That's AWESOME that you'll be drug free by Monday. AMAZING.
My pain didn't completely go away until the other week when I realized that I couldn't remember the last time my face hurt. I just kind of forgot about it. My pain slowly went away over the last few months. I freaked out at first when I went back for my post op appt. 6 weeks later because I was still having some pain, but he told me that that was normal and it would eventually go away — could take 6-12 mo. to completely go away. But it's pretty much totally gone now.
I did have several freak outs in the beginning though — but the longer I'm out of it, the less I'm afraid its all going to come back. I think time heals all wounds in that way. Hang in there and don't be too hard on yourself. There are a lot of emotions to work through, but it will get better!! HUGS, Jess
tinah276 said:
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!
I wanted to post my surgery story as it is so hard to find positive stories about MVD. I so appreciated you Jessica for all your help and info, I wanted to pay it forward. So I posted my diary. Thanks again for all your help, Jessica. God bless!! Keep us updated Victoria!!
PS. Jessica, how long did your insomnia last? I haven't slept for days! (still better than before!)
I think I went like 3 weeks without sleeping and I started taking Benadryl to help me. I finally went to the Dr. and she prescribed Trazadone to get me through the week and then I tried to sleep on my own on the weekends. I have probably only taken it for maybe 2-3 weeks and now I'm off it it completely and pretty much sleep nearly all night every night on my own. I really think it's just your brain sorting itself out again after being on drugs for so long.
Try Benadryl is you need a quick fix, but I am sure your brain will adjust soon as well. I'm pretty much back to a normal, drug free sleeping pattern. HOORAY!
And still no pain for me ... nothing has come back and my depression and anxiety have practically disappeared!
LOVE to you, Jess
tinah276 said:
I wanted to post my surgery story as it is so hard to find positive stories about MVD. I so appreciated you Jessica for all your help and info, I wanted to pay it forward. So I posted my diary. Thanks again for all your help, Jessica. God bless!! Keep us updated Victoria!!
PS. Jessica, how long did your insomnia last? I haven't slept for days! (still better than before!)
Thank you for your diary ,so insperational I don’t know when my surgery will be I have waited three weeks and no appointment the the neaurologist it’s like they think its only TN and that you can wait tyres ring my surgeon but his secretary is out of office I’m going to ring again next week , but thats the uk and our wonderful national health system …it could take 18 weeks for this appointment what a wait, on a positive I have new meds which at the moment are making the pain bearable but don’t know for how long we will see , grat to see you pain free keep recovery , victoria xx
Well, it looks like I spoke too soon. Although my MVD was successful on the left, the pain returned on the right and has gotten severe enough to go back on gabapentin. The left is so awesome. I am glad I did it, but was disappointed when the right started back in. I spoke with the surgeon's office today and when I go in next week for my appointment with the surgeon, I will be scheduling my 2nd MVD surgery for sometime next month. I hate to be down for the summer months, but either way, my summer will not be what I was hoping. God is with me and it will be ok, just not what I had expected. :/
I am sorry to hear that , it is bad enough having pain one side let alone two sides, u poor thing I’ll be praying for you, I rang my surgeon this week and he has only just sent a letter of referral to the neurosurgeon for my second option and that’s three weeks . You will have had two MVDs before I have one I’m so fed up with the waiting I just need it done good luck keep me posted .X
Bless your heart Victoria. I hate that you have to wait so long. It's frustrating when you are tossed back and forth between the dr's. I hope they decide something soon. I know you are ready to just get it done and over with. Just remember, no matter how long it takes, one day you will be pain free. It gives hope to know there is relief in your future. Just got my bill from the anesthesioligist....$2000! Just for the anesthesiologist! And that's after my insurance. Maybe the wait is worth it to not have to pay these bills!! (I don't know, it's a close draw.) :) Good Luck my friend! Praying always!
Oh no Tinah — I'm just catching up on your story, as I've been out of town for the past week. I'm so so sorry to hear that you now have pain on your other side! But, I'm glad you have a plan and you know what to expect. I'm also sorry about the medical expenses. I think ultimately it will be worth it in the long run. Being off of drugs long term, etc etc ... what a mess though. My heart goes out to you.
