Just a short note about this blog.

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.

Explanations and graphics link to original sources wherever possible with the exception of my personal photos.

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October 31, 2015

Happy Halloween!

Happy Halloween! 

Now the little trick-or-treater is showered and tucked into bed, I finally have some time.

October is a crazy month, this year even more. Both my in-laws turned 70, Rachel turned 6 and we had a new niece arrive. October also contained the bulk of my quarterly follow up visits. An exhausting month to say the least!

My follow up with the Neuro-ophthalmologist was first. He was happy that my visual field tests showed my vision had stabilized once again after the shunt was re-opened.

My rheumatologist was also happy with how things stood currently, though he has booked me for an MRI in November to ensure there is no progression of inflammation.  He also started me on a new medication to help counter-act the calcium absorption issues from the prednisone (see my earlier post about crumbling teeth). I took my first Actonel tablet October 26th. Right now, I'm not sure I want to continue with the Actonel. Since taking that first capsule my right hip has become extremely painful, to the point sitting, standing and even laying down all have some level of pain occurring and nothing I've tried has eased the pain at all.

From the website:

Common Actonel side effects may include:
  • mild stomach pain or upset stomach;
  • flu symptoms, muscle pain;
  • diarrhea, constipation;
  • mild joint or back pain; or
  • headache.
 More severe side effects from the website:

                          Stop using Actonel and call your doctor at once if you have:
  • chest pain, new or worsening heartburn;
  • difficulty or pain when swallowing;
  • pain or burning under the ribs or in the back;
  • severe or ongoing indigestion;
  • severe joint, bone, or muscle pain;
  • new or unusual pain in your thigh or hip;
  • jaw pain, numbness, or swelling; or
  • severe skin reaction--fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

I also saw the neuro-surgeon and he has actually indicated that I don't need to see him now until 6 months have  passed barring any visual issues arising between now and then. He is making a referral to pain management. We'll see how it goes this time as my last referral didn't pan out at all.

OK, if you got through all that, thanks for sticking it out. New cake pictures have been added to the bottom of the photo gallery A Piece of Cake!

September 18, 2015

30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness Week is coming up. Both images below link to the source, a site dedicated to raising awareness for many invisible illnesses.


1. The illness I live with is: Idiopathic Intracranial Hypertension (IIH) & Pachymeningitis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: Coping with daily headaches while raising a young child
5. Most people assume: That it can be fixed/it's "just"  a headache
6. The hardest part about mornings are: getting out of bed with the pain in my head
7. My favorite medical TV show is: ER/Grey's Anatomy
8. A gadget I couldn’t live without is: Tablet/E-Reader
9. The hardest part about nights are: Trying to get some sleep
10. Each day I take 20 or more pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried acupuncture and massage therapy wtih no success
12. If I had to choose between an invisible illness or visible I would choose: something visible that has a cure
13. Regarding working and career: I haven't been able to work since I started having symptoms, just after graduating from 2 college programs. (Computer programming and Information Technology Support Services)
14. People would be surprised to know: the pain is worse than the worst headache/migraine you've ever had, I deal with the pain using over the counter medications which only lessen the pain, they don't stop it.
15. The hardest thing to accept about my new reality has been: there is still no cure for the pain that I live with daily
16. Something I never thought I could do with my illness that I did was: have a child in 2009
17. The commercials about my illness: I haven't seen any commercials regarding IIH
18. Something I really miss doing since I was diagnosed is: working
19. It was really hard to have to give up: a regular pay cheque
20. A new hobby I have taken up since my diagnosis is: baking cakes Check them out! A Piece of Cake
21. If I could have one day of feeling normal again I would: spend the time doing things with my daughter that I haven't been able to do!
22. My illness has taught me: take each day as it comes and try not to plan too much, but make the most of the better days.
23. Want to know a secret? One thing people say that gets under my skin is: "Why can't they just fix it!"
24. But I love it when people: understand that I can't always be there for whatever event is going on. I have to take each day as it comes and go from there.
25. My favorite motto, scripture, quote that gets me through tough times is: We love you Mummy! (from my 2 girls Krystal (27) and Rachel (6) )
26. When someone is diagnosed I’d like to tell them: enjoy the good moments when you have them
27. Something that has surprised me about living with an illness is: the number of medical personnel that have no idea about IIH. 
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter for a day so I could rest.
29. I’m involved with Invisible Illness Week because: awareness needs to be raised for the number of patients out there that haven't been diagnosed yet, and to increase understanding both privately and professionally for those already facing this condition and for those to come behind us.
30. The fact that you read this list makes me feel: happy that I've been able to raise some awareness in at least 1 more person. Thank you for taking the time to hear what I've had to say! 

