Howdy Hydrocephalus

Understanding my unique gyroscope


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Neurosurgeon says ETV a success

Last week I went and saw my neurosurgeon. I had a scan done in January of my brain. He confirmed that the ETV hole has good CSF flow and everything looked awesome. He then gave me an MMSE or mini-mental state exam.

He has administered the test three times to me. The first time I scored 24, second 6 months later 25 and 26 just last week. Basically this test is usually used to figure out cognitive impairment overtime with patients with dementia. The test does not incorporate your education level so that has to be adjusted when scoring. My neurosurgeon indicated that prior to surgery I showed signs of mild cognitive impairment…no shit Sherlock. I forgot how to read a map, where the hospital was located, how to do my job…that was scary! It was so frightening to see things slip away, but by the time my surgery, I so impaired that I showed no rational fear about surgery or risks. Since surgery I have thankfully shown progress and now considered not to have cognitive impairment in his eyes or so he lets on!
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The test was easier for me on some parts and challenging on others. The second time I took this test, I had trouble counting back by sevens from 100 that the doc asked if I was trying and I got all teary-eyed. This time I did better and I was impressed with myself. I also 3 out of 5 objects without prompt at end of test. With prompt, I am got one more item. I had trouble when drawing my clock. I couldn’t remember which way the hands went. I was supposed to do 1610 but think if came out like 1320 instead. I even admitted that I couldn’t remember where the hands where to go.

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The funny thing is that people often say that my neurogenic stutter is gone. True the brain is healing and the speech therapist tips, tricks and strategies have helped me considerably but the darn stutter reared it’s ugly head showed up again during the counting backwards part of the test. I think the stutter shows itself, not because I am nervous, or anxious but when my brain is working hard trying to get those connections firing again. I have had so many tests like the MMSE and more intense neuro psych testing, there is no reason to be nervous. I get amazed where I have improved now rather than mouthing hanging wide open…wondering what happened to me.

I admit that I have made large strides and that it is somewhat surreal for me still when I have more than one good day in a row. It is now up to two or three good days in a row (with proper resting and time management) and then I have a bad day and go “oh yeah…this shit again” This TBI/ABI recovery is like a clinger….just won’t let go no matter how hard you try to flick it.

This journey amazes and frustrates me every day. I am so grateful to advocate on behalf of myself more. I understand, interact and communicate more easily. The world that I live in is no longer like being continually drunk or on a spinning amusement park ride. I have the attention span to watch most of a movie or tv show. My memory has improved I have also learned strategies to help with organization, planning and memory. I still need to use those techniques on a daily to basis because if I let them slide, I will become anxious, freeze and not get anything done because I can’t figure out priorities or tasks to do on the fly. I become obsessed over ideas,things and projects and forget about all the other things that I need to do in my routine. I will forget the most basic things but will remember the oddest most inconsequential shit. Chris always shakes his head at me like I am a savant…then we laugh. These are just executive functions of the brain. They will also get better with time too! That’s it time…that seems to go painfully slow with my recovery but yet so fast with other parts of my life.

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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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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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Two Years Post Surgery

My first year post surgery was a blur with more valleys than peaks. The revovery more erradic than steady. It was filled with frustration and limitations than major successes. However the first year was not all doom and gloom. The ETV stuck and with only two glitches was free flowing great.
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My physiatrist (Rehabilitation Doctor) said that most recovery happens within the first year of recovery and then can happen slowly up to seven or more years post surgery. Although my first year did have upward progrress, the recovery was painfullly slow and somewhat muddled. However, my second year rocked the house. All that speech therapy paid off. My processing speed picked up allowing me to understand and respond quicker. This in turn with all the speech therapy contained my stutter. All those practiced speech techniques finally come more easily so the beast barely shows its head unless I am sick or very exhausted.very tired.

Most of my ice pick, migraines have been alliviated with the use of medication and Botox.

My right side is still weak, but getting stronger with my swimming. I let go doing my old exercises and have taken up swimming. I enjoy swimming in the swim spa because it is warm and quieter than a pool.

The new prescription Lamotrigine has done wonders for fatigue and clear headedness. I feel smart again and less like trying to walk through mud. Too bad it took so long to figure out. I swear I have been on over twenty different type of prescriptions.

My hearing and smell are still sensitive but not hair trigger sensitive. I was able to spend 1.5 hours in Cross Iron Mills (until it got overwhelming busy & noisy). Once my system gets overloaded, I begin to shut down. My right side goes numb, I get disoorientated and being to fall apart a the seams.

