The Maureen Stone Story
by Kathleen Sweeney
Maureen Stone’s story begins with cluster headaches. She had minor head injuries while growing up but then one day in 1995 when she went for a walk with a friend to ease a headache that just kept getting worse she ended up at urgent care. There, the right side of her face and her head went completely numb and then about an hour later it happened again. They ruled out stroke and heart attack. When she awoke the next morning the whole right side of her face was completely numb again and then later that same day her leg felt funny and started drag, she felt off balance and her hands didn’t want to work, lost the sense of temperature in her feet. One thing happened after another.
She went back and forth to her doctor several times until she was finally ordered an MRI. Her primary physician said they needed to rule out a couple of things and went on to look for Lyme disease or MS. He has been her doctor through this whole thing and he prescribed an MRI, which indicated MS or Multiple Sclerosis. The neurologist wanted a spinal tap to confirm this. If there were anything Maureen would like to change it would be the decision to do this procedure, as it “went badly” and she had to be hospitalized until they could do a repair. “Unimaginable pain and I still have a strong reaction now when I hear someone else is going to go through a spinal tap.”
Over the next several months the numbness receded and as that happened the pain started ... both burning, aching pain and lightning-fast bolts of sharp pain. However some of the numbness never did leave. Luckily her Neurologist knew that a very small percentage of people with MS get TN (apparently only about 2 - 4% of people with MS get TN and an even smaller percentage of people with TN also have MS.) He put her on Tegretol because if that worked it would be Trigeminal Neuralgia as that was how they diagnosed TN at that time (1995). She feels fortunate that it was diagnosed correctly fairly quickly, but it does take quite a while to find the correct level of medication that works for you. Some people never seem to arrive at that perfect level and we know now that this changes constantly. At the beginning she recalls being on a level of Tegretol that worked and then two weeks later “being on her knees” calling the doctor to say it isn’t working! Finally she couldn’t take any more of that particular drug and had to either add another or start over with a different drug. She says there are few medications she hasn’t been on at some time in the past 20 years.
A close childhood friend was just diagnosed with Glosso-pharyngeal Neuralgia, where her 9th cranial nerve is impaired, which affects swallowing and the pain of which is located in the ear. (TN affects the 5th cranial nerve.) Maureen made her way to Canada from Albany, NY to be there for her first appointment with a Neurosurgeon where she received this diagnosis. It brought back many painful memories. It saddens her deeply to see her friend starting down the same path and she was glad she could be there for her. I asked if either or both of them had had any issues with their digestive systems previous to their symptoms and she said they discovered they both had difficulty throwing up in their lives. (I really don’t know what moved me to ask that except I keep hearing how important our digestion is to our health. Just looking for clues I guess.)
Maureen doesn’t have too many triggers. Cold wind, cold weather and particularly a big weather change, barometric pressure change puts her into agony.
For six or seven years she didn’t have sharp lancing pain. Although she has never experienced a full remission for those years she didn’t have those “sharp, sharp, sharp pains”. When they started to come back is when she pushed for surgery. No way was she going to experience those again!
After ten years of dealing with Trigeminal Neuralgia with medications Maureen finally pushed for some surgical intervention. The Neurologists thought she should just take more medication. So she did her own research and discovered that because she had MS, the most common surgery was not available to her. After the first incident with MS 20 years ago she has been basically symptom free but unfortunately the TN has been daily.
Then she heard about Gamma Knife radiation and asked a relative who is a Neurosurgeon who treats brain tumors with it if it were being used for Trigeminal Neuralgia and was told it was true. She started to push her Neurologist to have Gamma Knife and in 2005 she went to Syracuse, NY for the procedure. Maureen was sorely disappointed when it didn’t work. Three months later when she was feeling worse they said to come back and try it again. She had a couple of weeks without pain before it returned.
After being bounced around to couple of surgeons who said they couldn’t help her she was offered Glycerol Rhyzotomy. But just before that was scheduled she was unable to breath due to blood clots in both of her lungs! So her brain surgery had to be postponed for a while.
In 2008 she was finally able to have the Glycerol, which gave her just over a year of being completely pain free!! She was able to get off all of her medication and it was unbelievable! After over 12 years of medication! But then it came back and when it did it came back like a freight train. It was autumn, weather changes during that time of year may have increased Maureen’s pain. She got up one morning and was walking across the room when her knees buckled from a jolt of pain. And they kept coming … one right after another. She had difficulty with her doctor’s office because she had a different doctor who didn’t treat her for TN previously so she had to contact her other doctor to get her meds. Very quickly she was right back on the high doses of her medications. A second Glycerol Rhyzotomy failed and left her with significant numbness as well as pain.
