sara-pezzini Posted November 10, 2017 Author Share Posted November 10, 2017 Been to the hospital today, had small tests done to see where I'm at now and how that will be after the surgery, walk a straight line, stand on toes and heels (couldn't stand on heels btw) close eyes and point to nose etc... They put 9 small plastic caps on my head to mark special points on the mri and will help the surgeon decide where what is. They did an mri and asked me if i want CPR..... that question always hits me.... Got my wristband on and they informed me that the surgery will be Tuesday morning instead of Monday.... so i have to be there Monday evening. Oh well one more day....but that did mean that i will get a singles room which is extremely important for me for personal reasons... Sunday that wouldn't have happened.... And since i said a while ago that i rather move they surgery then stay in a 4 person room, they listened! And understood! So I'm a patient now but at home.... have to try to keep the plastic caps on all weekend! Lol.... oh well..... Tomorrow brother from Sweden comes over..... 10 days went by really fast! But if it had been the old date i would have come home yesterday! Oh well.... Link to comment
mines Posted November 11, 2017 Share Posted November 11, 2017 Dear Sara, I am crossing my fingers and sending good vibes and energy from my heart to you! I hope everything goes perfectly and that is what I'm envisioning for you. (((hugs))) Link to comment
Seraphim Posted November 11, 2017 Share Posted November 11, 2017 Dear Sweetheart , I will be praying for you. ❤️ Link to comment
sara-pezzini Posted November 11, 2017 Author Share Posted November 11, 2017 thank you both! Didn't have a good night cause sleeping with those caps on is uncomfortable and had some nightmares about me dying... ugh.... And on top of everything the pain started again! Cannot up my morphine cause anaesthesia is calculated on what i have been taking so far and don't want to add to that.... It's still in the early stages ago no electric shocks yet but that can come fast. So I'm in for a rough weekend! Link to comment
Starlight925 Posted November 11, 2017 Share Posted November 11, 2017 I just want you to know that my thoughts and prayers are with you. Hugs to you, and peace for you as you go through this. I cannot imagine what this is like, so I will simply say.....love to you. Link to comment
sara-pezzini Posted November 11, 2017 Author Share Posted November 11, 2017 Thank you! Very sweet! Link to comment
sara-pezzini Posted November 13, 2017 Author Share Posted November 13, 2017 I've been admitted to the hospital and am in my bed now.... It's 10.16pm here and the surgery is tomorrow at noon.... so in 16 hours from now... Link to comment
Silverbirch Posted November 18, 2017 Share Posted November 18, 2017 Dear Sara, my prayers are with you. Xx Link to comment
sara-pezzini Posted November 18, 2017 Author Share Posted November 18, 2017 surgery went very well! They removed part of the tumor and under it was what the doctor couldn't see before, the facial nerve twisted. And that caused the pain! He put it back straight and wrapped it in sponge and now i am pain free at the moment! And according to him it's fixed now! Let's hope so! But last surgery i still had a little pain now and then till it became a lot, but now nothing! Already down with the morphine by two thirds! They want to lose that one first and so do i! Just had a shower which is extremely tiring so now back to sleep! Thanks for the prayers! Think all of them really helped this time! Link to comment
Silverbirch Posted November 18, 2017 Share Posted November 18, 2017 That's so good to read Sara! Xx Link to comment
Realitynut Posted November 19, 2017 Share Posted November 19, 2017 So glad to hear good news. I can't imagine living with continual pain....so glad they found it...will they ever be able to remove the whole tumor? Link to comment
sara-pezzini Posted November 19, 2017 Author Share Posted November 19, 2017 No that's too risky due to it's location... it's there nicely in between the facial nerve, the balance nerve and the hearing nerve and the chance of hitting any one of the 3 is just too big. But it's had radiation 2 years ago and is dying from the inside, and doctor now cut a piece from it, which was my idea! And then he saw the problem, he couldn't see that in previous surgery or in mri's so this was a good one! And he didn't hit anything else, which was a huge gamble! So not gonna do that again unless i have to. I do have some side effects with my hearing, my tongue and my arm but that's excepted to all recover, just takes time. And i have a splitting headache now which is common for this surgery but wasn't with the previous one. Just my luck. But all that is still better than trigeminal neuralgia!! I was looking into euthanasia and now have my life back, just lose all the meds first! But that is the worst pain there is known to man. I hope i never feel that again!! Link to comment
Silverbirch Posted November 20, 2017 Share Posted November 20, 2017 I hope you make a full recovery soon Sara xxxx Link to comment
sara-pezzini Posted November 20, 2017 Author Share Posted November 20, 2017 Hope so too! But spend first night in my own bed! Was completely white last night but i just saw some color again. Think yesterday took a bit much out of me!! But..... no pain..... Link to comment
