Janelle's Brain Surgery
Donation protected
In November 2019 my wife Janelle noticed the hearing in her left ear wasn’t quite right. She went for a hearing test and was referred immediately to an Otolaryngologist for treatment on what they thought was just nerve damage. After steroid treatment via IV and then a surgical injection to the inner ear, she was sent home to recover and given an MRI referral as standard procedure. That is when everything changed...
"Ryan, they found something." was what I heard on the phone as she left the MRI imaging centre.
Her scan revealed a 2.1cm Acoustic Neuroma, a rare benign brain tumour (1 in 100,000) that grows on the cranial nerve and pushes up against the brain stem.
Consultations with two of the most experienced surgeons in Australia revealed that treatment for this size tumour requires very complicated surgery. The risks involved in having the wrong surgeon perform the surgery include:
1. Permanent facial paralysis
2. Hearing loss (single sided deafness)
3. Daily headaches
4. Permanent balance issues
5. Tinnitus
Needless to say we began to research surgeons with the experience and expertise to perform the surgery. Studies show that tumour size and the surgeon’s experience are the most significant factors influencing facial nerve function and hearing outcome after removal. Janelle is also in a situation where the tumour hasn’t reached the end of the auditory canal and has grown further away from the ear so she still has good hearing and speech recognition in that ear.
Janelle is a wife and mother to my 4 girls and the thought of living for the rest of her life with permanent facial paralysis, single sided deafness, or any of the other possible effects was something we wanted to do everything to avoid.
Unfortunately, the Australian experts advised in her case and tumour placement that surgery in Australia would guarantee complete hearing loss due to the surgical approach and experience of the surgeons. There would also be a significant risk of facial paralysis and the surgeons would need to sacrifice the hearing to do everything they could to preserve the facial nerve.
Throughout our research we read about world renowned Dr. Rick Friedman (Otolaryngologist) and Dr. Marc Schwartz (Neurosurgeon) who opened an Acoustic Neuroma Centre in San Diego, California. Together they have operated on over 3000 Acoustic Neuromas (the most experienced of all the active surgeons in the USA). Patients fly in from around the USA and world to reach them due to their high-volume experience, expertise and optimal results in surgery. They do 4-7 of these surgeries a week! They are also able to get all the tumour out in situations where other surgeons have failed. We have read about the details of many patient’s stories who travelled to San Diego from around the world.
The more we read, the more we knew we needed to consult with Dr. Rick Friedman for specific guidance on Janelle’s tumour. We sent the MRI images to his office and he called us directly after looking at her scans. His advice was very precise – retrosigmoid craniotomy using hearing preservation techniques, that she had a good chance of hearing preservation (“you have a good chance of hearing preservation 50/50 or better, I think you are in with a good chance”) as the tumour hasn’t reached the end of the auditory canal, in their hands there would be a 1% chance of facial paralysis (based on their surgery results), and he wouldn’t wait for surgery…asap for hearing preservation.
Dr Rick Friedman’s Patient Navigator, Kris has been amazing. The support we have felt from this team has been second to none. This is what they do…every day. They also sent us a huge surgery pack outlining the whole process, what to expect, what to bring to the hospital, where to stay while in San Diego, how to navigate the airports after surgery, the timing for being cleared to fly home etc.
In January we connected with a lady called Mandy from Georgia, USA who also had a 2.1cm Acoustic Neuroma (the same size as Janelle’s tumour) and good hearing. In fact, their scans look almost identical! Mandy’s case had a few differences and Dr. Rick Friedman gave her a 33% chance of hearing preservation. Mandy had her surgery in August 2019 and Dr. Rick Friedman & Dr. Marc Schwartz were able to preserve her hearing!
Following our consultation with Dr. Rick Friedman we immediately began engaging our various insurance companies seeking assistance to get over to the USA for treatment. We are covered for brain surgery here in Australia but not overseas, and another insurance policy we have requires Janelle to be permanently disabled before they will process a claim.
Go Fund Me is our last resort to save Janelle's hearing and preserve her quality of life. We have one shot at this and want to give it our best shot.
We are so thankful to God that Janelle was diagnosed so quickly and that we have a real opportunity to preserve the hearing and facial nerve before the tumour grows bigger. We have seen so many details unfold already and have a surgery date booked with Dr. Rick Friedman in San Diego for 12 March. We now have 5 weeks to arrange the funds required for this brain surgery. If you are able to help in some way or share our story we would be forever grateful. All funds raised will go directly to:
1. The cost of surgery and hospital stay in San Diego (these costs have already been quoted and set by the hospital)
2. Accommodation in San Diego while Janelle receives post op treatment and is cleared to fly home
3. Related travel costs
Thank you so much to all those who are praying, we appreciate your continued prayers. Our great God is in control. If you would like to follow our journey we will be posting regular updates on Facebook and have also set up an Instagram page @acousticneuromajourney. Here are three links which show details of Dr Rick. Friedman and the Acoustic Neuroma Centre.
