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I am a very lucky woman with a husband and son who are smart, witty and entertaining. Our son, B, attended public school for two years, and then we embarked on a new adventure in the Fall of 2010 - homeschooling. We don't have all the answers, but we know B and this has been the best thing for him. I blog to preserve our stories and our memories, share recipes, vent and ramble on about our crazy, yet blessed, life. Would you care to follow along?

Wednesday, February 12, 2014

My Health Update

Last November, I blogged about a mass that was found in my middle ear and ear canal, found by my ENT.  He referred me to a neurosurgeon who would take it out.  I visited two neurosurgeons, both of whom confirmed the ENT's diagnosis - a cholesteatoma (grainy mass most likely made up of keratin cells) that has completely filled my middle ear, has torn away part of my ear drum, spilled into my ear canal, eroded away most of the hearing bones in my middle ear and has started to erode the bone separating it from my brain.  That bone around my brain keeps out infection.  If it were to wear away, any infection I get in my ears or sinuses could potential get into the brain and cause meningitis.  Both neurosurgeons agreed that surgery was needed to remove the cholesteatoma, but they each had different approaches.

I wrongly assumed that the surgery would involve going through my ear canal to get at the cholesteatoma.  In fact, it involves drilling a hole in my skull behind my ear to gain access.  The hole will be drilled near an important artery, so the surgeons have sensors that will go off if they get too close to that artery.  My skull may or may not grow back over the hole, but the surgeons informed me that no damage could be done if I get bopped there.

I have a blood disorder that causes me to form clots; I take a daily blood thinner for it.  This disorder can make surgeries a higher risk for me.  Usually, patients receive 2 surgeries - one to remove the cholesteatoma and a second one, after irritation and swelling have gone down, to insert the prosthetic bone.

Surgeon #1's plan: First of all, he sent me to a hematologist to get a full work up on my blood disorder.  He wants the hematologist involved with my surgical plan and recovery to keep me safe.  He wants to reduce the number of surgeries I have to go through not only because of my blood disorder but also to reduce the number of times my skull is accessed.  Due to my blood disorder, he feels that performing the surgery in a hospital will be the safest place for me.  He plans to perform 2 surgeries at most and it depends on how bad the cholesteatoma is when he gets in there.  If it takes a long time to remove it and/or if the surrounding tissue is quite irritated and inflamed, he will go back for the 2nd surgery to add the prosthesis.  He will remove cartilage from the external section of my ear and use that to reattach my ear drum to my ear canal; he will also reshape my ear canal.  Instead of it being a cylinder that stops at the ear drum, he's going to make the end of my ear canal a bowl that dips down below my ear drum.  This bowl will give him access to my middle ear so he can regularly clean out future cholesteatomas that grow.  Because it will come back.  It is impossible to get every single skin cell of it out and just one left will start to multiple again.  Every six months I will have to go back to the doctor so he can inspect my ear and clean it out as needed, fully awake, right in his office.

Surgeon #2's plan: When I mentioned a hematologist, he said one was not needed.  Although he has not operated on someone with my particular blood disorder, he has operated on patients with more common blood disorders and he is confident that he and his staff can handle any issue that may arise during my surgery.  He will do it in two surgeries - one to remove the cholesteatoma and one to implant the prosthesis and sew my ear drum back to my ear canal.  I would have to follow up regularly with scans and each time the cholesteatoma returns, he would perform the same surgery to remove it.  He does not like to perform surgeries in hospitals; he feels there are too many germs in hospitals providing a high risk of infections.  Therefore, he has built his own surgical, outpatient center and would perform all of my surgeries there.

I have decided to go with surgeon #1.

The hematologist asked me more questions and checked for more symptoms than probably all the doctors I've ever been to, combined.  I really appreciated how thorough he was.  I have been experiencing dementia-like symptoms for 5 years and, with Alzheimer's in my family, I was concerned I was experiencing early onset.  The hematologist sent me to a neurologist (different type of doctor than the neurosurgeons I had already seen) to get these symptoms checked out right away and I did.  Before being operated on, I wanted my neurosurgeon to have my whole health picture, especially if I was experiencing a brain issue.

The neurologist was wonderful; reminded me of McDreamy from Greys Anatomy.  ;o)  He was good looking and kind but efficient.  He didn't have a physician's assistant or nurse; he came out to the waiting room to get me and checked my blood pressure himself.  We talked for a long time about what I had been experiencing and for how long.  He also gave me a verbal test for dementia in his office.  I passed with 100%.  He said if it really was Alzheimer's, not only wold I have not been able to pass the test, but I wouldn't be able to care for myself right now because the progression of Alzheimer's from the first sign of symptoms was 3-5 years.  Since I had been experiencing symptoms for 5 years, it was something else.

He ordered an EEG and an MRI (that would not be done until after the 1st of the year) and told me to relax and enjoy my Christmas and New Years.  I did not have Alzheimer's and he would find the cause.  Because of him, I did enjoy my holidays.  After the tests, he said I have a normal brain with no signs of problems.  He said my symptoms were commonly stress related.  He could send me to a psychiatrist who would perform more tests to further prove that there was nothing wrong with me if that would make me feel better, but I declined.  There have been a number of big stressors in the last 5 years and I believe him.  Especially since my symptoms reduced tremendously after he told me to enjoy my holidays.  He said to do what I needed to do to reduce stress - prayer, meditation, medication - whatever I was comfortable with and whatever worked.

So, the hematologist, the neurologist and my general practitioner all cleared me for surgery and I now have a surgical date - March 31st.  I was disappointed it was not sooner.  However, if any of his other surgeries get cancelled between now and then, I will get moved up.  Please pray that my surgery gets moved up because more erosion has occurred while I've been visiting other specialists.

Thank you to all of you for your support, for checking in with me and for your prayers.  It has meant and continues to mean so much to me.

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