Bad news, need a 2nd op

Re: Bad news, need a 2nd op

Postby Carl » Tue Mar 24, 2020 5:30 pm

I've seen some Twitter activity around Pituitary operations and the current COVID-19 situation. Assuming that your surgery is up via the nose (Endoscopic endonasal) then this is deemed as very high risk right now because the sinus area operated in could easily harbour the virus and infect the surgeon(s).

https://twitter.com/SkullBase_doc/statu ... 59808?s=20

But the Tweet does say if they have to be done, then full protective gear must be worn. So may be worth following up with your surgeon, it sounds to me like there aren't got to be many cases more worthy of needing an operation than you?
Carl
 
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Re: Bad news, need a 2nd op

Postby member_42793 » Tue Mar 24, 2020 9:54 pm

Well I’ve spoke to him this morning and he said it won’t be happening at the moment. I just have to trust the judgment that it’s safe not to have the operation for another 2-3 months. I literally have no other options available. I’m still going to my Pre-Op on Thursday and I’m going to use that as an opportunity to ask questions. Any suggestions welcomed.
Cheers
Karl
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Re: Bad news, need a 2nd op

Postby Carl » Thu Mar 26, 2020 10:34 am

it's true, you have to trust their judgement.

Probably would be useful to understand what 'red flags' would change their mind about you being safe not to operate on for the time being. What would should you look out for in terms of the progression of your condition, if you suddenly had 'x' symptom that was a real concern, what would it be? Get them to explain exactly why they are 'happy' not to operate right now and what would change that opinion. What the risks of operating now, versus the risks of delaying for a couple of months.

Whether the Pituitary Foundation Endocrine nurse helpline would be able to help? https://www.pituitary.org.uk/support-fo ... -helpline/
Carl
 
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Re: Bad news, need a 2nd op

Postby member_42793 » Sat Mar 28, 2020 7:50 am

Yeah good advice, I’ll try and contact my Consultant on Monday.

Thanks again
Karl
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Re: Bad news, need a 2nd op

Postby member_42793 » Wed Jun 17, 2020 1:49 pm

So I went for a face to face with my Surgeon/consultant today....

It’s just typical of me to get back home and then have a thousand questions

My options are as follows:

1-Surgery - second surgery is slightly more tricky because of Scaring from the 1st surgical debulk. Also advised that it won’t be possible to remove all of the Tumour.

2- Radiotherapy - have Radiotherapy which will take 18-24 months to stop the Tumour from growing, but won’t shrink it. They thinks it’s completely safe to leave the Tumour for now.

Really I’m just wondering if anyone else out there has had surgery more than once? My original surgery was July 2016 aged 32, so I’m not even 4 years down the road aged 36, but the nature of this Tumour isn’t typical of most Non-Functioning Tumours, it’s growing more aggressively. Is there a limit to how many times they could perform surgery?

Radiotherapy, are there any success stories out there? Should having Radiotherapy and in two years hoping it stops growing and then debulk the Tumour followed by more Radiotherapy.

Any thoughts or recommendations based on experience would be most welcomed.

Thanks
Karl
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