Help! Trigeminal Neuralgia: The Suicide Disease
Donation protected
I am an RN (registered nurse) and mother of 2 young children. My Husband Alec has been suffering from atypical Trigeminal Neuralgia since August of 2014 after a BOTCHED wisdom tooth extraction.
Trigeminal Neuralgia (TN) is often described as "the suicide disease" because it causes INTENSE nerve pain virtually all day long which is further punctuated by additional INTENSE intermittent pains. My Husband suffers from burning and electrocution pains as well as intense stabbing pains all directed to the left side of his face.
I cannot stress how much this affects him enough: me and everyone around him have watched him seize up and begin crying from how much pain he is in all the time and this happens almost everyday. As strong as he has tried to be, there are limits to what the human body can endure while keeping a straight face. He sleeps very little and we need help badly but medical science continues to fail us.
Here is additional information from a website hosted by Pain Specialists in Arizona:
https://arizonapain.com/trigeminal-neuralgia-suicide-disease/
In fact, tomorrow, October 7th, is Trigeminal Neuralgia awareness day. If nothing else, read up about it. God forbid if anyone you know is suffering from it, reach out to them in whatever way feels comfortable or share information about TN on social media.
If you google the subject you can read story after story of medical science failing to treat people resulting in lower life expectancy for sufferers of TN due to occurrence of suicide at an inordinately high rate.
This is even worse for my husband as his TN is ATYPICAL meaning that even some of the moderately successful avenues for treating it are unlikely to help him and are not recommended by his doctors (for instance Microvascular Decompression surgery).
It has been a very long five plus years since the pain began after the wisdom tooth surgery. My husband Alec (also an RN but no longer able to practice due to the number of medications he is prescribed to put a small dent in the amount of pain he is always in) and I have sought every possible avenue, speaking with multiple pain specialists, neurosurgeons, therapists, social workers and disability specialists. Legal aid was also of no use in case you are wondering- apparently suing for medical malpractice even when a wisdom tooth extraction caused this much fallout is not possible.
He has been prescribed a slew of medications which caused liver damage, he has panic attacks, anxiety, depression, suicidal ideations, he has been "Baker Acted (72 hour hold), insomnia and of course intense pain all day long. CBD and medical marijuana are similarly unsuccessful in treating the pain (in any meaningful, "breakthrough" way).
Some of the breakthroughs we got our hopes up for but failed him include nerve blocks, injections into his skull, stem cell therapy and the removal of TWO neuromas (nerve tumors).
So much has happened in these last five years when it comes to his medical history, the battles and the obstacles, that would take up a lot of space but most importantly we have been blessed with two wonderful children. We want him to be around for a long time so he can be a father to them and not succumb to this thing.
This gofundme is to explore a couple of avenues for pain treatment we have not tried yet. We want to try them before resorting to additional experimental major surgery. The reason this gofundme is created is because these treatments are not covered by insurance but if they work it could be the breakthrough we were looking for. Five years in, literally anything is worth trying.
The campaign goal would cover approximately one or two sessions of each treatment but we will probably know by then whether they do anything at all.
The treatments are Acupuncture and NUCCA therapy. They are worth a shot before trying to install machinery meant to treat other types of pain or leaving out-of-state/country for other expensive experimental surgery.
We are also now stretching into raising money for something like a spinal stimulator but they are meant for back pain so it is experimental but has been recommmended by doctors as an option.
Please please please! Anything you can contribute would mean so much. Please share this!!!
UPDATE: THANK YOU SO MUCH! We've been able to extend the goal to cover additional sessions of the therapy if they work and are exploring other therapy options as well. We are also saving money for what may end of being the next breakthrough shot but it involves major surgery so we are putting the less invasive treatments first to see if they work.
Please continue to share this if you haven't already. All the shares on Facebook mean so much to us really shows so much support. Thank you!!
Trigeminal Neuralgia (TN) is often described as "the suicide disease" because it causes INTENSE nerve pain virtually all day long which is further punctuated by additional INTENSE intermittent pains. My Husband suffers from burning and electrocution pains as well as intense stabbing pains all directed to the left side of his face.
I cannot stress how much this affects him enough: me and everyone around him have watched him seize up and begin crying from how much pain he is in all the time and this happens almost everyday. As strong as he has tried to be, there are limits to what the human body can endure while keeping a straight face. He sleeps very little and we need help badly but medical science continues to fail us.
Here is additional information from a website hosted by Pain Specialists in Arizona:
https://arizonapain.com/trigeminal-neuralgia-suicide-disease/
In fact, tomorrow, October 7th, is Trigeminal Neuralgia awareness day. If nothing else, read up about it. God forbid if anyone you know is suffering from it, reach out to them in whatever way feels comfortable or share information about TN on social media.
If you google the subject you can read story after story of medical science failing to treat people resulting in lower life expectancy for sufferers of TN due to occurrence of suicide at an inordinately high rate.
This is even worse for my husband as his TN is ATYPICAL meaning that even some of the moderately successful avenues for treating it are unlikely to help him and are not recommended by his doctors (for instance Microvascular Decompression surgery).
It has been a very long five plus years since the pain began after the wisdom tooth surgery. My husband Alec (also an RN but no longer able to practice due to the number of medications he is prescribed to put a small dent in the amount of pain he is always in) and I have sought every possible avenue, speaking with multiple pain specialists, neurosurgeons, therapists, social workers and disability specialists. Legal aid was also of no use in case you are wondering- apparently suing for medical malpractice even when a wisdom tooth extraction caused this much fallout is not possible.
He has been prescribed a slew of medications which caused liver damage, he has panic attacks, anxiety, depression, suicidal ideations, he has been "Baker Acted (72 hour hold), insomnia and of course intense pain all day long. CBD and medical marijuana are similarly unsuccessful in treating the pain (in any meaningful, "breakthrough" way).
Some of the breakthroughs we got our hopes up for but failed him include nerve blocks, injections into his skull, stem cell therapy and the removal of TWO neuromas (nerve tumors).
So much has happened in these last five years when it comes to his medical history, the battles and the obstacles, that would take up a lot of space but most importantly we have been blessed with two wonderful children. We want him to be around for a long time so he can be a father to them and not succumb to this thing.
This gofundme is to explore a couple of avenues for pain treatment we have not tried yet. We want to try them before resorting to additional experimental major surgery. The reason this gofundme is created is because these treatments are not covered by insurance but if they work it could be the breakthrough we were looking for. Five years in, literally anything is worth trying.
The campaign goal would cover approximately one or two sessions of each treatment but we will probably know by then whether they do anything at all.
The treatments are Acupuncture and NUCCA therapy. They are worth a shot before trying to install machinery meant to treat other types of pain or leaving out-of-state/country for other expensive experimental surgery.
We are also now stretching into raising money for something like a spinal stimulator but they are meant for back pain so it is experimental but has been recommmended by doctors as an option.
Please please please! Anything you can contribute would mean so much. Please share this!!!
UPDATE: THANK YOU SO MUCH! We've been able to extend the goal to cover additional sessions of the therapy if they work and are exploring other therapy options as well. We are also saving money for what may end of being the next breakthrough shot but it involves major surgery so we are putting the less invasive treatments first to see if they work.
Please continue to share this if you haven't already. All the shares on Facebook mean so much to us really shows so much support. Thank you!!
Organizer
Angelica Fernandez
Organizer
Hialeah, FL