I need your help to get to Las Vegas, USA, August 6th, 2018 for surgery to remove my left piriformis muscle. It has caused me severe pain for five and a half years with no treatments helping it. Please read my story below and watch the video above for details, including who I've seen, what I've tried, about piriformis syndrome, the neglect from long waiting lists, and mistreatment in the system. There are rewards available if you donate, such as my memoir FOREVER MARKED: A Dermatillomania Diary and documentary Scars of Shame! Share on Twitter, Facebook, etc. to help raise awareness. If you have questions, you can e-mail me at [email redacted]. Thank you!
07/11/18: Plane tickets and hotel are booked! 3 weeks to go!
06/16/18: A bottle drive has been started in Dartmouth, NS! A huge thank you to Ashley Gibbs who created Destination Pain Relief to help with the campaign! Please join if you're local!
I've had a mental health disorder since childhood called dermatillomania, which isn't well-known to many professionals. To this day, no province east of Ontario is specifically trained to treat this or other Body-Focused Repetitive Behaviors. Living in Nova Scotia (NS), Canada, I had accepted there was no local treatment and that my skin would be filled with open sores for the rest of my life.
(Left-sided piriformis syndrome makes it hard to turn to my left, sit, stand, or lie down. Dec. 2014)
Advocacy for dermatillomania became my life's mission, which eventually led to me getting treatment in the USA through CBS' show The Doctors in 2015 . Since October of 2012, I have had a chronic disability that there is no help available in Canada for- piriformis syndrome. If it isn't diagnosed/ treated in the first year through conventional methods, the piriformis muscle can atrophy and become useless.
While I've always had undiagnosed issues with my back and joints, one day I noticed an increase of pain that never resolved itself in my left buttock. In my first year, my GP gave me a sheet with back exercises, ineffective free-hand cortisone injections in my left bum cheek, and a variety of anti-flammatories. After finding another GP, she put in referrals for the Halifax pain clinic and an orthopedic surgeon; the appointments were coincidentally booked for the same month... 2 years later. During that time, I tried various approaches but nothing touched the deep ache in my left cheek. One massage therapist yanked my left leg hard during an appointment, which escalated my pain even more.
(TLC Center for BFRBs conference, one month after the leg pull. New Jersey, USA, April 2013.)
My orthopedic surgeon agreed to give me nerve blocks but sent me for an incomplete MRI and the pain clinic couldn't offer anything at the time because of how the orthopedic's care came first. My last block, in the SI joint, S1, and L5, was in July and he had abandoned me in October of 2017. It's takes another 2-3 years to see someone, which made me feel hopeless, but was thankful that my file at the pain clinic was still open so they could take over. I don't know what would have happened if I had to wait again.
(The ache never goes away. Some people experience pain down their thigh; I'm lucky I do not)
The pains worsened after every physiotherapist I saw. My first wait time in the public sector was 8 months, which I had to stop because of unrelated fibroid pains that took 1.5 years to address. The second time, I had to wait 11 months and was only given a handful of appointments. It was with these exercises in April of 2016 that I noticed the heaviness from lugging my hip around started turning into a consistent pain.
After experiencing a medical trauma two years ago and being put on a nerve pill for my pain that made me sick, I began having severe panic attacks and tried to revisit mental health services but was told by 2 counselors that I already had the knowledge base to help myself, that they couldn't help further because I already knew CBT, ACT, and mindfulness; being embarrassed and intimidated by the leader of an anxiety group caused me to never return. I saw a third therapist through the pain clinic who tried to help me with "pain acceptance" but I have been unable to find peace in the agony I'm in 24/ 7, how my symptoms are poorly patched up, and that there's no hope of improving unless I get surgery.
