From Nurse To Patient- Help Kayla Fight TOS
Kayla, at 27, is a young compassionate nurse that has been unfortunately diagnosed with Thoracic Outlet Syndrome and requires surgery to decompress her nerves, veins, and arteries in her neck to prevent further loss of function in her arms and chest.
What is Neurogenic, Arterial and Venous Thoracic Outlet Syndrome (TOS)?
Neurogenic, arterial, and venous Thoracic Outlet Syndrome (TOS) is a condition whereby the upper brachial plexus (nerves), the artery, and the veins in the neck are compressed. They can be compressed by the scalene muscles, between the collarbone and first rib, and by the pectoralis minor muscle. TOS is not common, occurring in approximately 0.2% of the population. TOS can cause many life-altering symptoms such as intense nerve pain, weakness, blood clots, swelling, numbness and no temperature control in the arms, chest, neck, back and face. The quality of life for those suffering from TOS is profoundly diminished.
Kayla
Let me introduce you to my wife Kayla: Kayla, at 27, is strong, kind, genuine, caring, funny, and full of love. Kayla will always put her pain and suffering aside to lend a hand to someone in need. Kayla is the friend you want in your corner, the one who will stand up for you, lend you an ear, give you a shoulder to cry on, and take care of you in your time of need. However, being recently diagnosed with ALL three types of Thoracic Outlet Syndrome (TOS) (Venous, Arterial & Neurogenic), Kayla now needs help from many hands & a lot of support in her corner.
A little history of Kayla,
With a complex upbringing, Kayla has never had an easy life. Despite having to grow up fairly young due to uncontrollable circumstances, Kayla always remained stubborn and determined to fight trials of adversity. Kayla was fully self-supporting at age 15. While she was in high school she had a job, paid for rent, food, and eventually her car when she could afford one.
Kayla fought her way through high school and continued to fully support herself through secondary school, where she finally got to fulfill her passion of saving lives as a nurse. Kayla worked on the acute medicine floor at North Bay Regional Hospital, where she dedicated her life to saving lives. As Kayla slowly lost the ability to use her arms, due to the pain and weakness caused by TOS, Kayla still fought to help people.
Kayla wasn’t just a lifesaver at work but even in her spare time. Kayla volunteered at a vet clinic, horse rescue, wild at heart, and fostered rescue dogs before they could find their forever homes. In university Kayla tutored in accessibility services, to aid students with hearing or vision impairments. With her compassionate nature, she is the type of person who pulls over at car crashes to make sure people are safe, gets up to let the elderly sit, holds open doors, and will sit and talk to a stranger just because they look lonely. Kayla has the biggest heart and has spent her entire life trying to make the world a better place.
It’s almost a cruel joke that, despite Kayla’s hard past, she is faced with yet another challenge. TOS and its accompanying symptoms of unbearable burning nerve pain and weakness (both arms) have left Kayla in a state where she can’t function or even live her life. With her symptoms getting worse, the burning pain and tingling continues to move up from her arms to her back, chest, neck, and face leaving her unable to complete daily tasks. Such tasks range from: brushing her hair & teeth to being unable to maintain her job which makes this life-saving surgery detrimental. Kayla’s humble personality and selflessness makes asking for help a very big struggle, but with the severity of the condition and the increasing symptoms, she is left with no other choice.
Kayla plans to continue to help others through her passion for nursing with the successful completion of this surgery. Dr. Donahue will operate in February (28th) in order to prevent more permanent damage to her nerves & vessels with the chance of giving Kayla full function in her arms again. This will allow Kayla to not only impact the lives of others through nursing but also get her life back to enjoy even the small joys of life (i.e. painting, drawing, writing).
Required Surgery
Unfortunately, there are no neurogenic TOS specialists in Canada, there are only surgeons who focus on the artery and veins, but not the nerves. Through extensive research, we have identified a specialist, Dr. Dean Donahue, who operates a Thoracic Outlet Syndrome clinic at Massachusetts General Hospital in Boston. This is one of the few TOS specialty clinics in the world who focuses on all three types of TOS. Dr. Donahue provides the best chance for Kayla to relieve all of her symptoms, most importantly the nerve pain which causes the most life-altering symptoms. As this clinic is located in the United States, there is no medical coverage available, placing this surgery prohibitively out of reach financially.
