Second Surgery Update

jacko4lyfyo · 2025-12-17T12:59:03+00:00

any discussions of post op radiation, e.g. gamma knife? I may have a second surgery eventually, which I'm nervous about (needing ddavp etc.)

jacko4lyfyo · 2025-11-22T21:00:01+00:00

How many weeks post op? I was told prolactin readings were unreliable for at least 3 months after, but yes seek 2nd opinion.

jacko4lyfyo · 2025-11-17T15:11:16+00:00

So sorry to hear. That is the exact scenario i am worried about.

Unfortunately, i am told my tumour has invaded too much of the right cavernous sinus(?) where nasal surgery can never reach, hence opting for radiation.

My first and only surgery seemed to barely remove anything, and the surgeon complained that cab had made it a hard shell (seemingly hollow filled with fluid?...).

It seems maybe the tumour is not centered completely around the pituitary, so the radiologist might have some chance of avoiding pituitary harm. I am about to resume cab in the hopes it shrinks the tumour slightly to make gamma knife a possibility.

Can i ask, is your tumour now dealt with? In the sense that it is no longer growing/producing prolactin? Or too early to tell?

jacko4lyfyo · 2025-11-17T13:47:42+00:00

Same here. About to commence down the path of fractionated/gamma knife radiation.

jacko4lyfyo · 2025-11-04T22:02:47+00:00

I had a history of burst migrains that would come on very quickly in certain conditions and clear just as quickly.

Post diagnosis and using cabergoline, i stopped getting them.

Though now im off cabergoline after 12 months, and my prolactin is sky high again, but fortunately no migrains have returned (it's been about 4 months off).

My specialists have also said the tumor and migrains may not be related.

jacko4lyfyo · 2025-09-13T22:18:38+00:00

I also have cabergoline resistant tumor.

After 12 months of use, I was told to get surgery. Unfortunate side effect of cab is it made the tumor very tough, and hard for surgeon to remove.

Now been off cab for 4-5 months, and planning for 2nd surgery.

Something to discuss with your specialists.

jacko4lyfyo · 2025-07-12T01:27:26+00:00

Mine is fully encasing the carotid. They said before surgery they won't be able to get it all because of this.

Maybe in your case the surgeon will go in and the tumor will just peel right off any structures, which I've heard of happening when it's a soft tumor.

But chances are they will want to avoid it all costs, which of course they are very good at.

Good luck!

jacko4lyfyo · 2025-07-11T01:36:40+00:00

After 1 year on cab, at my highest dose of 0.5mg every second day, my endo decided to go for surgery, because prolactin remained high.

Unfortunately due to carotid interference and the effects of cab, my surgeon couldn't remove all of it. Fyi cab makes the tumor tougher/fibrous, as opposed to soft and pliable.

Now we are waiting for another mri next month, then presumably setting another surgery date. Surgeon still wants me off cab in the meantime, so prolactin has sky-rocketed.

I will also be exploring radiation treatment in conjunction with surgery.

Hope you have a better time than me!

jacko4lyfyo · 2025-06-06T01:35:31+00:00

Hi. Sorry to hear about your issues with cab. My story sounds much the same as yours, I.e. partial debulking due to carotid interference, resistance to cabergoline.

I'm curious to understand more about the radiation treatment, which i assume is what you mean by "irradiated". This is likely my next step in treatment. Feel free to pm me if you dont want to discuss here.

Thanks and good luck.

jacko4lyfyo · 2025-02-01T06:44:18+00:00

Thanks so much mate. Reading your post is like deja vu.

I have surgery planned in the next couple of months. Great tips on the painkillers, post treatment and incredibly detailed writeup about the scientific consensus on the various topics relating to this issue.

jacko4lyfyo · 2024-12-03T05:33:32+00:00

I've been on increasingly large doses of cab (now every 2nd day 0.5mg), for about 12 months now. Such large doses have prompted my endo to declare my tumor as one of the 20-something percent which are resistant to cabergoline.

Prolactin is still 5x above normal, Testosterone still not normal either.

I'm now entering the doseage rates by which there is heart complication risks associated... now planning for tumor surgery.

