a migraine is not "just a headache" - it's more complex than that, and it can include disturbances in vision, light sensitivity, nausea and vomiting. This can last for hours to days - and sometimes longer. The summer prior to their wedding in 2014, Ryan had continuous migraines from May through August, with very few non-migraine days in between.
A migraine has phases. Not every migraine will go through each phase - and the phases aren't always in order. At times, a migraine can even cycle between phases, lasting for days. The standard phases are:
-Premonitory/warning phase: physical or mental changes
-Aura: usually before the headache portion and can include vision changes, numbness/tingling, weakness, vertigo, speech and hearing disturbances, memory changes, fear/confusion, partial paralysis, or fainting
-Headache/main attack: throbbing pain made worse by movement. Can be on one or both sides. The phase can also include light/sound sensitivity, nausea and vomiting.
-Resolution
-Recovery/posdrome: a "hangover" type feeling that can last hours/days after a migraine
Chronic migraine is defined by the International Headache Society as more than 15 headache days per month over a three month period. With respect to the number of headache days per month, every month is a little different for him, but Ryan most definitely suffers from this condition.
Ryan has spent years and seen multiple doctors trying to find an appropriate – and effective – treatment. Most of the treatments that have been suggested have been abortive – they exist to stop the migraines once they’ve started: medication, steroids, and infusions (essentially, being hooked up to an IV at the hospital for hours over a three day period to try and break the migraine cycle). However, some of the treatments have been an attempt to prevent the migraines from starting: vitamins and supplements, medication, Botox injections, and a surgery that included partial excision of his trigeminal nerve. So far, although they've seen a slight improvement over time, nothing has successfully gotten rid of the migraines, nor are they under control.
Chronic migraine has kept Ryan home from work, from being with his friends, and from spending time with family. It’s prevented him from functioning. He even had a migraine on their wedding day, which meant he spent a large portion of the reception outside of the hall, away from the lights and music, instead of being able to enjoy the day with friends and family.
Erin and Ryan recently learned about a surgery being performed on chronic migraine sufferers known as the Reed Procedure. This peripheral nerve stimulation treatment was developed by Dr. Kenneth Reed specifically for migraineurs. Essentially, leads are implanted under the skin in the forehead and back of the neck, adjacent to areas of pain, and deliver mild electrical pulses to the nerves – these stimulators serve as a “pacemaker for pain.” The pulses replace the feeling of pain with a tingling/massaging sensation.
Candidates for the procedure typically experience frequent, severe and debilitating head pain that has not responded to more conservative treatments.
Patients who are candidates for this procedure first have a 3- to 7-day non-invasive test to determine whether the neurostimulators will work for them prior to having these implanted. A test stimulator is used, much like an IV tube under the skin, and is left in for a few days to see if the patient stops feeling the headaches. If the unit will work, it will do so immediately and dramatically. The patient will leave the hospital that day and will wear the unit for a few days. Upon returning to the hospital, the patient will know if the unit has worked and if they will be moving forward with a permanent stimulator implant.
Erin and Ryan have already been approved by their insurance company for Ryan to undergo the trial portion of this procedure, which will be happening in mid-November. The next step is for them to travel to Dallas, Texas, for Ryan to undergo the trial which will show them if neurostimulation will work to control his migraine pain. This has an 80+% success rate! If the neurostimulation trial works, they will move forward and contact insurance to get approval for the leads to be implanted permanently. These leads are located in the forehead and back of the neck, just under the skin. The approval can take 3-4 weeks, which would mean a second trip to Dallas for the “real” surgery.
Comments from some of Dr. Reed’s patients have all had the same bottom line: “I’ve been given my life back.” This is ultimately what we are hoping for!
While their medical insurance has approved the trial surgery, they were informed that there would still be out-of-pocket costs for this; they still do not know if insurance will ultimately approve the final surgery. In addition, they will have to travel to Dallas and stay there for the duration of the trial and surgery, which will likely be a week for each procedure.
As Erin's sister, I've seen the toll this condition has taken on both Erin and Ryan. My sister and Ryan deserve to have a life together that does not involve constant migraines and the repercussions that stem from them. They deserve to have a normal life, doing the things that they love together, and not having to worry about Ryan's health.
We want to provide Ryan with a lasting soultion to his migraines, and I know that all of our friends and family want to do the same.
We hope to reach our goal by the beginning of November. Thank you for your contributions! Erin and Ryan are grateful for all the support they have received from their friends, family, and co-workers.
If you would like to learn more about this procedure, click here.
Organizer and beneficiary
Allison Michael
Organizer
Kent, OH
Erin Michael
Beneficiary