Cathy McKinnon had raised her two children as a single mom. They are her best memories, hard as they were. Melanie, the eldest by 2 ½ years, and her brother Jack, both started swimming early in life. Cathy had told them to pick something and stick with it so they could get really good at it. She sacrificed a lot to get them to swimming and to attend their meets, but she didn’t see it that way. It kept them busy and out of trouble and they both won swimming scholarships to go to college, which she would not have been able to afford otherwise.
When Cathy married Rod, her second husband and the hero in this story, in 1997, the wedding date was chosen around swim meets. Since it took place at the time of a state meet, Jack’s head was completely shaved. Cathy still laughs at the wedding pictures of him, who gave her away, with his baldheadedness.
Cathy was a soloist at her church at that time. It was just before the 2001 Christmas program when she found a knot on her neck. As a precaution she went to her primary care physician who put her on an antibiotic. It didn’t change anything. He sent her to a throat doctor who did a biopsy and said it was a tumor on her parotid gland and it needed to be removed. It didn’t hurt. It was just a hard knot. She was happily married for five years at this point and it was a wonderful life and she was happy!
On January 21, 2002 she had the tumor removed by this same throat doctor. He left “the flap of her face” open an extra half hour while waiting for the pathology report. (She discovered this later when another doctor read the reports.) She awoke from the anesthesia with a drainage tube in her neck and 29 staples from the top of her ear down to her jaw continuing to the middle of her neck. She had not been advised that this is what she could expect. The staples around her ear were in constant pain, as if they were pulled too tight and they also felt too close together. (She later discovered the procedure should have been just an inch and a half incision in her neck to remove the tumor!) She was barely able to talk and the left side of her face was numb. Several weeks later, after the staples were removed, the numbness began to wear off.
Cathy got back with the doctor right away because she was hurting “really bad now” and he gave her prescription Tylenol thinking that would take care of it. It did nothing and the pain continued to get worse. She kept calling to tell him something is wrong! She begged him “What can I do? What do I do?” He had her come back to the office, looked at her face and said, “Well, you have healed very nicely.” Then he kept repeating “I didn’t do anything wrong!” over and over. She hadn’t accused him of anything so she was surprised at his reaction. She was just hurting and wanted relief. He told her there was nothing else he could do for her and she was free to go. Turns out he is now in the same building as her eye doctor and she cringes every time she has to go there!
Cathy always had great faith in her primary care physician; they have a great relationship. She had been seeing him since she was pregnant with Jack. She totally trusts him, and he recommended some neurologists but none were available at the time. She finally got to see one who put her on Topamax, which did not faze her. She was in constant pain! Except, surprisingly, she was not in pain while asleep and it did not awaken her at night! But as soon as she opened her eyes in the morning it was the first thing she was aware of.
Next the flare-ups started which would put her on the floor screaming, and she’d just curl up in a ball. “Imagine getting a cortisone shot, your worst migraine and your worst labor contraction all at the same time, and it won’t let up. (It) feels like someone has pliers on each of your sensitive teeth and they are pulling them out, slowly, with no Novocain. Feel the grinding of the metal like you have this jagged stab going on in your gums, your jaw, your cheek … and it doesn’t let up.” None of the drugs were helping, and although she has great faith she said “I can’t live like this. What am I gonna do? What am I gonna do? I can’t live like this.” She called the neurologist so many times he wouldn’t take her calls anymore. She did get his PA (Physician’s Assistant) who put Lidocaine patches on her face, but that didn’t help either.
Another neurologist was consulted but he had no idea what to do. At this point she is hurting and crying all the time, but since her MRI was clear, he assumed she must be making it up.
A different neurologist, a young one this time, saw her in the hall outside his office and told her she does not have typical trigeminal neuralgia symptoms so there is no purpose going into an exam room since it is a waste of both of their times. When she begged him to talk to her, to give her relief he just said it again.During this ordeal, her loving, caring husband was hurting watching her endure the pain. He held her and tried to comfort her but since she feels compelled to talk (which makes the pain worse) when people are nearby, she would beg him to go to the other end of the house and pray. She couldn’t stand to see the pain in Rod’s eyes. “He has been absolutely wonderful through this.”
When her primary care doctor mentioned TN previously she wasn’t even capable of researching what it was. She went back to him again and he could not believe the shape she was in. He said “Dogs are treated better than this” and he put her on Fentanyl patch. Keep in mind that Cathy had had two children by natural childbirth with 12 hour labors each and no epidural. She thought she had a high tolerance for pain. She had never done any drugs. When she tried this patch she was relieved! It helped enough to give her a grasp of what was going on. She still had pain but she could think a little more clearly. Meanwhile, she was still working as an associate agent to a financial planner! She had her own office and she would crawl up under her desk until flare-ups passed. She had a radiant heater on her desk directed at her scar and she put “ThermaCare – Heat Wraps” on the places it hurt the most, which was the front of her mouth and the back of her jaw. She says her employer was wonderful and put up with more than he should have.