September 15, 2015

Raising Awareness

I have recently been doing some research regarding IIH, primarily looking for information based in Canada as there are a number of Canadian patients on the various boards I've visited on Facebook and I frequently see the comments made that finding information that is Canadian based is non-existent. I know from personal experience, the awareness of this condition is minimal even in the medical community especially when distanced from the  neurosciences department in Hamilton.

Most information regarding IIH comes from the Intracranial Hypertension Research Foundation, based in the US and community pages on Facebook where I have noticed references made to support organizations in the US, Great Britain and Australia but no local resources for Canadians.

Google searching Intracranial Hypertension Canada comes up with the following results, primarily a medical journal (which is beyond the comprehension of most patients) and a couple of chiropractic articles referencing the condition.

I had found some information on the braintumour.ca website but currently that information has been moved and links are no longer working.  I have been in communication with them to get that fixed as our resources are minimal to begin with. Rhian's story shares her fundraising efforts for brain tumour awareness in Canada.

September 01, 2015


If you share one post from me... please make it this one! Raising awareness of IIH is VITAL as you will discover reading this post!

A little more follow up on my hospital stay back in April/May.  I was referred to yet another neurosurgeon since the surgeon that placed my shunt seems to have disappeared or, as I keep getting told, "is on leave". 

My shunt was tied off during my last hospital visit and on August 18th it was opened up again. I was experiencing symptoms of high pressure with the shunt closed, my head was whooshing all the time, more so if I bent forward to pick something up or anything that caused me to strain.  I still have headaches 24/7 but when the shunt was tied off, it was particularly worse as it would not ease with medication or positional changes.  The CSF was building with no where to go.  

When the shunt was untied, those symptoms disappeared almost immediately. I do continue to have headaches 24/7, but I can get minor relief by sitting upright and taking over the counter medications. I am waiting to book a follow up with the NS now that the sutures have been removed, and I am waiting on a referral once again to pain management.  I am hoping that something comes out of this visit as I do have something else going on.  I can't touch my head anywhere in the vicinity of my shunt.

Any contact with the bulb or catheter in my head causes what feel like nerve flares. I get sudden, severe pain throughout my head, especially across the back of my skull.  I also get strange sensations down the left side of my back at random intervals (not related to touching the shunt), at times I'd swear there is something crawling along my spine but there is nothing there.

I visited a local walk-in clinic to have my sutures removed.  When I was with the nurse who was taking my background information, she of course asked if there were medical conditions to be listed. I started with the typical "I have idiopathic Intracranial Hypertension, and pachymeningitis..."  she gave me a look and said "I'll just put hypertension".

I had to tell her that they were not the same thing at all and that it had to be listed as Intracranial Hypertension or at least entered on the chart as IIH not hypertension, definitely a true indicator of the importance of September being IIH Awareness Month.

Most medical staff have  not encountered this condition and all they hear is the "hypertension" part of the condition and automatically record it as "high blood pressure", not realizing that it is actually high cerebral spinal fluid pressure in the skull, certainly 2 very different conditions!

I find it of interest to realize, there are IIH foundations world-wide.  I've linked to a couple on this post, but I have been unable to locate a similar organization in Canada!

The most relevant post I could find was from the Canadian Cancer Society, indicating the cause of the increased pressure from a brain tumour. This is an accurate description for someone who does have brain cancer, but misleading for those of us with IIH as the above image from the I have IIH Foundation shows the comparison between the two conditions, the key difference being a brain tumour can be cured, IIH CAN NOT be cured.

For awareness month, many are creating videos such as this YouTube video to share details of the condition with friends and family.

Australia has it's own division of IH support.

I have this blog to share my experiences with this disease in the hopes that it will be shared to help spread awareness. 

Added a new cake to my cake page. 

#‎ChronicallyAwesome‬  ‪#‎BlogSupport‬ 

August 08, 2015

Supporting a friend!

Sharing a post today from a wonderful little girl who happens to be a friend of Rachel's.  Indy is raising funds for the Murdoch Children's Research Institute in Australia.  Any research into illness is a good cause and worth sharing :)

Indianna's Step-a-thon 2015 support page

August 06, 2015

Neuro Surgery Follow up Finally

Finally got into see a neurosurgeon to follow up on my hospital stay back at the end of April.  I again have to say how great the staff at Hamilton General are.  A doctor came out to the waiting room to call me in, and her first words were "we've met before". She was the NS that performed the bedside lumbar puncture back on May 3rd, the only time we met, but she did remember me.

