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For timeline purposes, posts from 2008-2014 are summaries of significant happenings in those years. Please use the Blog Archive links to start at the beginning.

Past tense/Present tense language may change within a post, but those variances should not impact the overall telling of my experiences. I am Canadian, therefore, the spelling of some words (tumor/tumour, color/colour) may vary depending on if it's my wording or quoted text. I have tried to include both key words in the labels of relevant posts.

The blog contains medical terminology. I have tried to provide explanations or definitions when they occur. Occasionally medical images (nothing too graphic) are included to further explain or demonstrate.

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December 31, 2014

2014 - more of the same

I continued into 2014 with regular follow ups with Dr. Rodriguez for my eyes, Dr. Khalidi for the pachymeningits and auto-immune treatment and Dr. Klurfan for the IIH. I was having regular blood work done and MRIs every 4-6 months.

In May, I stopped taking the Plavix that Dr. Klurfan had placed me on along with daily ASA for prevention of blood clots following the stent. The balance of my medications remained the same, though I was finding the gravol was not sufficient for anti-nausea purposes and began using Ondansetron (Zofran) twice daily. Dr. Klurfan decided that there were indications in my MRI that I was experiencing over-drainage from my shunt.  A procedure to tie the shunt off and prevent it from draining was scheduled for June.
Plavix: Clopidogrel is used to prevent heart attacks and strokes in persons with heart disease (recent heart attack), recent stroke, or blood circulation disease (peripheral vascular disease).It is also used with aspirin to treat new/worsening chest pain (new heart attack, unstable angina) and to keep blood vessels open and prevent blood clots after certain procedures (such as cardiac stent).It works by blocking certain blood cells called platelets and prevents them from forming harmful blood clots. This "anti-platelet" effect helps keep blood flowing smoothly in your body. 
Daily ASAAspirin, the common pain reliever that has been in our medicine cabinets for more than a century, also has a talent for prevention.Aspirin prevents blood clots from forming in your arteries. This can prevent a heart attack or stroke. 
Ondansetron: blocks the actions of chemicals in the body that can trigger nausea and vomiting. Ondansetron is used to prevent nausea and vomiting that may be caused by surgery or by medicine to treat cancer (chemotherapy or radiation). Ondansetron is not for preventing nausea or vomiting that is caused by factors other than cancer treatment or surgery.
Healed incision from shunt procedure
virtually invisible
The procedure to tie off my shunt was done June 10th.  A relatively simple process done in the procedure room of the Clinical Neurosurgical unit of the Hamilton Health Science. Done under a local anaesthetic, a small incision was made in my neck and sutures were placed around the shunt tubing then the incision was closed with a couple more stitches.

My headaches continually worsened. I spent the days in bed unable to lift my head from the pillow. The pain was even worse than before the shunt was tied off, the swooshing increased and I became even more sensitive to light and noise. I was on the phone daily with Dr. Klurfan's office. She reversed the procedure a week after it was done and while relief was not complete, I returned to previous levels almost immediately.

In July, Dr. Klurfan made some referrals for me, specifically Pain Management Clinic and Bariatric Medical Program. Appointments for both were booked in October.

I continued with follow ups, medication and more MRI's from July to September. During my visit to her office in September, Dr. Klurfan booked me for a lumbar puncture to clarify what was happening. My MRIs showed small ventricles on the right side, almost to the point of collapse, but on the left I was showing larger ventricles. I was booked for the procedure room once again and Dr. Klurfan did the LP herself on October 1st. A plan was in place contingent on the LP results.

My opening pressure was 31 that day, a complete opposite of what the doctor was anticipating. She drained off a bit and took a second reading.  Closing pressure was 20, considered to be a high normal. I felt immediately better, the swooshing eased off and the intensity of the headache dropped significantly. I was sent home with plans to return on the 3rd for yet another MRI, a follow up and pre-op clinic on the 8th, a CT scan on the 9th and shunt surgery on the 10th.

Based on my previous shunt experience, I made the decision to start out with a hair cut to make the clean up and after care simpler.

underside of pre-surgery cut
Pre-surgery cut

I was also sent for a CT scan the day before my surgery was booked to have "doughnuts" placed, technically, markers for guidance during the surgery.

Guides in place 
 must stay on until after surgery
Surgery was scheduled for noon on the 10th, and again went well. I woke up with 2 new incisions on the left side this time, one in my head and one on my stomach and my hair was shaved even more.

Post-op Incision - Left Skull - 2014
I found the post surgical pain this time wasn't as intense as it had been in 2012, perhaps due to slightly different techniques of the surgeon.  The tubing for this shunt was not as obvious as the one on my right side as the path seems to be at the back of my neck rather than towards the front.  I did find that post-op nausea and vomiting was much worse than previous, continuing daily for about 2 weeks. I once again relied on Ondansetron to counter-act it. I gradually improved and managed to carefully bake a cake and take part in Rachel's 5th birthday!

Healed Abdominal Incision
Left - 2014
Healed Abdominal Incision
Right - 2012

My appointment with the Pain Management Clinic was cancelled as they had overbooked and I was advised they would contact me with a new appointment at a later date.

October 27th, I had my first appointment with the bariatric program. It was not quite what I was expecting. I was not aware that the first appointment was actually a group information session to learn about the program and how it worked.

The technician explained that for 12 weeks there would be weekly group sessions to learn about and discuss our weight loss. They also explained that the medical program was strictly diet.  The available surgeries for weight loss were discussed, the options being gastric by-pass or gastric sleeve. Gastric banding was also mentioned, but not as an offered procedure as it is a reversible option that is not covered under provincial insurance. If we were still interested in going forward with the Bariatric Medical Program, a further appointment could be booked. If we were looking for weight loss surgery a new referral to the Bariatric Surgical Program was needed.

I booked my appointment for November 19th with the intention of discussing the medical program further with the doctor.  I had a primary concern that I could not travel weekly to Hamilton to attend a 2 hour long session. I don't drive, and when my sight was first affected, I was advised by Dr. Rodriguez, if I had my license he would be required to pull it for medical reasons.  This meant that any appointments I have, Rob needs to take the time off work in order to take me there, spend the time waiting, then stay for the actual appointment and that doesn't include the time to travel from Brantford to Hamilton and back.

When I saw the doctor, he agreed that I could pursue a one-on-one schedule.  I think the fact that I had managed to lose 40 pounds between my referral and my first meeting with him helped to show that I could lose the weight successfully and really only needed monitoring.  We agreed that I would continue as I had been and return for a follow up visit after the new year.

December 2nd, I was scheduled for a follow up CT and appointment with Dr. Klurfan.  She was happy with the results of the surgery. Ventricles appeared to have evened out in size and I also appeared to be draining normally and once again the swooshing noises had disappeared, though I still had headaches, they were much more manageable. At this point Dr. Klurfan advised that I no longer needed to see her as we had explored and used all options currently available to us.  I was left with the reminder to call her if my neurological symptoms increased or changed in any way.

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