sara-pezzini Posted May 21, 2015 Author Share Posted May 21, 2015 Thanks holly,good to hear that that might actually work! Does she have any symptoms at all? Link to comment Share on other sites More sharing options...
HeartGoesOn Posted May 21, 2015 Share Posted May 21, 2015 Sending good vibes your way, Sara. We're always here for you. Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 21, 2015 Author Share Posted May 21, 2015 Thank you! Everybody thanks, it helps calm my nerves! Link to comment Share on other sites More sharing options...
petite Posted May 21, 2015 Share Posted May 21, 2015 Very sorry to hear your news, Sara. The positive in all of this is that it is benign and you will be fine. Try and stay positive and just do what the professionals tell you now. It will be okay. I think we all know someone that has had a benign tumor removed and continued to live a healthy life with regular checkups. Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 22, 2015 Author Share Posted May 22, 2015 i had a good night's sleep, the headache is gone now, i do have some slight dizzyness that i had more often, never thought about it, just thinking, oh i ate to little or whatever, but guess that is the tumor as well....been testing my hearing myself a little and i can still hear reasonably well with that ear so that is good as well, that makes surgery less likely. am a lot calmer now, and will take it as it comes, can't really change anything about it so....it will be fine! Link to comment Share on other sites More sharing options...
Capricorn3 Posted May 22, 2015 Share Posted May 22, 2015 Oh my gosh Sara, I just saw this now. So sorry to hear this! A very close friend of mine had an Acoustic Neuroma many years ago - she collapsed at work one day, taken to hospital and this was found. Her's was quite severe, she had it removed. Lost hearing in the left ear and her left eye-lid tended to droop - basically a general weakness on the left side. Over the years things have improved significantly and she's just fine now. These days so much more can be done. Keep the faith. ~hugs~ Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 22, 2015 Author Share Posted May 22, 2015 thank you! yes i read in some cases it can grow really fast and cause severe problems, i know when you get the surgery the hearing will be gone in that ear, so i also read that if you can still hear the often don't opt for the surgery unless it grows fast, but in my case i think it has been there already for at least 10 years, because i can't even remember how long ago i noticed i could hear slightly less with the right ear, but didn't think anything of it, i got used to that, but that is the first symptom, so i am hopeful that mine is really slow growing and they can either monitor it, or do the radiation, which is less invasive and the thing i would opt for if given the choice.... Link to comment Share on other sites More sharing options...
engraved2008 Posted May 25, 2015 Share Posted May 25, 2015 thank you! yes i read in some cases it can grow really fast and cause severe problems, i know when you get the surgery the hearing will be gone in that ear, so i also read that if you can still hear the often don't opt for the surgery unless it grows fast, but in my case i think it has been there already for at least 10 years, because i can't even remember how long ago i noticed i could hear slightly less with the right ear, but didn't think anything of it, i got used to that, but that is the first symptom, so i am hopeful that mine is really slow growing and they can either monitor it, or do the radiation, which is less invasive and the thing i would opt for if given the choice.... Hey sara ,I read your thread ...I am not a specialist but I can only wish you to recover from this ...I am sure is terrible what you re going through Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 25, 2015 Author Share Posted May 25, 2015 Thank you! Sadly my trigeminal neuralgia started again so i had to take my first carbamazepine pill today and I'm a little scared of side effects i read about.... Link to comment Share on other sites More sharing options...
chickadeedee Posted May 25, 2015 Share Posted May 25, 2015 If it were me, I'd do the radiation. They have very targeted radiation these days that can hit just the tumor and nothing else and shrink it. I'd do research to find a hospital that has the kind of high tech equipment that can do that targeted radiation. Many cancer centers especially at teaching hospitals tend to have the better equipment/methods. Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 25, 2015 Author Share Posted May 25, 2015 Yes radiation is my first choice indeed. Been doing a lot of research into that already. I think waiting is no option given my symptoms and i really don't want the surgery unless i really have to. With radiation you have two choices. Do the gamma knife, which is all the radiation in one go, they screw a sort of helmet onto your head and give the radiation into one session. Benefit is that is one time and your done, but the screwing sounds creepy and there are some effects after the procedure and again after a few months. Second option is fragmented radiation, less dosage and you have to go in every day for 26 days! For a few minutes and for all those weeks you will feel tired and some side effects. Plus that hospital is far from here so a huge strain to go there each day. So both have benefits and both have side effects, so i think that will be my choice and if the doctors agree i want to go for the gamma knife, though i really dread that, for some personal reasons, but oh well... Link to comment Share on other sites More sharing options...
