Roberta Berk

Her Personal Story

I would like to share my story with you. It all began in 2001. I started to have pain around my left jaw. It appeared to be coming from a bottom left molar tooth. I saw my dentist and had a root canal procedure done. I am sure it is starting to sound familiar to those of you who are reading this. It was a while before the cap was placed permanently over this tooth. This was to make sure the pain went away. The pain did disappear for few months. Over the next several years I would see my dentist because I had this mysterious pain that would come and go. It was always in the same area. My dentist prescribed 800 mg of Motrin 3x a day and for the time being it worked.

But everything changed in 2004. I started getting short electrical shocks and intense pain and then it would disappear again. My dentist thought it was TMJ and fitted me with different mouth guards, hoping this would help. Well, it didn’t. Then I started getting a strange rash on around my eyes and the left side of my face was hot and burning. I felt I could fry an egg on my face. My PCP started getting very worried because my white blood count was getting too low and he thought it might be Lupus. This started me on a round of many different specialists. The specialists included a Rheumatologist, Hematologist, (he did a bone marrow biopsy), Dermatologist and Allergist (because of the rash), an Oral Surgeon (because of a strange spot on my tongue, he did a tongue biopsy) and Neurologist who was no help at all. I kept asking all these so called specialists, “What is this horrible electric shock-like pain I was feeling??? “Was it Tic-Douloureux”?  For the past years I had always worried it was Tic-Douloureux, because my mother had suffered with it for 30 years. However, I always got the same answer: “No it is not heredity”!  Of course I wanted to believe them. Who would want Tic-Douloureux! Soon at times it became hard to talk, brush my teeth, touch my face etc. The frequency was becoming closer and closer together. In July of that year, I noticed a lump under my left jaw. I went to see an Ear, Nose and Throat Specialist. (Surprise, surprise after a biopsy it proved to be negative). Just like every other test I had taken before. In August I underwent surgery to remove the gland that was supposed to be the reason for this terrible pain. Several weeks after the surgery, my ENT specialist sent me to a Neurosurgeon and he agreed that the incision was healing properly and he confirmed that I didn’t have TN. Of course not, it was in remission and the Neurontin he had prescribed after surgery was working, 300 mg @ 3 x day.

In 2005, I was let go from my job. Was it because I had to take so much time away from my job, or my age? I will never know. The pain came back even stronger.

I started my own research on the internet. On the browser Google I started my research on ”Pain in My Face”.  A fund of information came back to me. I discovered the TNA website. Finally I found my answers. I learned about Trigeminal Neuralgia which was another name for Tic-Douloureux. Now I was armed with the ammunition I needed and went back to my PCP. He sent me to another Neurologist. It took over 4 years to finally get an agreement to my original fearful diagnosis. No one had listened to me. This Neurologist had to keep on increasing my meds because of the severity of the pain and its frequency. Now I was taking Trilepital 150mg 5x @ day, Lamital 25mg 2x @ day and the side effects were making me sick. At this point I had to come to a decision. I couldn’t live with this horrible pain. My Neurologist and I agreed that the Gamma Knife procedure would be the best way to go since it would be the least invasive. 

On November 2, 2006 I had the Gamma Knife Surgery. The pain afterwards seemed to be worse than before. It took 7 weeks before I started to get some relief from the procedure. My Neurosurgeon kept telling me wait, each person is different. Well I waited and waited. Now my meds were Trilepital 150 mg 6x @ day, Lamiltal 25mg 2x@day. My PCP was getting worried. During all this time my PCP was taking blood tests to monitor my blood levels. In late December after the surgery my sodium level was starting to get to low. He advised me to start cutting back on the Trilepital.  On December 29 I was rushed to the ER with a very strange hot rash. The Doctor in the ER told me it was an intense allergic reaction. I knew it was from the Lamital because I had just taken it an hour before. I was always wary of this drug because it can cause a rash and you must stop it immediately. After 2 days and the meds the ER MD had prescribed the rash went away. During January and February 2007 I was slowly decreasing Trilepital. My sodium level went back to normal. The pain now was less frequent and less intense. In March I was down to Trilepital 1@ day. I was thrilled. However this didn’t last very long. On March 7th I noticed a cold sore on my upper left lip. It felt different from any cold sore that I had. On March 9th my left nostril and cheek started tingling. By March 13 the pins and needles now included my left eye. I was in Key West Florida for the winter and now I was getting frantic. I called my Neurosurgeon in NY. He advised me to go to the ER immediately. I had no feeling in my left eye, plus the numbness in my face. The diagnosis from the ER was: My eye was normal and it was from the side effects of the Gamma Knife Surgery.

At the present time, it is September 2007 and I feel like I have ½ a face that is frozen, a numbness from my chin to my scalp, my lips feel thick and swollen but to someone looking at me I look normal. At times, there is the sensation of pins and needles which sometimes feel like knives. My left eye constantly feels like there is something in it. At times I get a sharp pain in my eye, like a jolt that makes me jump. At other times I feel like I have creepy crawlers under my skin. I still have a pain in the area where the left pole was placed during the procedure. No one can see that there is anything wrong with my face. It is all internal. The meds I am now taking is Gabapentin 400mg 6x @ day. I frequently place a hot cloth on that side of my face for some comfort. I put eye drops in my eyes 3 or 4 x@ day. Recently I had an MRI of my brain and the results came back everything was normal. I now see a new Neurologist. He gives me hope.

 I have been diagnosed with Anesthesia Dolorosa resulting from the side effects of the Gamma Knife Procedure. The added meds are Topamax 50mg 3@day and I am slowing increasing Cymbalta this first month.

Somehow I will conquer this and keep on searching for answers. I am writing this to share my story with you. I started an email networking group called Always Hopeful. The email address is: AlwaysHopeful333@msn.com . 

 I hope to connect with others who have had a similar unfortunate experience. Through a strong support system you can Always Accomplish Miracles.

Posted 9-20-07