At A Loss

Hey ya'll. It's been a few months since I've shown my face on the forum for TN. I had a second MVD surgery on June 10th to remove both scar tissue and another artery from around the nerve. I was in Neuro ICU for 3 days and 2 more days in general care. Everything had been going pretty well until recently. I have had a hellova flair up and its been so painful and agonizing that I have had to frequently miss work (I'm a teacher). I get the frustrations my bosses have had but there is little I can friggin' do in ways of dealing with the TN. I've tried to get with my neurosurgeon again to find out just what to do but it feels like he is simply brushing me off at this point because there is nothing touching the nerve. I get it. He wants no more surgeries - But what happened to them fighting this with me until I no longer suffer? I am being passed on to a regular neurologist and pain management (which we've been down this road multiple times). I'm getting sick of this and frankly and on the last straw and about to seek out a surgeon who is willing to just cut the damn nerve. This is no way to live and I'd rather deal with a droopy face rather than bursting into tears every time I brush my hair or teeth.

Sorry, this was mainly a rant. I just needed to vent because I just don't know what to do anymore. I'm broken and shattered and can barely go through my day without falling a part. I am almost to the point of seeking out disability because I am missing so much work. I just don't know what to do anymore...

I don't have a lot of wisdom for you. Neuro surgeons have very large egos and to have a procedure fail I imagine is very difficult for them to sometimes face and they would rather get rid of the problem by passing it on to someone else to deal with. I have to put myself in your shoes and ask," what would I do?" I think faced with what your going thru I would seriously look for a neuro surgeon that would give me the answers as to why your having the symptoms your having and once that was diagnostically determined, whether it be another mri/mra or whatever means, I would set a game plan on what can be done to correct it. I am going to give you a name that I felt was one of the most recognized neuro surgeons I could find. His name is Michael Alexander at Cedar Sinai Hospital in Los Angeles. I felt totally confident with him and my research pointed me to him especially him being one of the few surgeons using the minimally invasive endoscope to get into the site of repair. Keep in touch my friend. My prayers, thoughts, and heart-felt best wishes for you go out from here in North Idaho.

Jay Carpenter

I'm so sorry you're going through so much pain at the moment. I have had two MVDs which didn't work but at the moment meds are keeping pain under control. Have you gone down that road again? I have a feeling that neurosurgeons don't want to know if their work has been unsuccessful. I too feel as if I'm being pushed away by mine.

I too have had a lot of time off work over the last few years but I am lucky that my employer has been understanding. So far!!!!

I hope you find another neurosurgeon that can help.

Its good to rant now and then.

Sending you healing thoughts.

Thinking of you sweetie and sending you ((( hugs ))) and hope that things will get better for you. Missed seeing you here…know that I understand, you’re not alone, not much comfort I know…((( hugs ))) Mimi xx

I hear stories like this, and I just want to go up and give my neurosurgeon a big hug. I do not know what I would do it he ever said he would not help me again. Thankfully he told me yesterday I am his favorite patient and he would always be there. How far do you live from Portland, Or? I know Dr Raslan would not agree to cut the nerve, but he is open to thinking out side the box.