Dr. Donahue proposes to perform bilateral first rib resection, pectoralis minor release, neurolysis for the brachial plexus (cleaning the nerves of scar tissue), and the removal of the medial and anterior scalene muscles (neck muscles that compress vasculature and nerves) of the LEFT side first. Then four-six months post-op, he will do the exact same process for the RIGHT side. The first surgical date is February 28, 2020, with hopes of the second surgical date being between July-September 2020, depending on recovery.
This solution is the most successful method in treating TOS and is Kayla’s only hope at regaining full function of her arms again to do what she loves best, saving lives. Kayla is courageous, and she has more strength than we can imagine. Unfortunately, the only barrier now is cost.
Cost
Our Goal is to raise $300,000 (CAN) to cover the required surgeries (2) and to ensure Kayla has funds to enable her to continue treatment at the clinic in Boston. The first surgery date is scheduled for February 28, 2020.
- Cost of Surgery and Hospital Stay $ 260,000
- Related Out of Country Costs $ 5,000
- Ongoing Care and subsequent procedures in Boston $ 35,000
You can help Kayla by donating to this campaign through:
1. E-transfer to [email redacted]
or
2. Click the 'Donate' button on this page
or
3. Contact us directly via email: [email redacted]
Sharing this Campaign:
Please take a moment of your day to share Kayla's story with as many people as possible. A quick email or post on Facebook / Twitter / etc. will make all the difference in creating a successful fundraising campaign for Kayla!
More Details
Impact of TOS on Kayla
Kayla’s constant pain has impacted all areas of her life. Pain reaches from her neck, down each arm, across the chest, and into her back. Kayla is significantly limited in her physical abilities, and performing routine daily tasks intensifies her already high level of pain. She had to quit her job at the hospital to pick up less physically intense types of work as her pain intensified. Now Kayla’s pain, and weakness is so intense that she is unable to work. She had to give up all of her hobbies of volunteering at various animal clinics, painting, drawing, and writing as she slowly lost the function of her arms. Even everyday tasks like brushing hair, preparing food, and even putting on clothes has become almost impossible due to the pain.
History of Kayla’s TOS
Kayla first noticed her TOS symptoms when she was working at the hospital. She was performing an injection and her hands started to shake and tingle. At first, she thought nothing of it as it might just be lack of sleep or food but as time went on she discovered it was in fact something much worse.
As months went on, the symptoms of shaking and tingling intensified and became burning and stabbing nerve pain that radiated down her arms. Frightened, she looked into the source of the pain but was told it was all in her head and she should push through. As doctors came up with no solutions, Kayla was forced to try various conservative remedies just to allow her to work (e.g. chiropractic care, PT, massage, etc.). Kayla’s conservative remedies soon couldn’t keep up with her pain and she was forced to make the hardest decision of her life, find a job that was less painful. Kayla is the toughest and most caring individual I have ever met, leaving the hospital was the hardest decision of her life but she knew she needed to ease up on her body to allow her to find a cure to her pain.
Of course, Kayla could never give up her passion of helping people, that’s the thing about Kayla, it doesn’t matter how much pain she is in she will always do what it takes to help someone else. Unable to work full time at the hospital Kayla decided to take a job at the Methadone Clinic and work for VON (community nursing) to help care for individuals in need of the most help. Unfortunately, the pain continued to increase with frequency and intensity and new symptoms started to arise.
Kayla, hopeless and trapped in her chronic pain, realized that she couldn’t keep up with the demands of her new jobs. Kayla still had a strong drive to help people but she realized she may have to do it in a different way. Kayla decided to move to Sudbury to go to the university of Laurentian to study psychology with a desire to become a psychiatric nurse. Even during her studies Kayla couldn’t keep away from saving lives and making a difference in her Community. During her studies, she took up part-time work with flexible hours to work around her pain, CBI Home Health (community nursing) and Canadian Blood Services. Unfortunately, intensifying pain and weakness prevented Kayla from typing and writing. Barely able to concentrate from the pain and now unable to write or type, Kayla was forced to drop out and take a 3 year degree.
Kayla moved to London where she tried to work in part-time community nursing again but found the pain too terrible. She then decided to work as a nurse at the Canadian Mental Health Association where she aided the homeless community. However, the burning pain and tingling now moved from her chest, back, and arms up in her face. Terrified that she was making her condition worse she realized that she had to do the thing she dreaded most, take a leave of absence from work.
