I Am Still Me, Though My Brain is not Right

Monday morning early
Visit: Jack (my husband), and Eleanor
Eleanor’s notes:
“Dr. Clark, one of four surgeons in with Dr. Paysinger, offered to order Physical Therapy for Mamma's right arm. Would order Speech Evaluation too if wanted, but doubted it would help. Said there had been lots of manipulation in ''that area'' of brain so might have problem with seizures.
Too soon for friends to see Mama. Needs rest.”

_____
Mon. 8:00 A.M.
Visit: Jack and Eleanor
Eleanor’s notes:
“Auditory comprehension greatly improved. When speaking to Mother, she comprehends well if she is rested and spoken to really slowly. Recognized names of friends who brought food. Wrote ''SLIPPER” with left hand when wanting bedroom shoes. Sitting up. More alert. Robe and socks on. Shook head “no” 2 or 3 times.”

Later Monday morning I was moved into a private room, number 616 West. I had no idea I would still be occupying this same room for three more weeks. When I arrived on the stretcher, I was so very surprised to see that there, on the bedside table, lay my little cross! It was like seeing an old friend. It seemed to be welcoming me. I don't know when somebody might have found it in its hiding place, but there it was now, ready to help me through some very trying times.

Even though my mind had lost all words, I could respond to what I was hearing with my eyes or with facial expressions, with ''handtalk'' or “headshakes”. I was aware of the things going on around me and would see, from under the bulky dressing, my family moving around and about my hospital room but......... what are their names??! I couldn't remember to save my life. I would ponder.-.and try to think, 'out their names just wouldn't come.

I hadn't realized how bad off I was or how bad off I must have appeared to others. To me, seeing myself from within, I was the same person.... the same Ashlyn, the same Mama, same wife, the same mind, personality, values.... unchanged.... it was just that some parts of me weren't working right, right now. But I think those who looked at me from the outside found my condition to be very grave. I was partially paralyzed! Couldn't speak! Couldn't think! Had a mental deficiency! And nobody knew to what degree I would, or could, be able to make a comeback!

Brain Tumor Removal Left Paralysis & Speech Impairment

Sat. 11:00 A.M.
Visit: Jack (my husband)
Notes taken by my daughter, Eleanor

“Mama's condition unchanged. No speech.”

I had no rude awakening about the fact that I couldn't speak or that my mind was incapable of digesting words except ones that had been spoken very, very slowly. The realization of it all seemed so gradual.
Dr. Harvey Atwill and at another time S. Miller, came to visit me in ICU. I truly appreciated their coming, especially with them not knowing in what condition they would find me. I knew them, and recognized them immediately, but I could not think of their names. I smiled. They talked. But the words they were saying had no meaning to me. Both were speaking normally, but their speech was too fast for my swollen brain to be able to process the words fast enough to get their meaning. It, to me, was a lot of sounds. Sounds that I couldn't comprehend. I was moved Sunday from ICU to Intermediate Care. I still was so very, very tired and weak, but my thinking had broadened a little, from just realizing that I had already had the operation to wanting and trying to remember names of people and of things.

Sun. 11-1:30
Visit: Jack (my husband), Sally(daughter who is a nurse), & Eleanor(who is a speech therapist)
From my daughter, Eleanor's, notes:

“Tumor benign! Right arm continues to be paralyzed. Can stick out tongue, lick lips. Can say mmmmm and mamamama. Difficulty with tongue elevation. Mother is still very frustrated with her speech. Sensitivity on right side of lips now (jello). Tremor in right arm. Sally thought she felt some resistance. Worked on matching word-to-picture. Daddy is bringing glasses and gowns.”

My feelings about all this: Eleanor, honey, please let me be.
I don't feel good enough to be trying to say mmmmm and mamamama and matching word-to-pictures. My mind won't think and my brain gets so tired........ so quickly!

Largest Meningioma Tumor Doctor Had Ever Seen

Physician's Report

Fri. 2:30 P.M. Dr. Dial

Notes taken by my daughter, Eleanor

“The meningioma was the biggest one he'd ever seen. Strange growth pattern. Grew up and out, more than in, all in bone of skull.

Almost into brain which made it difficult to excise without causing deficit. Is not changing 15% odds on us, but won't know anything for 4 or 5 days when swelling goes down. Will have pathology report in 72 hours.

