Happy Life Day

Today is our anniversary.

 

One year ago today, on May 1 2019, my son Weslee entered the hospital for an exploratory brain surgery called SEEG. He had a very rare side effect to a seizure med that caused massive brain bleeding during the surgery, so he had a stroke. He was put in a ventilator, and before he left for a Neuro rehab hospital at the end of May, he had had 8 more surgeries. He came home, finally, after a total of 35 days, still relearning to hold a cup, talk, walk, think, etc. 

It has been a struggle this past year. He still uses a cane to walk, tires easily, has to take a nap almost daily. He has huge gaps in his memory, has developed a facial 'tic', and still has the brain drain (shunt).

I am so thankful every day for Mr. Shane, the nurse on the ICU floor who first noticed Weslee wasn't responding to stimuli as expected.  He noticed it in the nic of time; his surgeon said Weslee would have died that night if Shane hasn't caught it, and if the surgeon hadn't immediately taken him back to the OR for emergency surgery.

So...today, Weslee and I will celebrate his LIFE day.



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I sent a dozen specialty cupcakes to the ICU ward (but Mr. Shane no longer works there..bummer). And even though Weslee is taking a nap right now (2:30 p.m.), I ordered a 4:00 p.m."linner" for us from his fave place: Cheesecake factory.

Seizures and Memory Loss or Slurred Speech

After Weslee had the worst of his tonic clonic seizures, it would often take him hours (postictal - after seizure) before he could speak normally.

A seizure is basically a hiccup in the electrical impulses in the brain. Depending on where in the brain this happens, it could effect areas such as sight, taste, touch, hearing and speech.


Memory Loss and Processing Words

Any type of epileptic seizure could potentially affect your memory, either during or after a seizure. If you have lots of seizures, memory problems might happen more often.

Some people have generalised seizures that affect all of the brain. Others have focal seizures (sometimes called partial seizures) that affect only part of the brain. Some people have both generalised and focal seizures.

If you have focal seizures, the way your seizures can affect your memory will depend on where in the brain your seizures happen.

The brain has two halves called hemispheres. Each half has four parts called lobes: the occipital, parietal, temporal and frontal lobes.

Abnormalities in the temporal or frontal lobes of the brain are the most common reason for memory problems in people with epilepsy. It is referred to as "postictal (after-seizure) confusion" and the length of time to get over it varies from one person to another.

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The left temporal lobe is important for verbal memories such as learning names and remembering facts for exams. If you have seizures that start in this area you may have problems remembering words, and get stuck mid-sentence.

The right temporal lobe is important for visual memories like remembering a person’s face or finding your way around a place.

The frontal lobe is important for prospective memory. Seizures in this area can cause problems remembering to do things in the future.


What Else Effects Memory

Some seizure, or anti-epileptic, medications can cause more problems with memory or speech.  Drowsiness and concentration problems can effect how to learn and store information. This actually could become permanent, even with medication changes.

OTHER THINGS INCLUDE:

• anxiety
• being distracted
• concentration
• illness
• lack of sleep
• mood (happy could help your mind focus better)
• stress

The more you avoid these problems, the better chance you have to learn the information, and then recall it.

Source Link: https://www.epilepsysociety.org.uk/how-epilepsy-can-affect-memory#.Xjx9sNF8DIU

SURGERY:
Sometimes, you just can't avoid things that effect memory and recall, like surgery for seizures. Before Weslee's first two brain surgeries for seizures (2013), the doctors performed a WADA test on him. That plots the brain. They needed to determine, in addition to other things, where he had speech located.

Most people have speech on just one side of the brain; he had it on both. After the surgery, he did have to relearn how to talk, but he picked it up quickly, probably because he was still young. He was able to make new neuro-pathways, reducing the slurred speech effect.

His word-recall took a lot longer to get better. I have to remember to not supply the word he mentally searched for, but give him time to recall it, or find a substitute.

However, after his botched brain surgery in 2019 with all of the brain bleeding, he didn't bounce back as quickly. To begin with, he was now missing a great part of his front temporal lobe. The bleeding and swelling now also caused his brain to be basically swiss cheese.  Even after speech therapy, he still struggles with word recall and slurred speech, especially when he's tired.


For more information about the WADA test, see: https://www.dartmouth-hitchcock.org/epilepsy/wada_test.html


Slurred Speech

Sometimes after a seizure, an epileptic might slur their words. It can often sound like the person is drunk, which can cause problems with law enforcement and other people with authority.

From Epilepsy,com:

Many forms of generalized epilepsy have nonspecific effects on a range of functions, including those involving language. But other forms of epilepsy produce definite patterns of language disturbance. Aphasia is an acquired disorder of language or symbolic processing. There are many specific types of aphasia, defined according to the type of function that is lost. A person with a diagnosis of aphasia is assumed to have achieved normal language functioning before the onset of illness.

