When we were in Paris recently, my husband and I decided to go back to the Eiffel Tower where we were engaged. Wouldn’t you know, they now have metal detectors before you can go up and see the view. I walk through and “beeeeep”! For a split second I forgot and tapped my pockets looking for change, then it hit me. My head! “Euuuhhh, Il y a quelque chose dans ma tête…” as I point frantically at my head. The security guard looked at me like I was crazy… and thankfully took pity and let me go through.

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spinning

At the 4 month mark, one of the biggest changes in my life is my perspective. Every day is a gift, something to make the most of. Things that I hummed and ahhhed about in the past I now just do. My tolerance for unhappiness is gone, whatever irks me must be solved.

Sometimes I stop for a moment, and the realisation hits me that I had brain surgery not so long ago. I don’t know that it is something you can ever truly wrap your head around. You can barely see the scar in my hair now, in fact the only give-away is to the trained eye, and in the form of a scar on my neck from the central line.

My sense of smell has yet to return, but hopefully I can get some more answers when I see my new neurologist in a couple of weeks. *New* neurologist because I was less than impressed with my last one, and didn’t feel like seeing a doctor in the long run whose opinion I simply did not trust (Lesson = shop around for good doctors like you would anything else). My new one is also affiliated with St. Michael’s Hospital which will make co-ordinating him  with my surgeon and records SO much easier.

I am now back at work. I have been lucky to be able to slowly build my hours week by week, starting at just 12 hours to full time by June 1st. It certainly has not been without it’s challenges though, and I really feel it has been an internal personal and professional battle.

One of these personal battles at work has been with my brain of course. It doesn’t want to focus for long, and is easily distracted by the sights and sounds an open plan office brings. I feel anti-social, but putting the headphones on has helped, now if only I could wear blinkers to tackle the peripheral vision!

Then of course there is the exhaustion. Before I was back at work I was able to exercise several times a week, either out on my bike or running. As work hours increase however, my energy for exercise goes down considerably. So I have learnt that I can only increase one thing at a time. Right now, frustrating as my inner-athlete finds it, that has to be work.

I am back spinning at Quad however. I would normally have a pretty defined cross training plan, but I have decided to just go with what feels right. Spinning while tough after such a long break, is where my motivation is taking me. It’s a sport that takes not only takes physical endurance, but mental endurance too. If you are mentally focused and have a clear mind, you can physically achieve so much more (which is why talking during spin class is a big no no). As I already mentioned, my focus isn’t great right now so spinning has double benefits for me.

I have also started sewing at The Workroom. Much of what I have read about recovery involves flexing that brain and learning how to do new things. It helps get your mind out of the same old patterns. So I have learnt how to use a sewing machine properly and am quickly getting a buzz from making things for myself.

A major side effect of all this is the need to do something worthwhile, to balance out the industry in which I work. I really need to do some work that gives back and makes a positive difference. So, I am now a volunteer for The Brain Tumour Foundation of Canada in a variety of capacities. They have lots of ideas on how I can help them out, which I am really excited about.  There is no better cause for me than this one where I can combine both my personal and professional experiences.

In a few weeks my husband and I are off on our honeymoon. It was supposed to be Christmas in Paris, but due to my diagnosis and being warned not to fly, we had to cancel. Instead it will be Summer in Paris. Now I am off to make a new purse for the trip 🙂

Update, 8 weeks post-op

March 25, 2009

Here I am, 8 weeks after my craniotomy to remove my bugger of a meningioma. My follow-up with the surgeon is in a week so I don’t know officially how I am doing just yet, but this is how I’m feeling these days…

It hasn’t itched since before my staples were removed, but now my scar is itching again and it is very annoying! It started out that when I scratched the itch, my head couldn’t feel the scratch… and so resolve the itch. Now at least I can feel the scratch, but the itch persists! What a tongue twister 😉

I can lie on the right hand side of my head, but I avoid it. My scalp isn’t flexible where my surgery was, normally your scalp will move around on your head if you push it with your fingers. When my scalp moves on one side of my head, it pulls against the surgery area. Doesn’t hurt, just feels weird. I put castor oil on the scar as recommended by my naturopath*, to loosen this up which is slowly working.

With good days and bad days, I still get tired if I push myself too hard. It is frustrating, but to be expected. When I look back several weeks, my endurance has come a long way. Still suffering from the hypervigilance but to a lesser extent. Of course, there is a direct correlation between the two.

Also still can’t smell anything, not even the imaginary chemical smell I was experiencing. Wonder what it means that the olfactory hallucination is now gone?

As you have seen, I am trying to reduce the toxins in my life. I am treating it as a bit of an experiment to see if all-natural products do the job just as well. So far they do, you just have to get used to fewer bubbles as natural products do/should not use sodium laureth sulphate (made by mixing sulfuric acid, monododecyl ester, and sodium salt eeeeek) amongst other things. These products also seem to have a slightly different consistency, and sometimes need to be shaken before use, but really thats all the superficial differences I can think of.

 I guess when you go through something like this that has no known cause, you really stop taking things for granted and start thinking about what you CAN prevent. Why expose yourself to ingredients that are linked to cancer, developmental/reproductive toxicity, allergies, immunotoxicity, neurotoxicity,  Persistence and bioaccumulation, Organ system toxicity (non-reproductive), Irritation (skin, eyes, or lungs), Enhanced skin absorption, Contamination concerns, Biochemical or cellular level changes…

*Make sure you find out what is right for you at your stage of recovery.

