Share your comment - Medical Criteria for Evaluating Neurological Disorders

General General TN & GPN (Old Site)
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I just submitted my comment and my wife is going to submit hers soon. Please submit your comment before the deadline! Also, feel free to share your comment in this thread, or create your own as I did.

Submit comments here: http://www.regulations.gov/#!documentDetail;D=SSA_FRDOC_0001-0692

Thanks to Kismet for helping spread the word on this thread: Kismet's Thread

Here is my submitted comment:

My wife was diagnosed with type 2, or atypical, Trigeminal Neuralgia, about four years ago at the age of 26. It began from a facial infection that started roughly six years ago. Sadly, the infection manifested and the pain became unbearable the day following our wedding. She had been in pain for at least a year prior to our wedding, but her doctors assumed she was simply getting migraines.

She is lucky enough to be on SSD and has been for a couple years now. This is mostly thanks to one of our representatives who is intimately familiar with TN, but many people across the country are not so lucky and are denied SSD for TN. The money and medicaid she receives is far from optimal, but it's been necessary aid for us to not end up on the street and for her to receive the treatment she requires. When I say "requires," I unfortunately don't mean the aid she requires to be pain free, or back to the person she was prior to the infections, but rather, the aid she requires to have not committed suicide by this time.

The road to her getting SSD was not easy, nor was the road to her getting a firm diagnosis. Most doctors are not familiar with the condition, so it's no surprise that people outside the medical profession have never heard of it. It's a terrible disease I wouldn't wish on my worst enemy and I would take the pain from her in a heartbeat if I could. When I read the stories on TN community forums, such as livingwithtn.org, it breaks my heart that so many sufferers across the country are denied the most basic of support provided by SSD.

Please research the condition and add type 1 and type 2 Trigeminal Neuralgia to the Blue Book. Living with an invisible disability is difficult enough. Finding doctors familiar with the condition is difficult enough. TN sufferers certainly deserve to receive SSD just as much as any other person suffering with a disability. Please help them receive the support and aid they require to continue battling against this terrible condition.

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Thank you for sharing your story to the SSA. So far we have six comments posted. I know they manually enter each comment so it takes time (sometimes up to a week).

Good news is they now have the open comment section just by searching for the docket number on the main page. The docket number is SSA-2006-0140.

Let’s get our voices heard!

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I have sent in my comments as well.

Please consider approving claims for Trigeminal Neuralgia, Atypical facial pain and all other occupital neuralgias to your list of approved diseases for Social Security disability. I am a very strong person, living with pain for 24 years, however about 6 years ago I started having the worst pain in my teeth and face. Burning and Electrical jolts, like my face was being struck by lightning. I went to my dentist, my General Practitioner, an Oral Surgeon, back to my dentist to no avail. It was not until I seen my TMJ Dr. that she mentioned Trigeminal Neuralgia. I was very relieved to finally have a diagnosis, little did I know it would change my life negatively in so many ways. I seen Neurologists, Neurosurgeons who prescribed medications that did not help, but I had very negative and adverse side effects to the medicines. I even lost my job of 18 years because my physician would not release me back to work because of my Trigeminal Neuralgia and Fibromyalgia. I will never be able to accept that I used to be someone important where I worked, my name meant something. I was in banking, an expert at what I did and I could not return to the career I worked so hard to achieve for 18 years. The pain was so unbearable I could not eat, brush my teeth, smile, move my cheek, kiss my husband or children, talk, put on make up, without these jolts of pain bringing me to my knees. I talked like a ventriloquist while I had pain. I lost everything I loved. It put such a stress on my family, finances and relationships with family and friends. I could not be social anymore. Gone were the days of getting a phone call and socializing with family and friends. I seen a new neurosurgeon in 2013 and was scheduled for a microvalve decompression (brain surgery) a week later. I woke up from surgery completely numb on the right side of my face, from top of the head to chin, yet very painful. It feels like constant electricity running through my face, teeth, tongue, eye, cheek, mouth, lips, my hearing goes in and out like I'm going in and out of water. Sometimes my face feels so cold and freezerburnt, like someone sprayed canned air at my face and in my mouth, that I cant even drink anything cold or eat a salad. I believe my nerve was damaged during surgery causing me permanent Anesthesia Dolorosa, yet I am facing obstacles in my treatment because my surgeon was arrested one week after my surgery and was recently sentenced to prison. Other specialists I have tried to see will not accept me as a patient so now I am on the waiting list for the Mayo Clinic. I live with this pain every day, it is constant and disruptive. I currently do my best at a desk job but I am not focused, non productive and unable to heal because all of my energy is spent working. I have no quality of life. I get home from work and lay down, put hot rags on my face, cry and sleep, even the tears hurt my cheek. On the weekends I barely get out of bed to shower or even brush my teeth. So many times I've wanted to give up and end it all but I am a fighter. I have never asked for anything I didn't deserve, however this disease is very serious and life changing for those afflicted. I don't know how we get through each day, but by the grace of God. I cannot leave the house without a scarf or something to cover my face, even last summer. I can't have anything touch my face.. tears, or even my kitten's tail when he tries to cuddle. It feels so painful to have anything touch my face. I pray that these facial pain conditions are taken seriously and people are aware of how negatively they impact the patients life. Again, I lost everything. It is so unpredictable, pain can hit at anytime, but for me now it's constant because of my trigeminal nerve being damaged. I look like I've aged so much in the past year since my surgery and have gained a lot of weight. I am unable to exercise and even walking causes pain. I have lost endurance to even walk 1/4 a mile. I couldn't even if I tried. Please consider Trigeminal Neuraligia and related facial pain conditions as part of disability. I should not be working, it's not fair to my employer that I can't function how they need me to. It has affected my memory and I live in a fog most of the time. I can go on and on about how this has impacted my life, and my families life but there isn't enough characters remaining. Medications do not help me, and from what I've been told there is no cure for me, nor any procedure that will help releive my pain. I just wonder how long I can continue fighting. God Bless.