Hi everyone!
Well after two years of trying everything “under the sun” and going to at least 60 doctors of all fields eliminating one thing after another (no one wanted to diagnose me with TN due to my symptoms, age, and because of a few other factors) I finally scheduled to have the MVD surgery. I truly have gone thru other procedures, physical therapy, chiropractors, tons of meds (currently taking 40 pills a day which have helped pain level finally but have no quality of life still), nerve injections, trigger point injections and so much more! My main problem I kept having was doctors (neurologists) shutting the door on me. They were not willing to help me at all. I would get so upset and just didn’t understand this until I realized it was because they didn’t know what to do with me because of their lack of knowledge about TN. I, also, believe it was Gods way of leading me to the right doctors. I finally found the right neurologist for me and pain management that have helped me so much! The neurosurgeon says it is now time to have the MVD. that I have tried so much and this is really my last option unless I want to keep on taking the meds like I am but not being able to function still. So I will be having surgery July 31st.
Is it normal to feel scared but say I feel at peace too? If you had the MVD how did you feel before? I have cried a lot even though I know this might be the answer I’ve needed for a long time. I know it’s not guaranteed but it might be Gods way of healing me thru the surgeons hands. I’m worried about the recovery. Can you tell me about what you felt like right after surgery, the week after surgery and so forth? Please don’t sugarcoat it. I would rather you be honest about what I could be facing. Is it normal for my emotions to be running so high? Also, it’s not to be negative but one never knows what God has planned and something could go wrong in surgery. Did anyone plan ahead with a “will” or anything like that? Thank you for reading. I’m a basket case. I have been in such horrible pain for so long I excited about this as well because I’m just hoping this is the answer! I can’t wait to be “pain free & med free!” Oh what a day that will be!!! Please help give me any advice you have. May you all continue on with your journey of getting a pain free life. God Bless!
I was extremely calm but I decided I wanted to give MVD a I could find a neurosurgeon who was an expert at TN and agreed it was the right thing to do at least a year ago so I have been contemplating this a long time. I just had MVD July 11th.
I was completely at peace with my decision because my husband supported it, I had a great doctor (Dr. Casey has either assisted Dr. Janetta or performed alone over 10,000 MVDs), and I did a lot of praying. I'm not extremely religious but grew up going to church and it really seemed to help me trust the doctors more and feel that I was making the right decision.
I decided if it didn't work I may try something a little destructive (nothing drastic) but I had to try this first.
I also wanted it early (only had TN 2 years) so I had the best chances of a successful outcome. I have TN 2 with a little TN 1 starting and Dr. Casey seemed to know exactly where to look for the compressions after I explained where it hurt. Now my TN1 is gone and TN 2 is better but I still feel it some. My nerve was quite damaged and gray colored so it will probably take some time to heal.
So my advice is to research your surgeon and make sure you are very comfortable with them, reach out to your support system if you have one - good friend, relative, spouse, etc. and f you have a faith, rely on it. Also check out the posts on this site and the MVD group. That helped me tremendously too. I felt I knew so much about MVD that I had very few questions. Type MVD in the search above and you will see a ton of results.
Sorry for going on and on.....hope this helps.
Nikki, I feel the same way you do.I’m scheduled to have an MVD this Wed., pending insurance approval. I am scared too, but I pray that God will heal me through Dr Caseys hands. I will keep you in my prayers.
Kathy I will be praying for you! This is such a horrible illness and I know you are ready too to be free of the pain and medications. Please let me know how you do and any tips you might can give are appreciated. I know you may not be able to right away but only of you can. I have heard so much about Dr. Casey and I hope I do not regret having another doctor do my surgery. I know Dr Casey is one of the best but he is so far away from me and its so hard with a family of five to make it all work. I feel confident in the surgeon I have though. He only specializes in TN and does multiple MVD’s a month. I know it’s such a hard decision to make but I am ready to have this done. Nothing else has helped me. May God be with you. May He comfort you and take away any fears you may have. I will be praying for you on that day. I pray it will help you 100%! God bless!
Thank you Deej for your encouragement. I, too, totally rely upon God for all things and thru this I have been on my knees weeping and praying He lead me and guide me on what to do and where to go. I have read and researched so much and I know Dr. Casey is one of the best but I feel like God has led me to another Dr that isn’t so far away and perfect for my family. I feel confident in this surgeon. I asked him every question in the book. He never got offended and he does multiple MVD surgeries a month and only specializes in cranial and TN was one of his specialties. I am praying this is exactly where God wants me for sure! It is such a hard decision but I have tried so many other options for two years now and I am like you I do not want to do any more damage and have it done early. I am 36, married 17 yrs, with 3 daughters (16,14 & 12). This illness has stolen everything from me. I have not been able to be the mom I’m suppose to be or the wife I’m suppose to be. I haven’t been able to work or even drive. I am ready to be free. I know God uses the surgeons hands to heal and I know in my heart this is what I’m to do. Anyways…I can go on & on as well but thank you again for your reply. If you would be willing to share any other detailed information like how has your recovery been and are you still seeing positive results? Anything you would like to share is appreciated. I will add you to my prayer list! God bless you & yours!
