Seraphim Posted March 28, 2017 Share Posted March 28, 2017 I asked for it myself! Don't think they'll offer it anytime soon since it has risks and with this disease they pretty much leave it all up to you... But it depends on which form of TN you have, thou need the one with the electric shocks, typical TN.... For the other form of TN it won't work and can even make it worse. First have them do an mri and see if they can spot m see a vessel issuing against the nerve. If that's the case then this surgery and the anaesthesia is worth it!! Yeah for me I have the constant burning and burning and burning and burning not real electrical pulse shocks know what I mean ? It can just be burning and burning and burning and burning for days . Link to comment
Seraphim Posted March 28, 2017 Share Posted March 28, 2017 There's a burning and ice pick feeling . Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 Then from what i know this surgery won't help and cam even make it worse. I don't know that feeling, i have electric shocks that are set off by every movement of the face, even the smallest movement, even breathing. But it is definite electric shocks, like they put the wire of an electric fence in my mouth and just set it off every time.... So you'd have to check with your neurologist of course but from what i know you'd have the atypical form....... but i don't know if in English they also use the terms typical and atypical TN...... Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 But my electric shocks then go into burning and burning so I'm still not sure haha Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 Googled it and in English its type 1 and type 2.....i have type 1 and that's the type you need to have for the MVD to work.... Link to comment
Seraphim Posted March 28, 2017 Share Posted March 28, 2017 They have never even told me what type I have or even done an MRI they say since the medication works most of the time no real need to do one . Link to comment
sara-pezzini Posted March 28, 2017 Author Share Posted March 28, 2017 Yeah i just don't understand that! Yes you have TN cause the meds work but still, if it's type 1 you can have this surgery of its type 2 you can't, big difference! If they see a vessel against the nerve they'll know they can operate and with me the meds also worked but there was still a tumor in my head! Here it is mandatory with TN to get an mri to see...... But also here there such a huge difference in neurologists..... you really need one that really really understands TN. The one i had before did order they mri and he did get it somewhat but there is such a huge difference with they neurosurgeon i have now! He is the expert on TN in Holland and you can tell...... I wouldn't keep on going like this if i were you, you need to know, thou have a right to more info, it's your body! But here as well you have to do the research and they asking yourself, the first thing they do is fill you up on meds and you can't keep doing that all your life..... The rhizotomy is an option but also the cyberknife that i had last year is a treatment for tn...... Link to comment
sara-pezzini Posted April 1, 2017 Author Share Posted April 1, 2017 I had another pill less but then yesterday i started to get a little breakthrough pain so i put the pill back on and have to lower less quickly again..... that sucked! On a positive note, my brother is here all day and did groceries and we watched a movie together and now he's making me dinner! So much fun, we haven't been alone together for many years so this is nice! He did this to make up for not being able to come to the hospital and i like this better! Link to comment
Seraphim Posted April 1, 2017 Share Posted April 1, 2017 That is great your brother came to see you! I have been thinking about going to the cannabis patch and ditching these drugs. Link to comment
sara-pezzini Posted April 1, 2017 Author Share Posted April 1, 2017 Yes many people here with type2 tn use cannabis, especially oil..... and especially for the type 2 since they can't have the mvd i just had so its worth a try!! Link to comment
Seraphim Posted April 1, 2017 Share Posted April 1, 2017 Yes many people here with type2 tn use cannabis, especially oil..... and especially for the type 2 since they can't have the mvd i just had so its worth a try!! I'm going to talk to the specialist because this crap is literally destroying my teeth . Link to comment
sara-pezzini Posted April 3, 2017 Author Share Posted April 3, 2017 Took my first little walk outside today! Yay! It was the first time since the surgery that i was able to have my wig on for a little bit, before today that hurt too much on my head and obviously I'm not going outside without it on so this was another big step! Think we walked for 15 minutes...... my mom was with me and it seems that I'm less dizzy than before the surgery, except i have to focus, if i hear something and turn my head then i get dizzy right away..... Progress! The breakthrough pain seems to subside a bit and at least doesn't seem to get worse so ill be able to lower some again..... I do notice that the lowering is affecting my sleep already! I've heard that once I'm off the meds completely it will be very hard to sleep at first..... Been taking this for 2 years so my body will have problems retraining itself to sleep... Oh well! Link to comment