Now Kayla desperately waits for surgery at home in constant pain and suffering. Kayla lives in constant anxiety that she is causing irreversible damage, terrified that every action makes her condition worse. That every stroke with a toothbrush is damaging her nerves, arteries, and veins just a little more. She stays strong and fights the pain every single day but every day gets a little bit harder, every day that hope of one day getting better seems to diminished just that little bit more.
Dr. Donahue is ready to operate in February, preventing even more detrimental damage to the nerves and vascular system giving Kayla the best chance of regaining the full function of her arms again. The only thing holding Kayla back from getting her arms and going back saving hundreds of lives a year is cost. Please find it in your heart to help out a woman who dedicated her life to saving others. This donation not only helps Kayla but the thousands of people that she will one day save with her healing hands. Help get Kayla’s arms back.
A Wife’s Perspective:
Kayla is my soul mate and the love of my life. She is the strongest, smartest, funniest, most loving and caring human I have ever met in my entire life. She has been through trials that no one can even imagine with a smile on her face and a hopeful perspective on life. It is heartbreaking to watch such a kind-hearted, strong woman who dedicated her whole life to helping others suffer every day in such pain. It is cruel to watch someone who dedicated her life to working in the Canadian medical system be failed by it.
Now I slowly watch the strongest woman I know slip away. I watch the love of my life suffer while it feels like she is being electrocuted, or has her arms, chest, back, and face being burned off. I watch her tremble and grimace in pain every single day, all day long. I watch this, unable to do anything. Nothing eases this pain. No heat or ice packs, no creams, no pills, no massages, nothing touches this pain. Kayla gets to sit in it, knowing there is an answer, knowing that it can all end but we can’t afford it.
I am sure that many of you have a significant other, one that you love and cherish just as much as I do for Kayla. Now imagine seeing that person suffer every day. Imagine being powerless to stop any of it. Imagine having an answer but being unable to afford it.
Please, help me save my wife. I want to give her everything, I want to start my life with her, I want to build a family with her, I want to live the end of my days with her. I need your help, please help me get my wife’s arms back. Please help me end my wife’s suffering and give her back her life.
Here Are A Few photo's Of My Beautiful Wife Before She Became Sick:
Here is Kayla’s Diagnostic Journey of TOS: It has been a long and hard fight
Attempts at Conservative Care:
· Chiropractic care
· Physiotherapy
· Massage Therapy
· Reiki
· Intramuscular stimulation
· Active release therapy
· Acupuncture
· Different types of pain medication (nothing touched it)
First family doctor
o Initially told her it was all in her head and she had to work through the pain in order to get better and re-strengthen the muscles (ran and lifted until she was in tears)
o She fought him for MRI’s, blood tests, EMGs, Nerve conduction tests, and X-Rays of her upper and lower body, when he finally gave in he said they were all clear and confirmed his initial diagnosis that it was all in her head.
o When she pleaded with him to keep looking because it was not in her head, he said he refused to order more tests because it would look bad on his license. Leaving her with no hope to look further as every specialist appointment and test must be ordered by a family doctor.
o Later when we switched family doctors and received the reports we realized that the MRI’s suggested a follow up with a neurologist as it may show signs of MS and the EMG specialist said it was not in her head and that there were signs of tarsal tunnel syndrome and other issues in her legs.
United States:
o With nowhere to go, we started our journey with a New York spinal surgeon, as the MRI’s show bulging discs along her spine. The surgeon said there was no central nerve compression that was causing Kayla’s intense pain but to look into MS as it might be a cause of her symptoms. He kindly recommended an MS specialist and helped us get an appointment with the clinic the next day.
o The MS Specialist looked at the MRI scans and performed her physical assessment and confirmed it was not MS but still asked us to get another brain MRI in a few months just to confirm her diagnosis (we did with our new family doctor and it came back clear)
o The MS specialist, sympathetic to our journey, continued to help us rule out other options such as B vitamin imbalances, Lyme disease, and various autoimmune disorders. The blood tests came back clear.
o Thinking the nerve pain and weakness must be a peripheral nerve compression instead of nerve degeneration or central nerve compression, we decided to look into a nerve MRI.
o Thanks to a referral from the MS specialist, who continued to help us on our journey, we were able to continue our journey all the way to San Francisco to get our nerve MRI. It was this test that finally pointed us to our answer, TOS.
