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My name is Johanna Tessman, I am a 43 year old resident of Middletown, CT and I suffer with INTRACRANIAL HYPERTENSION, a rare brain disease that affects only 1 in every 100,000 people. There are limited treatment options available and there is no cure, I was diagnosed in 2013 and since then I have had 2 brain surgeries, my latest was just completed on July 19, sadly I know already that I am facing a 3rd major surgery in October. When I woke up from my most recent surgery, I chose a personal mission to raise funds and awareness for this illness.
To that end, I am hosting a fundraiser on Sept. 26, 2015 to benefit the Intracranial Hypertension Research Foundation (www.ihrfoundation.org). IHRF is the only 501(c)3 in the world designated to the study of this disease and the development of treatments and the hope for and eventual cure.
This fair will have games, food, crafts, face painting, education, vendors and a large silent auction.
Intercranial Hypertension Awareness and Fundraising FairFundraiser Event is Sept. 26, at Third Church at 94 Miner St, Middletown
Read Johanna Tessman's story below:
My name is Johanna Tessman, I have Intracranial Hypertension and this is my story.
August 2012 found me having and emergency hysterectomy, within a month of that surgery I
began having severe headaches and mood changes, I noticed a weakened immune system
resulting in infection after infection and I struggled with major fatigue. After a year of this medical
chaos and explaining everything away as hormonal changes, Memorial Day weekend I had
developed another infection, this time in my perotted gland so my primary doctor sent me to the
ER for an MRI. She was very concerned with what had been occurring and now wanted to rule
out blood clots. The MRI showed no clots thank goodness, but the resident came back and told
me they found 'incidental' swelling on my brain. My first thought, ok my second really, was how
is any swelling on the brain incidental, but she was the doctor, right?
After months of tests and visits to a neurologist I was told that I had INTRACRANIAL
HYPERTENSION (IH) and I felt a mixture of fear wondering what was going to happen to me and
relief that I wasn't crazy and I knew now what was wrong with me. I was going to do whatever
the neurologist told me if it would cure me.
Little did I know, this disease was rare, only 1 in 100,000 people have it and there is no cure.
I began this next phase with another problem as well, I had a major case of the googles. I looked
up this disease and discovered that it is a disorder of elevated spinal fluid causing pressure in the
brain which explained my headaches, new balance problems, caused a near constant whooshing
and ringing in my ears, as well as the mood changes.
I began immediately taking medications that I was told would help my body with draining this
elevated or excess fluid, and I began so violently ill I was hospitalized multiple times with what
turned out to be spontaneous medication induced hepatitis. We tried a second one but got the
same reaction, and a third just wasn't working, in fact now I was developing a new, scarier
symptom. I saw a white haze over everything, I had visual hallucinations and even developed a
case of episcleritis in one eye. I was having a hard time with the day to day now, my energy level
was decreasing and I was feeling less like myself and I was watching my family suffer the loss of
the wife and mother the loved right before us.
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Nearly at our wits end, I went with my husband to see the 'best' neurologist there was at the
'best' hospital around. He immediately asked me what I wanted from him, and I didn't hesitate. I
WANT MY LIFE BACK! He said he could give it to me but I had to have brain surgery, a minor one
when you think of the grand scale of brain surgeries he said. Could we call him in a week, to
think about it? Emphatically he said I would go blind if I waited till after the holidays!
We left more anxious than when we arrived, would I never see my babies again, my husband? A
sunset or sunrise? Not an option. We called him from the car to set it up.
November 21 - Brain surgery
November 23 - home
November 26 - ER anaphylactic shock!! I had severe liver toxicity because a post op pain
medication contained tylenol and I had allergies to it, the only medicine to neutralize that toxicity
was Mucomyst and I am 1 of the mere 2% of the population allergic to it!!
The trauma of this near death experience after I was so completely sure I was going to die during
brain surgery was enough to put me over the edge, my family was in shock. We were all left to
wonder when this nightmare would end.
I had 3 repeat visits to the surgeon in as many months post op, because I still had constant head
pain, one plus was my vision seemed better (I found out later that issue was also due to a
medication I was no longer taking). I cancelled a 4th follow up with the surgeon because I was
sick and spent the next 10 months learning how to manage my pain on a daily basis with the
help of a new neurologist and experimenting with new medications. We held onto each other
tightly and prayed nothing new would develop.
When I reached a point that I was having only 4 days of severe pain a week finally I accepted this
as my new normal and decided to change my outcome. I started school to try and make things
better, and I was doing great, until I wasn't. In the first months of school my worst symptoms
returned and I was scared, but I pushed through because I had a goal. Then in March I was
scared for my life again. I was in the hospital for what I thought was a heart attack (pinched
nerves from high pressure a nurse speculated) and worse pain, so bad I was vomiting and my
body ached all the time now, I was having visual blackouts and could no longer keep up the
facade. My primary doctor asked me to go to the ER, I had come to think of her as a guardian
angel of sorts, she cared so deeply for me and both my husband and I trusted her and knew she
was right. Instead of waiting a day, my husband insisted I go right away, I knew he was
concerned so o did.
I was in a state of shock and fear because things seemed eerily familiar, I was back on the roller
coaster of hospital stays, lumbar punctures, increased pressure and possible brain infection. The
surgeon took fluid to confirm that and told me the most bizarre news, my shunt, this particular
model had a malfunction and the dial resets itself.. It was news to me though. What was I
suppose to do with that? I waited and when I found out I had no infection, I gathered my
thoughts, spoke with my husband and primary and we all agreed something needed to change.
With her help we were directed to a new surgeon for a second opinion.
Waiting i his office I was nervous, I was scared and unsure, he came in and took time to explain
things to me, he brought a sense of calm to an otherwise extremely chaotic situation. I needed
that! So under his guidance in July 2015 I went into the hospital with my husband for my second
brain surgery in 2 years with the knowledge now that this surgery may not be a fix for me. I now
understood that the type of shunt I had placed in my brain was not optimal for the condition I had
and if the revision didn't work I could possibly face more surgery.
So now it is almost September and I am grateful to have come out of surgery with no
complication but just not quite right. We talked, I had more cat scans and the result.... A third
surgery which is a combination brain surgery to remove the shunt which brings a host of new
risks and then a spine surgery to install a lumbar shunt.
I can't deny that in the face of this I am scared, but I know how lucky I am to have a remarkable
husband who supports me in every step of this journey, 2 amazing children who love me even
when I am at my worst. I have a family that does anything and everything for me and continues to
love me through all of the ups and downs and now now I have confidence in my surgeon and
above all else I have faith in God that he will carry me through this. I am not always comfortable
with the road I am on, I get scared, I cry, I worry about tomorrow, but I have finally accepted that
this is the plan that was chosen for me, that in all these trials I have endured with this disease I
truly have a sense of purpose.
I am determined to make a difference, I was given this rare disease so I can be someone who
spreads the awareness needed about this to educate others and raise funds that will aid in
finding treatments and help to hopefully one day find a cure. It is important to me, that others
understand what INTRACRANIAL HYPERTENSION is, that they can learn the warning signs and
symptoms of it and that one day the only thing rare in my story will be ME!