Hearing preservation story – Dr Rick Friedman
Dr Rick. Friedman – discussing Acoustic Neuromas
UC San Diego Health – Acousitic Neuroma
Thank you,
Ryan
"Ryan, they found something." was what I heard on the phone as she left the MRI imaging centre.
Her scan revealed a 2.1cm Acoustic Neuroma, a rare benign brain tumour (1 in 100,000) that grows on the cranial nerve and pushes up against the brain stem.
Consultations with two of the most experienced surgeons in Australia revealed that treatment for this size tumour requires very complicated surgery. The risks involved in having the wrong surgeon perform the surgery include:
1. Permanent facial paralysis
2. Hearing loss (single sided deafness)
3. Daily headaches
4. Permanent balance issues
5. Tinnitus
Needless to say we began to research surgeons with the experience and expertise to perform the surgery. Studies show that tumour size and the surgeon’s experience are the most significant factors influencing facial nerve function and hearing outcome after removal. Janelle is also in a situation where the tumour hasn’t reached the end of the auditory canal and has grown further away from the ear so she still has good hearing and speech recognition in that ear.
Janelle is a wife and mother to my 4 girls and the thought of living for the rest of her life with permanent facial paralysis, single sided deafness, or any of the other possible effects was something we wanted to do everything to avoid.
Unfortunately, the Australian experts advised in her case and tumour placement that surgery in Australia would guarantee complete hearing loss due to the surgical approach and experience of the surgeons. There would also be a significant risk of facial paralysis and the surgeons would need to sacrifice the hearing to do everything they could to preserve the facial nerve.
Throughout our research we read about world renowned Dr. Rick Friedman (Otolaryngologist) and Dr. Marc Schwartz (Neurosurgeon) who opened an Acoustic Neuroma Centre in San Diego, California. Together they have operated on over 3000 Acoustic Neuromas (the most experienced of all the active surgeons in the USA). Patients fly in from around the USA and world to reach them due to their high-volume experience, expertise and optimal results in surgery. They do 4-7 of these surgeries a week! They are also able to get all the tumour out in situations where other surgeons have failed. We have read about the details of many patient’s stories who travelled to San Diego from around the world.
The more we read, the more we knew we needed to consult with Dr. Rick Friedman for specific guidance on Janelle’s tumour. We sent the MRI images to his office and he called us directly after looking at her scans. His advice was very precise – retrosigmoid craniotomy using hearing preservation techniques, that she had a good chance of hearing preservation (“you have a good chance of hearing preservation 50/50 or better, I think you are in with a good chance”) as the tumour hasn’t reached the end of the auditory canal, in their hands there would be a 1% chance of facial paralysis (based on their surgery results), and he wouldn’t wait for surgery…asap for hearing preservation.
Dr Rick Friedman’s Patient Navigator, Kris has been amazing. The support we have felt from this team has been second to none. This is what they do…every day. They also sent us a huge surgery pack outlining the whole process, what to expect, what to bring to the hospital, where to stay while in San Diego, how to navigate the airports after surgery, the timing for being cleared to fly home etc.
In January we connected with a lady called Mandy from Georgia, USA who also had a 2.1cm Acoustic Neuroma (the same size as Janelle’s tumour) and good hearing. In fact, their scans look almost identical! Mandy’s case had a few differences and Dr. Rick Friedman gave her a 33% chance of hearing preservation. Mandy had her surgery in August 2019 and Dr. Rick Friedman & Dr. Marc Schwartz were able to preserve her hearing!
Following our consultation with Dr. Rick Friedman we immediately began engaging our various insurance companies seeking assistance to get over to the USA for treatment. We are covered for brain surgery here in Australia but not overseas, and another insurance policy we have requires Janelle to be permanently disabled before they will process a claim.
Go Fund Me is our last resort to save Janelle's hearing and preserve her quality of life. We have one shot at this and want to give it our best shot.
We are so thankful to God that Janelle was diagnosed so quickly and that we have a real opportunity to preserve the hearing and facial nerve before the tumour grows bigger. We have seen so many details unfold already and have a surgery date booked with Dr. Rick Friedman in San Diego for 12 March. We now have 5 weeks to arrange the funds required for this brain surgery. If you are able to help in some way or share our story we would be forever grateful. All funds raised will go directly to:
1. The cost of surgery and hospital stay in San Diego (these costs have already been quoted and set by the hospital)
2. Accommodation in San Diego while Janelle receives post op treatment and is cleared to fly home
3. Related travel costs
Thank you so much to all those who are praying, we appreciate your continued prayers. Our great God is in control. If you would like to follow our journey we will be posting regular updates on Facebook and have also set up an Instagram page @acousticneuromajourney. Here are three links which show details of Dr Rick. Friedman and the Acoustic Neuroma Centre.
Hearing preservation story – Dr Rick Friedman
Dr Rick. Friedman – discussing Acoustic Neuromas
UC San Diego Health – Acousitic Neuroma
Thank you,
Ryan
Organizer
Ryan Connellan
Organizer
Rouse Hill NSW