(It hurts too much to sit in wooden chairs for meals. 2014)
I should have been given the piriformis injection to confirm this diagnosis, but didn't until a week before this campaign launched; it only lasted 6 days. The effectiveness of past blocks have been between 10% and 60%- if I was lucky to get an appointment every 4 months instead of 6 to tie me over. No orthopedic surgeon in Nova Scotia will do this surgery because they don't believe in the piriformis muscle being capable of causing pain, although they often remove it with hip replacements. They don't look at nerves in their practice; they focus on structural/ bone issues. Neurosurgeons mostly operate on the brain and plastic surgeons with a specialty in peripheral nerves don't perform this surgery either. I tried to find a doctor in Canada who would perform this surgery, but came up empty.
Dr. Tim Tollestrup of Nevada, USA, is a peripheral nerve surgeon who offers the surgery. While my husband and I can spare some of the cost, we cannot secure it all. I get exposed to radiation and pumped with steroids every few months through the painful procedure of getting needles in my backside. Knowing that piriformis removal surgery only takes 2 hours, the time NS wasted on my nerve blocks could have gone toward this surgery, allotting my time to other patients who don't have as simple of a solution for their pain. We need at least $5,000 CDN by July 23rd to make this happen- the rest will be taken care of through a loan and savings. If not, the money will go toward the purchase of a mobility device (scooter/ wheelchair) in order to accommodate to a life of chronic pain.
(Applying pressure to my left foot increases pain. Lifting my left leg while sitting slightly alleviates the pressure a bit.)
There isn't enough evidence for MSI, my provincial medicare program, that this surgery works; it has not passed Phase 3 of clinical trials for me to qualify. This leaves me with somehow having to pay for everything out of pocket. This also means that the Department of Health and Wellness won't reimburse travel expenses. I've been unemployed this whole time and don't qualify for disability benefits, so I live off my husband's income.
(EDIT 06/15/18: I was informed of additional costs for anaesthesia and surgery center, which increases expenses)
I have reached out to the following groups/ people but no one has been able to give me resolution regarding the lack of care and abuses I've went through in the system:
My MLA & his secretary
NS Health Authority Patient Relations
Office of the Ombudsmen
Department of Health and Wellness
I found the strength in myself to accept my dermatillomania because the shame I bestowed on myself was what affected my mental health the most. However, even with psychological therapy for chronic pain, I must be too stubborn to just "accept" this. In the last few months my right hip has given me issues that resulted in me using crutches, having to apply pressure to the left side because it feels like an elastic band is tightening around my hip with an intense pressure. I refuse to sit around for another year or more and watch my body continue to deteriorate. I'm scared I will soon have to use a wheelchair because the compensation on my right side may become permanent, if it isn't already.
In getting this surgery (graphic video), I can have a chance of a near-full recovery. Without it, I have no hope.
I was lucky to have the chance to go on The Doctors for my compulsive skin picking and can only hope that another miracle will happen that will give my husband and I enough money to travel to Nevada for this surgery.
Please choose a reward by typing in the number in you want to donate. To claim the reward[s], you must message me with your requests. The following rewards are in Canadian dollars and can be combined:
1. $13 - kindle copy of my memoir, FOREVER MARKED: A Dermatillomania Diary
2. $35 - signed copy of the Scars of Shame documentary
3. $40 - signed copy of my memoir
4. $65 - Half an hour Skype session with me to talk about anything from Dermatillomania recovery, BFRB advocacy, chronic pain, to kittens!
* all rewards over $35 includes 4x6 thank you photo
* all donations exceeding $150 will include an additional fiddle toy or fidget cube upon request
Shipments and Skype appointments will be made starting Sept. 6th, 2018. You can go to my ebay or Amazon to purchase Scars of Shame or my memoir. FOREVER MARKED: A Dermatillomania Diary is also available through kindle.
If you cannot donate, please SHARE to spread the real truth about the disaster of Canada's healthcare system. This will be my second time using the USA for health services that were not made available to me in my country.
If I was American, I would have an insurance plan through my husband's work that covers at least a portion of the surgery. I would have had access to get my skin picking dealt with years ago instead of having it escalate to what it did. If you've faced outrageous wait times or have suffered as a result of the Canadian Healthcare system, please leave a comment on this gofundme page.
While most services here in Canada are free, you also get what you pay for.