Howdy Hydrocephalus

Understanding my unique gyroscope


Fall Follow-ups

IMG_0794.JPGWe went to the Brain Injury Clinic on Oct 22 at Foothills hospital in Calgary and Monday, Oct 27, was a general neurology appointment at the South Health Medical Centre. I am so lucky for my chauffeur, Chris. He has logged a lot of kilometers on his days of to haul me around. Not only does he have to get me there, he has to keep the kidlets occupied while I have my appointments.

Foothills hospital was a zoo. I had to basically tuck and roll out of the vehicle as traffic was lined up and there was no parking. Chris & the boys drove around the parking lot for 20 minutes and almost had to pay for not even the privlege of parking but for being in the lot for too long. They ended up driving down a hill past the hospital and finding a park to hang out in until my appointment was over.

The brain injury clinic was quick. Because I am still shedding from SJS there is no meds except I did have the 40 shots of Botox in my head. Holy hannah the burn, pop of skin and burn. You think I would get used to it but not this time. I think the stress of boys not getting parking made me tense so it felt worse. I tried to do big deep breaths but It didn’t help too much. I needed to focus. At least the Dr and med student were super quick – bang, bang, bang – head and neck felt like a construction zone. No pain no gain – right?!?

I am fortunate for the very good care and doctors at the clinics. They know we come from out of town and usually try to see us early. They even offered up free parking passes. The doctors and staff in the clinics show true warmth and caring. I feel very fortunate to have my clinics at these hospitals. I am happy with the open mindedness, treatment options and perserverance to try to find a combo that works for me and my brain.

At the neurology appointment I found out that my right ventricle is finally shrinking – yay!!! The neurosurgeon couldn’t guarantee any ventricle size changes after the ETV in 2012. The neurologist was very happy about my MRI results and that in turn has made everyone else happy too. My neurologist wasn’t happy that I was using Tylenol more than 15 times a month. It has been the only pain reliever allowed for me since Steven-johnsons Syndrome (SJS) and I can’t say if it did anything for pain levels or it was more of a pacifier that I was able to take something in hopes that my pain would eventually go away.

So what’s the big deal about over using Tylenol more than 15 days a month is that it can create nasty headpain called rebound headaches. My neurologist evan said that the packaging should have that information on it but doesn’t. So here I am freshly Botoxed (waiting for it work its way in) and now no Tylenol and trying not to let the stupid pain in the head and body get me down. It has been a rough week but I am surviving. I just starting putting an essential oil on my head that is supposed to help pain. If you keep re-applying and not waiting for pain to escalate, it works. I have heard that from other people with chronic pain journeys who use oils to help – don
t let pain escalate re-apply often. I may have to get a straight bottle of the essential oil in the blend I have to get full effect.

It will be a while before I can try a new med – one with little or no side effects other than lowering blood pressure. I need to get down on the prednisone…another 5 weeks or so depending on flares.

When you have chronic pain you are willing to try anything beyond traditional mediicine to help. I know when I do my hand reflexology on my self it works. You have to keep an open mind and find what works for you – especially when options are limited.



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Driving everyone…

Nope I am not driving everyone mad…or at least no one has said anything to date…or I just haven’t noticed, but instead I drove the car again.  Yay! Independence.  My dad leaves on Tuesday and I need to get everyone around town to school and activities so I am taking the plunge before my post surgery follow-up on October 19th.  It hurt my head the first time I drove to Redcliff, on Wednesday.  There is so much stimulation to take in and focus needed to not get distracted.  Today I drove to Costco and that was better because my head didn’t hurt as much.  I think I will be doing short drives for a bit. I know the brain is working hard when it hurts.

Beware warrior woman is on the loose and there is no stopping her.