Merlin, 60

Share Your Hydrocephalus StoryMy name is Merlin and I have Hydrocephalus.

My story began back in late 2012, when I began having a dry cough that would not go away. I could not get rid of this persistent cough no matter what medication I took. This went on for about a year, and everyone, including my doctor, thought that I was suffering from chronic allergies. My doctor ordered a series of allergy tests, which led to me having to take allergy shots in the hopes of feeling better. In September 2013, I started having post nasal drip so I did a procedure called Balloon Sinuplasty but after that I continued feeling sick all through October. I was throwing up several times a day and I became severely dehydrated to the point that I had to be hospitalized. The doctors started a battery of tests and diagnosed me with having Vertigo and began treating me for that. They later found out that I did not have Vertigo. The doctors were still unable to provide a definitive diagnosis regarding my illness and told me that I had Pylori Bacteria, even though my test results proved otherwise. From one of the CAT scans or MRI`s they told me that I had abnormal fluid surrounding my brain, but they were not very concerned about it. After the numerous tests that were performed, they still could not come up with a definitive diagnosis.

It was very frustrating spending so many days in and out of one hospital with no answers to why was so sick. At this point it was just a guessing game. The doctors were thinking it’s a stomach illness, and then they moved to thinking it was a contagious disease I may have contracted while travelling. So, I began to take extra precautions. The hospital began having my family and friends wear masks while I was quarantined on a communicable disease floor at the hospital. Test after test from lung biopsy to stomach biopsy, MRI, CAT scans and spinal tap and nothing would provide the answers to the questions my family and I had been asking for weeks.

At this point I was having problems walking, lost my short term memory and I had incontinence all associated with Alzheimer’s. I was in a really bad way. With my weight loss at an all-time low, I only weighed 84 pounds.

I was sure I was going to die…

Still no answers. Doctor after doctor and no one could tell me what was wrong with me.

The next option was to perform a lymph node biopsy through my throat, which they told me may show inconclusive results. This meant having another procedure leading to an even longer time before a positive diagnosis. We decided to go ahead with the lymph node biopsy where they operate rather than go in through the throat. This gives a quick and positive result, which I desired since every other test that I did previously wasn’t providing the answers I needed. All went seemingly well, or so they thought, but during the procedure they had one slight problem. They had to collapse one of my lungs during the procedure to gain access to the Lymph node. My heart rate became really low and they had to hand ventilate my heart but ended up collapsing my good lung by an over-zealous pump of a hand inflator. I came out of surgery only to have to go straight back into surgery before the drugs had even worn off to re-inflate my other lung.

Finally, the tests showed I had Sarcoidosis in my lungs and that was what was causing the extra fluid on the brain. I was told I may be able the have a spinal tap to remove some of the fluid or have brain surgery and have a VP shunt put in. The doctors at this hospital said to wait and see if there were any improvements now that I was on steroids for the Sarcoidosis. My family and I hesitated to have anything done, fearing the worst. I was not getting any better and I was having changes in my personality and I felt like I was dying. So together we decided to have it done. The results came back from the Lymph node Biopsy. Sarcoidosis was causing the Hydrocephalus and finally we had a conclusive diagnosis…I have Hydrocephalus.

Now came the hard part that I needed to have brain surgery. Since my family and I weren’t happy with the care and all the misdiagnosis at the hospital where I was, we made the decision to take my records and get a second opinion at another hospital. We were able to see a neurosurgeon at a nearby hospital who took a look at me and my records. He realized I needed the VP shunt in order to survive. On December 19, 2013, I was given a second lease on life when I had the procedure to insert the shunt. Within three days after I had the procedure, I was a new person and began feeling a lot better than I did in months. I have Dr. Addada at the Cleveland Clinic to thank for saving my life. After the procedure I had one month of physiotherapy to regain my walking and to strengthen the muscles back in my legs. I remained out from work for nine months. I still continue see my pulmonary disease doctor every four months and my neurologist and neurosurgeon once a year for follow up visits. I have discontinued taking the steroids as of August 31, 2015, after two years.

Marriage and Normal Pressure Hydrocephalus

Merlin and her husband, Chris.

Today I am healthy and happy and I would like to thank my beloved husband Chris Bott for his continued support and many sacrifices during my time of illness. Without him I know I would not have survived. Special thanks to my family, friends and the South Florida Hydrocephalus Association Community Network for welcoming us to their group. I’m so blessed and thank you for reading my story.

Let’s find a cure!!!!!

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

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