Source Link: https://www.epilepsy.com/article/2014/3/types-language-problems-epilepsy



NOTE:

Basically, slurred speech depends on the type(s) of seizures, where in the brain they occur, damage to the brain, recovery, medication, and if there is a lesion or tumor.

I haven't been able to find much information about how to avoid or remedy slurred speech due to seizures, except to get some rest, and talk with your doctor about possibly changing meds.

For those people who have slurred speech because of surgery, work with your speech therapist. That's what they are there for.

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Reminder: I am not a medical professional. Please contact your epilepsy doctor (epileptologist) for more information.

Please feel free to comment about your experience with this topic.  Thank you.

Another Side Effect from Hospitalization

Not for weak stomachs!

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As I've written about, Weslee went into the hospital on May 1 for a SEEG procedure, which went very badly. Brain bleeding, shunt placement, and lots of various therapies needed.

A few weeks ago, after Weslee got a buzz hair-cut, I noticed what I thought at first was dandruff but turned out to be crust from dried brain fluid.  It was leaking from his 2013 surgery scar, NOT from the 2019 scars.  Weird, I know.  I took him back to his neurosurgeon, where they put in a stitch and put him on antibiotics. It healed well. Or so I thought.

Today I took him for another haircut.  Found more crusty stuff.  Back to the neurosurgeon.  This time it was discovered that it was just oozing so instead of a stitch, we got a little pot of antibiotic cream and another around of antibiotic pills.

Unfortunately, he is scheduled for an at-home 72-hour EEG test starting tomorrow so he will only get the cream tonight and tomorrow, then we wait to apply more until after the EEG.

Here's picture I took after the first application of cream.

(The waves have been there since his 2013 surgery. No one knows exactly what they are, but they think it's just edema - fluid that has collected. Kinda cool but makes shaving his head difficult.)

The neurosurgeon thinks these leaks are from pressure building up, but not from his brain bleeds. That maybe the skin from the 2013 scar was weak / thin anyway, and the haircuts are cutting into it (not likely - I watch like a hawk). Or maybe he's scratching it without realizing it. Or maybe the extra fluid is looking for another way out besides the shunt. No clue.  Hoping this won't continue.

SEEG surgery gone wrong

Weslee's May 1 2019 SEEG surgery went really really badly.    (Reminder, it was to help us get data so we can make an informed decision as to the next step: VNS, RNS, surgery, etc.)

The surgeon marked on the head where to drill the holes through the scalp and then the skull so that he can thread probes through the holes, reaching various depths and components of the brain.  Weslee had 7 probes put in his head, then was sent to Recovery.  He had a hard time waking up, but after about an hour in Recovery, he was sent to the ICU (intensive care unit).  If not for an on-the-ball nurse (Shane) noticing that Weslee still wasn't quite waking up, and that the left side of his face was going slack, my son would be dead.

See, it's rare that SEEG probes leave a track of blood/bleeding as they go in.  But still, sometimes there might be ONE probe that will cause bleeding.  EVERY ONE of Weslee's probes bled, causing the brain to swell and preventing Weslee from waking up fully.

Shane immediately called the surgeon who, luckily, was still in the building.  He ordered a CT scan, stat, which showed the massive bleeding.

The surgeon took me aside and said "your son has an abnormal amount of bleeding in his brain.  If I don't operate immediately to release the swelling and pressure, your son WILL go into a coma and die".

I will never be able to forget the look on his face, and the urgent sincerity in his voice, and his terrifying words..

Needless to say, I gave him permission to do the follow up surgery.

Long story short (I know, too late!), he had a stroke from all of the brain bleeding. He had a breathing tube for almost 2 weeks, two brain drains (temporary shunts, one on each side of his brain), and a total of 7 surgeries in 16 days. After getting a permanent shunt on day 16, he was moved to the epilepsy ward on day 17, and less than a week later, moved to an inpatient rehab facility.  He had to work hard so that his left side functioned again. 

We didn't get any information/data from the SEEG.  It would have been corrupted because of the brain bleeding and swelling.  The probes were taken out shortly before he got the permanent shunt.

He goes home tomorrow. The plan is to get evaluated from an out-patient rehab facility, and to continue his physical therapy, occupational therapy, and speech therapy.  He also needs new glasses because his eyes aren't tracking together, and he has double vision. The local YMCA is allowing Weslee several free months to use the pool for his physical therapy.

We never did get a 100% definitive answer as to what caused the bleeding.  The general consensus among the 5-10 doctors he saw every day was that one of his seizure medications caused it. One of those super-rare side effects.

Ask me if I'd do it again, knowing what I now know.

No. I'd rather have him on medications for the rest of his life.  Weslee has a long road to recovery.