sara-pezzini Posted May 20, 2017 Author Share Posted May 20, 2017 yeah i was really obsessed.... hadn't seen anything like that and i couldn't wait till the next week....i watched the episodes so much i can still dream them.... had all the merchandise... The theme song still gives me goosebumps all over!! I'm so excited!! lol Link to comment
sara-pezzini Posted May 20, 2017 Author Share Posted May 20, 2017 Keep thinking today there is something with may 20th but couldn't figure it out. But it was on my mind all day... the 20th.... what's with this date? Then it just hit me... this is the date that 2 years ago my mom was in the Swedish hospital and i learned i had a brain tumour.... that awful day.... Hm.... so that's today....I'm glad it's 2 years further now! And glad i didn't know at the time what was ahead! Link to comment
WithLove Posted May 22, 2017 Share Posted May 22, 2017 How're you coping, Sara? My father's fiancée, whom I mentioned before also had a brain tumor, she is recovering nicely. It was smack between the two lobes and they removed it, and she's been getting radiation for it (no chemo). She refused to be on any pain meds (!!!!) for fear of becoming addicted to them, so she has some sort of lidocaine topical cream that my Dad applies whenever she feels some pain, and the first month she was approved for marijuana pain pills. Those helped her massively; but they were over $300/month, which she can't afford, so now she just spends 50 bucks and gets some weed from a friend, and it lasts her all month (LOL!). The only thing is that she has to be on steroids for the radiation treatments and she has gained about 20 lbs from them, and her entire head is so swollen. It's like two people's heads on one person. It will go down in time, but she's so self-conscious about it. Link to comment
sara-pezzini Posted May 23, 2017 Author Share Posted May 23, 2017 Hi withlove, I'm okay thank you for asking! Had a setback with lowering the meds and the TN pain came back so i had to add meds again.... which sucked cause i was almost off them. But now the pain is gone again and I'm loitering but very very slowly this time! I'm trying to get fit again which is very hard. I was unable to do anything for months because first i was extremely dizzy and then the surgery. Anaesthesia and meds as well so i an starting from zero and it's very hard! Working with a fysical therapist now and i have to be on the crosstrainer for 2 minutes now for a week, then add 30 seconds and do that a week. Haha and even those 2 minutes ate exhausting! I wanted to try it on my own but wanted to do too much to soon and that didn't work.... massive headaches as a result.... But i will get there! Good to great about your dad's fiancee! I can sympathise with the weight thing from meds... even though everyone knows why, you still feel very self-conscious about it!! Glad she gets some relief from weed haha ridiculous how expensive those pills have to be btw! Link to comment
sara-pezzini Posted May 30, 2017 Author Share Posted May 30, 2017 Hi thanks for checking up on me! I'm alright... still working on my energy levels... slowly but steadily.. Went to work for coffee last week which was great fun! But haven't been able to a pill of yet.... it's sensitive at the money, probably because it's hot here and i have more pain in the summer so I'm still at half of what i used to take... And you? How's it going without meds? Link to comment
Seraphim Posted June 2, 2017 Share Posted June 2, 2017 Hi thanks for checking up on me! I'm alright... still working on my energy levels... slowly but steadily.. Went to work for coffee last week which was great fun! But haven't been able to a pill of yet.... it's sensitive at the money, probably because it's hot here and i have more pain in the summer so I'm still at half of what i used to take... And you? How's it going without meds? I am doing pretty good actually. I have mild pain sometimes but it goes. Has the dr explained why you would still have pain? Did the mvd fail? Link to comment
sara-pezzini Posted June 3, 2017 Author Share Posted June 3, 2017 No it hasn't failed, besides that's too soon to say yet, but the nerve is damaged from the tumor, from the radiation and from the surgery so that's the reason. The nerve will repair itself but that takes time. Even the tiniest damage in a nerve has big consequences, and there are so many nerves in your head... Doctor is convinced he fixed it but it will be a bit longer before i can be meds free.... at the moment it's going well but i have to lower much slower..... Link to comment
Seraphim Posted June 3, 2017 Share Posted June 3, 2017 No it hasn't failed, besides that's too soon to say yet, but the nerve is damaged from the tumor, from the radiation and from the surgery so that's the reason. The nerve will repair itself but that takes time. Even the tiniest damage in a nerve has big consequences, and there are so many nerves in your head... Doctor is convinced he fixed it but it will be a bit longer before i can be meds free.... at the moment it's going well but i have to lower much slower..... I so hope you can be med free!!! It has meant a lot to my life. I do have mild pain sometimes but I am willing to tolerate it because the side effects of the meds are just too brutal as you know so well. If I ever have pain that is severe enough I will go back the medication but not before . But being medication free is just so glorious. Link to comment
