It’s been nearly two weeks since I shared about my eye and the need for getting a second opinion. I have since met with 2 Neurosurgeons and a Professor who specializes in ENT and skull surgery, to get opinions and a clear understanding of what my next steps should be.
The first neurosurgeon I had my appointment with was a man of few words. I was given a referral to get a myriad of scans done and was told surgery would be needed to remove the tumour. It was at this appointment I confirmed what type of tumour I had.
It’s a right Sphenoidal Wing Meningioma.
The tumour I have is quite common. Some people are walking around with meningiomas and they have no clue they have it until they have an MRI for a related or unrelated health issue.
It’s not a malignant tumour and is slow growing. If left where it is, it can cause health problems in the future and can grow into areas of the body that can make it hard to retrieve. Sometimes the tumours sit there and nothing is done to them until they cause significant health issues.
After I had my appointment, I sent a photo of all the scans I needed to get and the type of tumour to very good friend who is a GP. She did some queries, on the basis that if it was her going in for surgery, she would want the best neurosurgeon working near her brain. Valid point. She found out the neurosurgeon I had met was good at what I had, but he no longer performed surgery. I wasn’t aware of this and much prefer to see a neurosurgeon who will see me for appointments and do the operation.
With this info, she was able to tee up an appointment with her children’s ENT Doctor, who also works with neurosurgeons when operating on these types of tumours. He opened up an appointment for me to see him after hours to get more information on what I had and to answer any questions. The irony of this is he was (and hopefully still is) best friends with the neurosurgeon I had seen the day before.
I got a quick referral from my GP to see this doctor. It was the first time I have ever entered a medical premises with the doctor waiting for me to arrive.
This appointment was great. I was told the reasons why I would need surgery. I was also told the possible health effects if the tumour was left where it was. If I was an 80 year old woman, they would watch and monitor, but because I’m a young 34 year old with my life still ahead of me, it was important to get the tumour out as it will impact my health in other ways.
In terms of surgery, I was told it was an easier location to get to than if it had been located elsewhere in my brain. But if left to grow, it could be harder to get out and may cause damage with eye mobility and possible complete loss of sight in my right eye. It could also impact my brain which leads to other issues. He believed surgery in a couple of months’ time would be best. With that said, he recommended a different neurosurgeon for surgery.
A text message and referral later, I had all I needed to book another appointment with this recommended neurosurgeon. My mum had done enquiries of her own and found out this same neurosurgeon was the one I needed to see.
And so I went home and made the call to book an appointment… only to find out this particular neurosurgeon was booked out until the end of April! But the receptionist expected my call (due to the text message) and they were going to call me to let me know an earlier appointment time.
That appointment happened last Wednesday morning.
I got a somewhat different opinion from this neurosurgeon. He said we could operate as soon as I wanted to get the tumour out but I needed to be aware of the implications because operating now could do more harm than good.
If I was to get an operation to remove the tumour there would be a possibility of an early onset of the same symptoms I want to avoid with it growing there. It could onset double vision and worst case, a loss of eye sight.
Also because the meningioma has thickened the bone behind my eye, this would need to be drilled out and replaced with titanium and mesh. There would be the possibility I could come through surgery with an inset eye (can’t remember the exact wording – but basically I’d need to expect the facial structure around my eye would not be the same).
The killer in all of this is that I would not be able to drive for 6 months because I would need to be on anti-seizure medication. It would be 5-7 nights in hospital, a few weeks off work and I’d sport a new hair cut. 😉
It was a lot to take in. It was a bit of a damned if you do, damned if you don’t situation.
Right now my eyesight is perfect. Mobility is perfect too. I don’t want to chance ruining that if the operation could make it worse. But when these symptoms occur, it’s time to operate.
From my MRI scan, surgery will most likely will be needed in the future, but it’s just a matter of when.
So my question to this neurosurgeon was What would you do if you were in my situation?
His answer was, ‘if you were my wife, I’d be telling you to wait. Get through this busy season with kids and if symptoms start to affect your eye, then operate. But if all you have is a watering eye, take time to plan when to have surgery. It may be a year or more before you need to go down that track’
So, the next course of action is to have another MRI and a CT scan to track the growth of the tumour. I have another appointment in May to check the results from these and compare to the last MRI.
It would be great to not have surgery at all, but it’s likely I will need it and I have time to plan and book it when it will suit our family. This in itself is a relief. Next year Phoebe will be in school, so I can walk all three girls to and from school as opposed to the multiple drop offs I do currently with Phoebe still at kindy.
But before I get too ahead of myself, everything could all change if the scans show the tumour has changed or grown. It’s highly unlikely, but still could be a possibility.
It’s a bit hard to know what to do, but I do trust this neurosurgeon and I think this is the right way to go about it considering the implications.
I updated my ophthalmologist on Friday with what I had decided and she reassured me I had made good decisions based on what I had been told. I see her in August to test my eye sight again.
She also said with these types of health issues, it’s important to get multiple opinions to discern the right course of action.
So all the prayers have been most appreciated at this time. I’ve been led to the right doctors, who’ve given me priority and have told me what I’ve needed to hear.
All I can go on is the peace in my heart with the decision I’ve made, but I also need to be flexible in case it all changes. This post I saw on Instagram by Mama Pyjama Org struck a chord with me and resonates with the decision I’ve made.
I’m also believing this verse and have seen it come to play with the way the referrals and appointments have played out. (Thanks Naomi for playing a key part in working out who to see. You’re an absolute blessing of a friend to me. xx)