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I went to mental health counselling to work out all the disappointment and anger. i have let in gratitude, play and adventure into my life. I still am an over achiever and miss my old high energy self, but i do not allow the past to get in the way of my future. I am responsible for my own happiness and positive changes in my life. It is my responsiblility to not just exist, but to live my life and make a positive impact in the world around me.

I am now responsible for being very proactive in my own health care. I ask lots of questions, have Chris help me and suggest things to the doctor. I do not just take the first answer. I ask for explanations and push. I am going to be around for a long time and want to be fit and healthy not ailing.

I am feeling stronger mentally and physically this year. As always I am not like the norm and I will most likely see more improvement beyond what the docs had stated. To move ahead
My two year anniversary was like T.S. Eliot’s The Hollow Men Where it came and went “Not with a bang but a whimper”.

I litterally mean whimper and moan of fierce pain, flu like symptoms that had me go to walk in clinic on my two year anniversary. Blood & urine tests done and waiting for results when all went of the rails sending me to emergengy two days after my anniversary I was admitted to Medicine Hat Hospital with Stevens-Johnson Syndrom..

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Committed to being Committed

I had my appointment at the Brain Injury Clinic at Foothills hospital yesterday.  It was quite the experience.  I met an amazing social working and doctor.  I was asked lots of questions and had to do some tests.  I was told to come with a list of the weird things that have been happening to me.

They asked about how I was before I began to feel bad – Healthy & fit – no medications.  How I felt before surgery and how I felt after surgery.  This appointment was long.   I felt comfortable to go over what I have been experiencing:

  • Head hurts if I drive too much (which isn’t anywhere outside of town compared to my 600km days)
  • Head hurts if flickering indoor lights or sunshine
  • Head hurts if I am thinking too hard (I know sounds silly but so true)
  • Head hurts if I am on computer too long or watch certain television shows (I am my own worst enemy with the computer)
  • I have issues with noise
  • I have issues with reading and understanding directions/technical
  • I am a little slow on the uptake with understanding and reading
  • I can be super tired and go to sleep easily  to wake up suddenly for one to four hours every night since surgery
  • I have itchy skin
  • Of course the swiss cheese like memory stuff that is very erratic and scattered
  • and on bad days I still get a tingle numb face patch around my right eye and cheek

Phew…that was a long and sounds like a somewhat whiny sounding list.  I was expected to be judged and told I was crazy because I look physically the same as before (minus the muscles plus the added pudge from lack of activity), but instead was told that was in the normal range to have these symptoms for having what the Doc calls a “major brain surgery”…mmmm…I am confused, I thought it was a relatively minor procedure.  I still think it was considering what I saw on the acute neuro ward.

After the interview stage the Doctor wanted to do a neurological assessment.  I knew a Mocha was coming and I felt confident I would do pretty good.  Okay I did pretty good on the naming the animals, knowing where I was,  naming things that begin with an F…started off slow but dredged up some forestry terms and recovered.  I did great on a couple others then it went downhill quickly with subtracting from 100 and recalling the damn five words I was to remember.  Okay I sucked that up as I am still recovering, but really thought I would do better.

Next came the physical stuff -easy peasy right!  Or so I thought.  I really didn’t have a clue that my balance was wonky until I had to stand with feet together and eyes closed.  Then it was really embarrassing to look at the doctor as she had to explain more than once a simple task I was to do.  I mean this stuff should come easily or so it used to.

So after a very humbling experience and feeling a lot stupid, because I was never like this.  I am faced with the unknown of where my future may be.

The Doc gave Chris and I some options to help me on the fastrack back to where I was.   I agreed to take a little blue pill that when in higher doses is an anti-depressant but in smaller doses the side effect helps with headaches and helps you sleep.  We also committed to have me go to Unit 58 for two weeks of inpatient rehabilitation.  All I know is that some time next week, the unit will call with a check in time for my next new adventure.

The weird thing is I am more anxious about this than the ETV surgery.  I knew that the surgery would have a great outcome, but no one can tell me what the rehab will do.  But I will never say no to  a new challenge. Plus they said to pack my bag like I was going on vacation…yes…that’s what I will keep telling myself…a two week vacation.


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Natural Adaptation

I did this image and descriptions after my follow up appointment when I was still in Calgary. I had Chris help with some of the details that I had forgotten.  It was awesome to see the before and after imagery that showed the CSF flow.  It blows my mind about how my body adapted because if my body didn’t compensate – who knows what!

No wonder I was a perfect candidate for an ETV surgery.

