I'm not sure if all this self doubt is normal anxiety. But, did anyone ever feel like, Am I doing the right thing? What if they don't find anything(Mri didn't show anything) Has some Dr. missed something along the way and it's something else?
I too have the stabbing pains but I also get tooth pain, cheek and nose pain that can last awhile. I don't just always have the stabs. It's scary to think what if they don't find anything or if the pain is not better.
Trying to have positive thoughts but it's getting the better of me!
I had the same thoughts prior to my MVD. I did not have any decrease in my pain but many others do and I do not regret having the surgery because I would always wonder if it would have helped. My MRI showed a vascular loop around the nerve but there were two other areas of compression they found once in there that were not visible on the MRI so just because they didn't find anything on your MRI doesn't mean there aren't any compressions. I don't think they would offer you the surgery if they didn't feel there was a chance it could benefit you. It is hard to balance the normal fear of having any surgical procedure with the desire for wellness but you are the only one that knows if it is the right decision for you. I hope that you find peace with your decision and that whatever path you choose you find improvement. I'd be happy to answer any questions you have about the surgery or anything else! Good luck... -Laura
I wrestled with just that thought before choosing to have an MVD. I asked myself "what if" the surgery goes really wrong and doesn't work, I lose hearing in my ear, I have a CSF leak or some other complication . . would I regret it? I had to weigh that against any regret I would have not having the surgery at all. I decided that I would have much more regret for never taking that leap of faith and having the surgery than I would if it all went wrong. I couldn't live my life wondering "what if" I had had the surgery. I took the chance (with the odds greatly in my favor of course) and my bet paid off - I am 4 1/2 months post op, pain-free, med-free and feel awesome! In fact, I am glad that this all happened in some way. I think I learned a lot about myself, about prayer, about empathy, appreciation, and how much courage I have (that I didn't know I had). Prayers for you!!
Mybel this brought tears to my eyes because thru all of this I too have learned about all the things you mentioned. And I am one of the strongest people I know. I have with stood so much pain and disappointment and I am still here fighting . I just want to feel again. Thank you for your words today I needed them.
Hope seeker I do have a great dr and I believe he wouldn’t do it if he didn’t think there would be some benefit. As it approaches it become s a little overwhelming. How did you feel the first few days?
The first few days I felt really wiped out. It took a long time to get my energy back. I did have some temporary hearing loss which they didn't warn me about. I think I would have been less worried about that if I knew to expect it but I eventually regained all my hearing in that ear. My MVD was last May and honestly, recovering from the surgery was much less of a struggle than simply living with TN. I developed a CSF leak after my staples were removed and ended up readmitted to the hospital. It took about 6 weeks before I could return to work. Even with all of this, and the minimal improvement, I still do not regret going through with it. At least I know I tried. Plus, I think its cool to tell people you've had your head cut open. That pretty much trumps most things and is good for sympathy :) I have lots of hope for you! I struggle with accepting help from anyone so my best advice for after your surgery is to let people help you and be patient with yourself! Also, the more you move and walk around in the weeks after the surgery, the better you will feel. This can be hard when you feel exhausted but I wish I had pushed myself a little more to be more active. I think I would have recovered more quickly if I had done this.
wendyjo said:
Hope seeker I do have a great dr and I believe he wouldn't do it if he didn't think there would be some benefit. As it approaches it become s a little overwhelming. How did you feel the first few days?
Hi, I completely understand…the anxiety and self doubt is completely normal.
I was so riddled with these the day before my surgery, I was vshaking from the inside out. The morning of my MVD, an all encompassing calm washed over me. I wish you the same…
They didn't really give me a reason why my MVD didn't work but my guess is that after close to 9 years of symptoms, the nerve was just too far gone to function normally again. I have learned to be at peace with not having all the answers and just try to make the best of what I have to deal with. I had a great surgeon with experience and compassion and I am confident that he did everything he could do. Nerves are tricky things. I once heard an analogy that it is like you have a heavy table set on a plush carpet and when you move it there is an impression made in the carpet that doesn't just bounce back the moment you move the table off of it. I guess that is why we don't use shag carpet like in the 70's anymore :) Too bad I had them installed in my head and apparently have furnished it with very sturdy furniture! What can you do if you can't laugh about it! I hope you have low pile carpet and cheap Ikea furniture!!!
Just checking in wondering how you are holding up a few days before surgery. Remember - chin up. Positive thoughts. I am now 17 days post op - feeling much better. Energy level still low, slowly integrating my self into daily activity and work. Currently no episodes, just that annoying headache.
If there is a way I can touch base personally with you I am more than happy to have a conversation. Perhaps it wo uld help alleviate some fears.
It's been a little over a week since surgery, and I'm doing good. They did find a vessel kinked up and rubbing. They fixed that. I still have some pain in one of the teeth that I always had pain and a little upper gum pain. I think this all might subside as time goes on. I didn't see your message until today that day before surgery was scary, but I got thru it. Over all I don't feel too bad I am really trying to rest. I still feel things are a bit swollen and that maybe contributing to the gum pain.
I am so happy you seem to being doing well and you are trying to rest. The swollen felling will take some time to go away, I still feel 'a bit numb' on my scalp and the top of my ear. Total recovery, I am told, will take some time. However 3 weeks post op, I am back to work 5 or so hours a day (need an hour nap afterwards), but feel better by the day.
I am not sure how to contact you personally. I am in Philly often. We should make a definite plan to get together and chat - perhaps over lunch - if possible. If you know of a way on the site we can access each others contact information let me know, I have been unable to locate it.
Rest, take a day at a time, and be thankful for the pain free days (or mostly pain free) and eventually decreasing the meds - yeah for that!