Next she was sent to the Carolinas Medical Center Pain Clinic. This doctor looked over all she had been through and increased the Fentanyl patch and gave her injections of glycerol for her nerve (after they had knocked her out!) These injections occurred every six weeks. It did help make a difference because “The pain backed off a little bit, I could breathe a little and not be in the hysterical place.” She has been on antidepressants all this time and that was also increased at this time by her physician who said “Depression goes hand in hand with chronic pain, and I want to stay on top of your depression.” Cathy laughed “See how good he is?” (Laughter sounded good as she had broken into tears several times by now.) She continued the injections until her heart monitor reacted and the physician was no longer comfortable putting her under until she saw a cardiologist.
The cardiologist gave her a medication to simulate her heart rate increasing as he didn’t want to put her on the treadmill, and then he did a heart catheterization. She kept her face wrapped up in ThermaCare Heat Wraps since cold temperatures in the operating room would cause extra pain. She was cleared of the heart condition almost one year after the original botched surgery. All of this happened in the first year!
Meanwhile, Melanie was graduating from college and on New Year’s Eve Cathy ended up in the ER with chest pains that made her think she was having a heart attack! One week later her gall bladder was removed. When she awoke in the recovery room she asked for medication for the pain. She was told she had been given morphine, Fentanyl and something else she doesn’t recall and they then said “We can’t give you any more because you are on a high dosage Fentanyl patch. Your tolerance for this medication is WAY up there. We can only put the heating pad on you and watch.”
When she returned for more glycerol injections, she found they didn’t last the full six weeks. She wanted to try something else but was told there was nothing else they could do for her. The doctor didn’t feel it safe to give her any more of them so he sent her away.
“That is unacceptable. Totally unacceptable!” exclaimed her primary physician. He sent her to Wake Forest to see yet another neurologist. (Keep in mind that not one of these many doctors would admit that the first surgeon had “botched up” her surgery.) This one did more tests. He told her that her incision should have only been about an inch and a half and her scar was nowhere near the parotid gland… but still no ill comments were made about the surgeon. He labeled it “trigeminal neuralgia”, “atypical trigeminal neuralgia” and “nerve damage”. He was going to give her more medications but Cathy stopped him and said “If I was your wife or I was your mother, what would you tell me to do?” He said “Oh that’s easy, I’d tell you to go down the hall and see Dr. Ellis, and he’s the neurosurgeon in charge of Gamma Knife Surgery.” She replied “Tell him I’m on my way.”
At this point we have to stop as she gets more heat for her face. “I feel like my face has a claw that pulls my mouth and nose back towards my ear. When that sensation starts, “it isn’t long before the pain gets worse.” I wanted to stop the interview since we were at the 40 minutes mark and I knew that Cathy’s talking was making her hurt, but she insisted on continuing. “You just can’t always avoid something… because you know you’re gonna hurt. You gotta keep going. I’ll take the pills. Tuesday nights I have a marathon phone call with my mother. She says she knows she is making me hurt. I tell her I know it’s gonna hurt but it’s worth talking to you.” Meanwhile Cathy is starting to get distressed that she can’t find the timeline for her meds that Rod made for her. She takes her long list of medications with her everywhere she goes. She also keeps a record of everything as she takes it so that if she were to pass out and someone had to call 911 they would know what she had taken and when. A very thorough woman!
September of the second year she underwent the Gamma Knife Surgery. Dr. Ellis said he hoped to make her better, or it may stay the same, but he wouldn’t make her any worse. It required putting screws in her head, and when he tried to give her a local at each insertion site her daughter convinced her that with all the pain she was having already … this was not necessary. She refused the locals and didn’t even feel the screws! As she walked down the hall Dr. Ellis came out and walked beside her with his hand on her arm and said “Cathy, you’re one of the bravest, strongest women I have ever met!” Cathy said “Thank you. I don’t feel that way. It is a nice thing to hear because I feel weak.” Then she told him there are people praying for him. He said “Me? They need to be praying for you!” She replied “They want you to guide those Gamma Ray Beams to the right places.”
The treatment relieved – about 50% of her hurting, because it only works on the TN pain and not the atypical pain. He wanted her to go off the patch. They tried each of the typical TN meds, one by one, month after month to see what ones worked for her. Finally, the last one they tried was Keppra and it worked! She started withdrawing from the patch. Then one day, seven months later, she awoke with numbness, and constant burning like hot lava rolling over her lower jaw and all around her tongue, around her cheek, hypersensitive lips, a metallic taste in her mouth, accidently biting the inner part of the jaw and she wondered “What have I got? A stroke?” When she called the office she was told it was a typical side effect from the gamma knife. When she asked if it would get better she was told no… and she still has it, 13 years later. The only positive side effect was that she lost 100 pounds!