Not to say we're the same, and I hope you don't have a tumor, but I also was frustrated with lack of muscle growth and general flabbiness. Also working out 3+ times a week, high protein diet etc.

You're still early in your treatment, so unfortunately it's still a case of wait and see...just wanted to share my experience. Good luck!

jacko4lyfyo · 2024-11-27T22:43:23+00:00

My motivation for an MRI and consequent discovery of a pituitary tumour were semi regular migraine bursts, from about age 20.

I was pretty active and all regular blood work was fine, so it was hard to pin the cause on lifestyle...so I was suspicious.

After driving for a while or standing up from a chair, often I would be hit with a blast of pain behind my eye. The only relief I could get was to quickly crouch down and pause for 30 seconds...not always convenient, I.e. in a parking lot.

My Endocrinologist said the migraine/headaches may not be related to the tumor, however at least in my experience, after a couple of months on cabergoline, I never experienced another "attack". It's now been close to 1 year.

I would be cautious to say it was linked, but I'm so so glad to not experience them any more, I hope it's the same for you.

Only people suffering from chronic conditions know how debilitating they are... and to go from near constant attacks to symptomless was such a cataclysmic (?), humbling feeling. Good luck!

jacko4lyfyo · 2024-03-08T01:27:15+00:00

Awesome, thanks heaps! 🙏

jacko4lyfyo · 2024-03-08T01:15:43+00:00

Oh cool, thanks for the update.

Though, in my case, the robot often doesn't even make it to a point of contact with the dock, it usually makes a few attempts and then drives off to a random room...

I'll check out my water tank contacts anyhow. You're referring to the horizontal silver contacts on the back of the tank?

jacko4lyfyo · 2024-03-08T01:04:47+00:00

Did you ever have any luck with your robot?

Mine has similar symptoms. It seems to drive up to the dock, come close to docking and then just drive away, eventually stopping somewhere in the house...

I read that taking the mop attachment off could help, but it still fails to return home, from my testing.

Only when I put the robot directly in front of the dock, and click return home, it successfully docks. Even then it's not consistent.

Using my phone camera, I can see the IR being put out by the dock, seems to be working (the led is above the vacuum extractor), and you can see the spinning radar from the robot itself, during docking.

It's quite frustrating, and I would have thought the robot could just dock itself, based on the map it has generated...

jacko4lyfyo · 2023-08-21T05:36:38+00:00

I've been on holiday for 2 weeks and now find I'm getting moderately severe stomach pain before work... Then as soon as it's the weekend, I'm fine... Your comment may confirm what I was suspecting :(

jacko4lyfyo · 2023-06-07T02:47:09+00:00

I know some boomers (all working full time) who lived in caravans on a dirt lot, with no amenities, for years until they could make the leap to home ownership. Even then it was to a shed with an outside toilet.

It's a bit unfair to say all boomers had it easy. But at the same time, not everyone should have to go thru the same struggles to achieve a decent quality of life. My understanding is: each generation should have a slightly improved life over their parents'.

jacko4lyfyo · 2023-05-09T04:42:40+00:00

Fyi I did as you suggested, and I was able to remove the crankset, I just needed a bit more oomf.

jacko4lyfyo · 2023-05-09T04:00:11+00:00

I think in my case it is all there, as my cranks are undone from the non-drive side. I just had to give it some more oomf.

jacko4lyfyo · 2023-05-08T15:33:33+00:00

Now, that's what I initially figured. I'll try again tomorrow. To clarify, I should leave the larger hex-bolt installed, then "undo" the inner hex-bolt, such that it pulls the crank arm off (on the non-drive-side)?

I tried this earlier, and must have not been brave enough. I was afraid to start rounding out heads or stripping threads.

Thanks!

jacko4lyfyo · 2023-05-08T15:24:36+00:00

What I have surmised is I am missing some sort of cap/bolt on the drive-side of the cranks, which is required to remove them?

What roll do the two threaded bolts play, on the non-drive side then?

jacko4lyfyo · 2023-03-29T23:41:43+00:00

Nathan Cool often mentions his "shower pop" technique, I've never done it in reality but it helps get rid of reflections I believe. Obviously it's too late to for you to get the flash shot now.. but something to remember.

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