sara-pezzini Posted April 25, 2016 Author Share Posted April 25, 2016 Yes it really is! It's hell, truly is I have different varieties and one of them is like an electric wire in my lower jaw that just lights up, you know like torture? When i told my dentist that he knew right away it was tn Link to comment
gigiselle Posted April 30, 2016 Share Posted April 30, 2016 thank you, no i got the diagnoses yesterday from my neurologist, and he is sending me to an oncologist team and an ear doctor since they both have to treat this, he told me they will know more than he does and he doesn't want to say anything that might not be true, so i now have to go to the ear doctor next week and then the oncologist team asap, and only then will i know more.... there are three options, wait and do nothing and monitor it's growth, which seems unlikely because of the TN i have, radiation to see if it shrinks, or surgery to remove it, but they need to look further to make sure which is the best option, so that will take more time... it is not life threatening, unless it grows towards the brainstem, that can be fatal..... I think with Stereotactic Radiosurgery the tumor responds best if not larger than 2 cm. It also tends to preserve hearing better than other alternatives. Link to comment
sara-pezzini Posted April 30, 2016 Author Share Posted April 30, 2016 I don't know if you read further because i already had radiation in January, i chose the gamma knife procedure. My tumor had grown 1.5mm in those 8 months so a good choice! I have no further hearing loss, or tinnitus, that has stayed the same. I am however not fully recovered yet from the radiation..... In July a new mri to see and the first possible shrink will be next year, but it's not guaranteed to shrink.... Link to comment
sara-pezzini Posted April 30, 2016 Author Share Posted April 30, 2016 Just saw your question in the tn thread. Removing the tumor is extremely risky, you will always lose hearing and since the area is so full of nerves they will most likely touch something and leaving you with more problems. They don't advise this surgery if you're still so free of problems as i am, cause you'll get out of the surgery worse than you are. Not something you should want unless you have to. Also the risk is very high that they touch the facial nerve and then it could get even worse..... Link to comment
Capricorn3 Posted April 30, 2016 Share Posted April 30, 2016 Removing the tumor is extremely risky, you will always lose hearing and since the area is so full of nerves they will most likely touch something and leaving you with more problems. They don't advise this surgery if you're still so free of problems as i am, cause you'll get out of the surgery worse than you are. Not something you should want unless you have to. Also the risk is very high that they touch the facial nerve and then it could get even worse..... Sadly that happened to my friend (hearing loss in left ear and facial paralysis on the left side. Thankfully these days things are far more medically advanced. Hopefully you continue to improve and all goes well for you. (Hugs). Link to comment
sara-pezzini Posted April 30, 2016 Author Share Posted April 30, 2016 Must have been hard on your friend! Even now with all the medical advances this is still a very risky surgery with all the nerves there and they still are not able to save the hearing and still not able to perform it without any problems. Some lose their smell and taste, some have their faces go numb, some have a face that hangs, some get TN, some loose mobility in an arm or hand. But almost everyone comes out of it with more problems than i currently have, and i think my problems are enough haha But doctors don't even want to do it in my state, you have to be in worse state than i am, balance/hearing/tinnitus/and so on-wise Mine is a pretty unique situation, yay! but A, this tumor is very rare but B, it's symptom is almost never TN....lucky me! It's usually loss of hearing and balance problems which bring it to light Meh so far pain free so that's good.... Hosted a small dinner party today with a few recipes that i had to make, used to be no problem but it was hard for me. I learned that i still cannot do that, was extremely hard to focus and get it all done, had it all written out what i had to do and when, but even then it kept going round and round in my mind and i got headaches and dizziness from it. Weird....but lesson leaned....cannot do such things yet The recipes weren't complicated but so much planning to get everything done in time. Also very hard to find words sometimes...i forget them and i have to get around them to get to what i want to say or like on here, write Link to comment
sara-pezzini Posted May 11, 2016 Author Share Posted May 11, 2016 Update.... While i am now pretty much 6 weeks free of pain, yay! The added gabapentin/neurontin is having many side effects, all of them are better than the pain obviously, but now since 3 days my heart is fluttering and not the good kind haha I have had this before in the past occasionally but now 3 days in a row.... Will ask neurologist about this, i know it's just annoying than dangerous but still..... Other than that still trouble with my head, dizzy, forget everything, can't find words often, like living in a fog state, I'm not really there, hard to explain that one. Still sleep very deep and hard to wake up in the morning and now my skin itches, it's a side effect but I'm also familiar to eczema all my life but it was under control for 4 years now.... Lots of side effects. Annoying. Oh yeah the tegretol makes you gain weight because it holds water, and it truly did, i hardly peed at all but the gabapentin doesn't have that effect so maybe it's balanced now because I'm peeing like crazy haha so maybe the weight will come off again! But hey painfree! And that's worth so much! I'm on the Dosage of 3600mg regretol and 2700mg gabapentin.....that's so much! But it works! Now i can get some hope that the tumor is done swelling up after the radiation and is stable now and maybe we can lower the dosage some day soon-ish.....That will be scary! I'm coming up on my one year "anniversary" of when i got the diagnosis tumor......next week on Friday that will be a year and that sounds so bizar because for me it's like i just had that diagnosis, but a lot has happened since.....so weird! Then in about 7 or 8 weeks i will get my next mri! So curious! Link to comment