I had a busy weekend last week that took me until Wednesday to recover.  We went to Calgary.  When in Calgary it is super busy because we want to go places that we do not have.  There was a one hour trip in Ikea (all I could stand & kids play time only); swimming in the pool with two waterslides (noisy);  dinner out (that was maxing me out by the time we left there); value village (that was surprisingly packed); lunch the next morning and conversation with relatives; drive home where I passed out; then came home to a wonderful surprise party with a great bunch of friends.  I was completely blown away.  All this action with little down time fatigued me so bad that it was not until Thursday that I had energy.  I had lost track of days and thought thanksgiving hadn’t happened yet.  I had compeltely blanked on other things as well.  My brain didn’t like me doing all this activity.  I made a schedule of my new routine for my OT appointment on tuesday but I had forgot to put in any down time.  So this week has been no more than 30 minutes on the computer at a time; two naps/downtime rests a day.  I need to take breaks to let the brain heal.  I need to remember to do this.  I am finding it very difficult to do this with a 4 & 6 year old boys; a house to somewhat clean (never been a big housekeeper); get boys to their activities and school; endless laundry; grocery shopping; driving; and maybe a hobby like writing or photography.   I am torn because friends want to do activities and I don’t want to say no – I want to be like I was – endless energy and always go-go-go but that is not possible at the moment.   So this week around mid-Wednesday on has been a successful week – okay Saturday was a little crazy and I am feeling it this morning, but I am not doing much until a two hour play date this afternoon.  Heres to taking successful baby steps in letting  stuff slide.

 

 

 

 

 

 


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No it is not an STD

What a whirlwind ride the last nine months have been…similar to being pregnant but not quite. Instead of a baby, I get an answer. I feel triumphant because the symptoms I have been feeling have been acknowledged and thus categorized in the doctors world with a diagnosis of Hydrocephalus or Hydro for short.
All those Doctors in the ER can suck it…no I was not faking and no it was not anxiety and no it was not depression and no it was not fucking migraines. I am not stupid, I saw all the eye rolls facial expressions that I was wasting taxpayers money every time I came in. I know that NaCl is saline so I really commend you on getting to the root of the problem (insert sarcasm) but instead opt out to treat my “imaginary symptoms.”
I always said I was fine even though I wasn’t and then left because I was frustrated with your lack of concern, lack of listening skills & were wasting my time.
My GP told me that I should go to the ER when get weird symptoms & ER docs kept telling me to go to my GP.
The nurses & doctors should remember that there are only thin curtains between the rooms, their common areas and computers. Man did I hear some great stories of their staff parties, other patients and just general BS (lots of BS that was usually about other patients & not very nice).
Enough about the rant about our floundering medical system….so what the hell is hydrocephalus. No it is not the STD syphilis or related to syphilis in any way. It usually found in newborns and elderly. It can also become a part of your life due to a head injury, tumor, or infection. Or there is a small popluation that are diagnosed as young adults (nope) or middle age (yup). We are called SHYMA population and we are rare. We have either acquired Hydro at birth and adapted or genetic factors have allowed for aqueductal stenosis to occur (narrowing then closure of CSF flow). I have always known I was special but hell not this special.
In laymans terms hydro really is just water on the brain. But it really is not water but a clear liquid called cerebrospinal fluid or CSF. CSF acts like oil in an engine. It brings in nutrients for brain healthy & takes out the waste. It acts as a cushion to our brain and spine. The difference between oil in and engine & CSF in your body continues to make 500ml a day within the four ventricles of the brain and it circulates then is re-absorbed into the body. However, if there is a blockage or where re-absorbsion is impeded, your body still continues to make CSF but it has no where to go. The four ventricles begin to compensate for the fluid and begin to expand similar to a balloon being blown up inside another balloon. Because the ventricles are ballooning, the rest of your brain becomes squished and starts acting funky.
Symptoms that I have experienced are pressure in head, headaches, decreased memory, confusion, word finding, numbers, dementia like symptoms, forgetting tasks, can not multi-task, trouble walking, balance, weakness right side, anger, irritability, blurry vision, urinary urgency, insomnia then really tired during day (duh!), depth perception changes, balance, dull, loss of me including interests & generally just feeling like I am drunk.
I know as a parent with two kidlets, who doesn’t want to feel like their drunk at times, but believe me it wears on you really quickly. It takes you ten times longer to process information, understand conversation and read. I have to have the thesaurus up so I can figure out what word I am trying to type. I need someone to look at me when they talk so I can understand what they are saying otherwise I hear only the peanuts teacher. I am trying to write this and the kids are with me at home…thus they are getting into all sorts of stuff I will have to clean up because I can’t do two things at once. I have been tested and show signs of mental decline.
If hydro is left untreated it will further squish your head creating further brain damage and the pressure will increase that will eventually cause death.
So my options are to do nothing or have surgery. And…surgery wins!