Howdy Hydrocephalus

Understanding my unique gyroscope

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Neuro plasticity

Found this article & thought I would share neuroplasicity
I wish there were more treatments here that were covered by health care. Need to ask my brain doc Neuroplasticity, also known as brain plasticity, is an umbrella term that encompasses both synaptic plasticity and non-synaptic plasticity—it refers to changes in neural pathways and synapses due to changes in behavior, environment, neural processes, thinking, emotions, as well as changes resulting from bodily injury.
Neuroplasticity – Wikipedia, the free encyclopedia




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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Neurology Exam

Wednesday I have another appointment at the Brain Injury clinic. We will decide then if my Stevens-Johnson Syndrome (SJS) has settled down enough to have my next round of Botox shots and start some other pain/headache meds. If the Physiatrist (Rehabilitation Specialist) does not think it is wise to do the shots or try any meds then we come up with a new appointment time and do the wait & see thing again like last time.

I have been coping pretty good with the pain. I am getting tired, and hate the fact that when I stop to rest that the pain feels so yucky that I push myself to keep going. I go until I burn out. Then because I am burnt out and my immune system is poochy I get a damn SJS flare and then the flare does the irritate bright red, slight blister, slough and burn physically. I had one that affect my face and mouth around thanksgiving. Then it started to affect other parts of my internal organs this week. Grrrrr! So I am told to be patient that it is in the early stages of recovery. I have heard that one before….my TBI (traumatic brain injury). I need to breathe…breathe…think distracting thoughts and breathe in pleasantly distracting smells.

I found this pic online and had to just share. It made me laugh.

Because Foothills is a learning hospital, I often get the full meal deal Neuroexam. That includes both physical and cognitive testing by the interns or other doctors in training. Neurology exam made simple is a great site to see the videos for the physical testing. They often make me walk in straight line and keep my eyes closed and see me weave forwards & backwards too.

I practice at home the physical so I can be better each time. I practice from my nose to imaginary other fingers so I can be quicker like this

20141020-184830-67710345.jpg I must look pretty funny if someone saw me doing this in my bedroom. At least it always make me laugh. I am working out my muscle memory to coordinate my right hand and response time. I know that it will do it, but the lag time is what kills me. I think that the Docs think I am a good patient for students to learn on as I am as stubborn as a mule and don’t like to give up.

Here’s to getting myself all psyched up for what is like an Commenwealth Games event for the brain injured. The Olympic Gold medal event is what I would consider the Neuropsych testing that takes at least four hours to do. You just gotta know that I have to win that darn first place medal during the exam. I always hope that I will miraculously not show any signs of anything wrong with the brain. I can always hope for the Hail Mary and take whatever small gains as a win.

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A Mother’s Plea

This is a story I found on the Forbes site and I thought I would re-post. In the United States they have Hydro walks for fundraising and education. I am not too sure what happens here in Canada. Most people look at me with a quizzical look when I say that I have hydrocephalus.

A Mother’s Plea

Heres to hoping to spread the word and find better ways to deal with this condition.


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Fight or Flight

Okay I have gotten better with dealing with stress management after my diffused brain injury. I have done counselling, I have learned many techniques such as visualization, meditation, breathing and using essential oils. This techniques did not come naturally, I had to re-create new pathways in my brain to do things. It was like telling my right leg – heel then toe when teaching my right leg not to be lazy and start walking normally again. I had to tell myself over and over again to breath in & make a big stomach then breath out through mouth.

I remember telling the doctor that normally I didn’t feel anxious unless I started to become overwhelmed with too much noise, movement or visual stimulation. However I didn’t even clue in that my anxiety was really bad until recently when I it finally it clicked that my heart pounding and racing when I would sit still or lie down was actually anxiety and the wires in my head were still criss-crossed. My body has a hard time understanding the “fight or flight” response to stress. It appears to alway be kicked in to high gear and ready to either fly or fight. So everytime I have lie down I have to let my body relax and it can take upwards of an hour or visualization, oils and structured breathing.