Seraphim Posted May 11, 2016 Share Posted May 11, 2016 Oh my gosh I can not imagine being on a dose that high! I think I would be in a coma! But hey if it keeps the pain away. Link to comment
sara-pezzini Posted May 11, 2016 Author Share Posted May 11, 2016 Haha no i couldn't last year either but the pain kept increasing, coming through the meds, i started out the same dosage as you. But i got to this point slowly obviously, they build it up slowly. But my tumor was growing before the radiation and swelling as well so the more it grows, the more pain. It's not typically how tn goes obviously. Although in most cases i read the dosage had to be upped as well because the body gets used to the dosage and it doesn't work anymore. Not to freak you out but do be prepared for that! And anything is better than that pain! You know, sadly Link to comment
Seraphim Posted May 11, 2016 Share Posted May 11, 2016 I am hoping I stay at this level for at least a while. Link to comment
sara-pezzini Posted May 11, 2016 Author Share Posted May 11, 2016 You probably will, and then you'll also get used to the meds, they say...... Link to comment
Seraphim Posted May 11, 2016 Share Posted May 11, 2016 Well, I do feel the odd twinge but I can't say it's really painful. It is more that I notice it. Link to comment
sara-pezzini Posted May 13, 2016 Author Share Posted May 13, 2016 Received the letter from the radiation hospital, date is set, august 10th i will get the new mri and then a chat with the neurosurgeon to see where we are, what the tumor's done. Can't wait honestly! Link to comment
Capricorn3 Posted May 14, 2016 Share Posted May 14, 2016 Awesome. Hope it all goes well. Link to comment
sara-pezzini Posted May 15, 2016 Author Share Posted May 15, 2016 OMG unrelated to my tumor but just watched the formula one grand prix of Spain and dutch pride Max Verstappen just won! First ever Dutch win in formula one. And the guy is just 18 years old! OMG.....That was so thrilling, was nervous as heck and cried like a baby afterwards haha. No tumor or tn news. Also nice for a change haha Link to comment
sara-pezzini Posted May 17, 2016 Author Share Posted May 17, 2016 Oh my gosh I can not imagine being on a dose that high! I think I would be in a coma! But hey if it keeps the pain away. Haha i just realized i got my dosage wrong. Problems with the brain right. It's 1200mg tegretol and 2700 mg gabapentin. Still a lot but 1200mg tegretol is the maximum so 3 times that? Haha lol Link to comment
Seraphim Posted May 17, 2016 Share Posted May 17, 2016 OMG Sara I don't know which is worse... Lol Link to comment
sara-pezzini Posted May 20, 2016 Author Share Posted May 20, 2016 It's the anniversary of my diagnosis today, last year around this time i was still unaware, thinking i "only" had TN, a few hours later, BAM I'm going to "celebrate" by ordering sushi and drinking a glass of wine lol Of course the wine makes my meds stronger and vice versa haha so i will be dizzy but sleep even better. It's worth it every now and then! On the downside I'm having breakthrough pains Link to comment
sara-pezzini Posted May 20, 2016 Author Share Posted May 20, 2016 Yeah crap! But if it stays like this i can handle it. Hopefully not worse because my meds can't go up and then i would have to get new ones and yada yada Link to comment
Seraphim Posted May 20, 2016 Share Posted May 20, 2016 Yeah crap! But if it stays like this i can handle it. Hopefully not worse because my meds can't go up and then i would have to get new ones and yada yada I have break through pain too but I don't want to go up and an Advil can handle it . Link to comment
sara-pezzini Posted May 20, 2016 Author Share Posted May 20, 2016 Good that that helps! With me it doesn't, nothing does sadly, but it's okay for now, i can eat, only the first bite that i chew is painful, then it's okay, so as long as it stays like that i can handle it just fine. I thought the tumor was done swelling since my head feels better, and i didn't expect pain for a while if that's the case.... Link to comment
WithLove Posted May 20, 2016 Share Posted May 20, 2016 So good to hear that you're doing well. Hang in there!! Link to comment
sara-pezzini Posted May 27, 2016 Author Share Posted May 27, 2016 Well the break through pain ended up completely disappearing last weekend after 2 glasses of wine haha. But it came back on Tuesday though more mild. So yay for wine..... Talked to neurologist today and when i said i have been pain free for 8 weeks now (yay! ) he said, maybe we should start with lowering the dosage and i said whoa whoa wait a minute, is still there, i can feel it in my lower jaw when i touch it, it's just not painful eating or brushing teeth etc, but i know it's there, right under the surface and he said we will keep it this way until i am 100%painfree. He had assumed i meant that.....for me a little tiny bit of pain is okay, reminds me it's still there. ...98%painfree! We agreed that i will contact him when i want to lower the dosage. Been reading on the page of my health insurance and boy this is all expensive! Glad i don't have to pay for it myself! These meds are expensive, an mri is very expensive and so are mere consults with a neurologist! And the bill for the gamma knife isn't even on there yet, i am curious how expensive that has been! I remember 2 years ago i was looking into the possibility of having no health insurance and just pay the doctor's bills myself, which is impossible in Holland as it turns out, remember being angry about that because i felt the money i pay monthly to the insurance was too much and i would never use up that money because i never have anything.............oy! Good that that was impossible! I would have gone bankrupt! Insurance costs me 130 euro a month and with bills that go into thousands of euros i am well off! And boy do i have a crush....think i could really fall for him if i let myself..... Right now am just enjoying the butterflies and his company and his care! He is so very sweet.....and there so is something there! Big sigh...... Link to comment
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