sara-pezzini Posted June 30, 2017 Author Share Posted June 30, 2017 Thank you Jibralta! The morphine has kicked in and finally after 4 weeks I'm pain free!! cheer cheer cheer I'm just extremely tired and fall asleep constantly... Last night was the deepest sleep I've ever had and I've had quite a few with my meds but this was different... Even waking up, i thought i was awake and checking my phone, reading my messages, but i was still asleep dreaming haha It was very hard to wake up. And I'm a little dizzy but if this is all the side effects i get then I'm happy... at least the pain is gone! Of course with something that can give me hallucinations, last night there was a big fly in my room..... doesn't happen often cause i have screens everywhere so it was weird... but real..... or was it hahaha no it was, I'm sure... July 19th is the mri and the decision date..... Link to comment
Jibralta Posted June 30, 2017 Share Posted June 30, 2017 That's freaky with the hallucinations. Way back in the day, when Ambien first came out, I took some and it knocked me on my ass. The last thing I remember is looking at my closet and seeing my clothes sliding off the hangers. Next thing I knew, it was morning! I never had hallucinations like that before, not even with acid or mushrooms. Link to comment
sara-pezzini Posted June 30, 2017 Author Share Posted June 30, 2017 Hahaha but mine wasn't a hallucination, the fly was real but they timing of it was funny cause i make sure all my window have screens so i hardly ever have a fly inside. So that just made me giggle... I hope the hallucinations stay away! I never had them and i think it'll be freaky indeed. And of course if i have a hallucination of a hot guy or a million bucks okay.... but it would probably scary haha But hey I'm just glad the pain is gone! Link to comment
sara-pezzini Posted July 6, 2017 Author Share Posted July 6, 2017 I'm still pain free thank God! I have been extremely tired, was tired on the meds but that was nothing compared to this... Now it's getting a little better..... did some cleaning yesterday, first day i had some energy, but then after that i was so so tired again, went to bed at 10pm.... and then slept immediately and till 8am this morning..... Tired now as well.. But no pain! Mri is the 19th and fingers crossed he can do the gamma knife! Link to comment
sara-pezzini Posted July 9, 2017 Author Share Posted July 9, 2017 pain is coming through again. Tomorrow i had a doctors appointment planned anyway.... probably need a higher dose of morfine.... Link to comment
Seraphim Posted July 10, 2017 Share Posted July 10, 2017 How did your dr's appointment go Sara? Link to comment
sara-pezzini Posted July 10, 2017 Author Share Posted July 10, 2017 We doubled the morphine dose sadly..... Now hopefully the pain will go away and stay away. I'm a freaking walking drugstore! Link to comment
sara-pezzini Posted July 11, 2017 Author Share Posted July 11, 2017 Doubled morphine... Double the exhaustion... man I'm so tired... eyes keep shutting and hard to open them... Hopefully after a week this will be better again... Today the pain wasn't gone but just put the patch on this morning... so it should improve tomorrow... fingers crossed... Slept 2 hours on the couch this afternoon... usually it's 30 minutes so wow... and felt so terrible after that... Link to comment
sara-pezzini Posted July 11, 2017 Author Share Posted July 11, 2017 Thank you... can really use some hugs...this is hard Link to comment
Seraphim Posted July 11, 2017 Share Posted July 11, 2017 Thank you... can really use some hugs...this is hard I can't imagine how hard it is I'm sorry . hugs. Link to comment
sara-pezzini Posted July 21, 2017 Author Share Posted July 21, 2017 Okay needed a few days to wrap my head around this.... Basically another gamma knife would not be the answer, it takes quite some time to work and wouldn't last very long either. Now since i have already needed to up the morphine twice now there's really only one thing left to do and that is to remove a part of the tumor....... Not as much as they usually do because of all the risks because of where mine is located. But a part to remove the pressure on the nerve. Cause the surgery in March worked but since the tumor is pressing into the nerve now there is a huge amount of pain... The tumor has shrunk 2 mm in 18 months so while that's good news it goes way to slowly to wait for that. Something needs to be done asap... Actually because of the radiation its easier to remove a part and also easier not to remove too much. Because there is the risk of damaging the nerve leaving me with a crooked face or other complications. So there it is.... Couldn't stop crying for the past few days but i know it has to be done because the pain is gradually becoming unmanageable.... So because of holidays and stuff it will take place in October.... Another brain surgery and an even bigger one..... Hope to God it will work because otherwise i don't know what to do anymore..... Link to comment
