A helping hand
Donation protected
Those who know me, know I rely almost solely on my faith. I have prayed for years to know what was wrong with my husbands health. When we decided to build a family, I would have never imagined our lives being so filled with struggle, but I'm trusting in the fact that there's a mess in the message, and I have no doubt the 4 of us will be stronger than ever once we make it out on the other side.
We have had our share of ups and downs, but through the ocassional help from family, and his persistence to push through bad days to continue working to provide for us, we always find a way to make life work. Health issues became more increasingly obvious and more consistent for Virgil last Summer, and we began preparing to dig for answers-purchasing health insurance, etc. Once we had medical benefits, the fun began...or so we thought. It has taken us 4 very emotional months of frustration from physicians not listening, tests being performed or interpreted incorrectly, and often times feeling scared and isolated from the confusion.
Through the past 4 months, we have gathered information that has brought us full circle to when it all began.
In January of 2012, Virgil was rear ended at a high rate of speed, causing him to smash into the car in front of him. During the accident, something happened that I didnt even know was possible, he got a tear in his dura-the protective material that coats your brain and spinal cord which is responsible for creating cerebrospinal fluid. That leak formed somewhere in the skull base, at the sinus level. Within weeks of the accident, he started having sinus issues, accompanied with extreme vertigo and vomitting. It was never detected by doctors. It literally changed the person that he was in many ways. He found coping mechanisms, and ways to get through the day, but there were some days where he just couldn't. What we have learned is that 99% of the people with a cranial csf leak has a connective tissue disorder. The other 1% was kicked in the face by a donkey. During Februarys hospital stay, bloodwork did detect a possible autoimmune connective tissue disorder, and we've been waiting to get in to the Rheumatologist ever since. Many things have happened as a result of this leak, many scary symptoms that seemed to never happen around a physician, or anyone else who didnt believe us. The most current issue is a Chiari Malformation. People are generally born with that defect. Virgil was not, nor was it seen or demonstrated on any other brain MRI or CT. This means it is an acquired malformation, caused by the over production of csf to compensate for the leak. The Chiari Malformation is a crowding of the space where the brain and spinal cord meet. Not sure why, but he gets a temporary "brain sag" where the base of the brain, which is responsible for wakefulness, slips down through the spinal column and he has issues, in particular staying awake.
Our next step is a pretty daunting test where the inject a radioisotope into the spinal column through a lumbar puncture and place "pledgets" in the nose so they can physically "watch" the csf flow to detect exactly where the leak is. Leaks in the spine can be repaired with a blood patch. Leaks in the cranial base is a little more difficult to deal with. That will require a brain surgery that is only done in a handful of places around the country, only because of the machine that makes it minimally invasive through the nose. For us, the options are UF, UM. and Duke. We begin the testing for the connective tissue disease on 5/15. Often times when you fix leaks, if you have a connective tissue disease, you'll build pressure and could bust another leak, so he will likely need a shunt placed in the brain to keep the fluid from building on his brain as it often does every morning which is why he often wakes with visual disturbances. Once we locate the leak, we can work on sending records to the csf leak clinic in Gainesville to get him in for a surgical consult, waiting list. We know its a rough recovery, but it can't be worse than the last 7 years. At this point, we are running out of options for survival. He isnt turning any work down, but he can't go get any extra accounts, and technically should be on bed rest with increased fluids.
We have to move in a month (June 1) and just the stress of life is weighing so much on us, I literally only have my faith left. (Which I know is more than enough)
We got through the holidays and testing months believing that circumstances that have happened in the past would come back to good to support us through this Valley in life, and I still believe that, but I also know that faith without works is dead.
This is very hard for me to do. I am not asking for a hand out. I am a jack of all trades and willing to work off any donation towards my families needs, and plan on paying any generosity forward when we are able, but in the meantime if anyone needs babysitting, housework, yardwork, organizational assistance, or the like, please think of me. If you want something built, he can make custom pieces, but he has to work slowly and take breaks. I dont know what else to do or offer, I can not make it alone on my PT job. I love my job, and they've been more than understanding with my availability but I truly cant afford to work there, but I also don't feel anyone would hire me on FT knowing I will need an uncertain amount of time off sometime in the future.
I will also willingly accept all advice, suggestions, hugs, love, prayers and shares of this campaign.
Again, I never thought we would be here. Swallowing pride is one of the hardest things to do. But as a wife and mother, I have no other choice than to ask my friends and family for help through this dark hallway as to not break a promise to my family that everything will be OK!
