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benign tumour in my brain


sara-pezzini
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  • 2 weeks later...

Been to the hospital and the doctor was so very happy to hear that I'm pain free, the only complication i have from the surgery is a teary eye, that will probably stay like this he said and its annoying but nothing compared to trigeminal neuralgia!

The tumor had radiation in January of 2016 and has shrunk for 4 mm now! And i don't have to come back to him for a whole year! I'm so happy with that!

Since the tumor was discovered it has been the hospital or doctor every few weeks or months so now a whole year sounds amazing to me! I work fully again now and lost 10 kilo..... so many reasons to celebrate and then leave this behind me!

Didn't think that would ever happen! A lot can and has changed in a year!

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Wow Sara, so amazing. I've been reading your story for years.

 

I cannot tell you how happy I am to read all of this!

 

And way to keep it in perspective about the teary eye: yes, annoying, but nothing compared to the pain you were feeling. I am so pleased that the good doctors were finally able to figure out the source of your pain and correct it.

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  • 1 month later...

Small update again....

Yesterday was 8 months ago that i had the surgery which means i have been pain free for 8 months now! 6 of which without medication! Still pretty amazing!

I have been working fully again for 8 weeks now and i have lost 12 kilo! I have my life back and i feel as i did before this all happened in 2014!

Still the small annoyances like a teary eye, a tear wells up in it every few minutes and i start to get blurry vision and have to wipe the tear out cause otherwise it just stays there, and this all day long every day..... and i have a dry mouth from the radiation and morphine and because of that i get painful sores on my tongue frequently and as of this week i am a little dizzy again...

Hope that doesn't get worse but that's due to location of the tumor.

All in all i feel great and while annoying its not trigeminal neuralgia!

R is taking me to a surprise celebratory dinner tonight lol

So yeah life is pretty amazing again!

Weird when i came this close to euthanasia.....

I do have frequent dreams of hospitals, doctors, surgery so I'm processing probably....

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Thanks for the tip! I just did some research and we do have it in Holland, i have tried another brand and that did absolutely nothing but i will give this one a shot!

I have switched toothpaste to one that helps prevents the sores and am drinking cranberry juice (yuck!!) And both have helped to lessen the sores problem but the mouth and especially the tongue stays dry, sometimes the tongue is even white..... will try the biotene!

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The one i tried was 5times as well, this one was the best recommended here in Holland but it did zero.... I'll try this one.... do you use the spray or the gel? I tried a spray as well, also did nothing and i used the other one as a gel, also did nothing....

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The one i tried was 5times as well, this one was the best recommended here in Holland but it did zero.... I'll try this one.... do you use the spray or the gel? I tried a spray as well, also did nothing and i used the other one as a gel, also did nothing....

 

Here it is a mouthwash type gel.

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I don't know, i really hope not! I got it from the morphine and i haven't been taking that since December but I've read that if you had radiation to the head this is a common side effect, you produce less saliva, strangely enough its mainly my tongue, the tongue also still feels a bit weird and cola tastes differently on it..... so maybe it'll go eventually, i hope so! I hope the teary eye improves as well but not sure that it will......

It's both annoying but compared to that was or what could have been it's nothing!

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I don't know, i really hope not! I got it from the morphine and i haven't been taking that since December but I've read that if you had radiation to the head this is a common side effect, you produce less saliva, strangely enough its mainly my tongue, the tongue also still feels a bit weird and cola tastes differently on it..... so maybe it'll go eventually, i hope so! I hope the teary eye improves as well but not sure that it will......

It's both annoying but compared to that was or what could have been it's nothing!

Absolutely!

....

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  • 3 months later...

It's been a while lol, but I'm still doing very well, even better actually, still zero pain, not even a little twitch, surgery is 11 months ago now so I've been free from pain for 11 months now and 9 months without any medication!!! Never thought that was possible!

I work fully again since May and i have lost 15 kilo! Even the teary eye is mostly gone, after i wake tears for about an hour and then nothing for the rest of the day.

And the dry mouth is getting better as well, i have a tooth paste that stimulates saliva and i brush the tongue as well with it and that works, no more painful sores and less dryness.

Next month is the one year mark and i will certainty celebrate that!!

Though emotionally it is all affecting me i notice, i have nightmares about brain surgeries often, guess I'm processing everything.

And I'm still absolutely terrified to go to the dentist, haven't been in 3.5 years and i thought about it but the thought gives me major panic attacks so I'll just postpone it some more.

 

Just reread this entire journal and wow what a journey it's been!!!! And how much pain I've been in... Weird to read that all back, forgot a lot!

And i got a letter from the hospital that i need an mri and doctor's appointment in December, well I've been there in May and i could stay away for a year so this got me upset, called them and they have in their files that need to come in every 6 months, i said no this was promised by the doctor, they will check with him and if i hear nothing then it's fine that i stay away till May, but if he says to come in they will call me... Hope he remembers!!! i really really don't want to go now, i was promised a year and i really need that year!

Even my own general doctor i don't want to see, or the pharmacy, let alone the hospital! I need peace!!!

But all in all I'm doing very very well! All my energy is back, my memory is back woohoo! Lol

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  • 5 months later...

Wow long time no updates, no news is good news i guess lol

I'm still doing really well, been painfree for 17 months now and free from all meds for 15 months now.

Lost all the weight from the meds as well, no more teary eye, mouth is still a little dry but no more sores thank goodness.

The only thing that i am left with is how i handle stress, things that never used to be stressful now are and i can't handle stress anymore, have to be careful to not let it build and fester.

In December i have had numerous stressful things in a row and suddenly my brain shortcircuited or something and i was shaking, crying, huge headaches, very nervous and the reaction to the stress became very physical, immediately took a few days off to rest.

But now i have to watch myself and not let stress build.

Also need more time alone to charge the battery so to speak, people are tiring and draining so need time alone to recharge. (Broke up with my boyfriend because of this as well, need to and want to be alone a lot! And the feeling wasn't too deep anyway, think he was more a support through all that than anything else.....)

All this is the brain damage caused by the tumor and surgeries....

But all in all I'm doing really well, have my life back but will never be my old self again....

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