Tietz SAH Foundation






Currently I’m in the process of setting up a foundation specifically for Subarachnoid hemorrhage stroke. I find myself constantly frustrated by the lack of research about why, how and after this type of stroke ravages certain people. 

Research of the causation indicates very few reasons why this type of stroke inflicts a percentage of the population. From what I have gathered from several survivors, they don’t fall into these categories. The Mayfield Brain and Spine Clinic, states that “SAH caused by injury is often seen in the older people who have fallen and hit their head. Among the young, the most common injury leading to SAH is motor vehicle accidents. Five to 10% of strokes are caused by SAH.”  The Cleveland Clinic also points to head injury being the primary factory but cites risk factors as “High blood pressure, Smoking Cigarettes, Excessive alcohol use, Cocaine and/or methamphetamine use, Family history of brain aneurysm, Certain connective tissue disorders, Prior brain aneurysm. John Hopkins, Columbia University and other reputable medical clinics state the same. 

From stories that I have read from other survivors, a large group do not fall into these categories. This is understandable, since most of the neuro research departments admit there is not enough research. Perhaps the gap is due to the percentage of those who do not make it, or do not volunteer. In one journal, it was noted the research was gather by over 6,000 patients. 6,000 is fairly small compared to the world’s population. 

Naturally, us survivors research the why. All medical websites point to the same blanket variable. I question how many SAH survivors reading feel they fall under the factors.

Personally, I don’t fit the listed categories. I look back at possible head injuries and recall two. My first one was in my childhood riding a bike and hitting a light pole. I know it sounds ridiculous, but I was bragging how fast I was racing and didn’t see what was ahead of me.  The second was in my 20's falling down a flight of stairs from wearing platform shoes. I have not dabbled in drugs; however, I have consumed alcohol in my 20's, but stopped drinking because it just wasn’t a needed factor in my life. My great-aunt had SAH stroke, so perhaps it could have been hereditary, but I will never know because information on her condition is lacking, back when she had it, because science was different than what it is today. What I would like to see from this foundation, is advocating for extensive research on SAH survivors. There must be other factors that cause this other than age, drug and alcohol or head injury. I question the following:

Are headaches precursors

Are Migraines precursors

Is high blood-pressure a factor? 

Is stress a factor? 

Do comorbidities play a role?

Weight?

Mental stability?

Prescription medications?

Over-the-counter medications?


These are a few examples that I would like to know if they play a role in someone having SAH stroke. If they are, is there some preventative measures to track the brain vessels.  If so, how often should someone get an angiogram or CT scan? 

Next, we read and hear about stroke warning signs, however they are more driven to ischemic. Most strokes overlap on signs; however, I believe it’s important to educate people on the warning signs of a subarachnoid hemorrhage. The importance is between life and death, along with impairment versus full recovery on how quick you respond. 

Mayfield Brain and Spine states symptoms are:

Sudden onset of a severe headache (often described as “the worst headache of my life”}

Nausea and vomiting

Stiff neck

Sensitivity to light

Blurred or double vision 

Loss of consciousness 

Seizures

These are helpful signs, but there are other terms that can alert someone to act FAST. For me my warning signs were: 

Sudden rubber band snap on the back of my head

Stiff neck

Unable to walk

Crawling to the bathroom and projectile vomiting

Slow speech

I’ve read that most people will simply sleep it off, which is fatal. Rubber band snap is the common feeling most survivors' feel. The phrase, “worst headache of my life” does not resonate as much as rubber band snap. Projectile vomiting is also common resonates more of an alert than vomiting. 

I think what’s lacking with the symptoms is listed is that it could be anything and aren’t as alarming, or perhaps someone having a bad headache might think they are having SAH, when they are having a normal bad headache. Bold key words create an emphasis and accurate description to alert people. 

The other area that I’m fighting for is what life looks like after you leave the hospital. I often see people reach-out in forums asking if anyone else is experiencing an issue. Why are people turning to forums often to double check if they aren’t alone with their experience, symptoms and feelings? The reason I believe, Is the lack of literature about different components of recovery such as: sleep, PTSD, stroke fatigue, headaches, depression, anger, memory issues, crying, how to deal with relationships, feeling worthless, how soon can you drive, when is it a good time to get back to work and the list goes on. 

If an informational guide for SAH survivors after discharge touched on all these issues, and provided resources of what is normal, or when to seek help, I believe survivors' will be better equipped. People wouldn’t feel alone or feel the need to reach out on a forum for advice and get a non-clinical answer that could be detrimental to that person’s health. 

Another component that is the risk of hydrocephalus after SAH stroke. For me, I was told that there was a potential, but I didn’t how to be vigilant. I fell two weeks after discharge and got a CT scan which showed I had hydrocephalus and required a VP shunt, which is a whole other area of how messy life is after having one inserted. The experience is traumatic, but I didn’t have guidance on what is normal. I had to advocate for myself and create a series of questions during an appointment which my neurosurgeon happily answered. 

Another area, which I’m not familiar with is the severe cognitive and mobility issues. What does life look like after discharge? Does this improve? How much work is needed? 

Essentially, I believe that neurologist and researchers are doing the best they can with what they can work with. They don’t have enough variables for advance conclusions. I think that money and effort should be poured into SAH research to fully understand the different complications that can cause this. It might save someone’s life, that perhaps didn’t fit the category that most clinics reference. 

I also believe that patients should be supplied with helpful resources about life after discharge because that’s a fight that’s unknown and uncharted territory. Most of us figure it out as we go, but some have trouble trying to figure it out. If more resources are given to patients, perhaps they will look at the information, to ease their mind. Some don’t have insurance to see a therapist, or if they do, they may only have a certain set of visits approved. I’m curious for my friends across the pond how it works for Universal Healthcare. Do you feel that you are supported in a prompt manner? 

Stroke support groups help others, yet SAH is rare and often not included in the narrative of the support group. I feel that there should be more support groups geared to SAH. I found that the UK is more ahead of this curve than the United States. 

My mission is to increase funding for SAH stroke research and understanding what life will look like after the patient is released. This will be a long process to get this up and running and recognition, but I will never give up. This is a fight for us and others that will sadly fall under this rare stroke. 

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