Victoria, my doctor told me that it was routine to have the fiesta mri before the surgery. However, in his experience, he felt that it was really not worth my time and money since he didn't put alot of faith in their results. But it sounded to me like it was pretty routine with other surgeons. I do get pain alot at night, but I think it's becaus fatigue and exhaustion are my triggers. I also get pain above my eye as that is one of the trigeminal branches! It's rare, but it's possible. I have Bilateral and I was afraid the dr would not believe me as that is rare also. I still don't think he believed me, but he was willing to do one side at a time and move from there. I would definitely move forward with a second opinion while you are waiting on your mri. There is just too many unknowns with this beast that dr's can't really state solid definites belong in this category or this one. My dr told me that you should never say "I've seen it all" or "that's impossible" when you are discussing medicine, because there just isn't any absolutes, especially with TN. I am so sorry that you are frustrated with your appointment. I know that the nerves leading up to the appointment are killer. I will pray that they get you squared away soon. Keep your chin up, you are not alone. :D God is good.
Tinah and nonchiaro thank you both , I was begging to think that it wasn’t normal to have the pain at night but know I feel it is normal I’m sure I’ve read somewhere else that you get pain at night to and my normal dr never said differant , so does my surgeon rally understand my condition I do wonder , I am looking into a second option but will get my MRI scan first… So glade I have you all for support it really does help and I feel so much better
Xxx god is looking after me I know x
Ok, Jessica, another question for ya. I was gonna message you personally, but thought maybe others might need the same info. What did you pack for the hospital? Was there anything other than the normal toiletries and stuff that you were glad to have or something you wished you had packed? Also, what is involved in pre-op? I know this is weird, but I am curious, do they give you an enema? I am more worried about that then the hole in my head! haha! they told me to not eat or drink anything after midnight, but then they told me it was ok to take my pain meds that morning before surgery....um, how do you do that without water? Anyway, thanks so much for hanging in there for us!
OOOH good question! For the pre-op appt. they took blood and asked me a million health questions and told me what to expect the next day at surgery. The night before, no food 12 hrs before surgery and no water 8 hrs before I think. But they'll tell you those timelines for sure. Make sure that you hydrate, hydrate, hydrate — drink as much water as you can right up until you can't.
The morning of I took a shower and I wore Ugg boots, sweatshirt, yoga pants and yoga tank — no bra or panties. Less stuff to worry about. You can't put lotion on your body or face. No nail polish on your fingers or toes. And then I brought my license and insurance card as well as my glasses case and night guard and that was it. They gave me a bag that I put my clothes and shoes in to and I put on a gown and socks. When I woke up that bag + glasses + mouth guard where in my room and they stayed with me the entire time. I had my husband bring up my computer and such, but never even opened it up. I also had him bring up face wash, lotion, toothpaste/brush, etc and I never used any of it. I didn't bath until the day I left, an aid helped me and I just used everything that the hospital provided — soap, toothpaste, etc.
I went and got my hair done the day before, waxed and got a mani and pedi — but then I found out that you can't have nail polish on.
OH yes you can take your meds when you normally would but you just have to use the least amount of water possible and remember what time so that you can tell the Dr. I never found out what time my surgery was until the afternoon before. I had to be at the hospital at 11am and I think my surgery started at lik 2pm. I did get hungry when I was waiting around, but it seemed like by the time I woke up, got ready, got to the hospital, things seemed to move pretty quickly.
Let me know if you can think of anything else!!! HUGS!! Jessica
tinah276 said:
Ok, Jessica, another question for ya. I was gonna message you personally, but thought maybe others might need the same info. What did you pack for the hospital? Was there anything other than the normal toiletries and stuff that you were glad to have or something you wished you had packed? Also, what is involved in pre-op? I know this is weird, but I am curious, do they give you an enema? I am more worried about that then the hole in my head! haha! they told me to not eat or drink anything after midnight, but then they told me it was ok to take my pain meds that morning before surgery....um, how do you do that without water? Anyway, thanks so much for hanging in there for us!
Hi Tinah,
Good Luck.
I don't have a pre-op suggestion other than those covered by our supportive power of example, Jessica. I wish they had a "like" button for our comments on this site because each time I've read a Jessica comment, I've wanted to "like" it. I even tried to send a message once saying, "you're real nice J" but was estopped by the need-to-be-a-friend thing. So...(blush)... I guess I said it here.
I do have a pre-op suggestion for you to your husband, that is: to listen very very carefully to the Dr. after the operation when and if he meets your surgeon in the recovery room. If there is an aspect of the Dr.'s comments that your husband doesn't understand, ask the Dr. to repeat himself as often as it takes. Perhaps, depending on the Dr.'s patience, even ask your husband to offer a summation, something like: "Dr., thanks so much for your patience explaining this to me. I know your words will be very important to Tina when she awakens. Just so I know I've gotten what you've said correctly, may I try my own words?"
