Jono's Occipital Neuralgia surgery

Jonathan is a hard-working lighting designer in the entertainment industry based in Sydney Australia.
Not too long ago, Jono started to suffer debilitating migraines that have rendered him unable to work, placing tremendous pressure on his family. He was misdiagnosed and much of his time has been spent seeking out a true diagnosis through chronic pain.
His condition has only recently been correctly  diagnosed as Occipital Neuralgia which affects the nerves that run from the spine to the scalp. It's an inflammatory condition that causes disabling pain.
After exhausting every avenue for treatment, Jono needs to make an urgent trip to receive surgery from a specialist in the USA. This specialist is only one of a very minute amount that possess the expertise to successfully administer the correct treatment.
Jonathan has provided more information about his situation in a Facebook post which can be read below. It was that post which prompted me to create this campaign.

Please consider contributing a couple bucks or more to help get Jono the help he needs.

Thank you!

Wesley Nott
-Fund administrator

Here is Jonathan's account: 

"Hi all,

As many of you are aware, or not aware, it has not been an easy year for both my wife Rebecca and I. I have been housebound and unable to work since March 2017 due to chronic disabling migraine pain. Misdiagnosed with Hemicrania Continua in May 2017. It was only in late November 2017, we believe received a true diagnosis called Occipital Neuralgia, which has left me with a large number of symptoms that are now bilateral but most painful on the right that stay with me 24/7, yes every second of everyday, such as:
- Eye Pain (my most intolerable pain)
- Frontal Headaches 
- Occipital Pain 
- Facial Pain 
- Nausea 
- Hypersensitive to stimuli which all amplify my pain, such as sound, exercise, concentrating, stress, heat (which gives burning pins & needles), certain foods

In addition, since 2009 I have also been living with other 24/7 pain symptoms that was never properly diagnosed, which fortunately were not disabling and mostly bilateral, such as:
- Jaw Pain 
- Teeth Pain 
- Forehead Pressure (right side)
- Ear Pain / Tinnitus

So what is Occipital Neuralgia? Occipital neuralgia is a condition in which the nerves that run from the top of the spinal cord up through the scalp, called the occipital nerves, are inflamed or injured.

We spent all year trying to find a true diagnosis for this chronic disabling pain and done every test under the sun which has fortunately ruled out a more serious illness. This chronic pain has not come without it’s fair share of stress and anxiety that I’ve had to address.

I’ve had many tests including MRI/MRA Brain, CT Brain, CT Sinuses, MRI Cervical Spine, OCT Teeth/Jaw, Heart Ultrasounds, EEG, ECGs and multiple blood tests. We have visited GP’s, Neurologists, Physiotherapists, Chiropractors, Dentists, Eye Doctors, ENT Specialists, Sinus Surgeons and Neurosurgeons. I have been prescribed various treatments inclusive of multiple medications and even Botox, which have all not worked and had no effect on my symptoms. We have tried natural medications and remedies to also help with the pain and they have also not worked along with devices such as Cefaly with Arnold Kit.

It’s come to a point where we have exhausted all non-invasive options and have been given the following options from both my Pain Specialist and Neurosurgeon:

1. Peripheral Nerve Stimulator, Spinal Nerve Stimulator, Occipital Nerve Stimulator: We were quoted $50,000 AUD for these options
2. Radio Frequency Ablation: From our research and advice by doctors, this procedure is not encouraged as the success rate is not large and have shown nerves to be further damaged, which prohibits any decompression surgery down the track from being effective as RFA is only effective up to 12-18 months if successful

These options were not suitable for us and involve a 12-month waiting period as our current health insurance does not cover these procedures, but after a lot of research we have done, and joining Occipital Neuralgia Facebook support groups, we have discovered that nerve decompression surgery is one of the best options available to treat the cause of this condition rather then putting a mask over the symptoms.

We met with one of the top Neurosurgeon’s in Sydney but cannot perform the nerve decompression surgery or neither a surgery called an Occipital Neurectomy (cutting the nerves), which is procedure we would like to avoid doing if possible. He has called other top surgeons in Sydney and none of them can do the procedure. In Australia and nearby Asia we were given little hope.

Within the Occipital Neuralgia Facebook group, people from the USA and Australia recommended that we get in contact with a plastic surgeon named Dr. Ziv Peled, based in San Francisco who treats at large many patients suffering a range of chronic headache & migraine conditions including Occipital Neuralgia through decompression and excision surgery.

We have since had a video Skype call with Dr. Peled and he has confirmed my diagnosis of Occipital Neuralgia and believes he can help us. He said in the USA, there are only 7 doctors that specialise in his field and that he treats many patients from all over the USA, Europe, Asia and Australia. Dr. Peled’s patients experience positive results.

After talking with each other and after knowing we have tried and exhausted every option available to help me, Bec and I have decided to travel overseas to San Francisco in 3 weeks time to see Dr. Peled in the hope of a cure

This is a big decision for both of us and we do not take it lightly. We believe this is the right decision and the reason why we are writing this today is to ask for your help. This decision is huge and we are reaching out to anyone and everyone who knows Rebecca and I. We would really appreciate you praying for us to come through this so I can go back to work and live my life to the fullest.

To be perfectly honest with you all, we don’t know whether this surgery is going to be successful but statistically and from others who have suffered like myself this is our best shot for recovery and for a chance to live again. We are both praying that this is finally the answer we have been looking for.

Travelling to San Francisco for a week including flights, accommodation, food, doctor consultation, pre op appointment, nerve blocks, surgery, hospital costs etc. is going to cost us approximately $35,000 AUD.

We are not expecting anything, but if you feel led to give us any monetary support during this time, please private message us and we can go from there. At present, we are borrowing the money and paying it out of our own pockets, while also living on a single income. We have stopped renting and are now living with family to reduce expenses. Please know that your prayers and support will help us get through this tough season!

Thank you in advance for taking the time to read this lengthy post and for your support of Bec and I."

Donations ()

  • Fran Strasser 
    • $80 
    • 28 mos
  • Anonymous 
    • $15 
    • 28 mos
  • Peter De Navi  
    • $100 
    • 28 mos
  • Scot Martin 
    • $75 
    • 28 mos
  • Anonymous 
    • $200 
    • 28 mos
See all

Organizer

Wesley J Nott 
Organizer
Cromer, NSW
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