sara-pezzini Posted November 28, 2017 Author Share Posted November 28, 2017 Thanks for asking! I'm having the worst night ever and it's my own fault. Maybe that'll teach me! I was having incredible food cravings all week ( because of the dexamethasone ) and yesterday my groceries came finally, so i went on a binge for food and i ate way too much. Stayed up long to help my stomach settle but finally tried to sleep at 3.30 am ( yeah.... oh well) Woke up an hour ago with the content of my stomach in my mouth, with the added acid as well..... burning in my throat obviously It's been an hour now so it's slowly going back down but i should definitely not do that again!!! And sleep some during the day when my stomach has settled..... Dexamethasone also gave me terrible hot flashes that lasted all night until 2 nights ago! Finally able to sleep...ahum..... But i still have the drug till Saturday but half of what i first had so its getting better. The food cravings will be instantly cured as well now i guess lol Other than all this the taste in my mouth is slowly coming back and since yesterday i was also able to taste savoury stuff.... wish i didn't now lol My arm is getting a bit better with the help of physio and best of all no more morphine and no pain!! really haven't felt anything since the surgery..... Still scared to believe it but there it is..... Now i can slowly go down on my meds again... Slowly but scared this time! Aand never ever eat again....lol.... Link to comment
sara-pezzini Posted November 29, 2017 Author Share Posted November 29, 2017 Had a great night! Still a few hot flashes but okay.... not as bad as they were! Stomach settled again and incredible appetite is gone... This morning i read another story of a woman who cannot close her eye since the surgery. And that happens a lot! Really cannot and shouldn't complain cause i was scared of a whole lot more! I'm slowly taking off my own medicine! Took one pill off last night..... scary but this is the reason i did this obviously! Link to comment
Seraphim Posted November 29, 2017 Share Posted November 29, 2017 This sounds great Sara!! Link to comment
Seraphim Posted December 5, 2017 Share Posted December 5, 2017 How is the weaning and healing going Sara? Link to comment
sara-pezzini Posted December 6, 2017 Author Share Posted December 6, 2017 I'm still going down! Every three days i can take a pill off and it's still going great with zero pain! Morphine is gone and now my other meds.... I'm starting with the gabapentin and 900mg from the 3600mg is gone. Tomorrow another 300mg! If all goes well then 31st of December that one will be gone! Then start with the tegretol..... if all still goes well then 18th of January I'm free of meds! I'm having lots of headaches though but they'll subside eventually i hope! The bad medicine, dexamethasone is also gone and i can sleep again at night and have no more hot flashes! Finally! Butt that drug also makes you feel great and is 10 times worse than prednisone and is given in the final stages of life to make you feel a bit better...... so I'm feeling a bit worse now that it's gone...... so not sure what is better? Although those hot flashes were terrible! And the less drugs the better! Link to comment
Seraphim Posted December 6, 2017 Share Posted December 6, 2017 I really hope the headaches subside but other than that everything sounds great !! Link to comment
sara-pezzini Posted December 6, 2017 Author Share Posted December 6, 2017 It is! But I'm feeling not that great now that the dexamethasone is gone... very tired and altogether not great.... but it's better than with that drug i suppose.... Everyone including me was surprised how well i felt the past three weeks and i suppose now i feel like you should feel after brain surgery..... Still no pain and tomorrow another pill goes off! Link to comment
sara-pezzini Posted December 10, 2017 Author Share Posted December 10, 2017 An update for the one who asked me.... wink wink xxx I'm still having the headaches, but they are under control now with 4 times 2 paracetamols a day.... every 6 hours, this builds up the level in your blood and i even put on the alarm at night.... So headaches are fine -ish now Still no tn and go down another pill today so that is 1500mg of 4800 in total! I do feel a like something in one tooth, but only when I'm brushing it and it's not pain, hard to explain, but i do have to keep checking that, maybe it'll become tn or maybe i just need a dentist, cause everything was masked by the tn meds...... I need more sleep, i even sleep during the day and all night, no more lying awake and no more hot flashes! That was definitely the dexamethasone... Only good thing that drug did is that for those 3 weeks i had no acne, such a beautiful skin! And on Sunday i quit and Monday the first pimples arrived lol..... But they were even painful and in the tn spot so i felt pain there and was worried..... it was just my acne.... Worst outbreak ever... but okay... Better than the hot flashes i suppose! So that's how I'm doing now! Xxx Link to comment
Seraphim Posted December 28, 2017 Share Posted December 28, 2017 How are you doing Sara? Did you have a good Christmas? Link to comment
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