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December 31, 2013

2013 - Remission?

Family - July 2013
2013 started out to be a great year!

Before getting into the year, a reminder, there is no cure for IIH.  The best we can hope for at this time is to enter a state where symptoms are non-prevalent. Similar to someone successfully treated for cancer, IIH is said to enter into a remission state.

My symptoms from the IIH were minimal to non existent. Occasional headaches would set off a warning sign for me though, always creating the concern "is it back?" only to have the headache completely disappear with a dose of acetaminophen or ibuprofen.  I wasn't medicating for pain on a daily basis.

Medication wise, I was still taking a number of things.  Eltroxin for the hypothyroidism, prednisone had been tapered down to 10mg/day, a much more tolerable dose. Tecta had been added to help counteract the indigestion issues I had with the prednisone. Cyclophosphamide was switched out for Azathioprine (Imuran) and I was on a daily dose of antibiotic for prophylactic purposes.  I recall telling my nephew at one point that I took 30 pills a day, 22 in the morning and 8 at bedtime.  That's a lot of pills to swallow. 
Eltroxin: Levothyroxine is used to treat an underactive thyroid (hypothyroidism). It replaces or provides more thyroid hormone, which is normally produced by the thyroid gland.  
Tecta: Pantoprazole magnesium belongs to the family of medications called proton pump inhibitors (PPIs). Proton pump inhibitors are used to treat conditions where a reduction in stomach acid is needed 
Azathioprine is used with other medications to prevent transplant rejection (attack of the transplanted organ by the immune system) in people who received kidney transplants. It is also used to treat severe rheumatoid arthritis (a condition in which the body attacks its own joints, causing pain, swelling, and loss of function) when other medications and treatments have not helped. Azathioprine is in a class of medications called immunosuppressants. It works by decreasing the activity of the body's immune system so it will not attack the transplanted organ or the joints. 
Prophylactic: A preventive measure. The word comes from the Greek for "an advance guard," an apt term for a measure taken to fend off a disease or another unwanted consequence. 
Cyclophosphamide: Cyclophosphamide is in a class of medications called alkylating agents. When cyclophosphamide is used to treat cancer, it works by slowing or stopping the growth of cancer cells in your body. When cyclophosphamide is used to treat nephrotic syndrome, it works by suppressing your body's immune system.
New Glasses - May 2013
I was still seeing Dr. Rodriguez and Dr. Khalidi every 3 to 4 months as they continued to track my progress through MRIs and Visual Field Tests. Everything was looking good, the pachymeningitis appeared to have stabilized, my vision was no longer deteriorating though it was determined the loss of peripheral vision was permanent.

Headaches were at this point "just a headache" they came and went like a normal, occasional headache.  Thanks to the reduction in prednisone, I was able to lose some of the weight I had gained and my face lost most of the moon like appearance.

Immunosuppression Therapy, in my case, treatment with cyclophosphamide and later the use of Imuran, of course has its own risks. Primarily, the risk of infection from a simple cut is much higher. I was on a daily antibiotic for preventative measure. Shaving is discouraged, ensuring all cuts and scrapes are cleaned and cared for becomes a priority. Simple tasks such as grocery shopping become a source of potential infection. Hand washing and the use of portable hand sanitizers are constant habits, leading to hands that easily become dry and cracked, so moisturiser is stocked up on.

Research into IIH to date has not confirmed a cause, and there is no cure.  There are many theories and hypothesis, with the unifying factor being the poor absorption of CSF.  Weight, certain medications, physical structures of the skull, or narrowing of the arteries within the skull are a few possible causes.  In some patients, another medical condition has actually caused the increased pressure and is referred to as Secondary Intracranial Hypertension.

A very technical read, but a lot of good information on IIH can be found at Idiopathic Intracranial Hypertension.

Ready for birthday dinner - May 2013
Everything was looking up. As far as I was concerned, I was in remission and had been for 8 months, or at least 5 if you allow for the first 3 months to pass before considering remission. I was ready to return to work. I examined my options and realized that the reduction in eyesight created issues with pursuing computer programming and even IT support, the 2 programs I had completed when my medical issues began.  Working at a computer all the time was difficult, and required just the right lighting and position, (something not easily accommodated for in most workplaces) or I ended up with neck pain and stress related headaches.

In August there was a job fair for a new Toys R Us going in close to home. Given my limitations, I thought retail, perhaps a position as a cashier was feasible. The day before the job fair I had woken up with a headache that was more difficult to reduce than I had become accustomed to.  The  next day, I woke up again with a headache and decided to wait for the second day of the job fair.  For the third day in a row I woke with a headache and noticed the swooshing and pressure had returned.

I contacted my neurosurgeon, Dr. Wells, only to discover that he had semi-retired and was no longer seeing neurology patients in his office. I then contacted my neuro-opthamologist, Dr. Rodriguez and was booked to see him the next day. Examination revealed a slight swelling of the optic nerve but no further damage.  He advised that he would meet with some colleagues and set up an appointment with a new neurosurgeon.

venous phase of cerebral angiography
shows bilateral transverse sinus stenoses (
I saw Dr. Klurfan, the new neuro-surgeon for the first time in September. Thankfully all of my specialists are located in Hamilton, therefore, they all have access to medical records and tests through Hamilton Health Sciences. Dr. Klurfan reviewed my past history and on examination of my MRI results, which included venous scans.  She saw evidence of transverse sinus stenosis.
Stenosis: an abnormal narrowing or contraction of a body passage or opening; called also arctation, coarctation, and stricture.
I continued to see Dr. Klurfan for monitoring and additional MRI studies. In November, Dr. Klurfan, suggested that a stent procedure to open the narrowed arteries within my head was the best course of treatment. Placement of the stent was performed in the Diagnostics Imaging department.
Stent Procedure: A catheter is inserted (usually in the groin) and then threaded through the arteries and in either the arteries of the neck or brain depending on the location of the problem. The stent delivery system follows the same path as the catheter, and thus, carries the stent to the treatment site. The stent is then placed. As it is positioned, it expands to conform to the inside contours of the artery wall. After placement, the catheter is removed and the stent stays in place.  
I had dual catheters used to allow gradient pressure measurements to be obtained on both sides of the occlusion.  Pressure readings were repeated after the stent was expanded and indicated a 90% improvement in flow.  The procedure was performed using twilight sedation and the lines that were used to access my arteries were left in place for 12 hours.  I was unable to move or sit up while the lines were in place to prevent arterial bleeding. Once the lines were removed, I was monitored for a few more hours then sent home later that day.
Twilight SedationConscious sedation is a combination of medicines to help you relax (a sedative) and to block pain (an anesthetic) during a medical or dental procedure. You will probably stay awake but may not be able to speak. Conscious sedation lets you recover quickly and return to your everyday activities soon after your procedure.
View of transverse sinus stensois before and after stent placement
Transverse Sinus Stenting

I recovered relatively quickly after the stent procedure. I had some difficulty walking any distance for about a week, but over all pain was minimal, with the exception of my head. Having the stent placed did not appear to have any noticeable effect on my headaches or the swooshing sounds in my head. On to the new year!

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