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The PTC Primer...
Chapter Seven - Of Interest...

 

Interviews With Pseudotumor Cerebri Survivors

With a two-year old and seven-month old twins, Kelly Garbrandt's life is more than just a little hectic. Kelly's been fortunate that her PTC has not impacted her daily activities as much as others. Here's her story:

Kelly Garbrandt went through the most terrifying ordeal of her life when she was just 22 years old. During a camping trip with friends over the 4th of July, 1987, Kelly experienced excruciating headaches, dizziness and nausea. "I thought I was going to die," Kelly remembers.

After a nearly impossible car ride home, Kelly went to an Urgent Care center, where she was given medication for a sinus infection. The pain did not lessen and Kelly, who was not even able to drive to work, called her family physician, who ordered her to the emergency room. "I was in so much pain, I could barely get out of bed", Kelly added.

The physician at the emergency room thought Kelly possibly had spinal meningitis and wanted to do a spinal tap. It was just too overwhelming. Kelly left and contacted her parents, who were out of town vacationing. They ended their trip and made immediate plans to come home. Kelly left the emergency room and went home to wait for her parents.

Once Mom and Dad arrived, they took Kelly to their family physician for a thorough examination. At this point Kelly was diagnosed with severe papilledema and hemorrhaging in her eyes. She was put on Lasix, Decadron and Diamox; unfortunately, there was no relief from the medication. Her vision continued to deteriorate as her pain increased. "It was like I was looking at the world through binoculars," Kelly shares. "It got to the point where it was as though I were looking through a black lace veil- I could hardly see."

While Kelly was resigning to impending blindness, her Mom never gave up and kept Kelly's spirits high.

Finally, Kelly was referred to a neurologist: a Dr. Gary Wise, who checked Kelly into Mt. Carmel West hospital immediately and ordered a spinal tap. "When they did my first spinal tap," Kelly says, "the spinal fluid literally shot across the room!"

Kelly was diagnosed with pseudotumor cerebri. She was placed on I.V. medication and glycerol for four days. After a few more weeks with no results from the medication, she was referred to a neurosurgeon: a Dr. Myron Smith. Dr. Smith scheduled Kelly for an L.P. shunt the next day. (Doctors indicated they thought the onset of PTC was weight and hormone related- i.e., the birth control pill.)

"I just loved doctors Wise and Smith," says Kelly. "I would highly recommend them to anyone with PTC!" On September 17, 1987, Kelly received her L.P. shunt- AND IT WORKED! Kelly remembers with clear emotion her drive home from the hospital several days after her shunt placement. "I've never seen anything so beautiful in my life... I could see, everything was so clear. Gahanna looked gorgeous!"

Eight years later, Kelly is doing very well. She is married, and has a two year old child that she delivered normally without complications. Eight months ago, Kelly got an immense surprise. "Six days before I was to give birth to my second child, I found out I was going to have twins! To be on the safe side, they were delivered by caesarean section. Everything turned out wonderful. To date, I've thankfully had no complications from my shunt." (Yes, Kelly had successful pregnancies with her shunt in place and has had no recurrence of PTC or symptoms.)
"I have my eyes checked at least once a year," says Kelly, who can never forget the fight of her life in 1987. "Not a day goes by that I don't think and worry about pseudotumor and thank God that I'm doing well."

 

We at the PTC Support Network have had the privilege of talking to hundreds of people living with Pseudotumor Cerebri. A frighteningly common problem we hear about is the misdiagnosis of PTC. How many of us were told we were experiencing stress, migraines, allergies, etc.? The following is the story of an incredibly brave woman's journey through a medical maze that far too many of us are familiar with.

Laura Hart lives in upstate New York. She is a wife, a mother of two beautiful adopted children,a full-time teacher of elementary age special education youngsters, and she has been living with PTC for over five years.

It started for Laura with a feeling of heaviness in her head; "a feeling of fullness was always present". Initially Laura and her physician thought it was due to allergies and adjusting to a new climate after her recent move. Next, Laura began experiencing a "whooshing" noise in her ears.

"I couldn't get to sleep at night because the sound was so loud," offered Laura. "Then I had to deal with being tired all the time." Her symptoms increased to visual disturbances. "I began seeing what looked like specks, or sparks. "Over time, the frequency of these increased."

