CRPS Medical Dilema

My name is Mandy Mulvihill and I’m a 37-year-old mom of 5. Up until last October, I was self-employed working up to 50 hours a week. However, in late October of 2018, I started to have severe symptoms throughout my entire body and spent the next several months with doctors trying to figure out what was wrong with me. After going through every medical test and imaging possible, the doctors were still not sure what was causing me to have severe pain and changes throughout my body. After months of research, my husband Steve and I were convinced I had a rare neurological disease called Complex Regional Pain Syndrome (CRPS). We asked our family doctor for a referral to a CRPS specialist in Vaughan, Ontario, and in May of 2019, we had our first appointment there.

Due to the lack of CRPS expertise in Ottawa, we have continued to go to the specialist in Vaughan, who is now treating me for CRPS and dystonia. Part of the treatment includes Botox injections in my lower right leg and foot, physiotherapy and psychology services. We now need to travel to Vaughan every ten weeks for treatment, as well as attend psychology appointments weekly. I still require physiotherapy, 2-3 times per week, in order to teach my brain to rewire itself to recover from this illness. I am told that the Botox treatments and physiotherapy will be required for the next two years in order for me to get better.

The Botox injections are not covered by our private insurance plan, and we have a lot of out-of-pocket expenses with travel and lodging in Vaughan. We are also not able to afford physiotherapy and aqua-therapy while maintaining our house for the kids; These services are only covered to a maximum of $500 per year with our private insurance plan. Aqua-therapy has helped me a lot in the past but I don't have access to a hot-tub to continue. Heat has been the one constant that I can rely on to help me through the painful spasms, and access to aqua-therapy would help me tremendously. My condition requires a multi-faceted approach with many therapies and injections, which is very tough for me since there are very limited resources available in my city and all the required services are out-of-pocket. At this time we are unable to meet the financial demands of my treatments and I worry about the strains my health is placing on my family.

My medical condition causes poor muscle contractions and spasms in my toes, foot, and calf, resulting in my toes curling under my foot (dystonia) and muscle atrophy from not using my leg properly. For the past 10 months, I was forced to wear an air cast so my toes would not go into dystonia. Since my September Botox treatment, I have been able to remove the air cast and I’m finally able to wear select shoes, but I have a long way to go and a growing list of changing needs. 

Any help you are able to offer is greatly appreciated. We have set up a Go Fund Me account with a goal of $50,000. To date, we have received $784.33.

Ongoing Expenses:

Transit to Vaughan, ON (every 10 weeks): $242.10

Botox(every 10 weeks): $275

Lidocaine(every 10 weeks): $60

Lodging in Vaughan, ON (every 10 weeks): $230 per night average, plus meals 

Physiotherapy: $200 per session (2-3 times per week), approx. $20,000 per year

Acqua-therapy: $350 per week, approx: $17,500 total

Total (for 2 years): approx $65,000

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Organizer

Mandy Mulvihill 
Organizer
Carleton Place, ON
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