New Family Doctor:
o After our first family doctor confirmed that he was not going to do more tests, we realized we had to switch to get a new perspective on our case.
o Luckily our new family doctor started off well and ordered the follow-up MRI for the MS specialist and a few more blood tests to rule out more autoimmune diseases.
o She sent us to get an EMG and Nerve conduction test at a hand and upper limb clinic to help us confirm the diagnosis of TOS.
o She helped us with our genetic testing application. The application was denied as they said they wanted us to see a rheumatologist, even though all of our markers came back clear. Unfortunately, this caused us issues to convince our new family doctor to refer us to other specialists other than the hand and upper limb and rheumatology. In Canada, if you can’t convince your family doctor to send the referral, there is only one place to go…emergency.
Emergency:
o Don’t get me wrong, we had been to multiple ER visits before this moment when new symptoms were arising, such as chest pain, weakness in arms, intense burning pain down the arms, and tingling crawling up the neck and into the face. All of the emergency doctors claimed none of this was considered an emergency and to quote one of the doctors “…was a waste of emergency resources”.
o X- Rays of cervical ribs to see if that was causing the compression on the nerves
o Begged the doctor to send our referral to one of two surgeons that deal with vascular TOS. Luckily, he took pity on our case and sent our documents to the vascular surgeon.
Hand and Upper Limb Clinic:
o Completed the nerve conduction tests and EMGs, came back clear (which is a good thing as it means the nerves are not fully damaged yet and can still be saved with quick action).
o Performed a nerve block in the chest and neck to freeze the brachial plexus nerve. Luckily it took the pain away for the two hours it stayed in the system. A positive sign for TOS as it shows the brachial plexus nerve is causing the pain
Vascular Surgeon:
o Finally, we got to see someone who specializes in vascular TOS. After doing his vascular ultrasound and CTA he confirmed that the bilateral compression between Kayla’s first rib and collar bone was so bad that it not only compressed the nerve but also the artery and the vein running down to both of her arms. This was the first doctor to officially confirm that Kayla suffers from all three types of TOS.
o For the first time in a long time we were ecstatic, a doctor finally gave us an answer and didn’t say it was all in Kayla’s head.
o Unfortunately, this is where our excitement ended as this surgeon made it very clear that he is a vascular surgeon. He didn’t believe in neurogenic TOS thus he doesn’t do pectoralis minor releases as he was only focusing on the artery and the vein compression.
o Now we panicked, the burning nerve pain that sends lightning bolts down Kayla’s arms and makes them so weak that she can barely use them is the main reason we need the surgery.
o This is where we realized that we need to find a surgeon that believes in neurogenic as well as vascular TOS.
o Unfortunately, through extensive research we found that there are NO NTOS specialists in Canada and no one who would agree to do the pectoralis minor release.
o With no one in Canada to help, there was only one place to look, the United States.
Dr. Dean Donahue; United States Neurogenic, Arterial, and Venous TOS specialist
o This is where we found Dr. Dean Donahue, who operates a Thoracic Outlet Syndrome clinic at Massachusetts General Hospital in Boston. This is one of the few TOS specialty clinics in the world.
o This surgeon does it all, he will remove the first rib, the medial and arterial scalene muscles, he will grind/remove the cervical ribs if they are too big, he will perform the pectoralis minor release, and he focuses on the neurolysis to get the best results to take away the nerve pain.
o This surgeon is Kayla’s best chance at recovering because the fewest amounts of surgeries cause the least amount of trauma to the nerves. This surgeon is Kayla’s dream come true.
o Here we are, finally an answer to the years of unexplained pain in Kayla’s arms. Finally an answer to what has made it impossible for Kayla to work, steal all of her hobbies, and made it impossible to perform any tasks with her arms. Finally, a surgeon to fix Kayla’s pain and get her back to doing what she loves and living her life.
o It seems to be a cruel trick that the only thing holding Kayla back is money.
o This is where we need people like you. People that can spare even a few dollars to help a loving, caring, funny, kind, hard-working woman get back to doing what she loves most, saving lives. Kayla longs for the day that she can go back to work at the hospital, where she gets the opportunity to impact thousands of lives a year and heal them on their difficult journey through the medical system.
Thank you for taking the time to read my wife's story. We appreciate any help you are willing to give us. 