chickadeedee Posted May 25, 2015 Share Posted May 25, 2015 I had a friend who did the regular radiation for a month (for a different type of cancer). It worked and she didn't relapse, but at the time she said it made her tired and gave her some local effects such as a messed up digestion for a few months because the radiation was being delivered to her abdomen. If you don't have someone who can go with you and drive that might be problematic since you can't predict the side effects. And it is far more generalized than the gamma rays so It would make me nervous about the effect on my brain. They have to use stereotactic equipment to keep your head from moving and for precisely locating the tumor since the gamma is so targeted. I am sure they will give you local anesthesia where they attach the frame (and very tiny incisions) and can give you a tranquilizer that relaxes you to the point you don't care about it. Be sure to ask for it if you're the least bit nervous about it... Intervenous valium, elixir of the Gods! I used to have a horrid fear of dentists until i went and had nitrous oxide when i had some major dental work done, and frankly i was totally unconcerned about what the dentist was doing the whole time and couldn't have cared less because i was so relaxed! And the drugs they have in hospitals are even stronger/better than what dentists have. And it won't last long and then you're done and don't have to worry about it! I'd be far more nervous/concerned about a tumor growing inside my head and pressing on things if i did only watch and wait than wearing the stereotactic helmet for one day! But that's me, i wouldn't do watch and wait if i had any symptoms and knew it was growing in there... it would make me crazy thinking about it! Just get good pain meds to take at home if you have a headache afterwards... Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 25, 2015 Author Share Posted May 25, 2015 Lol yeah I'm more worried about that thing growing in my head too!that's kinda freaking me out to be honest. And the stereotactic radiation would be a huge strain on my parents who would drive me every day, plus feeling bad for 6 weeks is also worrying me. So I'm pretty much already convinced that it will be the gamma knife and yes they give you morfine and lots of fun stuff so you don't care anymore haha there is just a personal issue that i don't want to talk about on here which will make it that much harder for me. And after it they will give you a very strong medicine to prevent swelling of the tumor which it will immediately following the procedure, and that medicine is supposedly very hard, with lots of bad side effects so I'm dreading that as well, Is called dexamethasone. But all in all something has to be done because it growing is stressing me out and I'm also dizzy and the trigeminal neuralgia is also no picnic, sadly there is no guarantee that any procedure will stop that... Link to comment Share on other sites More sharing options...
chickadeedee Posted May 25, 2015 Share Posted May 25, 2015 I've had a major illness that caused trouble for a while, and what is important is just to realize that it will be a rough row to hoe for a while, but then you will be able to get back to normal again and not let it dominate your thoughts or fears. So just be kind to yourself, make an educated decision about what you and the doctors think is the best treatment, and then go for it! I actually think a lot of the anxiety about it will dissipate when you actually start getting into the treatment and recovery. Worrying about what MIGHT happen is really difficult, but while you're actually doing it, you'll be focused on finishing and getting back to normal rather than the great big fear of the unknown looming before you. They do have wonderful drugs these days for both pain and medical conditions. Remember, those lists of side effects they publish are every possible thing that *might* happen and overwhelming DON'T happen to most people and in very tiny percentages. So I would see the dexamethasone as very short term necessity and not worry about it. If you did have any of the worse side effects, they'd switch you to something else. Those drugs really are miracles and save lives, and you won't be taking it for long. Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 25, 2015 Author Share Posted May 25, 2015 Yeah i know, i just have to let it all happen, there is nothing i can do to change it so whatever will be will be. I try not to let it throw me right now and just go to work, visit friends and put it in the back of my mind. Just when i get up and am dizzy then i realize oh yeah, tumor..but that will ease as more time passes, it's just a relatively new thing that I'm trying to make sense of. But thank god is benign, people get far worse diagnoses each day so i will be fine..just tumor in my head sounds so scary and the pic that i got of it looks so weird. But all will be okay in time. You've been really helpful, thank you! Link to comment Share on other sites More sharing options...
sara-pezzini Posted May 25, 2015 Author Share Posted May 25, 2015 And you're quite right, it's mostly the fear of the unknown! Link to comment Share on other sites More sharing options...
sara-pezzini Posted June 10, 2015 Author Share Posted June 10, 2015 Small update. Have an appointment with the academic hospital for next Wednesday. With specialists who know a lot about this, so then i will know more about what we'll do,what the options are. If possible i want to do the wait and scan and just monitor it for a while since we know nothing really, we know it's 2cm now but not how fast it grows, which direction it grows. So i think wait and scan is the best option. But the specialist may think differently.... On the one hand I'm anxious to know more but on the other hand I'm dreading the appointment.....kinda scared..... The meds really help with the TN pains and I'm no longer dizzy and stoned on them but extremely tired. I sleep a lot and work is a struggle. Hopefully i can quit them again soon Link to comment Share on other sites More sharing options...
