How many doctors does it take to change a light bulb?

Q: How many doctors does it take to change a light bulb?

A: Twenty. One primary care physician to hold it while 19 specialists take it apart piece by piece and examine each piece separately under a microscope.

A doctor, a surgeon, a radiologist, a nurse and a physician’s assistant walk into a bar. The bartender says, “What is this? Some kind of a joke?”

Lady talking to her friend, “I was going to sue my neurosurgeon, but he changed my mind.”

A patient walks into a doctor’s office. “Doctor, doctor, I think I’m shrinking!” The doctor says “Now settle down. You’ll just have to be a little patient.”

Ahh, the humor! In the words of the wise Jimmy Buffett, “If we couldn’t laugh we would all go insane!”

Fortunately, despite dealing with some miserable symptoms for months, my humor…or more precisely my desire for humor…is still intact! Honestly, I have to be able to laugh at everything I’ve gone through because if not, I would go insane. 

Unfortunately, I don’t have any more clarification on what is causing my symptoms, despite having thus far seen seven doctors of various specialties, having extensive lab work, two specialist eye exams, two sleep studies, two lumbar punctures (one attempt, one completion) and three MRIs. I can remember all of this because I keep extensive notes…my notes = my memory. I have a notebook of medical records and they all indicate the same thing…I have a pineal gland cyst in my brain and a host of symptoms that no one believes are related to the cyst, yet not one doctor has been able to tell me precisely what IS causing my symptoms.

All of the doctors I have consulted with in Colorado have now discharged me without a diagnosis and without any treatment. I am not under any doctor’s care. They don’t know what is wrong with me, however, they all say with certainty that the pineal cyst in my brain is NOT causing my symptoms. The most they can offer is to go and see yet another neurologist for “headache management.” The flaw in that approach, from my perspective, is that it negates all of my other symptoms. Taking a pill to manage a headache (which isn't what I have) is not going to help my vision, or my fatigue, or my brain fog. I keep insisting that I’m not looking for symptom management. I’m looking for a diagnosis that explains the cause of my symptoms and then treatment for that cause. There is a distinct difference between the way western medicine physicians practice (manage the symptoms, which typically means take a pill) and my personal goal for medical care (to find and treat the problem).

So, what now? That’s a great question! First, steadfastly remain positive! I have become a member of a wonderful support group of people that have come together in a private Facebook group to share information and education. I've learned more from them than any of the doctors I've seen. They too have experienced or are experiencing the same or very similar symptoms to my own and they too have a known pineal gland cyst in the brain. Some have had surgery to remove the pineal cyst with very good results and resolution of symptoms. Many, like me, have been told by their medical community that the pineal cyst is not responsible for their symptoms. Some are pursuing surgery, some are not. It’s a personal preference for some. Some are fundraising to be able to afford their surgery because either they don’t have insurance or their insurance won't cover it. Regardless of an individual’s situation, we find strength in knowing that we are not alone and together we can help change the medical myth about pineal cysts. But it won't change fast.

The fact remains there are very few neurosurgeons in the world who understand symptomatic pineal gland cysts, but there are a few. I have already consulted with one, Dr. Dong Kim at UT Texas Health Science Center in Houston. He wanted me to have more testing to be sure nothing else was responsible for my symptoms (which I agreed with). I have now ruled out everything else that the doctors in Denver suggested. So, I will be sending Dr. Kim all of these tests results for his opinion. I have also learned of a neurosurgeon at the Medical University of South Carolina, Dr. Sunil Patel, who also understands and treats symptomatic pineal gland cysts. Many patients report successful surgery with Dr. Patel and also that he is a very wonderful surgeon and person. So, I am also making arrangements to send Dr. Patel my medical records and a request for a consultation. I feel that the best way to move forward is to have two consultations from two neurosurgeons who treat symptomatic pineal gland cysts. That way I can make a very informed decision when it comes time to consider surgical removal of the cyst, which is the only treat available for them. If both doctors determine I am a candidate for surgery, then I will have a choice to make about where I go to have it done. Fortunately both surgeons are in my insurance network and that removes one more big hurdle from access to treatment, the financial one. That is, of course, as long as I can get insurance authorization when and if the time comes for that.

I thank you for reading. I thank you for caring. I thank you for your prayers, good thoughts, positive energy, and well wishes. It means so much to me and helps more than you know! One foot in front of the other. One day at a time. Keep moving forward! And keep laughing!