Tom Kettering Brain Surgery Fund
Donation protected
My husband Tom has a cystic tumour on the pineal gland in his brain that needs to be removed. But because it is not a cancerous tumour, no doctors in Canada can, or will, perform the surgery to remove it. There are only two doctors in the USA that can do it. The cost to have it done is $250,000 dollars and our Canadian medical system will not pay for it.
Tom has suffered with migraines for most of his life but they have become increasingly worse over the past 10 years and are now daily and completely debilitating. They have gotten so bad that he can no longer work and only leaves the house now to go to and from his doctor appointments, most of which I have to drive him to as he isnt able. The headaches are there all day every day and the pain only fluctuates from barely tolerable to excruciating, there is never a break from the pain. We have tried anything and everything possible to find something to help relieve the pain but nothing works.
Tom says all the time that he feels he is living a slow death. The constant pain has taken away any quality of life possible and there are many days that the thought of not living at all would be easier than him having to live with this pain. So for us, as frustrating as it is that our medical system will not cover the cost of surgery, not getting it done is just not an option. There is too much life left to live to watch Tom suffer like this anymore. So surgery is booked for November and we will just have to deal with the financial consequences of it as best we can. I would do and give up everything to see him healthy and happy again.
The medical system was proving to be a joke, no doctors were willing to take the time to help and it began to feel like we were in this alone. We took it upon ourselves back in 2009 to pay privately and get an MRI done at False Creek. It showed Tom has an 8mm cystic tumour on his pineal gland. The neurologist report stated that based on its size and that is was not cancerous that it was best to just leave it alone, that it 'shouldn’t' be causing the long list of sytmoms Tom suffers with daily. So we carried on looking for other answers or anything that may help. Thousands and thousands of dollars were spent on naturopath, chiro, massage, acupuncture, botox, hyperbaric chamber treatments, myofascial release treatments, trigger point injections… you name it we tried it. We even paid $30,000 at the Mayo Clinic in Arizona to see if they had any answers. And still nothing. Everyone just said they were just migraines and to just 'try to find something that makes life tolerable'. We just kept getting tossed around and spit back out by the medical system.
So after six years of that, and the pain and symptoms increasing to where a quality of life no longer exists for Tom, we started wondering if the tumour could be causing the problems. I started doing some research and was shocked to find story after story of people just like Tom, all that had suffered with the same headaches and symptoms, and had had the surgery to remove their tumours, and are now symptom free.
I got in touch with the two surgeons in the states and after sending Toms MRI results down to them, they both agreed that with the way the tumour was positioned on the pineal gland that his symptoms were most likely caused by it and they both recommend that we have it removed. We went back to our doctors up here and mentioned the consults we had and the hundreds of others that suffer the same way and have had success, but still no one up here was willing to advocate for us that it is ‘necessary’. If we wanted to have it done we were choosing to have an 'elective' surgery and it would be at our expense.
Our medical system sees the surgery as ‘elective’ because they say that because the tumour is not cancerous it ‘technically’ won’t kill you and therefore does not need to be removed. I can understand that statement if a patient had no symptoms whatsoever and just wanted it removed, then yes, surgery in that case would be elective. But when you have someone that has suffered for more than 10 years and has made every effort possible to find a solution, how can the system deny them of the one thing that could actually help. We came across 5 other Canadians that all had the same stories as Tom and had the surgery and are now back to living a normal life. They all say that the surgery ‘saved their life’ and that they would not be there today if it wasn't for the doctors that were able to do it. They all applied to the government for funding and all were denied. Even after seeing that the surgery worked and that all their symptoms were gone, they still would not offer to reimburse anyone for anything. They expect those suffering in pain, most unable to work, to somehow find $250,000 to pay for a surgery very necessary to them. I wonder how differently any of these doctors, or those that make the decisions to deny funding, would think if it was their son or daughter or husband or wife suffering with this debilitating pain.
It is so painful and frustrating to have to watch Tom suffer through this for all these years and finally have a solution just to be told its 'not necessary'. What kind of medical system do we have? I have seen people that have had breast reduction surgery paid for by the medical system because they were having back pain, or a friends father-in-law having gender reassignment surgery done, paid for by our medical system… how are those 100% elective surgeries covered and a surgery that has been proven to relieve life affecting pain is not??
The pain tom suffers with on a daily basis has tremendously affected our lives. Through this, we are hoping to not only raise some money to help with the cost of surgery and the many expenses that will incur afterwards while I am off work taking care of him, but also to raise awareness about our failing medical system. There are too many that suffer with pineal tumours that need surgery and cant get it done because they dont have the financial means and get no help from our medical system.
Thank you for taking the time to read this and to share our story. Any donations possible will be greatly appreciated. We know that life has its own challenges for everybody and we are extremely grateful for any amount of help we can get during this time.