After a review of my case history and discussion of my current situation, she consulted with the neuro surgeon I was scheduled to see, then brought him into the room.  A little more discussion and the conclusion was once again, we are going to untie the shunt on my left side and have both running again.  The right side appears to be low in pressure as the bulb does not refill quickly when pressed, but the left side could be moving back into the high pressure range given the fact that I'm once again hearing the "swooshing" sound in my ears when I lay down, bend forward or do anything that causes me to strain.  I'm waiting now for a call to go in and have the procedure done, fortunately it is just a simple incision and removal of the surrounding sutures under a local anesthetic.

I'm also waiting on a call for a pain management appointment.  It appears the original pain management doctor I was referred to a year ago is no longer around and explains why I haven't received a follow up call since the office cancelled my appointment that was scheduled for October. (I assumed I was still on the wait list as it can be up to 2 years just to hear about an initial appointment)

Hopefully, there won't be too long a wait to get in and be seen by someone as over the counter Tylenol and ibuprofen do not manage the pain very well.

July 28, 2015

MRI with Contrast

Interesting article posted today, one that could be of concern to people with IIH who have had multiple MRI scans with contrast. I know I personally have had many MRIs since I was diagnosed in 2012 and every one of them has been with contrast agents. I don't know if the contrast mentioned in the article is the same as the one used in Canada, but definitely something to keep in mind.

It's not known whether these deposits are harmful or can lead to adverse health effects. "To date, no signs or symptoms of adverse health effects and no pathological changes have been associated with these gadolinium deposits in the brain," the FDA notes.

For the full article see: Gadolinium Brain Deposits on FDA Radar

I received my referral to my next neurosurgeon last night. I'm going on to my third NS. First one retired, second one has been on leave since at least April and now I have a referral to this one as my follow up after my hospital stay in May never did contact me with a new appointment after his office cancelled my appointment. My appointment is booked for August 6th.  Not that long of a wait considering I've been in kind of a holding pattern since June with the follow up situation. Of course, the appointment notification came with the standard "if unable to wait, please go to nearest ER", which, although there is a hospital in Brantford, I interpret as "please go to ER at Hamilton General Hospital" simply because Brantford doesn't have the neurological facilities Hamilton does. 

July 27, 2015

Family, Cakes and Dentist...

Added 2 new cakes to the Piece of Cake page. (Recent cakes are added to the bottom of the page..)

Both of my sisters ended up with late cakes this year. Mandee got a giant carrot cake cupcake with butter cream icing for her 26th, and Tara got a butter pecan with cream cheese layer cake, decorated with the character symbol for Sailor Mercury from the anime series Sailor Moon for her 27th.

Rachel is growing up way too fast! She lost her first tooth this weekend.  It's been loose since the early part of June so it took a while.  She's of course thrilled that the tooth fairy visited!

Rachel lost her first tooth this weekend

Danyael (pronounced Daniel)

Catelynn loves the new doll house!
Speaking of kids growing up fast!  We went to London ON on Saturday with my mother and youngest sister to see Tara and her little ones.  Danyael is almost 6 months and has grown up so much already! Catelynn is 2 and a  half and had a great time playing with her cousin Rachel with a little people doll house Rachel has outgrown.

Rachel with Catelynn.

I have a dental appointment tomorrow which I am not looking forward to it at all! I've always had issues with dental stuff, but I don't have much choice anymore.  Three teeth have cracked and broken due to the prednisone and my rheumatologist wants to start me on a bone builder. Before he will prescribe the medication, I have to be cleared by the dentist that no extractions or dental surgery is required.  I've been taking vitamin D with the prednisone and Imuran, but I guess it's not enough and my teeth are being affected by insufficient calcium absorption.

July 22, 2015

New Glasses Arrived

I picked up my new glasses from Sears!  

Heavier frames
 tortoise shell
Lighter frames
 purple tint
Amazing how quick they were. I ordered them on the 15th when Rob got paid and was told 10 days for them to be in.  Well, I got a call Monday night saying they were ready!  5 days including the weekend, now that's great service!  I got 2 pairs of progressives with the deal they had on offer, $25.00 out of pocket after insurance. I certainly couldn't go wrong with that deal.  

2 slightly different frames, one a little heavier with a tortoise shell look, and the second pair are lighter, with a slight purple tint to them.  I decided the darker, heavier frames would be for going out, and the lighter pair for every day use.  I had the anti glare coating added to the lighter pair as I would be using them more frequently with the television and computer screens.  

July 20, 2015

Weekend Changes

Big weekend for changes!

