My name is Tina Hanson, and I am starting this GoFundMe for my husband, Scott. I am asking for your help with medical and travel expenses to get what has now come down to the need for a life changing surgery for him. He has been diagnosed with a very rare disorder called “Cervical Dystonia”. Of the different manifestations of cervical dystonia, his is a less frequently seen type that triggers daily severe debilitating migraine headaches and dizziness. Cervical dystonia itself is not considered life threatening but his severe pain and dizziness has caused him to spend most of his life in bed for the last 5 years and has absolutely taken away all quality of his life. The Mayo Clinic is one of the few hospitals in the world that offers surgery to treat this type of dystonia. The total cost of the testing and surgery is $75,594.00. The estimated cost for travel and lodging is $3,000.00.
6½ years ago my husband woke up with what started as a painful stiff neck on his right side. Within a short time, he began getting indescribable debilitating headaches on the right side of his head along with severe dizziness. He was originally diagnosed with what doctors thought was something called “Occipital Neuralgia”. The following 5 years after this diagnosis, he went through various treatments that included numerous medications, 2 nerve ablations, numerous nerve block injections, and 8 surgeries. The last of these surgeries done in August of 2021, was a risky and very expensive surgery which was performed inside of his cervical spinal cord. This surgery, as with all of the other surgeries and treatments has had absolutely no effect on any of the symptoms. The co-pays and deductibles for all these have completely drained our life savings.
After all this, the neck pain, devastating headaches, and dizziness were exactly the same as when all this started. Desperate for some kind of relief from the pain, we searched the internet for some kind of an answer. We came across information about something called “Cervical Dystonia”. This condition causes the brain to send a signal to the muscles in the neck to tighten (spasm) without reason. Cervical dystonia is only diagnosed and treated by a neurologist that deals in movement disorders. We sought out and got an appointment with such a doctor who was willing to reassess his condition. Ten minutes into his visit with this doctor, his diagnosis was changed to cervical dystonia. The diagnosis of cervical dystonia has been further confirmed by EMG testing of the muscles.
Even though cervical dystonia is considered a rare condition, my husband has a variation that is less seldom seen in which when the neck muscles contract, they trigger the muscles in his scalp to contract. This causes indescribable migraine like headaches and severe dizziness.
There is currently no cure for cervical dystonia. The initial treatment for cervical dystonia is “Botox injections” directly into the affected muscles. This is done to try to relax the muscles. My husband has spent the last year and a half going every 3 months, receiving increasing dosages in various areas of the neck muscles that are in spasm. Botox is effective for many people but is documented for some people as, in his case, having very little effect in controlling the severe spasms. For those, there is a surgery done at the Mayo Clinic hospital in Minnesota called “selective muscle denervation”. This surgery involves going in and cutting some of the nerves that supply the affected muscles, forcing them to relax. It is there that Dr. Robert Spinner is one of a handful of surgeons in the world that perform this surgery. Over the years, he has refined and perfected this surgery providing excellent results in relieving the pain and dizziness with the type of dystonia my husband has. We have already contacted him and after reviewing my husband’s case, he has agreed to see him as a patient.
We live in Ohio and the Mayo Clinic is not in our insurance company’s network. Mayo Clinic requires full payment up front prior to any testing or procedures. To proceed with this surgery, first nerve testing must be done to determine which nerves would need to be cut. The Mayo Clinic has sent us an estimate of $17,866.00 dollars for the testing and $490.00 for the consultation with Dr Spinner. This would be the first visit. At that appointment a date for the surgery would be made. The estimated cost for the surgery is $57,238.00 dollars. To save money we plan on driving from Ohio to Minnesota and back. 2 trips would have to be made. The estimated cost for both trips out and back plus lodging would be approximately $3000.00.
Scott has always been a hard worker, loving husband, and a dedicated loving father to our 2 sons. This has completely taken his life away and has taken away his ability to spend time with our grandchildren. Over the past 6½ years, this journey has put a tremendous amount of strain on our family both emotionally and financially. Even though we had 5 years of repeated discouragements, we have always held on to hope that there was an answer. Now that with the correct diagnosis we have found it.
Words can’t even begin to express our appreciation for any and all help that is provided.
The Mayo Clinic has published online a brief story with someone with a similar type of dystonia as my husband’s, along of the success of the surgery that my husband is seeking. It can be found at: https://newsnetwork.mayoclinic.org/discussion/neurosurgery-frees-peggy-lang-from-constant-pain/