Seraphim Posted June 10, 2015 Share Posted June 10, 2015 I am so sorry honey. I am praying for you. Hugs. Link to comment Share on other sites More sharing options...
sara-pezzini Posted June 10, 2015 Author Share Posted June 10, 2015 Thank you! I'm okay-ish most days are fine but then some days it hits me and i dread the road ahead and i get scared.....Will know more next week Link to comment Share on other sites More sharing options...
Seraphim Posted June 10, 2015 Share Posted June 10, 2015 I can so understand being afraid. Link to comment Share on other sites More sharing options...
sara-pezzini Posted June 10, 2015 Author Share Posted June 10, 2015 Can't really help it, i try to go on like normal but every day I'm confronted with it since everyone at work knows and everyone is super caring and inform all the time if I'm okay. Sweet but makes it harder to put it out of my mind. And i know everything could be a lot worse and there are worse things but it's just scary. It's my brain.... And there is also still a slight possibility that it's malignant but that needs further examination in the academic hospital. It seems like the acoustic neuroma but there is a slight chance it's not. So there's that as well. What if, you know......i didn't see this diagnoses coming either so what if..... Link to comment Share on other sites More sharing options...
sara-pezzini Posted June 17, 2015 Author Share Posted June 17, 2015 Another update. Went to the academic hospital today and they want to do the wait and scan since we don't really know anything atm So unless i get more symptoms i will go in for an mri next year and see how much it has grown, we can do this till it is 2.5cm and then we will start radiating. Since i don't want the surgery and it's also not what the doctor prefers. So for now a little room to breathe but has to and will be dealt with in the future...... Link to comment Share on other sites More sharing options...
engraved2008 Posted July 15, 2015 Share Posted July 15, 2015 Another update. Went to the academic hospital today and they want to do the wait and scan since we don't really know anything atm So unless i get more symptoms i will go in for an mri next year and see how much it has grown, we can do this till it is 2.5cm and then we will start radiating. Since i don't want the surgery and it's also not what the doctor prefers. So for now a little room to breathe but has to and will be dealt with in the future.... Take a day at the time...I hope there will be good news next year from your doctor Link to comment Share on other sites More sharing options...
sara-pezzini Posted July 15, 2015 Author Share Posted July 15, 2015 Thank you. Yes i take it as it comes and i hope next year it hasn't grown or grown a little bit. And i hope i don't get any other symptoms aside from the trigeminal neuralgia...that's already plenty! Also noticed that in extreme hot temperatures i feel pressure in my head and get dizzy, happened last year as well but then i didn't know why..... Link to comment Share on other sites More sharing options...
sara-pezzini Posted September 27, 2015 Author Share Posted September 27, 2015 An update for those who still follow this thread and especially for chickadeedee I will be getting the one time radiation soon because the TN is not going away anymore and getting much worse. So i chose this myself Called the oncologist and he agreed and send my papers to the gamma knife hospital. I'm waiting for a call for a first chat there and then i want the procedure done in January due to many reasons, not before and i was told by the oncologist that i could tell them my preferred month, I know that from the radiation the tumor will swell first so that means more pain and before it actually shrinks it will be around a year so that decided my choice because that means at least another 18 months of this pain and then just hope it works and the pain will subside eventually. The facial nerve is not damaged just yet but if the tumor grows then there is a good chance it will be, meaning the pain will not go away anymore and the thought of having this pain everyday for the rest of my life is just insufferable. The meds keep getting increased and i am a walking zombie from them Also am very depressed and going to a psychologist for that next week So all in all it has affected me much more than i had anticipated I'm scared for the gamma knife thing, the actual screwing the frame into my skull sounds horrifying so will use every drug available to me! Link to comment Share on other sites More sharing options...
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