My sister was in the recovery room for me and she received an insight from my Dr. on how my operation went. Her recitation buoyed me. I would really have been at wits-end had I had to wait another 28 hours to see him for the first time, wondering what had happened...how it happened...thumbs up, medium or otherwise. Mind you, I would have eventually found out but I know my sister's paraphrasing helped soothe my soul.
Good Luckissimo Tinah.
Hi Jessica. Just to let you know I had a letter from my surgeon and he thinks he can see the vessel over the nerve , I am to have another MRI to comfort this but have the appointment for 25 th April and an appointment the week after to see him again, this is so positive , this is my hope of getting pain free, you have been such an insertion and help which is great , how are you feeing ??? Hope the pain is still at bay, I’m petrified of the op as I know the risks but feel they out way the thought of being pain free , and I’m thinking positively and this will help me get better and have a better quality of life , I may have questions for you again before the op if that’s ok with you , thank again keep in touch
Victoria xx
That’s wonderful! Praise God! I know you r nervous, but as time clicks on you will find your peace. I will be praying and thinking of you on the 25th and here’s hoping the end is in sight for us both!!
I have been having some trewmendous pain the last few days, but the countdown is on and I am keeping positive. ;D
OH Victoria that is SUCH great news!! I'm so delighted for you. YES, I'm still feeling great ... I have an occasional minor little something but it's not even pain, it's just a little feeling now and again. I'm 100% tegretol and lyrica free! I haven't taken a pain killer since my surgery. AMAZING. I feel like a better version of my old self. I am so much happier, I feel so much less depressed. My friends and family have really noticed the positive changes in my attitude and energy levels.
One thing that really helped me keep it together when I would get overwhelmed with the "idea" of surgery — I would think about how there are pro's and con's with everything in life. For example, a flu shot ... the pros of a flu shot outweigh the cons. That really helped me feel better ... the pros of surgery greatly outweigh the cons. My surgeon told me that statistically speaking, in my great health, my age, etc etc etc the risk of anything bad happening was less than 1%.
I am SO excited for you both!!!! Keep me posted!! HUGS
Well, Hello, everybody. I am leaving tomorrow for my big day. I am not worried or nervous ( which is weird, for me) but am almost excited as I am ready to be done with this nonsense. I cannot believe the support that has poured out for me in the last few days. Amazing. I will be glad to get it done. The meds cause me to have really bad insomnia, so I am looking forward to the sleeping! I will try and keep this thread updated as to how things go. Victoria, let us know how your MRI goes this week! I will be praying for good news!
Wanted to say also, Jessica, you have been so wonderful to share yourself with us. When I start to get anxious or worried, I re-read this whole thread and always feel so much better. Thank you thank you thank you!
Hi tinah
i would like to wish you all the luck in the world i will be thinking off you... i will also keep you posted as to my outcome , the sooner i have the op if i can the better as the pain gets worst each day and the meds only hold back serviere attacks,, please keep me posted as to how it all goes and I have a good feeing you will be fine
lots of love a big hug and may god watch over you
victoria xx
Thinking about you Tinah!! I'm glad you aren't feeling anxious ... it's going to be GREAT! Keep us posted. I'm SO THRILLED for you. I am still feeling great. I am sleeping better, but still pain and drug free ... I feel like new person. I can't wait for you to feel the same. HUGS and cheers to a speedy recovery!!!! XOXOXO
tinah276 said:
Well, Hello, everybody. I am leaving tomorrow for my big day. I am not worried or nervous ( which is weird, for me) but am almost excited as I am ready to be done with this nonsense. I cannot believe the support that has poured out for me in the last few days. Amazing. I will be glad to get it done. The meds cause me to have really bad insomnia, so I am looking forward to the sleeping! I will try and keep this thread updated as to how things go. Victoria, let us know how your MRI goes this week! I will be praying for good news!
Wanted to say also, Jessica, you have been so wonderful to share yourself with us. When I start to get anxious or worried, I re-read this whole thread and always feel so much better. Thank you thank you thank you!
I am in ICU waiting on a bed to open in a reg room. I had a successful MVD. I had 2 arteries and a vein pushing and squeezing against the nerve. He cauterized the vein and padded the arteries. The fist 5hing I noticed was m6 trigger is gone. I cried. I appreciate stevens post on here and tolf the anesthiologist about my motion sickness and being sick after epidurals and he gave me some drugs to prevent it. So far I am not nauseas or have I thrown up. I do have some double vivion from the meds but that should go away once I get solid food in my tummy with my meds. It was not nice coming off the anesthetics I thought I was dying. But I have slept alot and so the hallucinations and shaking have gone away and I am back to being me. I will be glad to get rid of headaches and double vision right away! I will try and keep you updated. Victoria, good luck with your mri. Praying for you tomorrow. 