I decided it was time to get my hair cut.  I've been trying to deal with my hair growing out of the shave I got for my surgery back in October.  It has grown significantly, but it is to the point where I can't do much of anything with the shorter hair underneath.  I find my hair gets too warm, so I have a tendency to wear it up off my neck. This means that the underside usually doesn't fit into the pony tail or braid.  Worn down, my hair just looked overly long and messy.

Down and loose
back with hair down

I ended up taking more than 10 inches off my hair in the long run.  I really had to push the hair stylist to cut it though.  It seemed like she was almost afraid to take off the length I was asking for!

The end result is a layered cut that falls to my chin.  I added a colour boost on Sunday, thought it is barely noticeable until I get out into the sunlight. To add to the changes, I just received a call that my new glasses are ready to be picked up! I can't wait! Looking forward to being able to see without having to struggle, and not having to take my glasses off and on depending on what I'm trying to look at.

Added benefit to the cut, less weight tugging against my scalp however it hasn't made a major difference to the headaches which I was hoping for.

new cut
Noticeable in the sun

July 10, 2015

Apointment and more

I had my regular appointment with Dr Rodriguez on Wednesday. Visual Field Test results were pretty consistent with previous tests, showing no further vision loss at this time. An examination of my eyes showed no papilledema, which he is happy with as it indicates the pressure hasn't gotten too high yet.  I was of course advised to call him for an immediate appointment if I have any changes in my vision.

Based on my stay in the hospital back at the beginning of May, and the lack of follow up with a neuro-surgeon my next visit will be in approximately 2 months instead of the usual 4.  He is also going to try getting me in with someone to follow up on the tied shunt and increasing pressure.

Rachel has been away since Saturday. She went to Great Wolf Lodge in Niagara Falls with her cousins and grand parents, then up to her Aunt's place in Innisfil. She comes home Saturday or Sunday.  Instead of enjoying the peace and quiet, I decide it's time to redo her bedroom. Big changes in the look of her room.  It started out with the typical mess a 5 year old can have.  Toys out of place and just generally over run with too much stuff. I weeded out the toys that she has outgrown and put everything back in it's place.


I made some changes to the wall hangings and finally got her Frozen curtains in place. We also added some purple vinyl to the panels of her bed and flipped it over (Kura loft bed from Ikea) and created a reading nook under the bed with her bookcase and old crib mattress. I think the end result looks pretty good, and I can't wait for her to get home and see it!  My only regret in redoing her room was the fact that I have started wearing a Fitbit Flex that was given to me by my good friend Barb.  I didn't think to put it on until after I had finished working on Rachel's room! All that activity that didn't get tracked!

While the following isn't IIH related, it does demonstrate that anyone can have a bad day!. This is a true story of something that happened to my older daughter Krystal while at work one day.

Image and video hosting by HilariousGIFs.comKrystal  - ok so basically here's the run down in "pretty terms". Its really bad/Sad xD 

On my last break, needed to use the bathroom in all ways. Went into the stall and did my business and realized - no paper - 

I had left all means of contact (Tablet and phone) in the lunch room so i probably just sat there a good 5-10 minutes doing the shake/drip dry but i couldn't just leave it like that due to the business at hand. 

I pulled up enough that i was covered (thankfully i was wearing my work apron) but not enough that i was going to touch my underwear. I shimmed into another stall but half way to a lady walked into the bathroom XD 

I informed her the stall was out of paper and was grabbing a handful. She informed me she needed the higher toilet so i apologized; handed her the ball of TP i had just grabbed and quickly locked myself into the other stall trying hard not to laugh while she did her business. 

I waited till she was gone, Cleaned up and quickly left the bathroom to finish my break in a fit of giggles. xD 

Yep True story! Note to self; ALWAYS take a phone into the bathroom then i could have texted my manager to bring TP into the bathroom to refill instead of having been nearly caught with my pants around my hips. Thank god for Aprons xD
I can only hope that she wasn't the one responsible for washroom maintenance that day at work!

July 03, 2015

Glasses part 2

So..I decided to shop around a bit as I wasn't completely happy with the glasses I picked out last weekend. I still have a few days before I can finalize my choices as the insurance company doesn't make exceptions, even in cases where eye exams are required annually.

Sears has a special going right now.

Sears Offiers

So I decided to see what they have to offer.

I ended up picking 2 pairs for less than my original choice, with anti glare treatment. The pair on the right have a slight purple tint to the frames, picked for me by my daughter Rachel.

Rachel had another lesson tonight, this time on Bailey, who happened to be the first horse she rode.

Rachel leading Bailey in for her lesson

June 29, 2015


Had the fun of picking out new frames for my glasses on Saturday.  Not an easy task to accomplish when visual field issues mean looking in the mirror doesn't give the full visual picture. Found the best way to determine the ones I liked best was to take a picture then compare them.

