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Living With Facial Pain

Neuro in Houston, Texas


#61

Sure thing…Anytime after 5 is good.


#62

I Cheryl, I just texted you. I hope the number you gave me is your cell and not home phone #.


#63

Update on my 2nd MVD with Dr. Dong Kim. Operation was on 10/15/2015. One of the worse decisions I've made. He did not fix my painful 24/7 twisting movement in my mouth and face. As a matter of fact it has gotten worse and now traveled to my head and ear and behind my head. Sometimes it spreads to the other side, which really scares me. Dr Dong Kim is now wiping his hands clean and said if it traveled to the head then it's not what he was trying to fix. He said he doesn't know what to do with me anymore. I live in constant pain of level 8 to 12 daily. I had to go to the emergency room on Christmas. I need desperate help and no one seems to care. I used to be a very happy and full of life person. Now I'm so depressed and have suicidal thoughts, but my kids and husband need me so I can't go that route. The pain is so unbearable. No meds has helped.


#64

I would contact the Eugene McDermott Center for Pain Management

http://www.utswmedicine.org/hospitals-clinics/outpatient/mcdermott/ I realize its in Dallas several hours from where you live, but they have an outstanding facial pain management team. As you have learned, a very small amount of scar tissue from failed MVDs can cause incredible pain and like most neuralgias are so hyperalgesic because of damage to nociceptors or peripheral nerves, its hard to manage. These guys can. There are also inpatient programs at Mayo and Cleveland clinc as well as my personal Favorite U of Washington.

These types of programs are NOT pill mills and have a 80% - 90% success rate in returning folks to full function and help all if you follow the program..... PLEASE check it out.


#65

I have Atypical TN and thinking about seeing Dr. Kim after a disappointing appointment with Dr. Viswanathan at Baylor. I also have Ehlers Danlos Hypermobility, a genetic connective tissue syndrome that unfortunately makes the presentation of my ATN different.

Dr. Pamela Blake told me my headaches were psychological and refused to review my medical records unless I had neuropsych testing first. Instead I had neuro vision testing which indicated many of the eye/brain issues are triggering my trigeminal issues. Fortunately I can solve these issues with eye PT, but I need to get a handle on the ATN pain to resume eye PT.

I had a glycerol rhizotomy at Hopkins in 2014. This procedure helped with the stabbing pain over my eye. But the burning, swelling, throbbing pain is still there in the V1/V2 area. The pain flares on and off quite frequently. I am also getting a stabbing pain in my ear.

So I guess I am wondering if Dr. Kim is an out of the box thinker? No one knows if I am truly ATN or mixed with migraine/cluster. I do not seem to fit in any IHC category. I already had a C1/C2 fusion for atlanto axial subluxation and cranio cervical instability due to EDS. This surgery took care of my occipital headaches and was a great success. So I really don't think I am completely crazy.

Right now I am seeing a general neurologist since I haven't been able to find a Houston headache specialist. (I live 100 miles from Houston). Dr. Viswanathan only showed minor interest in me after I told him my daughter had a successful occipital nerve stimulator implant.

So any recommendations/suggestions will be appreciated. Thanks!




#66

I have told numerous folks about Dr. Kim and there are only 2 that I have heard that the surgery he did, did not help. When dealing with nerves, I have learned that everyone is different. All I can say is that he gave me back my life. It is a hard decision as to who to use. I will be praying for your wisdom as to which doctor to use.

ModSupport said:

I would contact the Eugene McDermott Center for Pain Management

http://www.utswmedicine.org/hospitals-clinics/outpatient/mcdermott/ I realize its in Dallas several hours from where you live, but they have an outstanding facial pain management team. As you have learned, a very small amount of scar tissue from failed MVDs can cause incredible pain and like most neuralgias are so hyperalgesic because of damage to nociceptors or peripheral nerves, its hard to manage. These guys can. There are also inpatient programs at Mayo and Cleveland clinc as well as my personal Favorite U of Washington.

These types of programs are NOT pill mills and have a 80% - 90% success rate in returning folks to full function and help all if you follow the program..... PLEASE check it out.


#67

Good evening!
I am new in Houston, and I am looking for a good dentist. With this illness I don’t have much teeth left and I would like to save what I can. I would really appreciate help. Thanks