And Victoria — what a mess! I'm so frustrated for you that it is taking SO long. I'm thinking about you and hoping you can get something scheduled SOON! Don't give up ... if you don't get the answers you want, dig deeper. It's such a pain in the rear, but push them to get back to you. I wish that the Dr. could feel the pain we've been through so they "get it" and understand the sense of urgency you are under.
Thanks Jessica. As far as the bills go, I have already racked up my family out of pocket at $6000, so good news is that for the rest of the year, all our medical bills will be paid 100% by the insurance company. For a family of 7, we can really take advantage of that. All the kids are gonna get dental work done, eye appts all around including new glasses and contacts, etc....Haha! I do still have to pay the 6 grand though...
You are absolutely right, it is worth it in the long run! :D
Gosh that is a lot of money to pay At least I do not have to pick up the bill but then do hav e to wait, I range the nerosureon today but he still had not got my referral letter I am going to ring every day until I get somewhere make a pest of my self , x
You have to be a pest sometimes! I know I have had to be ugly to my surgeons office a couple times to get a call back. I know they might not think its important, but its the difference between a nervous breakdown and a calm day. Keep at 'em Victoria!!
I totally had to get kind of ugly too! What is the deal with that? In the beginning when I was trying to get correctly diagnosed — at the time, they saw a white lesion on my brain so I googled that and facial pain and it came back as MS. I was FREAKING out and my Dr. referred me to a neurologist — the soonest I could get in was like 6 mo. or something crazy. So I called my Dr. office back and said NO WAY. So then they referred me to another Dr., and that was like an 8 week wait. Still not good enough. I emailed everyone I knew in the medical community, friends of friends, etc and a gal I was in a book club with, her husband was a neuro at another hospital I wasn't covered at, but he let us meet with him anyway and he said no MS, but most like TN and called in a favor for another Dr. he works closely with at a hospital I was covered at and I saw her within 48 hrs.
It totally bothers me that really, nobody will advocate for us expect for ourselves and it's SO time consuming, emotionally draining and the only people that can do it — are the patients. I feel for both of you. My heart aches but it will ALL work out. I know it will. HUGS.
Yes Im going to be the biggest pain in the butt… I rang again today , they have got the referral letter but the dr is not in till Friday then he an assess how urgent this is , I’m like how much more urgent than pain like this , if they where the ones who had TN we would all be seen very quickly , and the dr works from three hospitals , if it’s going to be weeks until I see him I will pay private just to get things moving and thank you both for being there for me it’s so nice knowing you are a blog away even though your the other side of the world hugs back
Well, I had my post-op appt today and the surgeon felt everything was healing well. He scheduled my next surgery for June 26. Apparently the fact that I have had Bells Palsy seemed to make him believe that that he feels likely to find more compressions even tho it isn’t as severe as the left was. I hope so. Not looking forward to going thru that again. I told him that recovery was rough the second and third weeks and so he said he was gonna taper the steroids off slower next time. I was off them by day 4 last time. I still dread it, but at the same time I can’t wait to say goodbye to the pain and drugs.
Just reading through this thread. Praying for a good outcome for you Tina on the 26th. All the best for your surgery Victoria,when the dates finally come through, my prayers will be with you also. All the best girls xx
That’s great Tinah so pleased, I rang the dr last Friday and he had only just looked at my referral letter so I have to ring again tomorrow afternoon then if he cant see me soon I’m going to go private as I need this sorted to think you will have had two ops before I even have one , but must look forwards just had a bad week lots of pain keep me posted Tinah and thank you elstep I will let you know how I get on with my phone call tomorrow xx
Bless ur heart! I am praying hard for you to get some peace about this. I Know it can be so distressing when you are at the mercy of the doctor and his willingness to get on with it. I am so sorry that you are having a lot of pain...hang in there. Keep us posted!
Hi Tinah rang the neurosurgen today and have an appointment next Thursday 14th and then rang the surgeon and have an appointment to see him on the 26th so thing are looking up just had to make. Pest of myself to get things moving feel positive again x
Praise the LORD! I am so happy that things are working out! Get at them and let them know they are working for you! I will keep praying that things get moving soon! Woohoo!