Option 2 was a popular look with my friends and family but ended up with the final choice that I did due to price and Robert's contributing comments.  I've had the smaller frame style for at least the past 5 years, seems odd to be going back to a larger frame but it does give a little more room for the progressive lenses which I think will be easier in the long run.

Current Frames
Option 1

Final choice

Option 2

Found this article to be interesting, so figured a little reading to go with the new glasses :) Chronic Pain and Relationships

June 27, 2015

Spreading the word

The word is starting to get out a bit about my blog.
A new blogger to our #BlogSupport network.
Posted by Chronically Awesome Bloggers on Friday, June 26, 2015

June 24, 2015

Eye Exam

Eye exam complete. I found out that I was correct, and my condition is covered for annual eye exams. Minor changes in my distance prescription and lots of changes to my near sight. Doctor is recommending I go with progressive lenses.

While they can't do much to correct vision in my right eye due to the optic nerve damage, it will certainly be nice to be able to see better than I have been, and not have to struggle to read labels etc.

June 20, 2015

Lost in Limbo?

The past few weeks have left me feeling like I've been lost in limbo, uncertainties in both eye care and neurological care seem to be raising their heads.

When I was in hospital last month, I discovered that my neuro-surgeon was on leave and a follow up was scheduled with one of the senior staff from the neurological department. My appointment was booked for June 18th at Neuroscience Ambulatory Clinic (NAC) in Hamilton.  While driving with Robert to Hamilton, I received a call advising me that the neuro-surgeon had been called into the OR and I wasn't going to be seeing him. There also appears to be some confusion about who I should actually be seeing. The doctor I was scheduled with wasn't the one who performed my most recent procedure and I should probably be examined by the one who tied off my shunt. They would get back to me with a new appointment, possibly with a different doctor. So far, I haven't had a return call on that one.

I booked an eye exam for the 23rd. It has been 2 years since my last one, and I know I need new glasses. Currently, I can either watch TV or look at my monitor, I have to wear my glasses for the TV and I have to remove them to see my computer screen.  I think I'm getting to the bifocal stage.  I actually got a call back from the eye doctor telling me that my last appointment was July 2013, and technically I couldn't see her until next month.

I did a bit of research and from what I can see, in Ontario, there are certain eye conditions that allow for annual eye exams, covered by the provincial health plan. From my personal experience, I fall under the 4th paragraph, under 65 with visual field defects. I provided the optometrist with my neuro-ophthalmologist information to confirm the Visual Field Test results for the past 3 years. Currently I am waiting on a return call from the optometrist to confirm that I do qualify for yearly exams under the OHIP program.

Eye Care Services Covered (Ontario)
People 65 years and older and those younger than 20, are covered by OHIP for a routine eye examination provided by either an optometrist or physician once every 12 months plus any follow-up assessments that may be required.
Specified ophthalmology services for patients of any age with specified medical conditions or diseases affecting the eyes are insured.
Insured persons aged 20 to 64 years with specified medical conditions affecting the eye can receive an OHIP insured regular eye examination once every 12 months.
Insured persons aged 20 to 64 with any of the following conditions can go directly to their optometrist or physician to receive an OHIP insured eye examination: diabetes mellitus, glaucoma, cataract, retinal disease, amblyopia, visual field defects, corneal disease, strabismus, recurrent uveitis or optic pathway disease.
Insured persons aged 20 to 64 who have certain medical conditions not listed above may also be covered for regular eye examinations. They should discuss this with their primary health care provider.

June 12th marked a day of progress for Rachel. We took her for her riding lessons and noticed the horse that she normally has her lessons on was already being ridden and the other 2 were not in sight. Well, Krystal accused me of squealing, but when they took Rachel to the paddock to get her horse for the lesson, she came back to the barn leading Patch! I will admit I have been waiting for this day. Patch is an adorable little guy with a big attitude. I can't say for sure if he is a pony or a miniature horse, I know there are differences but I don't know enough to state which he is. He does have the attitude of a full size horse though. I have seen him challenging the bigger and older horses in the paddocks, and showing that he is the boss.  He does require more direction from Rachel than the earlier horses she has ridden, but they wouldn't have put her on him for her lesson if she wasn't ready. 

Rachel on Patch

Talking of being ready and growing up too fast! Wednesday, June 17, 2015 marked Rachel's graduation from senior kindergarten! Where has the time gone? It's so hard to believe that she is already entering the primary grades at school.

Rachel - September 2013
First day of JK

Mummy Rachel and Daddy
SK Graduation 2015

June 03, 2015

Neurological and Immune System connection?