sara-pezzini Posted June 16, 2017 Author Share Posted June 16, 2017 Not so good update. Last week the pain started again and got really severe and i had to build my meds back up again and the pain still isn't gone and i am almost back to the level of meds as before the surgery so i am really depressed right now..... I know it's the nerve, it's damaged and doc told me that that can take up to 6 months to a year to heal so it's to be expected and there is certainly every hope it will be okay but for now I'm just really upset. Right back where i started..... This surgery is usually done for tn and then it works or not but in my case there is the damage from the tumor and damage from the radiation added which makes this more complex. The typical side of the tn is fixed, unfortunately the damage cause tn as well..... It just sucks! Link to comment
sara-pezzini Posted June 21, 2017 Author Share Posted June 21, 2017 Hmm can't write this anywhere so I'll just put it in my own thread cause he won't read that. But Wiseman is missing! It's been 3 weeks now... maybe just a holiday so no cheering just yet.... can't say i would miss him..... but that's just my opinion Link to comment
sara-pezzini Posted June 22, 2017 Author Share Posted June 22, 2017 The pain is becoming unbearable and i have the electric shocks now and i can't handle those anymore. Meds are at the highest possible dosage and the pain just gets worse so I'm scared something is wrong in there and they have to own it up again. I will call the hospital today..... Tn is hell...... Link to comment
sara-pezzini Posted June 22, 2017 Author Share Posted June 22, 2017 Thank you! I have called the hospital and the doctor can see me Monday! I'm hoping he will know something! Link to comment
Seraphim Posted June 22, 2017 Share Posted June 22, 2017 I hope they can help you Sara! Link to comment
sara-pezzini Posted June 22, 2017 Author Share Posted June 22, 2017 Yes i hope so too! Will keep you all posted..... maybe it's the heat.... but even so.... Link to comment
sara-pezzini Posted June 28, 2017 Author Share Posted June 28, 2017 Okay my update... needed a little time to accept it.... Well basically it's the tumor, it's still there pressing the vein into the nerve so while the surgery was successful, its not helping me yet. The tumor has to shrink first for it to work but the shrinking isn't going fast enough to be able to wait for that. Once the tumor has shrunk my problems will be over but that will be a few years and i obviously can't live with this pain a few years. The pain is just too much, constant feeling of being electrocuted in my jaw...i can't take this... And he agreed so the bad news is we have to treat it again. And while the surgery is the first pick i now have to decide between the other two options, which are both not as good. One is the gasseri ganglion block, which i don't want cause i have read too many people where it went wrong. He even opted to take out the tumor after all but really didn't want to because the risk of facial paralysis is too high and we just need to cover a few years and then the tumor will have shrunk. Ideally he would have wanted to cover it with meds but that's not an option anymore. So now we're going to do an mri first to see if the next option is possible, that is the one with least side effects but there could still be some... So its really bad as well But that's doing the same radiation as last year, the cyber knife, but then on the nerve instead of the tumor... This treatment is very common as well for tn but like i said, the surgery was the best one... But i cannot do nothing... In the meantime I'm getting morphine..... So everything sucks right now and I'm crushed..... Link to comment
Capricorn3 Posted June 28, 2017 Share Posted June 28, 2017 Feel so devastated for you Sending positive vibes and prayers your way. (((Hugs))) Link to comment
Seraphim Posted June 28, 2017 Share Posted June 28, 2017 Oh honey that is so heartbreaking. When are they going to do the gamma knife again? Link to comment
sara-pezzini Posted June 28, 2017 Author Share Posted June 28, 2017 will get the mri in the next few weeks, they couldn't say but it will be rushed and then a talk with the doctor about what i have decided and if that's possible cause that depends on the mri. then it will be a few months waiting i imagine cause the waiting lists are long there, only place that does the gamma knife in Holland..... And then it will take a few weeks to months before you notice results.... so morphine for a good while.... Link to comment
Seraphim Posted June 28, 2017 Share Posted June 28, 2017 Oh honey. I am heartbroken for you. 😢 Link to comment
sara-pezzini Posted June 28, 2017 Author Share Posted June 28, 2017 thank you! Yes i am completely devastated.... Link to comment
sara-pezzini Posted June 29, 2017 Author Share Posted June 29, 2017 Just put on the first morphine patch..... supposed to work in 12 to 24 hours..... Link to comment
Jibralta Posted June 29, 2017 Share Posted June 29, 2017 I am so sorry to hear this. I hope there is a way for you to get better. Link to comment
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