Deej said:
I was extremely calm but I decided I wanted to give MVD a I could find a neurosurgeon who was an expert at TN and agreed it was the right thing to do at least a year ago so I have been contemplating this a long time. I just had MVD July 11th.
I was completely at peace with my decision because my husband supported it, I had a great doctor (Dr. Casey has either assisted Dr. Janetta or performed alone over 10,000 MVDs), and I did a lot of praying. I'm not extremely religious but grew up going to church and it really seemed to help me trust the doctors more and feel that I was making the right decision.
I decided if it didn't work I may try something a little destructive (nothing drastic) but I had to try this first.
I also wanted it early (only had TN 2 years) so I had the best chances of a successful outcome. I have TN 2 with a little TN 1 starting and Dr. Casey seemed to know exactly where to look for the compressions after I explained where it hurt. Now my TN1 is gone and TN 2 is better but I still feel it some. My nerve was quite damaged and gray colored so it will probably take some time to heal.
So my advice is to research your surgeon and make sure you are very comfortable with them, reach out to your support system if you have one - good friend, relative, spouse, etc. and f you have a faith, rely on it. Also check out the posts on this site and the MVD group. That helped me tremendously too. I felt I knew so much about MVD that I had very few questions. Type MVD in the search above and you will see a ton of results.
Sorry for going on and on.....hope this helps.
I have a complete account of my surgery in the MVD group if you'd like to look for it there. I plan to update again there on Thursday at 2 weeks when I get my staples out.
I have to say from what I have read of other people's results and recovery, so far I am doing great. Still have some pain, especially when I lay down and I have to remember to take it slower so I don't overdo it.
And Dr. Casey is certainly not the only qualified surgeon in the US. I am glad I chose him but I can understand how it would be difficult for you to travel so far away from your kids. As long as you feel confident in your surgeon, I would agree you are making the right decision. Let us know as soon as you are able how it goes on the 31st.
I will definitely look up the MVD group. I have read Dr Casey’s book as well as researched as much as I can. I have peace with it all but I’m still a little scared. Lol. It’s such a major surgery and I think I’m more scared of the recovery than surgery. But I have a HUGE support group of parents, 8 siblings, church family and lots of friends. I know this will be a blessing. So once I get home I will be ok. Again, thank you for all of your insight. It has been helpful and yes as soon as I’m able to give an update after the 31st I will. God bless!
Also, can you tell me where to go to find the MVD group?
Deej said:
I have a complete account of my surgery in the MVD group if you’d like to look for it there. I plan to update again there on Thursday at 2 weeks when I get my staples out.
I have to say from what I have read of other people’s results and recovery, so far I am doing great. Still have some pain, especially when I lay down and I have to remember to take it slower so I don’t overdo it.
And Dr. Casey is certainly not the only qualified surgeon in the US. I am glad I chose him but I can understand how it would be difficult for you to travel so far away from your kids. As long as you feel confident in your surgeon, I would agree you are making the right decision. Let us know as soon as you are able how it goes on the 31st.
Under the groups tab above : )
But realize there are out of proportion -- in that group the bad stories probably outweigh the good.... the good have flown the coop for now!
Thank you KC. I know not to believe all I read. I’m sure there are some horror stories. I may just stay away from the negative for now. Thanks for telling me.
I was terrified beyond belief. I was also counting the days - like christmas. I had nightmares that stirred on anxiety throughout the day.
I told my wife to not let me change my mind. I kept wanting to stop and change my mind. I never did, or attempt to, as the idea of getting rid of this pain brought me to tears.
Let me tell you - it is perfectly normal to be scared and at peace. That is what I would say.
Smash
Nikki,
Thank you so much for your prayers and kind words. I am sorry I didn’t reply earlier but I have been consumed with fighting with my insurance company as they denied my surgery 2 days before it was scheduled to happen.
I will be praying for you and your family this week. You sound so much like me, TN has taken my life away and I want it back. You have done your research, you know and trust your doctor, now just let God work through his hands. Sounds like you have an awesome support system in place!!
Soon you will be on the road to recovery! Look forward to hearing how you are doing.
Kathy
Nikki said:
Kathy I will be praying for you! This is such a horrible illness and I know you are ready too to be free of the pain and medications. Please let me know how you do and any tips you might can give are appreciated. I know you may not be able to right away but only of you can. I have heard so much about Dr. Casey and I hope I do not regret having another doctor do my surgery. I know Dr Casey is one of the best but he is so far away from me and its so hard with a family of five to make it all work. I feel confident in the surgeon I have though. He only specializes in TN and does multiple MVD’s a month. I know it’s such a hard decision to make but I am ready to have this done. Nothing else has helped me. May God be with you. May He comfort you and take away any fears you may have. I will be praying for you on that day. I pray it will help you 100%! God bless!
I was scared and nervous too I told myself If I do not to it i would always wonder if it would have worked sounds like you are confident in your surgeon and that is important.. my thoughts and prayers are with you
Andria