Just found a very interesting article regarding the connection between the brain and the immune system.  Could become very relevant to my particular case considering the autoimmune disorder - pachymeningitis and the neurological conditions with IIH.
"We believe that for every neurological disease that has an immune component to it, these vessels may play a major role.”  
Scientists Find Vessels That Connect Immune System And Brain

June 01, 2015

Sharing this publicly available event

Prednisone and Dental Issues

More fun! I get to experience yet another issue with long term prednisone usage!
It's a great medication, it's supposed to help with so many different things, but sometimes I have to wonder if it's truly worth it!

I was out grocery shopping yesterday, something I haven't done as much as I should. I tend to let Rob take care of the groceries, especially if I'm having a bad day. While we were out I was feeling the typical low blood sugar issues so picked up a chocolate bar to split with Rachel. Just a simple bar, no nuts, nougat, not sticky, just the typical soft bar similar to a Mars or 3 Musketeers.  Take a bite and I started thinking right away that somehow nuts had gotten into the bar during manufacture. Nope, turns out it's a chunk out of one of my molars.  I think that puts the count up to about 3 teeth  now starting to crumble and break.

I did some searching and apparently it is a common issue among long term prednisone users. Prednisone causes calcium absorption issues and the teeth need calcium to maintain health.  There are a number of other drugs that can cause dental issues.  A short list (not inclusive) of those can be found at Medication and Dental Issues.  

The fun part for me, ever since I was little, I have had an innate fear of the dentist! I had a bad experience once, and that was it for me. I brush regularly, I go to the dentist when it is absolutely necessary..aka pain to the point of intolerance, but if I can avoid that trip I will ... every time!

May 29, 2015

Happy Birthday to me!

Decent day today, head decided to be co-operative and not stress me out too much!

Flowers and Chocolates from Rob! Can't complain!

May 28, 2015

Moving Forward - May 28th

I find the strength is returning on my left side. It has been a slow recovery from the shunt procedure that took place almost a month ago, but I have been doing better in some areas.
Collarbone Incision
Almost completely healed

Nausea, vomiting, and indigestion issues have all disappeared. I still get to see Rob gloating every night with the "I was right" expression on his face!

Neck Incision healed
Where the actual tie was placed
I have an appetite once again and with some help have no trouble making dinner. I do have increased pressure in my head, especially when there are changes in the weather. If it's too cold or a storm is approaching my pain levels increase and I have noticed increased swooshing noises in my head, especially if I am bending forward or laying down.  I guess when I have my follow up, that will have to be addressed.

I have considered asking the neurosurgeon if perhaps it is time to consider replacing my current shunt with a programmable one.  I seem to have about 6 months before adjustments that result in pressure changes in my head take full effect.

Approximately 8 months after my right side shunt was placed, my symptoms returned and eventually a second shunt was placed. 6 months after my left shunt was placed, I experienced over-drainage and low pressure. Already, I can feel the pressure building and I have the feeling that it will continue to climb.

A programmable shunt wasn't considered when I initially had my surgery. I had a pre-set valve placed both times and they seem to vary immensely between high and low CSF pressure levels. The magnets in the MRI cause programmable shunts to reset and require follow up to have the shunt flow rate adjusted. As I was going for frequent MRIs, I would also require readjustment after each visit.  Currently, the number of MRIs have been reduced to an annual occurrence which means the frequency of reset would be much less, and this option may be the answer to the fluctuation in my CSF levels.

May 27, 2015

2015 - Final Catching up Post

Wow! Quite the journey so far, and it's still not complete!

This is a big post, especially when you consider it contains happenings from January to May 2015. My posts after this will be more frequent, typically recording events as they occur.

The new year started out with the usual pattern for me. January was rather uneventful. I had the usual headaches but no swooshing noises.

February once again had me heading to Hamilton for follow up appointments with the Bariatric Clinic (another 10 pounds gone) and a routine MRI. While at my bariatric appointment, we discussed further the addition of a daily injection to my routine. Victoza was the medication in question, currently a diabetic drug that is in process for approval in weight loss purposes.
VictozaLiraglutide, an injection treatment already approved for diabetes treatment, can help reduce body weight in people with obesity when used at a higher dose than is usually used in diabetes. Health Day Article
I was provided with a prescription for a 1 month supply with the instructions to inject 0.6mg daily until my next visit to the clinic. The first 48 hours following my first injection were not pleasant at all, I couldn't move without becoming sick. The nausea and vomiting gradually eased and I was able to consider food.  It's no wonder this medication helps with weight loss, if everyone becomes as sick as I did while taking it, their ability to eat becomes greatly reduced.  For the first week, the most I could tolerate was simple food, toasted English muffin, chicken noodle soup, and salted crackers.

