sara-pezzini Posted September 1, 2017 Share Posted September 1, 2017 I'm turning 45 today and I'm thinking... wondering how the next 45 years will be.... if they will be.... I have a benign brain tumor that causes trigeminal neuralgia, which is just excruciating pain! First we started with meds but i needed more and more so in March this year we did brain surgery, an MVD, cause there was a vein pressing into the nerve, they placed a patch between vein and nerve and the pain should be gone... Should.... but it wasn't, it came back 6 weeks after the surgery and was even worse, and my meds didn't work anymore so now I'm on morphine and it took 2 months but it's under control again.... for now. The pain is like electric shocks, like a wire from an electric fence in my mouth. Worst pain you can imagine and not something you can deal with. Since all the meds I'm taking plus the morphine are too much to just continue, we decided to do another brain surgery but this time try to remove part of the tumor to try to relieve the pressure. Because of where my tumor is located this is risky and the neurosurgeon really didn't want to do this, i will come out of the surgery guaranteed worse than i am now, usually you go deaf on tumor's side but there are many other complications that can happen, one being facial paralysis because there is a chance he will hit the facial nerve Tumor has grown into the facial nerve and is hanging basically between that nerve, the balance nerve and the hearing nerve ( not sure if those 2 are correct in English) So in a few weeks that will happen but there is no guarantee that i will come out of this okay and there is no guarantee that it will cure the TN. But I'm out of options... And the doctor is out of options, this is the last thing he can try, that could have a chance of working... And i am scared that it won't work. This is a pain that i cannot handle for the rest of my life..... So..... I'm also looking into euthanasia.... at the age of 45.... It's legal here in Holland thank God but it's weird to look into it and discuss with my loved ones! It is something that is a real option with TN... But we'll deal with this surgery first! And hope i come out of it okay, took me a long time to recover from the first one and I'm still not back to work and a second one this soon will be hard. I have to stay in the hospital for around 9 days or more. I did not hate the last time, is a nice hospital and they took real good care of me! So what am i asking? Uhm well some good thoughts for me, fingers crossed!! Thank you! Link to comment
Capricorn3 Posted September 1, 2017 Share Posted September 1, 2017 Sara, I am so sorry to hear this. I cannot imagine how difficult this must be and truly terrifying. A good friend of mine had the same thing done (removal of tumor) and she did lose hearing in her left ear and also had partial facial paralysis, but other than that, she has come through it, so please don't lose all hope. I understand that every case is different, but just sending some hope your way. ~sending many many good wishes your way~ Link to comment
sara-pezzini Posted September 1, 2017 Author Share Posted September 1, 2017 Thank you! Yes the fear of how i will get out of this surgery is not as bad as the one where it just doesn't work and the pain stays! That is what i can't handle...... and there are no guarantees..... it's even not done many times and the one case i read, like mine, it didn't work and the pain wasn't gone. That's my biggest fear, going through all this for nothing... I cannot take these meds all my life, they have big side effects, i am a zombie and everything just goes by me without me registering it...i gained 30 pounds in the 2 years i took them, because of them... and most important my liver cannot take this for long. But i cannot handle the pain without them, the pain is a 30 on a scale of 10 So then what? That's my fear..... Link to comment
Capricorn3 Posted September 1, 2017 Share Posted September 1, 2017 Thank you! Yes the fear of how i will get out of this surgery is not as bad as the one where it just doesn't work and the pain stays! That is what i can't handle...... and there are no guarantees..... it's even not done many times and the one case i read, like mine, it didn't work and the pain wasn't gone. That's my biggest fear, going through all this for nothing... I cannot take these meds all my life, they have big side effects, i am a zombie and everything just goes by me without me registering it...i gained 30 pounds in the 2 years i took them, because of them... and most important my liver cannot take this for long. But i cannot handle the pain without them, the pain is a 30 on a scale of 10 So then what? That's my fear..... All totally understandable. It must be absolutely horrendous and I really feel for you. Hopefully this next surgery will have a positive outcome, even if only to a small extent. Keep the faith and don't give up just yet. (Hugs). Ohhh, and Happy Birthday!! Link to comment
sara-pezzini Posted September 1, 2017 Author Share Posted September 1, 2017 I will try for sure! It's not over yet! Haha and thank you!! I'm having just a quiet celebration, just my parents and best friend.... still cannot handle crowds, so exhausting! Link to comment
Seraphim Posted September 1, 2017 Share Posted September 1, 2017 Happy Birthday Sara!!! You know you are forever in my heart and I wish the best for you. Link to comment
Batya33 Posted September 1, 2017 Share Posted September 1, 2017 I wish you all the best, a happy birthday and a smooth surgery and a speedy recovery. You are very strong and I'm sorry you have to go through this. Link to comment
DancingFool Posted September 1, 2017 Share Posted September 1, 2017 Happy Birthday and here is to the surgery going well, a speedy recovery and the pain turning into a long forgotten memory soon. Big internet hugs for you. Link to comment
sara-pezzini Posted September 1, 2017 Author Share Posted September 1, 2017 Aww thank you all so much!!! means a lot! Link to comment
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