About four years ago, Laura was teaching a class, feeling very tired and heavy-headed. She bent over to pick something up. When she stood up, wham!- she felt like she was going to pass out. Laura rested, finished the day, and went to her car to drive home. Just fifteen minutes later, the road began to move and became completely uneven to her. "I had huge blind spots and couldn't even pull over because I was unable to see where the side of the road was!"

Terrified, Laura immediately contacted her family physician and began a series of tests- CAT scans, MRI's, etc. The tests appeared normal so Laura was sent to an ear, nose and throat specialist. That doctor couldn't find anything, either. The diagnosis? That nasty six-letter word: S-T-R-E-S-S.

True, Laura and her husband were in the middle of a very difficult adoption, she was getting little sleep and she was justifiably worried about her worsening health. "But in the midst of it," say Laura, "I felt like I was handling everything fine. I do well under pressure."

During a particularly bad "spell", a neighbor called an ambulance and Laura was rushed to the hospital. Thinking she was having seizures, the doctors prescribed Dilantin and she was sent to see a psychiatrist. "I was afraid of losing my baby over these medical problems, so I did what they told me to." After a quick five-minute consultation, this psychiatrist diagnosed Laura's worsening health problems as 'panic attacks'. Laura was given ever-increasing amounts of Xanax. "I continued to have spells with head heaviness, visual imbalances and periods of confusion," says Laura. "The only difference was they were now sedated spells."

Laura began to get proactive with her situation. She went back to her family physician and told him things weren't working. She found a great therapist, quit seeing the psychiatrist, and went off the Xanax. Other physical problems which included heavy menstrual periods led to a D&C and finally an emergency hysterectomy. (Ed. note: Women with PTC often have menstrual difficulties.) During the epidural, Laura had one of her spells. Observant doctors sent her to an ophthalmologist, who for the first time diagnosed papilledema (ruptured blood vessels within the eye). After a spinal tap with the opening pressure of 535, Laura was finally diagnosed properly with pseudotumor cerebri!
(Ed. note: Laura's diagnosis was complicated due to the fact that she did not have papilledema in the beginning or middle of her symptoms. Papilledema is usually the first clue to diagnosing PTC.)

Standard treatment such as Diamox didn't work for Laura. The vision in her right eye worsened, so in 1992 she underwent optic nerve sheath fenestration surgery. Strangely, headaches began for Laura after the ONSF surgery; she had not experienced headaches before.

The three things that give Laura the courage to live her life to the fullest are her sense of humor, her supportive husband and her children: a five-year-old son and nine-year-old daughter. "My children somehow make all the pain tolerable," Laura adds. Laura made the decision to go back to teaching full time. "I've been teaching for 20 years and I'm good at it," she says. "Work is also good for me psychologically. I'm lucky to have a supportive principal and staff; they understand when I'm having a bad day and help me get through it."

Laura also feels she's in a unique position to understand her students' various neurological disorders. "I can understand how they feel and even help them verbalize to parents and others the effects of medications, etc." Laura has personally experienced memory loss, mental confusion and other side effects due to medication. Laura's most recent challenge in dealing with PTC is the additional diagnosis of arterial venous malformation.

Laura found her way through the maze and discovered physicians that she could communicate with and trust. Laura's optimism and enthusiasm for creating a life with PTC that is fulfilling is inspiring as she shares: "There comes a time when you have to say, 'I'm going to take control of my treatment and my life.'".

(Ed: note- Laura met a chiropractor who suggested the following exercise, which has helped Laura tremendously. Why not give it a try?)

Stand or sit with shoulders level and straight. Put your head down with chin touching chest for a count of 10- slowly bring head up. Then lean head back for a count of 10- slowly raising head to level position. Do five repetitions of this.

Optimally, it is best if you can do this in a hot shower; however, if that's not possible, you can get the benefits anytime, anywhere.

Laura shared another favorite remedy: microwaveable heat packs which are applied at the base of the neck or top of the head when pain and pressure begin. She purchases elbow-size heat packs at her local pharmacy.

 

 

Dear PTC Survivors:
"Hi....I'm Holly Hackett, a previous Support Leader. We are all in this together. Before I was in contact with Jennifer I felt alone and crazy, since some of the symptoms I had were not listed in any of the PTC literature I'd found..

