Sharing a story

So whether anyone cares or not I wanted to share a story that made me feel so good…Tuesday I was suppose to get my second nerve block at 9 am. Monday they called me to tell me they were canceling and wanted me to wait a few weeks because of insurance issues I was upset but said OK. The more I thought about it I said to myself no I don’t want to wait so I called first thing Tuesday and told them that. They said they could fit me in at 330. I’m in the packed waiting room of my pain management Dr who I would say deals with 98% back pain patients. The girl to my left ask me if I’m here for physical therapy I say no. She goes on to say she thinks she’s getting an emg ( I think that’s what its called) and she’s not sure what it is…she said she had back pain. I told her I think they are going to put some kind of needle in your back to determine which nerve. She’s like omg I’m not doing that I’m not having a needle in my back. I tell her look I’ve had a needle in my face and if I can have one in my face you can deal with one in your back. She asks what’s wrong with me. I say trust me your not going to have heard of it its a rare facial disorder . before I can even get half way threw saying that the lady to my left who is probably around 50 starts freaking out she’s like omg no way no way no way do you have trigeminal neuralgia?? As soon as she said that I swear to you my heart stopped. I’m like yessss oh my lord do you??? She says yes! One minute into speaking they call me back for my block. I tell the nurse and the Dr I have to talk to that lady out there. After my block I’m still laying there and the Dr has the lady come into the room. He knows how scared and worried about everything I am. The first thing he says is tell her she’s going to be OK. It was like god sent me an angel. I start to tear up and she hugs me. They said we could go into the conference room and talk. I could have talked to her for hours I swear. After about thirty minutes they come in and say they need her for her apointment. We spoke of drs we had seen our medications etc . she said the medication that helps her the most is nortriptalyn ( which I had just started) she’s also type 2 like me and she had her first block by the Dr three months prior that helped her tremendously. It was like I was in the twilight zone sitting side by side with someone just like me. She also mentioned shed been suffering for six years. We exchanged phone numbers and have been texting. Was it a coincidence my apointment time was changed? I think not I think it was all meant for me to meet that ladym I left with chills as I sat in my car…god works in mysterious ways. :slight_smile:

Yes, Jennifer, I see you get it! You two will probably become great friends! The same thing happened to me -- I realized that God knows what's going on, and he placed people in my path who knew my neurosurgeon who treats this awful thing we have ... And I found out ANOTHER person at church has had a different contact with my neurosurgeon. Years ago, my friend Marlee was called because her dear friend had had a brain aneurysm and was in the hospital. Marlee was listed as next of kin for this woman and the neurosurgeon called her to come to the hospital immediately. She said that she had never met a more kind and compassionate doctor in her life. When I told her that I was seeing the same neurosurgeon, she told me that I was in the most gifted, compassionate, and capable hands when it came to my brain. After being at first a little taken aback by some of the things I had recently been told, I once again felt His peace knowing that other people had complete faith in this neurosurgeon to do his best to see me through.

When I was in hospital the 2nd time, infection after my MVD, i met someone who was in for gamma knife, the first person I had spoke to face to face who had experienced it, it was brilliant. such a connection straight away. That shared experience that is so uncommon. The fact that someone knows what you are talking about, someone who genuinely understands the pain we experience. I have asked my dr's, gp, pain management, neurologists, neurosurgeon etc if there were any sort of support groups or anything near me in manchester and nothing doing. it would be of much benefit to us to share our experiences and successes. that was very good of your dr to bring in the other lady to reassure you, that must of been of great help to you. i wish any of the drs i had seen had even a tiny bit of compassion or empathy for what we go through, only one of them has actually been of much use to me some of the ones i have seen have almost accused me of making it up, i have come out thinking im losing my mind. have given up on drs for now, my surgeon has discharged me until a year has passed since my mvd as thats the healing time and said all the pains im experiencing now could be part of the healing process so i feel i have been cut adrift. got my back up so i will just go it alone for now. are the nerve blocks having any affect as of yet? have you kept in touch witht the lady you met at your drs?

Borris yes we have been texting we exchanged numbers! As far as the block the discharge papers say the steroid takes 3 to 5 days to take effect. I’m on day 3 . I’m going to give it until Monday to make a call. The lady I met though said hers worked great. I think everybody’s bodies respond differently to these things. Just like certain meds work great for some and not for others . I would say if you can find a Dr to do give it a try . it takes thirty seconds and your fully awake. My gp actually by coincidence has type 1 but she is in remession for what ever reason. She’s never had any procedures done so its nice that she FULLY understands. When I see her she almost Cry’s for me.

I have had a couple of encounters like this. The first was at my neuro where I met a lady with TN--now he is a facial pain specialist so that is probably not a rare occurance in his office. It was her reaction that was amazing though. She started balling. She was newly diagnosed and had never met anyone else with it. I could see such relief in her eyes as we were talking because for the first time she wasn't alone and didn't feel so nuts about her symptoms.

The second was at work. I work for a townhouse development company. I was having a very painful day and I was speaking with a lady that lives there. I started telling her that I have a rare nerve disease in my face and she is like not Trigeminal Neuralgia? It turns out her sister and her daughter have it. I couldn't believe it.

In the two and a half years I have had this I have met five other people locally that have TN. Pretty strange really because the area I live in isn't highly populated.

Nothing can compare to talking with another TNer. They truly are the only people that get it.