So my follow-up with my surgeon on April 2nd, over 2 months after my surgery. Hey, lets do a craniotomy, now shoo shoo off into the world! To be honest though, it has all been absolutely fine and I haven’t needed to see a doctor asides from having my staples removed. 

I can finally get all my questions answered, GPs really don’t see (m)any brain surgery patients so can’t really answer anything with certainty…

  • How is my brain, my cerebral edema, my skull, my incision?
  • Am I officially 100% tumour free, and was it definitely WHO Grade 1?
  • Is the gaping hole in the middle of my head filled with brain again? Lets see that CT!
  • Give me a time-line on this no-smell thing! Plus, the persistent chemical smell is getting really really boring. 
  • When will the large areas on my head that have no feeling, sort out the nerve damage? When my head gets itchy, I can’t feel anything when I scratch. Its driving me bonkers!
  • Do I still have to sleep on a 30 degree angle? Your nurses put the fear of god in me when it comes to head drainage! I’d really like to go back to a single pillow.
  • When can I exercise again? More than walking that is, I’m talking getting back to spinning and running here. 
  • When can I ride a bike, or more specifically when is it ‘safe’ for me to fall off a bike?Will it ever be safe?  I love my little Dahon, and hate the TTC.
  • When can I drink tea/caffeine again, and alcohol… when can I have a lovely glass of red again? Mmmmm Cabernet Sauvignon!
  • When can I fly? Life owes me that Parisian honeymoon that we had to cancel.
  • And I know neurosurgeons don’t care about vanity, but I’d like to know if  I will always have a dent in my head, and when I can have a hair cut, and use styling products. 
  • When will I be able to go back to work? Right now I can’t even concentrate through a 2hr lecture and be able to function afterwards.

There will be many more questions by April…

Early detection

March 1, 2009

Something I have learnt is to follow your instincts, you know when something isn’t quite right with you. Early detection is everything in the world of brain tumours – as with many ails –  so paying attention is essential. We need to start finding these things on purpose though, and not by accident like so often happens.

As the Brain Tumor Foundation has said, if only the general population could have routine head MRI’s, just like we work preventatively with PAP smears, mammograms, colonoscopy and prostate exams. Besides, according to the Brain Tumor Foundation an estimated 1 million people* have undiagnosed brain tumours (of all varieties) in the US**, 25,000 of them in NYC. 

*Every site quotes different statistics so this just gives a rough idea.        

**Sorry, Canadian statistics are much harder to come by.

Anosmia

February 17, 2009

Break through! Perhaps I can taste, but not smell… I found this, the Anosmia Foundation. Anosmia means a complete loss of the sense of smell (temporary or permanent). This is an interesting excerpt from their site:

Despite the close association, taste and smell are anatomically and functionally distinct… The olfactory system is vitally important in determining food flavors. During chewing and swallowing, odor-laden air is forced from the rear of the oral cavity to the olfactory receptors,evoking many flavor sensations that people usually associate with taste but that are almost completely dependent on the sense of smell. 

The sense of smell plays a major role in the flavor of foods and it is common for individuals who lose their sense of smell to report that food loses its taste. This is of course incorrect; the food has only lost its aroma, and taste (sweet, salty, sour, bitter) remains intact. 

Recent studies indicate an even greater importance of the interaction between smells and tastes in food flavor – the sensitivity to an odor (almond) actually improved when there was a sweet taste in the mouth, but not with a savory taste – almond + sweet is experienced as cherry – this suggests there is actually a specific site in the brain where integration of taste and smell information occurs – in other words, “flavor” is greater than the sum of taste + smell, so only getting half of the sensation will give you less than half of the “flavor quality”! 

Anosmics can taste quite well — nothing missing there. But they cannot experience flavor.

Smell is 10,000 times more powerful than taste. Taste is mostly (~75 %) smell. 

More info on this here.

Causes

There is a HUGE list of causes (check out the full list), here are some ones relevant to meningioms: 

  • cranial surgery
  • surgery with general anesthesia
  • transphenodial surgery
  • swelling of the brain 
  • polyps or tumours
  • Antidepressants & anticonvulsants: amitriptyline, carbamazepine, clomipramine, clozapine, desipramine, doxepin, fluoxetine, imipramine, lithium, phenytoin, trifluoperazine. 
  • Anti-inflammatories: auronofin, colchicine, dexamethasone, diclofenac, dimethyl sulfoxide, fgold, hydrocortisone, d=penicillamine penicillamine

Dexamethasone (brand name Decadron)  and Phenytoin (brand name Dilantin) are both on the list, and I think are both common drugs to be on after a craniotomy. I certainly was. Benefits outweigh the negatives though when you think about what they do.

Foster Kennedy Syndrome

February 17, 2009

I remember my neurosurgeon standing by my bedside in neuro ICU, his interns (SO many interns) huddled around the foot of my bed. He said something like, “This is is the lady who presented with the olfactory grove meningioma and ____ _____ syndrome.” Forget the interns, I asked ” What syndrome? What’s that? You never said anything about that!” Then I promptly forgot everything he said.

Well then smashedpea’s blog reminded me, Foster Kennedy Syndrome. It refers to a constellation of findings associated with tumors of the frontal lobe. Apparently it is quite exciting for neuro medical types. I had no symptoms of it before, but I do now, aka, no sense of smell “Anosmia”.