No one knows what nerves were damaged in that original surgery in 2002, because her case is unusual and complicated.
It took her 7 weeks to withdraw from the patch. She’d be getting the sweats, get “crawlings” like she was coming out of her skin, which would lead to needing to take an hour off to scream somewhere. Her boss was so good. She always made up the time even though he didn’t require it. He didn’t understand how she did it, until he went through throat cancer. It gave him a new insight and he marveled even more at her showing up for work every day while suffering agonizing torture/ pain plus withdrawal. He told her “I can’t tell you how much I think of you and admire you. I know you don’t ever look at yourself that way, but you are such a strong woman!” She often hears how she has inspired someone else who is going through pain and suffering; knowing that if she could deal with what she was going through, they could deal with theirs. When she hears that she is an inspiration it makes her “feel funny” but it does feel good to think that she is!
While still tweaking meds through 2005 she was put back on the patch in 2006. The jolts were coming at about 150 a day at this point in time. Jack got married in August of that year and luckily she was back on the patch, which has four times the pain-killing strength of patches used by people coming out of surgery. (It knocks them out!) She is still on it 10 years later. She is also on anticonvulsants, antispasmodics, antidepressant, anti-anxiety and pregabalin in addition to the patch and other narcotics.
Then in 2008 she was told by Dr. Ellis that she could not have a repeat gamma knife operation. Meanwhile, while in the Mayo Clinic in Jacksonville she was tested for Sjogren’s syndrome and she had 9 out of 10 of the symptoms for Sarcoidosis. She didn’t address that issue.
Next she underwent MVD (Microvascular Decompression) surgery that same year. During the pre-surgery meeting with the doctor, she was asked if she wanted the nerve severed if they couldn’t find the cause of her pain. She decided not to allow that radical step, because it would have left half her face paralyzed. The anesthesiologist was giving her a hard time and got “huffy” with her because he was ready to prep her for surgery, but she insisted on signing the “no nerve-cut” paperwork her doctor had with him before being knocked-out. Her doctor, who was around the corner, heard what was going on and “scolded the anesthesiologist saying”, “Don’t you dare get my patient upset before she is going in to have brain surgery!” She thought that was terrific. She liked this doctor. He had compassion. His patients recovered in a nice room with a nurse there (one on one) so his patients would not be disturbed by machines beeping. He wanted it nice and quiet for them.
Before the surgery, she had a visit from her minister, Jim who drove all the way from Charlotte where he lives to Jacksonville, FL where she was, to pray for her in the waiting room. The associate minister, Bob, was in town also, for a wedding. He had distracted her for 45 minutes on the phone as she went through withdrawal after the Gamma Knife Treatment. When she awoke from surgery, Rod, Jack, Crystal and Melanie were there along with Rev. Bob and his wife. Rod told her that they found an artery pressing on the nerve, and a small blood vessel was floating close by, and they clipped it. Then Rev. Bob exclaimed “You’re smiling! I’ve never seen you smile before!” Most of her TN pain was relieved.
She spent four days in the hospital and another in the hotel before she was ready to go home. Her doctor told her he did what he could do and now she had to do what she could. “Eliminate stress in your life and stay positive for at least six weeks. I firmly believe that makes a difference in the outcome.” Two weeks later she fainted. Now she uses a walker with a seat so she can sit down when she feels faint, but she rarely has much of a warning. Her blood pressure has been low since her surgery.
She still has pain. She still has some jolts once in awhile to keep her on her toes. She was told they can do repeat surgeries on it if her jolts came back. (She had two just talking to me.) Flare-ups can last from an hour to a couple of days.
She already knew stress is a trigger, as is talking, as she mentioned earlier. She says she’ll never sing again since it is a trigger, and that was something she loved to do! Cold, anything cold: cold air, cold drink, and cold food, can start the pain, as well as air circulating from air vents, ceiling fans, the wind … actually any breeze. She wears a scarf at the beach and when people ask her “why” she whips out a brochure and tells them to read. “This will tell you why I wear this” she says. Also, brushing her teeth, smiling and, of course, laughing can elicit pain, along with applying mascara. Agony can come from rain, showering or from washing her face, bending over, certain sounds and light. She drinks through a straw to minimize pain in her mouth.
Additional pain generators are dental work, any food too sweet, sour or spicy, blowing her nose, approaching storms and drops in atmospheric pressure – especially when flying. (Speaking of flying, before going out to see Jack in Denver she does a regimen of cortisone pills for three days beforehand to shrink her sinuses, which expand while in the air and put pressure on the trigeminal nerve. She prefers to use Benadryl – about eight of them. Just one would knock most people out!)
