Margaret’s Beautiful Brain Fund
Donation protected
The Story of My Brain
(If you don't want to read the whole long backstory, just skip to the last few paragraphs. The tl;dr is: I need brain surgery, I'll be out of work for 4-6 weeks at the very least, and then there will be the medical bills. I need help. Thank you!)
In November 2012, I had a mysterious virus that caused my brain to swell and woke me from a deep sleep with neck/shoulder pain, nausea and a seizure-like headache that was later referred to by doctors as a thunderclap headache. When it wouldn't go away for more than 24 hours, I was convinced to go to the ER. I spent 4 days and 3 nights at University Hospital while they poked and prodded me, including a spinal tap, trying to figure out what was wrong. Initial diagnosis was bacterial meningitis, but after several days in isolation, infectious disease doctors decided I did not indeed have meningitis. But they had found two benign masses in my brain via the MRIs and thought they were perhaps the reason for my symptoms. They discharged me w/recommendations to follow up w/the LSU neuro clinic.
At my 1st neuro appointment at the clinic in Dec. 2012, the doc said I had 3 options: watch and wait, monitor regularly; focused radiation; or surgery. He said he would have the surgery if it was him - he could have me on the table in a few days - but as it was not currently causing me symptoms, I should take a month to think on it and come back.
I went back in Feb. 2013 and was seen by a different doc, getting me an inadvertent second opinion; I liked the 2nd doc a lot more than the first. He recommended I come back in 6 months for another MRI to see if it was growing. So we set a date and left it at that. I had another MRI in June, and nothing had changed. I met w/yet another (the 3rd) neuro doc who advised it would be OK to watch and wait since there was no growth. Come back in a year for another MRI.
By 2014, I no longer qualified for Medicaid so was waiting until I could get Obamacare to cover an MRI. When I did finally try to follow up again, after I had Obamacare, I couldn't get the insurance company to sign off on the MRI, which was needed to see the neurosurgeon. I got frustrated with the bureaucracy and just quit trying. I wasn't having symptoms, after all, so it didn't feel urgent.
Well, as happens in life, time got away from me. Months became years.
Fast forward to June of this year, several years later. I had another one of those thunderclap headaches, minus the nausea. (I had not had one since the original in 2012.) But the pain and everything else about it was familiar. I felt poorly, fatigued, out of sorts, and worried it could be Covid; thankfully a subsequent test was negative. But I knew it was time to get my head checked out. I told my primary care doc at my annual physical at the end of July about the recent headache, and after much back and forth, she referred me to get an MRI and the insurance finally signed off on it. I had the MRI August 18th. This finally enabled me to make a neuro appointment.
At the long awaited neurosurgery appointment August 31st, he told me both tumors had grown "as would be expected," meaning slowly but surely, over the past 8 years. One, a plaque-like mass spanning the left to right parts of my brain, is most likely responsible for my double vision symptoms I've had intermittently over the past few months. He is "not concerned" with that one right now, as due to location and size it is more risky to take out than to leave in, and he thinks my double vision may resolve on its own. He wants to try to "ride it out."
The other tumor which is larger is pressing against my medulla (brain stem), on the left side. He is concerned with it affecting my ability to swallow, breathe, and/or speak at some point, and so he is recommending a craniotomy, i.e. brain surgery, to remove it. They will make a small incision behind my left ear, remove a window of my skull to access my brain, and cut away as much of the tumor as they can safely.
I've now had a follow-up appointment, Sept. 9th, to which I brought along three of my friends (Debra, Puma and Lisa); we asked all the questions and got more clarity about what surgery and after-care will look like. And today I scheduled the surgery: it will be Tuesday, October 13th, giving me roughly a month to get all my ducks in a row.
Best case scenario seems to be I'll be in the hospital for a few days and then recovering at home for several weeks. But there could be complications and he's most concerned about my ability to swallow being impacted short term as a result of the surgery, from a few days to up to a month, possibly requiring a feeding tube. I might have to stay in the ICU for longer; I might have to go to rehab before coming home. Everything depends on how the surgery goes and how my body reacts. But even if there are no complications, I will need to take things VERY slow getting back to my life, as I've learned brain healing is much slower than other parts of the body.
At the very least, I will be out of dog walking/pet-sitting work for probably 4-6 weeks. My Etsy shop, which is always my backup/side hustle, will most likely have to be shut down temporarily while I'm recuperating. I have little savings and I don't have much credit available to me. And I have no partner or blood family I can turn to for support. My friends, my community, my network are always who have lifted me up when I've needed it, so I am humbly asking for your support again. I will need some help with living expenses to get me through the surgery and the recuperation, and of course later, there will be the onslaught of medical bills that will follow. (I do have insurance through the ACA, but I am unclear at this point in time how much I will be responsible for.)
I've struggled to write this part of my story. I'm really not good at asking for help. And I never thought I'd be the one to be asking for THIS kind of help. But here I am. I guess this is the universe, still trying to teach me lessons.
My beloved Dix Marie will be administering this GoFundMe and making updates while I'm incapacitated. We've set what feels to me like a lofty goal but I know I'll likely need even more in the long run.
I thank you from the bottom of my heart and hope I can pay it forward after I've recovered. I love and appreciate all of you.