Thoughts and prayers for Tom as well would also be appreciated. Thank you again.
Tom has suffered with migraines for most of his life but they have become increasingly worse over the past 10 years and are now daily and completely debilitating. They have gotten so bad that he can no longer work and only leaves the house now to go to and from his doctor appointments, most of which I have to drive him to as he isnt able. The headaches are there all day every day and the pain only fluctuates from barely tolerable to excruciating, there is never a break from the pain. We have tried anything and everything possible to find something to help relieve the pain but nothing works.
Tom says all the time that he feels he is living a slow death. The constant pain has taken away any quality of life possible and there are many days that the thought of not living at all would be easier than him having to live with this pain. So for us, as frustrating as it is that our medical system will not cover the cost of surgery, not getting it done is just not an option. There is too much life left to live to watch Tom suffer like this anymore. So surgery is booked for November and we will just have to deal with the financial consequences of it as best we can. I would do and give up everything to see him healthy and happy again.
The medical system was proving to be a joke, no doctors were willing to take the time to help and it began to feel like we were in this alone. We took it upon ourselves back in 2009 to pay privately and get an MRI done at False Creek. It showed Tom has an 8mm cystic tumour on his pineal gland. The neurologist report stated that based on its size and that is was not cancerous that it was best to just leave it alone, that it 'shouldn’t' be causing the long list of sytmoms Tom suffers with daily. So we carried on looking for other answers or anything that may help. Thousands and thousands of dollars were spent on naturopath, chiro, massage, acupuncture, botox, hyperbaric chamber treatments, myofascial release treatments, trigger point injections… you name it we tried it. We even paid $30,000 at the Mayo Clinic in Arizona to see if they had any answers. And still nothing. Everyone just said they were just migraines and to just 'try to find something that makes life tolerable'. We just kept getting tossed around and spit back out by the medical system.
So after six years of that, and the pain and symptoms increasing to where a quality of life no longer exists for Tom, we started wondering if the tumour could be causing the problems. I started doing some research and was shocked to find story after story of people just like Tom, all that had suffered with the same headaches and symptoms, and had had the surgery to remove their tumours, and are now symptom free.
I got in touch with the two surgeons in the states and after sending Toms MRI results down to them, they both agreed that with the way the tumour was positioned on the pineal gland that his symptoms were most likely caused by it and they both recommend that we have it removed. We went back to our doctors up here and mentioned the consults we had and the hundreds of others that suffer the same way and have had success, but still no one up here was willing to advocate for us that it is ‘necessary’. If we wanted to have it done we were choosing to have an 'elective' surgery and it would be at our expense.
Our medical system sees the surgery as ‘elective’ because they say that because the tumour is not cancerous it ‘technically’ won’t kill you and therefore does not need to be removed. I can understand that statement if a patient had no symptoms whatsoever and just wanted it removed, then yes, surgery in that case would be elective. But when you have someone that has suffered for more than 10 years and has made every effort possible to find a solution, how can the system deny them of the one thing that could actually help. We came across 5 other Canadians that all had the same stories as Tom and had the surgery and are now back to living a normal life. They all say that the surgery ‘saved their life’ and that they would not be there today if it wasn't for the doctors that were able to do it. They all applied to the government for funding and all were denied. Even after seeing that the surgery worked and that all their symptoms were gone, they still would not offer to reimburse anyone for anything. They expect those suffering in pain, most unable to work, to somehow find $250,000 to pay for a surgery very necessary to them. I wonder how differently any of these doctors, or those that make the decisions to deny funding, would think if it was their son or daughter or husband or wife suffering with this debilitating pain.
It is so painful and frustrating to have to watch Tom suffer through this for all these years and finally have a solution just to be told its 'not necessary'. What kind of medical system do we have? I have seen people that have had breast reduction surgery paid for by the medical system because they were having back pain, or a friends father-in-law having gender reassignment surgery done, paid for by our medical system… how are those 100% elective surgeries covered and a surgery that has been proven to relieve life affecting pain is not??
The pain tom suffers with on a daily basis has tremendously affected our lives. Through this, we are hoping to not only raise some money to help with the cost of surgery and the many expenses that will incur afterwards while I am off work taking care of him, but also to raise awareness about our failing medical system. There are too many that suffer with pineal tumours that need surgery and cant get it done because they dont have the financial means and get no help from our medical system.
Thank you for taking the time to read this and to share our story. Any donations possible will be greatly appreciated. We know that life has its own challenges for everybody and we are extremely grateful for any amount of help we can get during this time.
Thoughts and prayers for Tom as well would also be appreciated. Thank you again.
Organizer
Christina Jones
Organizer
Abbotsford, BC