It is hard for her to be away from her grandchildren. As we spoke she was with her brand new six-week-old baby boy in Greensboro, NC, Melanie’s second. She loves taking care of the babies and their crying doesn’t bother her since their voice’s pitch does not really affect her. However, her three-year-old grandson can let out a yell and she’ll have to go take something… (she never takes pills in front of the grandchildren). She has six of them, the oldest now at 5. They know she hurts. They are careful not to touch her “hurt face” side. They kiss her on the other side. She doesn’t like others to see her in pain so she goes and lies down in a quiet place with her heating pad until her meds kick in when she needs to.
She jokes about the screws in her head … how she may have some loose ones after all. I commented that it was good to hear her laugh. She said “I was funny before. I loved to laugh. I was a big talker. I loved to laugh. Now I don’t.” One of her friends told her recently “I miss the old Cathy.” “I do too” she replied.
She continued to work until 2010 when she was eventually fired. She tried to go on disability but was declined. She hired a lawyer and was sent to a psychiatrist that works with disability claims. A friend took her and the psychiatrist was surprised she had one. He said he saw that she has trigeminal neuralgia … “you lost all your friends didn’t you?” She started to cry. He said “Cathy, if you had cancer they’d still be bringing you casseroles. You have chronic pain. People don’t know what to do with that. They don’t come around do they?” She said “They don’t call because they know it makes me hurt.” (This she says after we have been on the phone for over an hour and a half!) “Nobody ever asks if there is anything they can do for me.”
Rod, her husband is always considerate. He is truly her hero. He always asks her if she wants to do something. It is never a given that she can’t. Once in awhile she surprises him though!
She can’t cook. She might fall asleep. The drugs make her forget she put a kettle on the stove. She puts up with the pain to do what she needs to do … or wants to do. There are no words in the dictionary that can describe this pain!
When she first went online fourteen years ago she thought she’d never go back again. There was a woman who was saying she prayed to Jesus to heal her and she was healed… so if you are still in pain then you are a sinner. Cathy thought she was a misinterpretation of religion, but the support groups are totally different now. Cathy is in a bunch of online support groups. She made a friend from the TN Facebook page and she is so excited she is finally going to meet her this summer at a fundraising event her son Jack is participating in!
Some of the drugs she was taking just twice a day, morning and evening, but she would have a “dip” in the middle of the day. So she had the meds changed to be time release or had a lower dose so she could take them three times a day. She thinks this is a tip people should know. Don’t be afraid to speak up and ask about it. And know that it does get worse at night because you’re tired. She chose our time to talk based on that.
She drops brochures off wherever she goes to help inform people what trigeminal neuralgia is. She says it is such a relief when people know what it is. She suffered through our two and a half hour interview to help educate people. Cathy truly is an inspiration!
She says she feels bad for people who are new to TN. They are still looking for a doctor to help them. ER doctors think they are just looking for drugs. She says “Find a support system!” It is so important to find a way out of “the pit” as she calls it. She leans on God; her faith in God. “Some people meditate, some do yoga or art work … do something to distract your self. You have to find your own inner strength and your ‘gumption’ that’s going to make you survive each day. It’s not like I have any miraculous words to tell anybody. I found out I have more strength than I thought I had.” And when you find yourself up in the middle of the night, unable to sleep due to your pain, get on Facebook! There is likely to be someone in the world who is also awake who can help you through it. Cathy often finds relief this way.
Her son Jack is also amazing and she is so proud of him! He is training for Ironman, in August, as a way to help his mother and all sufferers of Trigeminal Neuralgia. Although they are both private people, and this is out of their comfort zone, they are both drawn to do whatever they can to raise awareness for the lonely and painful (beyond belief) disease simply called TN.
As Jack says, you have to be inspired and motivated to go through the rigorous training required to become an Ironman. He has a goal of raising $10,000 for TN research and is hoping that this story about his mom will move others to see the need for helping all people with this life stopping disease. His wife Crystal has been totally supportive of his quest, his mission, even though it takes him away from her and their children more each day.
In Jack’s words “training for an Ironman and the actual event is painful. I get a reprieve from the pain on recovery days or can ice my soreness, but those who suffer from TN don’t get a reprieve. I personally want to raise funds for research that will find a cure and end this horrible disease. I want to do this because my Mom has selflessly given of herself to my older sister and I growing up in a single parent household and now is my opportunity to give to her. A woman who never asked for a thank you for all that she did for us.
When you see a loved one go through this or when you realize at any moment, for no reason at all, it can attack or affect you or a loved one, well, let’s just say, the motivation to finding a cure is enormous… as Jack is in the process of proving by his participation in the Ironman Event. To support Jack in his quest to raise awareness and funds for The Facial Pain Research Foundation please visit; https://www.frundraise.com/fundraisers/247. Thank You!