(If you don't want to read the whole long backstory, just skip to the last few paragraphs. The tl;dr is: I need brain surgery, I'll be out of work for 4-6 weeks at the very least, and then there will be the medical bills. I need help. Thank you!)
In November 2012, I had a mysterious virus that caused my brain to swell and woke me from a deep sleep with neck/shoulder pain, nausea and a seizure-like headache that was later referred to by doctors as a thunderclap headache. When it wouldn't go away for more than 24 hours, I was convinced to go to the ER. I spent 4 days and 3 nights at University Hospital while they poked and prodded me, including a spinal tap, trying to figure out what was wrong. Initial diagnosis was bacterial meningitis, but after several days in isolation, infectious disease doctors decided I did not indeed have meningitis. But they had found two benign masses in my brain via the MRIs and thought they were perhaps the reason for my symptoms. They discharged me w/recommendations to follow up w/the LSU neuro clinic.
At my 1st neuro appointment at the clinic in Dec. 2012, the doc said I had 3 options: watch and wait, monitor regularly; focused radiation; or surgery. He said he would have the surgery if it was him - he could have me on the table in a few days - but as it was not currently causing me symptoms, I should take a month to think on it and come back.
I went back in Feb. 2013 and was seen by a different doc, getting me an inadvertent second opinion; I liked the 2nd doc a lot more than the first. He recommended I come back in 6 months for another MRI to see if it was growing. So we set a date and left it at that. I had another MRI in June, and nothing had changed. I met w/yet another (the 3rd) neuro doc who advised it would be OK to watch and wait since there was no growth. Come back in a year for another MRI.
By 2014, I no longer qualified for Medicaid so was waiting until I could get Obamacare to cover an MRI. When I did finally try to follow up again, after I had Obamacare, I couldn't get the insurance company to sign off on the MRI, which was needed to see the neurosurgeon. I got frustrated with the bureaucracy and just quit trying. I wasn't having symptoms, after all, so it didn't feel urgent.
Well, as happens in life, time got away from me. Months became years.
Fast forward to June of this year, several years later. I had another one of those thunderclap headaches, minus the nausea. (I had not had one since the original in 2012.) But the pain and everything else about it was familiar. I felt poorly, fatigued, out of sorts, and worried it could be Covid; thankfully a subsequent test was negative. But I knew it was time to get my head checked out. I told my primary care doc at my annual physical at the end of July about the recent headache, and after much back and forth, she referred me to get an MRI and the insurance finally signed off on it. I had the MRI August 18th. This finally enabled me to make a neuro appointment.
At the long awaited neurosurgery appointment August 31st, he told me both tumors had grown "as would be expected," meaning slowly but surely, over the past 8 years. One, a plaque-like mass spanning the left to right parts of my brain, is most likely responsible for my double vision symptoms I've had intermittently over the past few months. He is "not concerned" with that one right now, as due to location and size it is more risky to take out than to leave in, and he thinks my double vision may resolve on its own. He wants to try to "ride it out."
The other tumor which is larger is pressing against my medulla (brain stem), on the left side. He is concerned with it affecting my ability to swallow, breathe, and/or speak at some point, and so he is recommending a craniotomy, i.e. brain surgery, to remove it. They will make a small incision behind my left ear, remove a window of my skull to access my brain, and cut away as much of the tumor as they can safely.
I've now had a follow-up appointment, Sept. 9th, to which I brought along three of my friends (Debra, Puma and Lisa); we asked all the questions and got more clarity about what surgery and after-care will look like. And today I scheduled the surgery: it will be Tuesday, October 13th, giving me roughly a month to get all my ducks in a row.
Best case scenario seems to be I'll be in the hospital for a few days and then recovering at home for several weeks. But there could be complications and he's most concerned about my ability to swallow being impacted short term as a result of the surgery, from a few days to up to a month, possibly requiring a feeding tube. I might have to stay in the ICU for longer; I might have to go to rehab before coming home. Everything depends on how the surgery goes and how my body reacts. But even if there are no complications, I will need to take things VERY slow getting back to my life, as I've learned brain healing is much slower than other parts of the body.
At the very least, I will be out of dog walking/pet-sitting work for probably 4-6 weeks. My Etsy shop, which is always my backup/side hustle, will most likely have to be shut down temporarily while I'm recuperating. I have little savings and I don't have much credit available to me. And I have no partner or blood family I can turn to for support. My friends, my community, my network are always who have lifted me up when I've needed it, so I am humbly asking for your support again. I will need some help with living expenses to get me through the surgery and the recuperation, and of course later, there will be the onslaught of medical bills that will follow. (I do have insurance through the ACA, but I am unclear at this point in time how much I will be responsible for.)
I've struggled to write this part of my story. I'm really not good at asking for help. And I never thought I'd be the one to be asking for THIS kind of help. But here I am. I guess this is the universe, still trying to teach me lessons.
My beloved Dix Marie will be administering this GoFundMe and making updates while I'm incapacitated. We've set what feels to me like a lofty goal but I know I'll likely need even more in the long run.
I thank you from the bottom of my heart and hope I can pay it forward after I've recovered. I love and appreciate all of you.
Organizer and beneficiary
Dix Marie
Organizer
New Orleans, LA
Margaret Coble
Beneficiary