Thank you all for your continued prayers, we truly feel them and your love will not go unnoticed in time, trust that.
Much Love,
Lindsey Garrison
We have had our share of ups and downs, but through the ocassional help from family, and his persistence to push through bad days to continue working to provide for us, we always find a way to make life work. Health issues became more increasingly obvious and more consistent for Virgil last Summer, and we began preparing to dig for answers-purchasing health insurance, etc. Once we had medical benefits, the fun began...or so we thought. It has taken us 4 very emotional months of frustration from physicians not listening, tests being performed or interpreted incorrectly, and often times feeling scared and isolated from the confusion.
Through the past 4 months, we have gathered information that has brought us full circle to when it all began.
In January of 2012, Virgil was rear ended at a high rate of speed, causing him to smash into the car in front of him. During the accident, something happened that I didnt even know was possible, he got a tear in his dura-the protective material that coats your brain and spinal cord which is responsible for creating cerebrospinal fluid. That leak formed somewhere in the skull base, at the sinus level. Within weeks of the accident, he started having sinus issues, accompanied with extreme vertigo and vomitting. It was never detected by doctors. It literally changed the person that he was in many ways. He found coping mechanisms, and ways to get through the day, but there were some days where he just couldn't. What we have learned is that 99% of the people with a cranial csf leak has a connective tissue disorder. The other 1% was kicked in the face by a donkey. During Februarys hospital stay, bloodwork did detect a possible autoimmune connective tissue disorder, and we've been waiting to get in to the Rheumatologist ever since. Many things have happened as a result of this leak, many scary symptoms that seemed to never happen around a physician, or anyone else who didnt believe us. The most current issue is a Chiari Malformation. People are generally born with that defect. Virgil was not, nor was it seen or demonstrated on any other brain MRI or CT. This means it is an acquired malformation, caused by the over production of csf to compensate for the leak. The Chiari Malformation is a crowding of the space where the brain and spinal cord meet. Not sure why, but he gets a temporary "brain sag" where the base of the brain, which is responsible for wakefulness, slips down through the spinal column and he has issues, in particular staying awake.
Our next step is a pretty daunting test where the inject a radioisotope into the spinal column through a lumbar puncture and place "pledgets" in the nose so they can physically "watch" the csf flow to detect exactly where the leak is. Leaks in the spine can be repaired with a blood patch. Leaks in the cranial base is a little more difficult to deal with. That will require a brain surgery that is only done in a handful of places around the country, only because of the machine that makes it minimally invasive through the nose. For us, the options are UF, UM. and Duke. We begin the testing for the connective tissue disease on 5/15. Often times when you fix leaks, if you have a connective tissue disease, you'll build pressure and could bust another leak, so he will likely need a shunt placed in the brain to keep the fluid from building on his brain as it often does every morning which is why he often wakes with visual disturbances. Once we locate the leak, we can work on sending records to the csf leak clinic in Gainesville to get him in for a surgical consult, waiting list. We know its a rough recovery, but it can't be worse than the last 7 years. At this point, we are running out of options for survival. He isnt turning any work down, but he can't go get any extra accounts, and technically should be on bed rest with increased fluids.
We have to move in a month (June 1) and just the stress of life is weighing so much on us, I literally only have my faith left. (Which I know is more than enough)
We got through the holidays and testing months believing that circumstances that have happened in the past would come back to good to support us through this Valley in life, and I still believe that, but I also know that faith without works is dead.
This is very hard for me to do. I am not asking for a hand out. I am a jack of all trades and willing to work off any donation towards my families needs, and plan on paying any generosity forward when we are able, but in the meantime if anyone needs babysitting, housework, yardwork, organizational assistance, or the like, please think of me. If you want something built, he can make custom pieces, but he has to work slowly and take breaks. I dont know what else to do or offer, I can not make it alone on my PT job. I love my job, and they've been more than understanding with my availability but I truly cant afford to work there, but I also don't feel anyone would hire me on FT knowing I will need an uncertain amount of time off sometime in the future.
I will also willingly accept all advice, suggestions, hugs, love, prayers and shares of this campaign.
Again, I never thought we would be here. Swallowing pride is one of the hardest things to do. But as a wife and mother, I have no other choice than to ask my friends and family for help through this dark hallway as to not break a promise to my family that everything will be OK!
Thank you all for your continued prayers, we truly feel them and your love will not go unnoticed in time, trust that.
Much Love,
Lindsey Garrison
Organizer
Lindsey Garrison
Organizer
Cape Coral, FL
