May 17th, 11:27am
Hello. St John's Hospital asked me if I'd be willing to send you my story, as I am a patient of Dr Jeffrey Cozzens, and he saved my life.
Back in August of 2013, I was on vacation visiting my in laws and got a headache one day. I took a nap, but it didn't go away, in fact, it just got worse. So bad that my husband and I had to cut our vacation short. When we returned home to West Frankfort, IL, I started developing more symptoms. Earache, very full, stuffed up ears, dizziness, balance issues, nausea and vomiting. My husband finally made me go to the doctor in the beginning of October of 2013. I had dealt with these symptoms for 2 months. I was diagnosed with a severe, double inner ear infection. The ear infection cleared up, but my symptoms did not go away. My husband again took me to the ER where they diagnosed me with mastoiditis and transported me to St Louis University Hospital. The ER doctor at SLU said I did not have mastoiditis and wasn't sure what they were talking about.
Another month passed, still symptomatic. I went to an ENT who just thought I was having migraines, so I was put on Propranolol which I had a very bad reaction to (hallucinations, and psychosis). Then my vision started failing. I've had poor vision since I was about 10 so I was in hopes I just needed a new prescription on my glasses. I would see floaters, blind spots, and when I stood up, I would go completely blind for about 5 seconds, so we finally made an appointment with my Optometrist. When he looked in my eyes he grew very concerned and went to get the Ophthalmologist who said my optic nerves were severely hemorrhaging and we needed to get to the ER right away.
We went to the local ER again, and that's where my story really begins. We sat there all day waiting for the Neurologist on call to get done with his office hours. I had blood work, CT and XRays done. When the neurologist finally did see me, he ordered a lumbar puncture, confirming a diagnosis of meningitis and idiopathic intracranial hypertension, formerly know as pseudotumor cerebri. My opening pressure was 42. I was admitted to ICU for 8 days. Three days after my initial LP, they repeated it, where my opening pressure was then 46. They had me on Diamox, Lasix, three different antibiotics, Mannitol, and pain and nausea medication.
After the meningitis cleared up, they sent me home, now treating the IIH. I did not respond to the medication I was on, which included Diamox, Lasix, Prednisone, and Topamax. From there, my neurologist referred me to a neurosurgeon at Barnes-Jewish Hospital in St Louis. He got me into surgery 2 weeks after the initial visit and I had my first VP shunt placed on April 30, 2014.
The surgery was successful, and the shunt seemed to work for about six weeks before I started noticing "pre shunt" symptoms again. I could not get Barnes to do any workup, my surgeon actually refused to see me, saying shunts did not fail that fast, mine was perfectly fine, and I needed to go back to neurology. I spent the entire summer of 2014 in bed, miserable.
A friend with the same illness told me about Dr Cozzens in October of 2014, and while I did not want to drive four hours one way to see a doctor, she spoke so highly of him, I looked into getting an appointment. My first appointment with Dr Cozzens was late November of 2014. He apologized for the way Barnes had treated me, and made it very clear that he wasn't sure he could help me, but he thought I deserved at least one revision to see. I had my first revision surgery on December 16, 2014, which ended up becoming a total shunt replacement. Dr Cozzens said the tip of the catheter in my brain was clogged, the mechanism itself was cracked, and the brand my previous surgeon used was not a widely used brand in this country.
Recovery was very difficult, as I was in severe pain, vomiting, running a fever, and actually leaking spinal fluid out of my abdominal incision. Christmas Day 2014 I was rushed by ambulance back up to St John's and was in surgery the next morning having my shunt removed because of infection. After being on IV antibiotics for several months, I was finally cleared by the infectious disease department and was able to have surgery again. Dr Cozzens then placed my 3rd shunt on March 12, 2015. Since then I have not had any problems. I still have head pain, but that's to be expected as it will never completely go away, but my shunt is working great. I am going up in a couple weeks for an adjustment but I've not had one problem with this one.
Dr Cozzens is such a very caring, and compassionate doctor who truly cares about and listens to his patients. I would recommend him to anyone, as he did save my life. I am so thankful to have found him, and owe him so much gratitude for giving me a big chunk of my life back. This past Easter was the first family holiday in 2 years that I actually enjoyed myself, instead of just laying in a dark quiet room the entire day. I just want to give Dr Cozzens the recognition he deserves, as I'm sure he does not hear it as much as he should. Thank you for taking the time to read this. God Bless you all.
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