I am in ICU waiting on a bed to open in a reg room. I had a successful MVD. I had 2 arteries and a vein pushing and squeezing against the nerve. He cauterized the vein and padded the arteries. The fist 5hing I noticed was m6 trigger is gone. I cried. I appreciate stevens post on here and tolf the anesthiologist about my motion sickness and being sick after epidurals and he gave me some drugs to prevent it. So far I am not nauseas or have I thrown up. I do have some double vivion from the meds but that should go away once I get solid food in my tummy with my meds. It was not nice coming off the anesthetics I thought I was dying. But I have slept alot and so the hallucinations and shaking have gone away and I am back to being me. I will be glad to get rid of headaches and double vision right away! I will try and keep you updated. Victoria, good luck with your mri. Praying for you tomorrow.
I was stuck in icu now for 3 days b/c there are no reg rooms open. Nurse just came in and said they were sending me home. (To hotel actually) I feel grezt except for mild headaches and really bad double vision. So so glad I did this. I just never believed I would be rid of pain!
All of this sounds like great news!! Headache and double vision should all go away soon ... I'm SO HAPPY for you!!! Rest and relax and keep us posted!!! HUGS
Hi so glade things are going so well . Makes it les scarry. Haven’t been able to get on here as Internet has not been working , I saw my surgeon and he can see a vessels pressing on th nerve but it’s not in th typical place so wam
NTSC me to get a second opinion brow operating , I feel like. Tennis ball being batted from one see to the other. On a positive my new meds are dulling the pain, but I am sleepy. Confued as with the other med I have taken… Hope you are still doing well Jessica and Tinah keep going rst nd gt better been thinking of you hus
Gs to from mexx
Jessica…HELP! I am having a freakout day! I woke up this morning with burnong pain thru my temple and cheek bone. Thats not even where my trigger was before. I cant seem to get my surgeons office to call me back. Was this for nothing! I am trying so hard to be positive, but i have been losing it all day long. I keep wondering if this is that dolorosa thing. Its not twinges or shocks, just constant burning pain. I am weaning off oxycontin and my gabapentin. My husband keeps telling me tyat its bc of that. Anyway, was hoping you might have had some experience with that? Thanks.
I started feeling a new burning pain in Oct./Nov. of last year. It was awful — just a dull, aching, burning pain. But it was INTENSE and crippling. And sometimes my face would swell up ... it was isolated to my jaw.
THIS IS A TERRIBLE photo of me but it was like 3am and I wanted to snap a pic of the swelling.
Anyhow, the only thing that helped me were ice packs. It totally calmed the pain and I got to the point where I would keep emergency ice packs in my purse and I could pop them open in situations when I wasn't home.
Have you tried ice? I know some people liked heat, but heat only made it worse for me.
My Dr.s really didn't have any answer for the burning pain nor the swelling, just that it was Atypical pain. Nothing would bring my burning pain on either, it just would happen and it was hell, so I feel you. The cause of it could very well be because you are weaning off of drugs and your nerve is just sorting itself out.
Try ice? Keep me posted. I'm so sorry. HUGS, Jess
tinah276 said:
Jessica....HELP! I am having a freakout day! I woke up this morning with burnong pain thru my temple and cheek bone. Thats not even where my trigger was before. I cant seem to get my surgeons office to call me back. Was this for nothing! I am trying so hard to be positive, but i have been losing it all day long. I keep wondering if this is that dolorosa thing. Its not twinges or shocks, just constant burning pain. I am weaning off oxycontin and my gabapentin. My husband keeps telling me tyat its bc of that. Anyway, was hoping you might have had some experience with that? Thanks.
Keep in there Tinah , I have had this kind of pain it’s not nice unlike Jessica I use heat pad which worked for me and it does take time for the nerve to sort its self out that’s what the surgeon told me he said I would need I be on the drugs for a few oaths after the op if I have it ,… Big hugs victoria x
I just got off the phone with the surgeon and he said it was just the nerves coming back awake from all the drugs that I was on. I will be completely off all meds this Monday. Praise Jesus! I was having a complete nervous breakdown yesterday. I have had a rough recovery. I didn’t expect all the problems that hit after the surgery and when the pain came back I totally just freaked out. I realized this morning that it was gone. Then it showed up again half way thru the day. I guess that means that it is starting to flicker back on. At any rate, thanks for your thoughts girls.
Dang Jessica, that looks really painful! Aren’t you glad its all over? Do you still live in anxiety worrying tat it will rear its ugly head again? I am scared to death that it will come back. Victoria, keep us posted! We are all pulling for you. Ready to see you on the other side!