Four years ago in 2011 she went to a Trigeminal Neuralgia specialist. He did another MRI and he said he would do the Micro Vascular Decompression surgery! He saw there was a blood vessel pressing on her nerve and if it wasn’t causing her pain it was contributing to it. This is open brain surgery! It was successful from a surgical point of view but it didn’t give any pain relief. She also ended up with a hearing sensitivity, which was severe for about a year. She had to wear earplugs everywhere. She still has a mild case of it.
Maureen was still trying to work full time. She was using the least amount of medication to be able to function at work. But at this point she started thinking about disability.
Besides all this medical “stuff”, she has tried every holistic thing you could possibly think of! She tried diet changes, acupuncture, spent tens of thousands of dollars on supplements … and now she meditates. She started having nerve blocks for pain management. They want to try to implant a nerve stimulator in her face to interfere with the pain, but her insurance company hasn’t approved a trial to date.
She keeps promising herself she won’t try anything else and she’ll just stay on her pain medications, but every time she has another bad spell she wants to try again!
Maureen says the hardest thing for someone who is just diagnosed, which is rarely addressed, is the anxiety and the fear of the pain. “We don’t have to actually be in pain but just have a little discomfort and all of the sudden we are in such a fear state of what will be the result of it!” She says she is speaking for herself knowing full well it must happen to others also.
And then there is the fear of not having enough meds, having backup meds, having meds in three different places just in case they get mislaid. “Sometimes our families and friends and doctors think we are hypochondriacs or it can’t be that bad or that we are obsessed.”
She has counseling. She got her disability. She now has a supportive system in place. But it took time because she never wanted to talk about it or ask anyone for help. She didn’t want anyone to know she was in pain. Only in the last two years has she “come out” when a lack of people in her life who really understand led her to find people suffering the same way.
So now she says she mostly just feels grateful to have met someone on Facebook who was working to start a Trigeminal Neuralgia Awareness Day (October 7 this year). She has now met so many people in her area, on Facebook, at conferences … people who really, really get it that now she feels like she can help somebody else. And she has hope that maybe there will be a cure for somebody else someday soon.
After coming to terms with her life not going the way she had planned she pulled herself out of the depression that her life is “awful” and she had to see the positive; that most days are okay as long as she doesn’t sit around and wait for it to be awful. Since she has stopped working, having gotten her disability, the reduction in stress has been key. Of course the medication side effects do affect her abilities. She has had to learn to ask for help. But when she balances her life, more of her days are good than bad.
All of her career she worked with people with disabilities and that got her through the past twenty plus years seeing how they dealt with their challenges. She has done more healing and resolution in the past five years once she stopped waiting for something to “fix” her and started asking for and getting support.
Toni Saunders created the www.tnnme.com website on Facebook where people started to talk about the need to fund the Facial Pain Research Foundation. There is a grass roots movement growing that includes such things as bumper stickers and t-shirts and other items designed by Rebecca Thorpe and other talented TN survivors, which donate all the proceeds for the research to The Facial Pain Research Foundation. These motivated Maureen and in her search she found the website for “Bravelets” or bracelets for being brave. At the time she didn’t find a page for Trigeminal Neuralgia so she started one. All of the proceeds go to The Facial Pain Research Foundation. If you want to participate in raising awareness and funds, you can go to www.bravelets.com/bravepage/trigeminal-neuralgia-research-and-awareness.
Maureen has also discovered that Amazon and E-bay allow you to name a charity to get a percentage of your income. She doesn’t have the energy to organize a fundraiser or run a race, but says she can do these simple things!
Maureen wants people to know what sufferers are willing to go through to get rid of the pain … 20 pills a day, open the brain, put things in the head, and radiate the brain. “We need a better way” she exclaims!
Advice from Maureen:
~Find a doctor who listens to you!
~ Keep a notebook, keep track.
~ Get involved with a support group.
~Don’t be afraid to push for surgery – it is most successful if done early on in diagnosis.
~Make and keep copies of everything.
~ Bring those copies with you when you have to go to an emergency room so they don’t think you are just a drug seeker!
~ Get help for your fear … a counselor to vent with, talk with, and cry with - away from family and with family …
~ Separate your fear from your experience; your anxiety can make the pain worse.
~ Know that it doesn’t have to be forever.
~Ask for help! It is a gift for another to be able to help you!
~ Don’t give up!!
Finally Maureen says, “I am not my circumstances! It has been a long time coming and sometimes my circumstances suck, but they are not who I am!” And who is she? An admirable, brave, incredible, compassionate woman who will never give up! And this is not the end of her story …
“We still survive AND we CAN still have a life. Just maybe not the life we expected or wanted … “
P.S. But do know that without the medication even Maureen would see death as the alternative. She ran out of medication once, and could barely move the pain was so bad.