Valentine's Day - Roses and dinner from Robert! We headed to one of our favourite places, The Golf Steakhouse in Kitchener, while Rachel spent a couple hours visiting her Grandma and Aunt. I had my usual prime rib dinner and found myself barely able to eat it. Of course, the meal includes an amazing salad bar and soup so I ended up taking the main portion of my meal home for the next day. First time I've ever walked out of that restaurant with a doggie bag!

March 5 was my next follow up with the bariatric clinic. We discussed my tolerance of Victoza and I was advised that I seemed to be doing better than many on the drug. My weight loss was continuing at an acceptable level and I was provided with a 3 month prescription with the instructions to continue the dosage of 1.2 for a month then to increase to 1.8mg.

March 9th was my follow up with Dr. Rodriguez.  My eyesight has remained stable.

I met with Dr. Khalidi on March 24.  As we discussed my current medical situation, it was decided that a sleep study would be a good course of action. My symptoms of headache, nausea, and vomiting were ongoing, I advised him of my use of Victoza and my ongoing weight loss.

I held off increasing my dose of Victoza until after my sleep study which was Friday April 10th. It wasn't too bad considering I typically have a lot of difficulty in falling asleep. I was of course advised to not consume any caffeine after 6pm.  I arrived at the hospital where the study was to be done for 8pm. By about 8:30 I was wired up and left to relax.  I had my e-reader with me, so spent the evening reading and waiting for bed time. I had a control pad that was placed on the bed beside me when I was ready to sleep. I settled in for the night about 11:30 or so as they had to get the study started. Falling asleep was my usual pattern, I had trouble, so I continued to read until I eventually drifted off. At one point during the night, I was awakened when the nurse came in to turn on the room fan, apparently I was breaking out into night sweats. I haven't received my results yet, expect they will be available at my next appointment with Dr. Khalidi.

All wired up for sleep study
Typically, I was making medication changes on Sunday, this time, we decided I would increase my dose on Saturday so hopefully the side effects would have tapered off in time for me to walk Rachel to and from school on Monday. Well, that didn't happen, increasing the dosage once more seemed to exceed my limits. The side effect of vomiting and nausea went far beyond the day or 2 I had anticipated.

I could do nothing more than lay down, even that resulted in getting sick if I happened to roll over or move too quickly. Rob ended up having to leave work, drop Rachel off with me at home and head back to work. I couldn't summon the strength to walk across the street to her school.  Other side effects continued to occur as well, especially heart burn and indigestion. I couldn't sleep, couldn't eat, couldn't do much of anything.

I did achieve one goal though! April 11th I weighed myself and discovered that I had reached my first major weight loss milestone.  100 pounds gone from my worst weight to my current weight.

Comparison of highest weight to current
April 29th, my headaches were bad, but I knew it wasn't increased pressure, I didn't have any swooshing noises in my head and rather than the outward pressure from being too full, my head felt as it if were squeezed in a vice, the only relief I got from the headache was to resort to my heat packs and stay laying down. Sitting upright for too long just made things worse and increased the nausea and vomiting exponentially. I tried stopping ibuprofen knowing it can increase stomach issues, but that made the pain even more intolerable. Antacids did nothing to control the burning and I was having difficult keeping even water down which had the potential for dehydration adding onto the current problems.

Given my experiences in 2008 when everything started up, I had come to distrust finding satisfactory results from a trip to the emergency department. Robert was getting concerned because I was in worse shape than normal, so he made a call to Dr. Klurfan. When he received no answer and discovered her voice mail was full, we decided waiting was out of the question. It was time to visit the ER. The first decision we faced was if we should go to the local hospital, or make the drive to Hamilton.

Hamilton ended up being the choice we made.  My records from the past 3 years would be readily available through Hamilton Health Sciences and provide a history for the doctors, a resource the local hospital wouldn't have, virtually putting me back at square one. I wasn't too long waiting to get into the emergency room, they were busy and low on bed space but they were able to find an overflow spot for me.  It wasn't long before I saw the ER doctor and she got me started on an IV for pain with Ondansetron added for the nausea. A neurology consult was brought in and after reviewing my history the decision was made to admit me in order to determine if my shunts were failing or if there was something else going on.

