During my second mvd my neurosurgeon did something called “roughing the nerve” which I thought all this time he was saying “rubbing the nerve.” Either way, went I went to go see my new awesome neurosurgeon and explained to him what my other surgeon had done, he just got this look on his face like “oh no, that’s old thought” and said “that doesn’t work, and is probably why you are in more pain now.” My original surgeon works for my new surgeon in the same group! Geez! In one hand I’m kind of pissed that he did this to me, and on the other hand I’m glad to know exactly why I feel like this and that I’m not just a crazy person. I knew the minute I woke up from this mvd that I was in way worse pain. No amount of waiting is going to fix this unfortunately.
The good news is, I’m now in the hands of a rock star, and he is so gentle and caring. For someone who is a neurosurgeon at the top of his game I think this kind of bed side manner is quite remarkable. Not only do we have a plan for my next procedure, but we have already discussed a plan in case I’m one of the few that doesn’t find relief from this either. He has promised to get me relief from this pain. I remain hopeful that this doesn’t have to control my life. Now, just staying positive until my gamma knife on May 6th is going to be the trick!
If anyone in the south is finding that their docs just aren’t doing it for them, or they are running out of hope I urge you to contact Dr. Dong Kim at the Mischer Neuroscience Institute in Houston, TX. He was the doctor that was in charge of Gabby Giffords neurological recovery after she was shot in the face at a political rally. For those of you out of the US she has made a miraculous recovery and even has been able to come back to the senate to speak on gun control.
Awesome neurosurgeon is a good word combo… Yeahhh
I think I mentioned this in another post, but at the end of my visit with him he actually kissed me on my good cheek. Just that small act of kindness broke down so many barriers and took away the “clinicalness” of all of it. I’ve spent over a year and a half in pain and that was the single kindness act I’ve had from someone outside of my family since my diagnosis. It was a moment I will never forget. All in one moment it said “I believe you, I understand, I sympathize.”
Sounds like you have a good doctor there Hcal. Sometimes we can be experiencing the most horrific pain and knowing your doctor validates your pain makes it abit easier. You stick with this doctor he will guide you in the right direction. Sounds like a caring man as well as a good neurosurgeon. Great and womderful combo!
The support , validation, kindness and sympathy is the BEST gift a doctor can give you, truly!
I’m so happy for you,
I know how much that means,
Excited for you that you finally have someone to work with you for your greater well being.
(((( hugs )))) Mimi xx
Thanks for sharing that bit about the kiss. When we receive kindness it it is like a balm that spreads throughout the whole body and restores us. When we get enough of it we can pass it on. This is how real HEALING works. We need more than just the meds and Proceedures. I’m really, truly happy for you, Heather.
Peace and Kindness
Thank you for info on Doctor. I live in Texas area, may need. Daryla
Sounds like a Great doctor with much empathy for his patients. What a difference it makes! Thanks for sharing this.Daryla
I think I mentioned this in another post, but at the end of my visit with him he actually kissed me on my good cheek. Just that small act of kindness broke down so many barriers and took away the "clinicalness" of all of it. I've spent over a year and a half in pain and that was the single kindness act I've had from someone outside of my family since my diagnosis. It was a moment I will never forget. All in one moment it said "I believe you, I understand, I sympathize."
How did your surgery with Dr. Dong Kim went? I realize your post is almost two years ago, but I'm curious. Dr. Dong Kim performed MVD on me last June 19, 2014. Although he got rid of my shocking pain from TN but another issue developed from that surgery. I get constant non stop facial movements and spasm. My upper and lower lips are moving on its own. Dr. Dong Kim said he has never seen this before and wanted to do a second MVD surgery to see what's going on. He thinks maybe the Teflon is touching the facial nerve, but this is just an assumption. I'm really scared and don't want a second MVD. The first MVD left my face completely dead (numb, frozen, rock hard). It took 11 months for me to get feelings back. I'm just afraid other things will go wrong with if go ahead with the second MVD.
You have been through hell...I am so glad to hear you have hope and your Doctor is proactive. Are you on Tegrital?