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.



3 thoughts on “Fall Follow-ups

  1. I just came across this while I was doing some research trying to find anything I could talk to my doctors about. I was diagnosed with Hydrocephalus last September when I came to the ER because of a constant migraine that had been there for two weeks, and had an ETV shortly after. My ventricles are three times the size that they should be and haven’t seemed to change at all. My neurosurgeon and neurologist both said that the surgery would eliminate the constant migraine within a couple weeks, it didn’t. In fact I have much worse pain than I had before the surgery. I have had constant MRIs and flow studies to see if the ETV is still effective, and every time they show up perfectly clear (other than the huge ventricles). Neither or my doctors know why I’m still in pain. I’ve been told no more acetaminophen or ibuprofen because of how often I used to take it. I’m on Fioricet and it seemed to help at first, but now it doesn’t. I’m also 16 and have had to be out of school for three and a half months. I was hoping that you could tell me if there is anything that me or my doctors could be missing that you have come across. I’m one of very few cases my neurosurgeon has and he hasn’t seem many cases like mine. I’ve had hydrocephalus since birth or soon after and it was never found, causing gradual pressure increase over time. He calls me “his mystery” I’m in desperate need of help. I don’t know much about Hydrocephalus and ETVs, but I do know that I shouldn’t be in this much pain. Any way you can help?

    • Neurosurgeons are experts for the surgery aspect. If your flow is great from surgery & no inter cranial pressure issues then you should see a neurologist or physiatrist (rehabilitation doctor) to help with the head pain. Because each brain and person is different, it will take a lot of trial and error to find what works for you. I find both traditional medicine and alternative treatments (essential oils) work for me. I will be starting to look at biofeedback as well. Try deep breathing (mindfulness meditative) type. Have you started a headache journal. I keep one to rate my pain & to see what may have triggered an increase in pain. Headaches may never go away as it is a part of hydro but decreasing and adaptive measures are important. Don’t give up!!!!!!! I know it is frustrating and a pain in the head.

  2. Great information. Thank you for sharing this to us. Thank you so much.

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