When coping with stress, it takes a lot of mental energy in order to recognise symptoms, create strategies to cope and remember techniques for coping. My brain injury impacts my ability to do all all at once. Often there is a delay and I don’t even realize until later. So even though I have come far, I may still be a little quirky to all you normal people out there

I do not do well with confrontation. I am collaborator. My processing and uptake speed is slower so I can’t necesarily understand everything or gauge the situation approppriately. If I am tired, distracted, in pain, I will be distracted and not get the whole picture. I may be just in my comfortable space of smile & nod & look like I am all there…I have become a great actress over time. My speech therapist would catch me on this – the glazed over deer in headlights type of thing and say that it was rude to fake paying attention. Oh well – rude or not it is one of my coping mechanisms.

A few weeks ago I was in a room with some people who I thought were acting rude. There was name calling and other things. I didn’t say anything because my mind went blank. I just sank down and typed on my phone. I put a comment on Facebook that was an observation and didn’t include names. I didn’t even know the people’s names. I sort of regretted posting my comment until the person ambushed me outside a public building.

It started about a comment about my headband. I didn’t recognize the person and happily told the person about where I got my headband until the person told me they looked me up on Facebook (creepy) and if my comment was about him or her. I said yes it was. Then the person proceeded to ask if I was going to tell the principal. (what…we are not elementary kids). My heart raced, and I rambled on. I couldn’t stop talking. I was overwhelmed, scared and stressed out. I thought i was going to pass out. I rambled on about how it there are issues they should be brought up to staff and not left to stew.

I ended up going home and forgot to tell Chris about it for two days. When i did he got angry. I told him that my anxiety was shooting through the roof every time I opened the door to that public building. My body was acting like it didn’t belong to me – no control. I am not angry at the person. I think the person was having a bad day. There person seemed nice. I have been working on regaining control of my body wiring again. It will get there. I can not believe how wussie i feel. My physical overreaction is unnerving. I don’t like the feeling of fast pounding heart beats where you can hear your pulse in your head. God is not like I am perfect or never lose it…just ask the kids about mean mommy who yells. I tend to usually just threaten that statement and it works, but sometimes a loud voice can get you where you want to be too. Chris knows when I have done too much and I may be losing and tells me I should go lie down. It is true, I tend to lose it if I have used up all my energy and my cognitive/coping/survival skills are forgotten or threshold goes down.

So generally i try to be positive, proactive, and use my energy wisely into boosting behaviour instead of suckage behaviour.

I am trying to take a less stressful approach at life; to laugh more, frown less and treat people as I would like to be treated. I like the radiance of positive energy and try not to let negative energy drag me down. Sometimes it is so hard and at the end of the day when I have used up everything to appear/act normal it is my family who sees me struggling. i need to put them first so they do not get the short end of the energy stick. I promise to try!


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Snake skin

When you have Stevens-Johnson Syndrome (SJS) your skin gets all irritated, bumps that turn to blisters, then scab and look gross. It also means burning hot skin that peels off like you have a sunburn or are like a snake. I feel like I am snake. my calfs burn and face peels. When I go into the hot tub, the jets affect my skin and it can hurt after a short time.

I have been improving! my mouth just feels like a cheese grater and goes in waves of being sensitive but it is no longer a bloody gross mess. I have a dentist appointment coming up and cringe as to what he is going to say.

my face is still bumpy but not as much. I finished my Benadryl and now down to eight prednisone pills a day. In eight weeks I should be off the pills and my adrenal system working again – fingers crossed!!!!

I have a brain injury appointment again near the end of the month and we are hopefully going to be allowed to do Botox to help with the headaches as the pain has come back. I am 24/7 at a pain level 6 or 7. But what is helping keep at bay is Peppermint and Frankincense oils. I am able to function when I apply every 4 hours. Sounds silly but works for me. My physiatrist (rehabilitation doctor) believes in oils, alternative treatments and vitamins to aid in my recovery. I have begun to take the vitamins prescribed again and feel energy from levels of vitamin D he prescribed.

I am literally shedding my old skin and beginning to thrive and feel comfortable in my new skin. Sometimes it is not too bad being a snake!