I spent the night in the ER then was moved to the Clinical Neurosurgical Unit. On the 30th, doctors decided that we could be looking at a shunt revision being required and I was made NPO in anticipation of surgery. I had elevated white blood counts, reflective of possible infection and a specialist from Infectious Diseases was brought in for consultation.
NPO: Nil per os (alternatively nihil/non/nulla per os) (npo or NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons. It is a Latin phrase whose usual English expansion is nothing by mouth (most literally, "nothing through the mouth"). Variants include nil by mouth (NBM).
An infectious disease (ID) specialist is a doctor of internal medicine (or, in some cases, pediatrics) who is qualified as an expert in the diagnosis and treatment of infectious diseases. After seven or more years of medical school and postgraduate training, ID specialists complete two to three years of additional training in infectious diseases.
ID specialists have expertise in infections of the sinuses, heart, brain, lungs, urinary tract, bowel, bones and pelvic organs. Their extensive training focuses on all kinds of infections, including those caused by bacteria, viruses, fungi and parasites.
Dilaudid (hydromorphone) is an opioid pain medication. An opioid is sometimes called a narcotic. Dilaudid is used to treat moderate to severe pain.
Abdominal ultrasound and shunt x-ray series were ordered to verify no physical or technical issues were resulting from the drainage catheter in my stomach. I continued to receive Dilaudid and was placed on an alternating schedule of Ondansetron and Gravol to control the nausea and vomiting.

For the first 3 days I was NPO for most of the day as there was still a possibility of a shunt revision being done. Ironically, the NPO orders were reversed after dinner had been served on the ward. By this time I was finding the thought of food a little more appealing thanks to the anti-nausea medication.

May 2nd I saw one of the neurology residents and was advised that an LP would be done later that day. I didn't actually get the LP done until the next morning. The doctor came in around 3 am to say she was having a busy night and would be in to see me in the morning to do the spinal tap.

The tap on May 3rd didn't go well for me. It was performed at the bedside by the resident.  She had difficulty getting the catheter into the proper space and it took 3 attempts including having another resident come in to assist.

Shortly after 10am I sent a message to Rob, letting him know that my LP came back with a very low pressure reading (13, which agreed with the symptoms that prompted me to visit the ER in the first place) and the doctors had decided to tie off the left side shunt and send me home.

That afternoon I was moved into the procedure room to have my shunt tied. I did have some concern about the success of the procedure based on my experience with having the right side tied off only to be reversed a week later. Previously, the tie off procedure was quick and relatively painless, I expected the same this time. I quickly found out I was wrong!

After freezing, an incision was made at my collar bone on the left side and the resident proceeded to search for the tubing in order to place a couple sutures around it. This took longer than he anticipated and I could feel the freezing wearing off and could feel tearing sensations as he probed for the tube. Freezing was re-applied 4 times before the resident decided that he would close off the incision and start again. I recall him going through 4 changes of gowns and gloves, something I don't believe to be typical during a procedure, but I guess he felt it was necessary, or perhaps just needed to cool down before proceeding.  Additional pain and the resulting nausea required more medication added to my IV. By this point, I had reached my limitations, I was not tolerating the procedure well and found myself shaking and in tears, an unusual reaction for me given what I had learned to put up with over the past 7 years.

May 3rd
Incision at collarbone for shunt procedure
A second site was prepared and a small incision made on my neck below my ear. The tubing was located relatively quickly this time, but I experienced a lot of pain that seemed to be nerve related. When the tubing was shifted to allow for the tie to be placed I felt burning sensations along the top of my ear and felt as though my hair was being pulled out by the roots. After a few minutes of this, the ties were placed and the resident closed the incision with steri-strips.

 We celebrated Rob's birthday with my return home. My sister, Mandee stayed with us for a few days to help out with Rachel and look after meals while I was recovering.

I received a call booking a CT scan and follow up with the Ambulatory Neuroscience clinic for June 18th.

Mother's Day - Rachel presented me with a project she had made at school. It really hits home just how my daughter perceives my illness, and that Rachel has never known me to be 100% well.  I have been lucky, she really does her best to help out around the house and helps care for me when I'm having a bad day.

Rear of Rachel's Mother's Day gift
Thanks Krystal for the added coffee inspired decoration ;-)

My headache eased a bit shortly after having the shunt tied but I soon found myself experiencing occasional swooshing noises. I continued to experience nausea and vomiting and the resulting weaknesses right up until May 15th. The previous day I made the decision to stop taking Victoza to see if it was adding to my symptoms.

On the 15th I had my sutures removed from my incision. On the 16th we had a gathering of family in a combination celebration of Rob's Birthday, Mother's Day, and my upcoming birthday.  It was also a day for my mother and Krystal to relax and enjoy the quite time following a busy tax season. I have to confess that perhaps once again Rob was right, and the Victoza was contributing to the nausea. Within 2 days of stopping the injection, my nausea had eased drastically and I was able to enjoy a prime rib dinner.

May 15
Sutures out