Howdy Hydrocephalus

Understanding my unique gyroscope


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The fine line

Hydrocephalus is a weird beast. It is manageable condition that exists but when there is a problem, the symptoms can be quick and life threatening or come on slowly and progressivley and be often over looked. The second one is what happend to me the first time with me. When all this crap started I thought I knew my body, it was a fine machine, it was in shape and it worked wonders, except for my faulty eye sight. I went to the doctor’s over and & over and was convinced it was in my head, that I was just over reacting, that I didn’t know what I was talking about when I brought my symptom book and my possible questions from searches. I was made to think that I was having a midlife crisis and that I was was crazy. I was made to doubt myself and my body. Why would I be in a midlife crisis, other than being extremely frustrated by not being listened to or being taken seriously, made fun of by the medical doctors &U nurses at the hospital. I was in an awesome place in my life! Now that I have am learning a semi new me. I am still learning my body. Still adapting to my meds and my reactions to meds and to situations and I am still not to sure what really is up.

But about four weeks ago, the headsaches got a little worse. I was put on a medicine for that usually treats high blood pressure but can treat migraines as well. I had concerns because my blood pressure usually runs at 110/67. I started seeing red spots and when I walked to the living room I would feel faint and the headaches were still there. I wanted to go back to the doctor but held off because I had an appt. with brain doc. When I spoke with brain doc we switched meds on me – yay – agreed that the meds were lowering my blood pressure too low. She was also concerned that the headaches and my increased right sided tingling were not just brain injury related. She asked me questions about my headaches – if I bent down or strained where the headaches worse – yes. If I was lying down – ??? couldn’t answer that one but I monitored for a week and yes. She said she would set up a scan in my home community.

I went back and found one of my old symptom books. May 2012 – all the symptoms the same – crap! I didn’t clue. I relooked up all the hydrocephalus symptoms again because I forget (brain injury memory crap) and yes I am experiencing potential symptoms again.

I have waited a week for my new meds to kick in and today I am following up with her and my neurosurgeon at the hydrocephalus clinic to say that we do think something is wrong and it was not the meds. That we are willing to travel to get the scan done if it is quicker. Here we go on the Merry go round again. At least I know what to expect.

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Six Months Post Surgery

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Today I am six months post surgery and have had gains, small setbacks, plateaus and gains again. This journey is and continues to be a meaningful ride. I am grateful to experience this as it has shown me the tenacity (thanks Jolene using this word to describe me), strength, perseverance and skills I did not know I had. I always knew that I have been stubborn and game to learn and try new things, but this has really made me grow. There is so much truth to the grieving process for brain injured people and their families. I know that I have experienced denial, anger, bargaining and currently today I think I have accepted and am hopeful for the future. I can understand in the video link that the process is long-term and may be cyclical, but for the last couple of weeks I have experienced gains after a plateau so I am extremely hopeful and have been looking towards the future. I still can not do a task like typing on the computer and understand what my kids is asking me.

In January and February, I have been experimenting with the Doctor with medicine for me. I agreed to take a sleeping knock out pill to allow my brain to heal. Everytime I shut my eyes, it was like my brain was flickering little flashes of light and dark but no dreams but only an odd picture of something will flash. It was like my eyes were opening and closing very fast all night long. The pill makes me zonk out cold. I am taking about ten pills a day for nerve and head pain. Apparently one of the medications was recently studied and had success for neurogenic stuttering. I didn’t know that until I searched the internet because after a few days of taking this medication, my stuttering had decreased immensely. The stuttering still rears its head again when tired and when too much is going on at once. I could only describe what was like a big dark solid locked box in my head & I was basically walking around like a zombie. I am glad that most days the black box in my head feels way smaller and my thinking, thought and communication process seems to be easier – fingers crossed.

In the last two weeks, I now can feel pain. Before I would just feel some form of response to pain including feeling nauseous but not the “ouch” that is killing me type of pain. I knew I had a head ache and always rate it around a 4, even though the pain is there 24 hours a day. I had pulled a muscle in rehab but it didn’t hurt, just felt weird. I remember having the doctor look where it felt weird & she said that my brain was not connecting with what pain felt like. I had know clue what that meant until couple of weeks ago. My head hurt and I could describe where it hurt and how bad it hurt. I connected the nauseous feeling with the migraine/knife/around one side-of head through my right eye-like pain. Now I know we still need to work on my medication to help. Last week I hurt my knee and it hurt like it should have. The pain response was back.

I can handle more of the kids being kids – which is just being 24/7 loud. I have gotten molds made of my ears for ear plugs and can not wait for them to come. I do not like it when the kids scream out, yell or move quickly and suddenly towards me or come running waving their arms in my face. My perception is still out. I am still not the big player with toys, creative/imaginative game player or creative craft person as I was before, but I do try playing Skylanders (for a bit), Lego, and Bey Blades. I did take out the paints a few times with the boys. I have worked through allowing myself to let the television and Iphone games become the babysitter so I can get a break to rest. If I don’t get the rest, I get bad quickly and it takes me a while to recover. We spent a weekend away playing in the snow and it took a full week to mentally & physically recover.

I know that when I walk in the indoor track all the visual stimulation – shadows, sounds, netting, action in the gyms below, other people walking mess with my perception quickly too. I tend to bump into the side or swerve. I must look like a drunk person working out. I can be just as swervy on the treadmill too.

I am accepting that I can only spend a little bit on the computer. I am accepting that all that reading I did after the operation – all those books I don’t remember wasn’t really reading or comprehending. I have put aside the reading for a bit because I can not remember what the pages or books are about. I am accepting that I may take pictures with my iphone more than my larger camera. I am accepting that I still have trouble remembering to take my medication on time, showering, & getting the kids to brush their teeth. I am accepting that I started this post on the three days ago and will finish it today.

I am not accepting that my community of 60,000 people does not have a support group for brain injured people. That there is no group counselling like in other areas of Canada. That there is no support for my kids and partner. It irks me that there is a Brain Injury Relearning Service that does not offer these things. But they do offer a support group for Stroke Survivors. It makes me wonder why a way smaller community such as Powell River, BC has the Powell River Brain Injury Society that offers drop in, fitness classes, art classes and craft classes while the local group here does not. I go to the YMCA and my option of classes is limited due to fatigue. I want to take yoga but wheel chair yoga is not for me and the gentle yoga class is 1.5 hours long. Once again I feel that I am falling through the cracks. I wonder how many other people here feel the same way.