Neurology Webinar Video discussing PTC/IIH

The Johns Hopkins Hospital - Neurology

I found this video from Dr. Moghekar discussing the latest in research, diagnosis and treatment for Pseudotumor Cerebri (IIH) 

Dr. Abhay Moghekar focuses on disorders of cerebrospinal fluid physiology like normal pressure hydrocephalus, obstructive hydrocephalus, congenital hydrocephalus, pseudotumor cerebri, CSF otorhhea, CSF rhinorrhea, intracranial hypotension due to spinal CSF leaks and peri-operative management of patients undergoing repair of CSF otorrhea and rhinorrhea.

Pseudotumor Webinar Video

A very interesting video discussing this condition from a medical view point. The video is approximately 1 hour in length.

2011 - Not much change

My headaches continued to persist on a daily basis with no resolution in sight. I had repeated follow ups with Dr Harvey, and it was his opinion that I would have to learn to live with the headaches as he could see no reason for them. His primary concern was continuing to monitor my double vision and ensure that there was no re-occurrence of the pseudotumour.

Inactivity due to the headaches did contribute to a slow increase in weight, but I was finding it more difficult to keep active beyond caring for a toddler. 

Not so flattering - August 2011 approximately

In June, Rachel became an escape artist, climbing out of her crib, so we moved her to a toddler bed for safety reasons. 

Rachel testing out the new toddler bed

In October, I did begin to notice occasional white-outs of my vision when changing position, especially if I bent forward to pick something up. I didn't think too much of it at the time at least I didn't think it was worth an extra trip to Hamilton when I had an appointment coming up in the new year. I did manage to lose about 30 lbs of the weight I had gained but with the hypothyroid condition, weight loss is not easy. 

Rachel's 2nd Birthday

Rob got a new job in Brantford and after commuting for a bit, we decided that it would be better to relocate our family before winter made the commute more dangerous. We moved December 1, 2011.

2010 - Starting to get some answers

January - Had a CT scan following the MRI results from 2009 in preparation for my first appointment at the St Joe's Eye Clinic in Hamilton. Dr. J. Harvey, an eye surgeon specializing in oculoplastic, reconstructive and cosmetic eyelid surgery, with sub-specialty skills in the area of lacrimal, orbital and cosmetic surgery.

My MRI showed a mass on the right orbit, the CT indicated that the mass was centred on the right lacrimal gland. I was booked for surgery March 31st, to remove the mass and have it biopsied.

In January, I also attempted to return to work.  Managed to work a month an a half in a busy tax office as an assistant manager, but found the combination of headaches, vision issues and having a 3 month old baby at home was just too much.  February 27th was my last day worked.

Surgery was postponed to April 28th, 2010. Fortunately, it was a day surgery, I would be in at 11 am and ready to head home by 4 pm. The operation was pretty routine I guess, I was asleep the entire time so I can't say officially how it went. I did have some trouble waking up afterwards and I do recall hearing the nurses saying "let her sleep a little longer, she's got a baby at home" as I drifted between being asleep and awake.

Day after Surgery

Day after surgery, bandages removed

48 hours after surgery

A couple more terms/diagnosis came up resulting from the biopsy.

Tumefactive fibroinflammatory lesion is an idiopathic fibrosclerosing disorder occurring in the head and neck region. It is one of a broad spectrum of entities named inflammatory pseudotumors and, as the name suggests, it mimics a lot of diseases such as malignancies or infections.

Sclerosing orbital pseudotumor is uncommon. Due to unknown reasons, these tumors behave differently than other types of pseudotumor of the orbit. They grow more slowly, cause less pain, and are characterized by scarring (hardening of the tumor tissue).

Histopathology reveals large amounts of fibrous tissue.

Sclerosing orbital pseudotumor is not cancer. But, by local growth it can cause bulging of the eye (proptosis), double vision (diplopia) and loss of vision.

I certainly did have all of those symptoms in my right eye. Fortunately the surgery fixed the physical appearance, at least as far as the bulging and swelling around my eye. The drooping of my eye lid would continue along with the double vision and everything appeared to have a slight tilt similar to the image below. The picture below is a close representation.  In actuality, my vision appeared as if the foot on the right of the top A and the foot on the left of the lower A were touching while maintaining the angle shown.

CN IV Palsy Horizontal, vertical and Torsional
This is about the closest representation I can get to what my vision was like at the time.

Couple weeks or so post op.
Not winking, that's the limit I can open my eye

This led to additional aches and pains as I developed a tendency to tilt my head to counteract the visual information I was receiving. For the balance of the year and for 2011 I continued to see Dr. Harvey on a regular basis as he monitored my recovery and progress.

I had 2 eye lift procedures in attempts to correct the eyelid drooping as a result of the April surgery. 

A follow up MRI was performed and revealed that there was no further occurrence of the tumour. 

At this time, my official diagnosis was listed as orbital pseudotumour. My headaches continued to remain 24/7, varying in degree of intensity. Treated only with acetaminophen and ibuprofen.


On a more positive note, Rachel celebrated her first birthday October 23 with the help of family and friends.
  

Cousin Ethan helps Rachel with her mash cake! Happy Birthday to our little princess!