"Here's some of my story. After having severe headaches, I decided to see a neurologist, who misdiagnosed me with migraine headaches. After searching out another neurologist (who diagnosed papilledema), I had an MRI which showed no tumor- a big relief.

"I was diagnosed with PTC October 1996. I then began my search for answers to my questions. I still don't have an answer to the most important question- what caused this disease?

"Weekly spinal taps worked for a while, but then became ineffective. As time went on, things began to really change. Past events were no longer clear memories. I began stuttering. One night I started to hear the ocean in my head. I got big mood swings. Thankfully, my family has been understanding.

"In January 1997, I had Optic Nerve Sheath Decompression surgery. I am happy to say that the surgery went very well, there were no complications. In November 1997 I had a ventricular-peritoneal shunt put in; I'll need a revision soon."

"I've had a few setbacks due to stress, but I am hopeful that in time I will live a full active life. In my opinion, it is very important to take control of your treatment because no one knows your body better than you do.

"Don't be afraid to question your doctors; they are only human, and don't have all the answers. If you feel your treatment plan is not right for you, please voice your opinion. It's important that you and your doctors have an open line of trust and communication. I'm lucky to have doctors that are good.

"As a previous Support Leader, I've spoken to many people in the past year, and each case has made an impact on my life. The main complaints I heard about were the form of treatment or the insensitivity of doctors."

"Remember, you are not alone. I encourage you to search for answers & bring about awareness in the medical community so that more research funding will be granted.

 

SPEAK UP

by Jennifer Duncan

Who is treating the pseudotumor cerebri patient?

"I'm terribly frustrated... and have been so for years! I go to my neurosurgeon regarding surgery options. I go to my neuro-ophthalmologist to have my eyes and vision checked out. They address the major components of this disease. But what about the daily symptoms that need medical care?

"Who manages my daily pain, my fatigue, tinnitus, dizziness, back pain, loss of coordination, my medication, and (let's not forget) my depression and frustration over having this disease in the first place! My specialists are not the answer.

"Now don't get me wrong; I love my doctor-specialists, and because of their talents, I believe I will see my children grow up. However, they are equipped to deal with pseudotumor cerebri only in their area of expertise­ not the entire package. Not the person living with PTC on a chronic, daily basis.

"In the past years I have felt like a hot potato. A doctor treats one symptom and then passes me on to the next doctor, who treats and passes, treats and passes. Usually they treat the most urgent symptom; it seems as soon as one problem is under control, another flares up.

"I'm a tough case...since being diagnosed with PTC I've developed: chronic pain, high blood pressure, depression, inflammatory arachnoiditis, high sugar levels, hormonal imbalances, balance and vision problems, fatigue, Arnold Chiari syndrome.....

"Who is qualified and willing to take on such a difficult case?

Well, the good news is I've been lucky enough to find a family physician who is:
· interested in PTC
· interested in learning and trying new things
· is compassionate about ME- the person
· is NOT overwhelmed by all my problems,
but sees them as challenges.

I'm lucky... but I'm hearing from many other PTC patients not so fortunate. I hear a common complaint: doctors are unwilling to treat the 'whole' person. "Unless you need surgery," one person shares, "I find doctors don't want to see you. They don't know what to do with you."

So.... Who is treating the pseudotumor cerebri patient? It's a problem.

A 'Thump On The Head' to all doctors who forget the person behind the disease. I urge you to remind your doctor about you if he/she is one of the guilty ones.

If your doctor refuses to listen, I recommend searching for another. It might take a while to find a physician who can care for all of you, but they are out there.

 

A Thump On The Head...

Some physicians just don't understand PTC. A recent PTC Support Network member wrote to us: "My doctor kept telling me my headaches were stress-related and that I should consider counseling." After being diagnosed with PTC by another physician and put on pain medication, her original doctor "told me to get off the pain meds because I was causing my own headaches only to reward myself with narcotics!"

Another member reported being diagnosed solely on the basis of an eye exam showing papilledema! Remember, part of the pseudotumor cerebri diagnosis includes:
· an MRI or CT scan (to eliminate the possibility of a real brain tumor), and
· a spinal tap (to determine that there is increased intracranial pressure; PTC patients will have a pressure of at least 18 or 180). The cerebral spinal fluid must have fewer than 3 white blood cells with normal protein.
We referred this person to a neurologist for further diagnosis.