sara-pezzini Posted April 5, 2017 Author Share Posted April 5, 2017 New date planned and a special one! Next week on Saturday R will come pick me up and take me to his house ( he lives 30 mins away) and then he will cook for me!!! Never had a man cook for me before since my ex was too stubborn and weird to do so..... Instead of flowers to bring i have let a special beerglass engraved with his name lol he'll love that! Woot I'm excited! Link to comment
sara-pezzini Posted April 15, 2017 Author Share Posted April 15, 2017 Had a truly amazing date today with R that lasted for 8 hours! He picked me up and went to his house which is amazing as well! He had made me a great dinner with soup and a main course and a dessert.... and I've already been in his bed today hahaha to try out the mattress but still.... counts in my book..... been 3 years since I've been with a man in bed so this counts lol He loved the beerglass!! We talked so much and also laughed a lot. We have so much fun together but can also talk real serious, he said he couldn't really talk like this with most women and the same goes for me. I feel totally at ease with him! And that doesn't happen often with me! He's incredibly sweet and considerate..... In 2 weeks he'll turn 40 and i will take him to dinner then as a surprise..... Link to comment
Capricorn3 Posted April 15, 2017 Share Posted April 15, 2017 So nice to see you happy! Link to comment
sara-pezzini Posted April 16, 2017 Author Share Posted April 16, 2017 Lol thank you! I truly am! Link to comment
Seraphim Posted April 25, 2017 Share Posted April 25, 2017 Hey Sara! Still doing well? Link to comment
sara-pezzini Posted April 25, 2017 Author Share Posted April 25, 2017 Thank you! Yes i am still lowering, am now only a third of the meds! Last week some pain so waited to lower again and now the pain went away so i will continue... I have to take small steps and there is still some mild pain now and then but it subsides on its own... Tomorrow i have to go to the hospital again for the 6 week check up post-op....... And you? Link to comment
sara-pezzini Posted April 27, 2017 Author Share Posted April 27, 2017 Went for my 6 week check up yesterday and everything is well! Doctor was very happy with my progression. I can now start to pick up my life again and slowly start doing things again I told him I'm down to 400mg of tegretol from 1200 and 900 of gabapentin from 3600 and he was happy about that, i said i do still have pain but not the electric shocks and he explained that i had two different types of pain, neuralgic pain which were the shocks, caused by the artery pressing into the nerve and he fixed that with the surgery and that cannot happen again! But i also have neuropathic pain from the tumor damaging the nerve and that takes longer, the nerve has to heal itself and with the tumor shrinking he expects that pain to eventually go away as well. But to be honest, that is a pain you can live with, and now that i know the shocks can't happen anymore i will lower the meds more quickly and be done with them! So reason to celebrate finally! I told R and he was emotional, and so happy..... tomorrow is his 40th bday and i have send him a huge helium balloon with 40 on it haha and a message that says for a proper celebration he has to come here next week, may 6th And then when he gets here i will take him to dinner in a great restaurant that has all his favourites, Chinese, Indonesian, Thai and Japanese food but all in small tapas style! I tried it out yesterday with my parents and you can order 5 rounds of 5 small dishes per person, so you can try a lot! Of course 25 is a lot, we came at 13 per person haha but he will absolutely love it! This morning he was messaging me in 3 ways at the same time, WhatsApp, Facebook and facebook messenger hahaha Link to comment
Seraphim Posted April 27, 2017 Share Posted April 27, 2017 You sound so happy Sara! I am so happy for you! On Sunday I'm going down to 500 mg of Tegretol. I have had no pain. So I'm hoping I am in a remission . Link to comment
sara-pezzini Posted April 27, 2017 Author Share Posted April 27, 2017 I think at this speed we'll be off the meds together!! Lol Let's hope it's all behind us! And yes i am very happy at the moment!!! Life is good! Link to comment
mines Posted April 28, 2017 Share Posted April 28, 2017 Sara! I'm so happy for you! Woohoo! This is excellent news, I am just smiling so big, thinking of you.....as others have said you just sound so incredibly happy. You deserve it! Yay!!!! Link to comment
HeartGoesOn Posted April 28, 2017 Share Posted April 28, 2017 Awww Sara, You rock! \\ Link to comment
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