Seraphim Posted July 21, 2017 Share Posted July 21, 2017 I will keep you in my heart sweetheart. ❤️ Link to comment
Jibralta Posted July 22, 2017 Share Posted July 22, 2017 Sending good vibes in your direction... Link to comment
mines Posted July 29, 2017 Share Posted July 29, 2017 Sending prayers and good energy your way Sara. ((hugs)) Link to comment
sara-pezzini Posted July 30, 2017 Author Share Posted July 30, 2017 Thanks you guys! The coming week i have the talk with the nurse about the surgery, talk with the anestheasiologist and do bloodwork and check heart..... Meanwhile the morphine is working! I have long working to get to a certain level in the blood and the short time working so i can take one if needed... works within 30 minutes and for about 6 hours. And i can take 6 of those a day.... never needed more than 2 yet. So if it stays like this that'll hold me over till the surgery. Link to comment
sara-pezzini Posted August 13, 2017 Author Share Posted August 13, 2017 Update The pain is coming through again so i had to up the dose of morphine.... God this is never-ending! Had the pre operative screening last week and they called me Friday that my blood pressure is high, it needs to get lower cause otherwise they don't do a high risk surgery as this is. I told the nurse i am trying to lower it naturally first and if it doesn't work, then yeah another type of meds..... So she gave me till September to lower it myself. Which is what I'm doing now, read everything about it and am doing everything i need to. So hopefully it'll work! The one thing i cannot fix myself is stress, the anxiety... especially now that the pain is getting worse again... that just gives me so much stress......i try to stay calm and do breathing exercises..... Link to comment
RainyCoast Posted August 13, 2017 Share Posted August 13, 2017 sara. i'm so sorry to read this. i was really hoping you'd get relief after the procedure. i hope you find the right dose of meds to keep you comfortable and the next procedure does the trick. big hugs. Link to comment
sara-pezzini Posted August 13, 2017 Author Share Posted August 13, 2017 thanks rainy! Yeah it looked hopeful for a while but early June the pain came back and just got worse and worse until I'm now on all my meds plus morphine..... it sucks and I'm so sad and worried! The next surgery is what the surgeon didn't want and what i don't want but we don't have a choice anymore... I'm scared how i will get out of this! It's risky and I'm in a support group for acoustic neuroma and not many get out of it without any compilations..... so I'm scared.... also have a lot of faith in my doctor and the last surgery went well but still, he operated most of those people as well.... and he himself is nervous about this one. So i can really use all good thoughts and prayers this time! But in two weeks i have a five day trip to Sweden first! So that'll help me relax a bit...... Link to comment
RainyCoast Posted August 13, 2017 Share Posted August 13, 2017 i can imagine it being very challenging to stay positive right now. but i'm glad you've a surgeon you trust, that's priceless. and you MUST have a blast in Sweden, we'll want to hear all about that! you're in my thoughts! Link to comment
sara-pezzini Posted August 13, 2017 Author Share Posted August 13, 2017 thank you!! Oh yes i will try to leave it all behind in Holland and just really truly enjoy my little niece! My surgeon is the best in the field of brain tumors and trigeminal neuralgia and a really nice man as well! He makes me feel very comfortable in all this...... but yeah hard to stay positive now! Link to comment
sara-pezzini Posted August 13, 2017 Author Share Posted August 13, 2017 Oh yeah, the nurse explained the surgery and care after. This time it will last at least 4 hours, the stay in the hospital will be 9 days at least and then the recovery pretty much like last time, 6 weeks of absolute nothing and then a chat with the doctor to see what's possible then.... I asked for someone to clean my house again and am putting food in the freezer.... Oh how familiar... Last time was the dress rehearsal and now will be the real deal... lol Link to comment
Seraphim Posted August 23, 2017 Share Posted August 23, 2017 I really hope this works for you Sara . And hopefully there it's only very minor deficits . I know you explained the surgery doesn't come without them so hopefully it's very minor. Link to comment
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