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Fundraiser by Melissa Miller : Help get Noah to the Mayo Clinic (gofundme.com)
Hi, Our names are Steve and Melissa and we are fundraising for money to pay for our son to be seen at The Mayo Clinic. He has been going through a lot of medical difficulties over the past several years.
He was diagnosed with Epilepsy and has been going to Children's Hospital in St. Louis for years.
It started with him having seizures and they prescribed him with medication. That medicine wasn't stopping the seizures so they kept increasing the medicine until it was maxed out past what he should have been taking.
Next they added a second medication.
Next they did an MRI that showed he had a Cavernous Malformation. They said that wouldn't be causing the seizures though. So nothing needed to be done.
What is cavernous malformation?
Cavernous Malformations (Cavernomas) What is a cavernous malformation (CM)? A cavernous malformation (CM) is an abnormal cluster of capillaries and venules (tiny blood vessels) that periodically bleed and give rise to a "popcorn-like" lesion in the brain or spinal cord with very thin walls that contains blood of different ages.
Steve used google and did a lot of research. He called the doctors and said everything he had researched showed that yes the Cavernoma could be the cause of the seizures. So the doctors decided that yes that needed to be taken care of. They did a Laser Ablation surgery on our son's brain to remove the cavernoma. We thought that it worked because his seizures stopped for about 6 months but then they started back up.
Next we go in for an appointment with the surgeon who tells us that the Laser surgery didn't do what it was supposed to. He used his hands and made a circle with his fingers. He held up one hand with his thumb and finger making a circle and said we told the laser to go here then he held up his other hand with his thumb and finger making a circle and overlapped the two showing how they didn't match up and said but in stead in went here. He showed that the laser missed the mark and that was the problem. He said that we needed to now have a craniotomy done to remove the rest of the cavernoma. Because the laser didn't get it all.
Next step is the craniotomy. ( After EEGs and MRIs and more medicine adjustments)
Our son has that done. He is still having seizures and after a few more medication changes where they would prescribe one and it not work for him and change to another one.
They said that he now needs a 3rd surgery. Here are the reason why on that.
The 2nd surgery didn't fix it. The MRI says that there are old blood products at the resection site.
Resection site is where they did surgery. It shows that there are old blood products there. All that would need removed. Google ( and yes we use Google a lot LOL )says the only reason for old blood product to be there is a mishap during the surgery. Not sure what those mishaps are because they won't tell us anything about that.
Now we get to this point. His surgeon has left the hospital and moved out of state to work at a different hospital. We are at the point of knowing that he needs another surgery to remove all of the white matter and old blood products caused from the 1st 2 surgeries but it can't be done unless all the doctors agree and they won't agree. His neurologist showed us an MRI and pointed to a spot on it and said this right here needs to be removed. I said ok just so we are all on the same page here and there are no false hopes are you saying that if he has a surgery and that is removed will it fix everything and he won't have any more seizures. She said I feel that he would be seizure free if this was taken care of. But before they will move forward with it They want him to do a lot of other things first before they will even consider another surgery to fix this. They said they need a 2nd opinion saying that yes a surgery is what he needs before they will even consider it. They have already put him through several EEG and MRIs. Plus they sent us out of state to get a much better test for collecting data called a MEG. But they say all that imaging and data isn't enough. They want him to go in and have an in the hospital stay for an EEG that has electrodes hooked to his brain. This would be a minor surgery to install the electrodes and they would be removed afterwards. While he is there for a week to 2 they want to take all of his medication away so they can induce really big seizures and collect the data on that. They said one wouldn't be enough and small ones wouldn't be enough they would need him to have several big seizures. At this point his doctor suggested that he get a second opinion.
That brings us to The Mayo Clinic. We wanted the best. If our son needs to go to another doctor then we want the best. We called them and they said to send them as much data as we could then they would determine if they could give us an appointment or if they felt like his doctors were doing everything they could and then they wouldn't be able to give us an appointment. We sent them MRI imaging, EEG and MEG testing imaging and reports.
They called back and said yes they can give him an appointment. They do not accept his insurance and they want all the money upfront to get started.
Here is what they want to do and the cost of it.
This will all be the week of Sept. 3rd - the 13th. We live out of the state so we will need to stay in a hotel for the time. The fundraising funds will pay for gas to travel there, hotel stay, food, and all the doctor visits and testing. All receipts will be kept and anything not spent will be donated to St. Paul Lutheran High School for charity to help other families in need. We are not trying to make money off our kid. We are just looking for help to pay for all of this. He can't go on like this. He is 17 years old a high school senior now and he can't drive. He can't really do much of anything because his seizures are uncontrollable right now. He has missed out on the every day teenage boy life. Now we are close to getting it fixed but still have hurdles to jump over before he gets his life back.
Cost to the Mayo Clinic on arrival:
EEG $1238
Office visit with Dr. $870
Covid Screening $82
Sleep deprived Epilepsy monitoring $5000
PET MRI - $11,130
There will be more costs after all these test they will move forward with a surgery. The surgery will have a cost of
it's own. One step at a time. For now the total for him to be seen and have these test done will be $18,320 This has to be upfront on the day we show up.
Thank you all!
Fundraiser by Melissa Miller : Help get Noah to the Mayo Clinic (gofundme.com)
Can anyone tell me why money has anything to do with a child getting the medical attention they need? I'm absolutely disgusted that it does. This accepted standard of care for our youth is unacceptable!
Steve Miller
