Suicide disease - help for Ian's CRPS treatment

Have you ever burnt yourself? That sharp, burning, consistent pain that immediately sears as a result? Even the smallest burn creates an autonomic nervous system response - and it's painful. Now, imagine that being the entire left side of your body, from your forehead to the tip of your big toe, divided right down the middle of your body. An intense, sharp, burning, consistent pain that creates muscle spasms, sweats, teeth grinding and a feeling of burning alive.

My husband's name is Ian. This has been his normal for the last almost three years. He was professionally diagnosed with a neurological dysfunction called ‘Complex Regional Pain Syndrome’ (CRPS) 3 years ago following a severe crush injury that occurred while performing his welding duties at work. A 500lb pipe fell 4ft and crushed his left foot. As a result, Ian proceeded through 14 days of hospitalization, three major reconstructive surgeries, a bone graft (taken from his hip/pelvis), and began an intensive rehabilitation process. While navigating through rehabilitation, Ian (after being assessed by numerous specialists, surgeons, and doctors in Alberta) was additionally diagnosed with CRPS. CRPS has dramatically impacted his quality of life, with the disease spreading from his left foot to affecting his entire left side of his body.

CRPS is a condition associated with the imbalance and malfunction of the autonomic nervous system. Medically speaking, it is the most painful disease known to man- rating higher than both childbirth and amputation on the McGill Pain Index. Many people, including Ian, who have CRPS, describe it as feeling like they are literally being burned alive.

What is CRPS?

Ian is in excruciating pain. His nerve pain is so overwhelming at times throughout the day that his body responds in spasms, swelling, bruising, discolouration of skin, and temperature differences within his body. He relies on the support of a cane to walk and can only walk (or drive) for short distances to avoid severe flare up of his symptoms.

Ian lives to be a great Father to Aria (9) and Caleb (6); he used to love being the active one going for walks, adventures, skating, playing soccer, jumping on the trampoline, playing hide and seek, tag, and rough-housing. His children are his life. Our children have grown to accept and understand that 'daddy can't do that' (because of his foot) and have become accustomed to spacial awareness to avoid stepping or accidentally touching Ian on his left side (which results in severe nerve pain). It has been a traumatic experience in our home, with a slow decline in his abilities that has consequently led to great changes for our family to overcome. Ian is suffering; his sparkle..dull. Although he always tries to view life optimistically, finds joy in simple things, and can laugh full-heartedly at the silliest things - we are bystanders watching him slowly deplete and lose himself. I am losing the love of my life, my best friend, my rock.

After seeing more than 30 referred specialists, doctors, and medical professionals (neurologists, physical therapists, occupational therapists, pain specialists, psychologist, etc.) and having been told the same thing over and over or being told all available resources have been exhausted and he will not get better, or that they've done everything they can, or that he will never return to work, or never return to normal function (or even more than 20% function), and constantly being prescribed morphine, narcotics, ketamine, and numerous other incredibly addictive pain killers to numb the pain (which he has only recently succumbed to taking due to his level of pain increase), after receiving painful injections of the same pain killers with no long-term (or even short term!) relief..when we have run out of approaches to try in the medical and holistic world...when we were losing all of our hope....desperate...we found hope. Through much research, we heard of the recently first recognized treatment in the world that is successful in putting CRPS in remission long-term! The treatment is in the form of neridronate treatments in Italy. The link below shares all of the information about this treatment:

CRPS Treatment

We had our first conference call with ‘Medical Tourism Italy’ and were informed that although Ian has had CRPS for almost 4 years, others who have received the treatment (over 3000 successful patients) who have suffered from CRPS for 5-8 years found after treatment their CRPS symptoms were put into 80-82% remission!!!!! That is substantially incredible in regards to the level of quality of life and ability that could be re-established!!

This is by far the most outstanding treatment option we have discovered. This treatment is only available in Italy, it is performed over 4 sessions within an 14 day period (along with an multi-disciplinary team approach of healing) and can provide extensive relief of symptoms permanently by placing the body into remission. After trying all of the available resources in Canada, aside from having a spinal cord stimulator surgically placed in Ian’s spine (which is effective in less than 50% of patients, and not long-term, and is $60k) this brings hope. Real. Hope.

As a family, we will do everything in our power to raise the necessary funds ourselves. Ian has started selling his most prized original vintage vinyl records, collectables, and sports cards. Items of value in our home are being assessed, and we are creatively finding ways to fundraise - our 9 year old is even selling rainbow loom bracelets in an attempt to raise funds. However, the cost of this program is a large sum ranging from $21,000- $27,000 EUROS. This does not include travel, food, or work compensation for Jill as she is required to accompany Ian.

After conversing with the clinic, we can schedule Ian to attend MTI for treatment as early as February; we desperately need help to get him there.

Our hope is that if we can raise enough money to have Ian scheduled for treatment we can share his journey on Instagram so you can follow along, so we can reach others, so we can help others, bring awareness, and hopefully achieve more interest in medical research and finding a

cure for this incurable disease.

We are seeking help, as unfortunately with the inflation of the economy in Canada, Ian’s disability income, and the capacity of costs directly associated with this treatment, we are not capable of achieving this opportunity alone.

In the hope of putting his excruciating pain and the debilitating effects of this disease in long term (and potentially permanent) remission, we are put in the position to ask for help to get Ian there.

Any amount is of help, and greatly appreciated during these times.

If you would like more information about CRPS, or have additional questions, please contact me. I am sorry that we have come to these circumstances, but Ian’s situation having greatly declined in just the last 3 few years, time is essential in acting as CRPS can spread and affect the entire central nervous system, parasympathetic system, organs, and bodily functions. It has already spread to his entire left side. It can cause organ failure, extreme physical discomfort and disability, and even death.

There is no cure, but we have hope.

Thank you, much love,

The Spisak's.