Help Chanelle with Her CRPS fight at Spero
Friends and Family,
We are writing this as plea for help raising funds for Chanelle Savage, who is a 26 year old mom of a beautiful baby boy born in March of 2021, who has been suffering from a debilitating medical condition. You would not know about her condition unless you are close to her, but she has been suffering from CRPS for almost 5 years now. She has exhausted all medical avenues and is needing to take a leap of faith. Her condition started in her wrist, traveled up her arm into her neck and is moving down her right side, in a short period of time. We are humbly asking for any support that may help Chanelle resume a full, pain free quality of life.
Complex Regional Pain Syndrome (CRPS) is a very rare condition that is associated with the imbalance and malfunction of the autonomic nervous system. CRPS generally occurs as the result of some traumatic event such as an injury or surgery. The odds of developing CRPS after an event is less than 1%. Medically speaking, CRPS is known to be one of the most painful medical conditions known to man- rating higher than both childbirth and amputation of the McGill Pain Index. It can spread to various parts of the body, causing yet more pain and disability. Many people, including Chanelle, who have CRPS describe it as feeling like they are literally being crushed and burned alive.
Chanelle was diagnosed with CRPS almost 5 years ago, 10/19/2016, after she tore a ligament in her arm pulling a patient up in bed at work. She was off work and going to physical therapy, when about 4 weeks into therapy she started feeling more pain and not responding to therapy, so she was referred to pain management in Syracuse. Her physical therapist thought she had developed CRPS and it was eventually confirmed. She was initially denied nerve blocks through workers compensation as they refuse to claim the CRPS diagnosis and 11 months later was on high doses of pain medication that was not relieving her pain. A worker’s comp hearing finally ordered workers compensation to pay for a diagnostic axillary nerve block in September of 2017. She received another nerve block in early 2018 and remained on the pain medications. The pain was not being controlled very well but she continued to deal with it the best she could with medication and in the fall of 2018, she was referred to a neurologist in Philadelphia, PA that specializes in CRPS. She went for a consultation with him December of 2018 and again CRPS was diagnosed. Workers Compensation was still refusing to claim the CRPS diagnosis, so she began receiving treatment through this doctor under her health insurance through her father. Between January of 2019 and February 2020, she received 9 Stellate Ganglion Blocks. The nerve blocks were controlling the pain for less periods of time and there was discussion of Ketamine infusions as the next step, which is not covered by most insurances either, but then she became pregnant which put her CRPS into "remission" as they call it. She had minimal symptoms while she was pregnant, life seemed much more manageable for her. Silas Nelson was born in March of 2021. She was feeling good physically and was breastfeeding. About 5 weeks into breastfeeding the CRPS returned with a vengeance. She had to stop breastfeeding because the burning was excruciating, and it was too much for her to take. She went back to pain management in Syracuse, as she no longer had health insurance to return to Pennsylvania. She had a nerve block done on June 25, 2021 and her pain did not respond to the nerve block.
Chanelle works as an LPN at a kidney dialysis clinic. She works most days through the pain, only to get home after work and unable to do much other than care for Silas. The pain gradually intensifies depending on several factors such as the amount of moving throughout the day or even the weather. Loud noises can even cause her arm to flare up. During severe flare ups she can not even wear a shirt because the mere pressure of a shirt is too painful. She has trouble eating sometimes due to the nausea which she wakes up with daily. Recently she has started to feel pain in her right foot, which means it is spreading. She said taking her shoe off and putting her foot on the cold cement helps sooth it for a minute or two. It is very hard to watch her when she is so much pain. Having to help her with daily tasks because working takes most of her energy, is very frustrating for her. She has difficulty sleeping especially when she has a flare up, because she has extreme night sweats that she hasn’t been able to control even with air conditioning, and then the cold hurts her skin. Working and caring for an infant, makes much else in life difficult. Although she does have an ok day here and there, the brain fog that comes with constant pain makes everyday life frustrating.
Right now, there is no cure for Complex Regional Pain Syndrome. After having Silas and enjoying more pain free days during pregnancy, which the neurologist told her pregnancy does seem to help CRPS in some people, she became very frustrated when she was no longer able to breastfeed due to the return of the pain. She immediately began researching everything she could for help and learned of an effective twelve-week neurologic rehabilitation program at the Spero Clinic in Fayetteville, Arkansas. People travel from all over the world to the clinic to find relief for their CRPS and other neurological disorders.
At the Spero Clinic, Dr. Katinka van der Merwe and her team use a cutting-edge neurologic recovery program to help patients who are suffering from severe chronic pain like CRPS. They focus on neurologic rehabilitation and restoring balance to the autonomic nervous system using treatment modalities such as magnetic resonance therapy, neuromuscular re-education, atrophy prevention, oxygen therapy, sound wave frequency therapy, ionic therapy and more. For patients, days are long and grueling, from 9am-6pm, 4 days a week. The Spero Clinic has achieved a startling 84% success rate of complete remission in their patients with CRPS and removing their dependence on several medications and getting them back to living their best life pain free.
As her family, we can’t describe how helpless, scary, and stressful these last 5 years have been. It is extremely difficult to see someone you love, suffer so much and you can’t help. Watching her cry in pain and sometimes struggle to hold her baby, is so difficult. CRPS has consumed her life and taken a toll on every aspect of her life. All we want is to help Chanelle have a pain free life so she can enjoy all the things a young mother should be able to enjoy with their son. She loves to camp, play softball and spend time with family and all we want is for her to be able to do these things with Silas and watch him grow into a happy, healthy young man.
The clinic is essentially the last chance of helping Chanelle put her CRPS into remission before it spreads further in her body and begin affecting vital organs or impacting her immune system. Unfortunately, health insurances companies nor Workers Compensation will cover treatment at the Spero Clinic, making this treatment difficult to obtain. We are hoping to raise $53,000 so Chanelle can undergo 12 weeks of treatment at the Spero Clinic in Fayetteville, Arkansas. This amount would cover the daily treatment for 12 weeks, housing, food and transportation during her treatment. It is not a live-in clinic, so patients must also pay their own living expenses while at the clinic. We understand that budgets maybe tight especially after the events of the last 18 months, but we are looking for any donations, however small, would be greatly appreciated and will make Chanelle being able to go to the Spero Clinic much more possible. Chanelle’s goal at the conclusion of treatment is to stop her CRPS from spreading further and put it in remission, live without being in constant, excruciating pain, be able to work and still have the energy to do normal daily life activities, sleep comfortably, be able to think with a clear mind and be able to be the best mother she can be without being stressed and anxious due to the pain.
Thank you in advance for any help you maybe able to give and please keep Chanelle and her family in your prayers.