All we know is Mother is awake, alert, and recognizes us.”

Fri. 2:30 P.M.

Visit: Sally and Eleanor (2 of my daughters)

Notes taken by Eleanor

“Visited Mama until 3:10. Held her hand. Showed her get-well cards.

Auditory comprehension poor. No effort at speech. Very tired.”

I Couldn't Speak! after My Surgery

Very soon after my surgery, two of my daughters, Eleanor and Julie, visited me.

Eleanor’s notes describing their visit:

"Thurs. 5:30 PM after surgery – (Julie was with me )
Mother awake and very alert. Paralysis of both limbs on right side. IV in hand. Tube with blood drainage from gauze wrap around head running into sack. Urinary catheter running into another sack. Right lip drooping over teeth. Mother very responsive. No speech. Auditory comprehension for slow, simple speech. No articulation in mouth. Seemed aware of paralysis."

In ICU After Brain Tumor Removal

Then at 1:10 P.M., according to Eleanor’s notes, Dr. Paysinger, having finished the operation, came out to the waiting room to give this report:

7:30 A.M. – 1:10 P.M. Thursday surgery- My daughter Eleanor's notes:
"The tumor (the second meningioma) was much larger than anticipated even from CT Scan or arteriogram studies. Grew through the dura, up into skull bone and almost into brain so it was hard to remove. Thinks he got it all.
Could not put plate in. Surgery took longer than expected so couldn’t get plate in. Mama had been through too much. Will put plate in in 6 months-12 months. (Another operation? The surgeons would need to put a plate in as a substitution for most of the skull on the left side of my head. I was not even awake from this operation and I was already needing another one?) Mama is resting. Could see her 4-5 hrs later when she wakes up."

After the surgeons had sewn my scalp flap back in place, a large bulky dressing consisting of a kind of gauze wrap, about an inch thick was applied to my bald head and a drain, left in the epidural space, drained from the fresh incision and my swollen brain into a sack. The dressing came down over my eyebrows and partially covered my ears making it hard for me to hear.

When I awoke from the surgery I was in the Intensive Care Unit. I was still a little drunk from the anesthesia and kept dozing off… waking up… coming… going. I didn’t much care about anything… I was just so sleepy. There was nothing I needed to ask for; my every need was being anticipated so I was hardly aware of not being able to speak. There was, of course, no problem with the use of my tongue; the problem was with the use of my brain. It was injured and swollen and wouldn’t perform. My mind was blank. I had no thoughts… until I took one look at myself and my mind responded to what I saw.

My right arm lay limply on a pillow, as if dead. My right leg was propped up against a second pillow. The right side of my mouth was numb with my upper right lip drooping down over my teeth, and my throat was raw. I realized then that “I had already had the operation.” It had taken only four hours to turn me from an able-bodied, independent person into a completely dependent, helpless, disabled human being. This tumor had really done me in; I looked as if I had had a stroke. It would be a long, hard road ahead… bringing me back from the depths.

Eleanor and Julie, not even knowing whether I would know them or not, came in the ICU to see me as I was trying to regain consciousness. I immediately recognized them… my precious daughters! I managed a smile. (I didn’t want them to know that I couldn’t think of either of their names, or, in fact, think of anything. My mind was blank.)

Brain Surgery – Operative Notes

“Incision was made slowly with the larger vessels being controlled and coagulated as we opened the scalp. Scalp flap… was wrapped in a warm saline soaked pad and fishhooks attached… to maintain this exposure…

(10:30… as my family waited patiently in the waiting room for Dr. Paysinger to finish the operation, many things they had heard the neurosurgeons say kept running through their minds)

“The plate from the previous craniotomy was removed by cutting the wires and lifting the plate out of the defect… the rotary saw was placed on the Midax Rex and remainder of the (skull bone) flap was sawed out and removed… was sent to Pathology…”

(11:30… risk of surgery greater this time due to location of tumor, scarred tissue, lengthy operation including doing away with plate from first tumor)

“After we removed totally the diseased bone the edges were waxed. The dura was lifted with a swivel hook and opened and the intradural meningioma was seen underlying cortical tissue.”

(12 o’clock. Will Mama still know us? …she might not even make it through the operation)

“We kept the cortex covered with cottonoids as we moved along and slowly dissected the tumor off of the cortex… then the tumor was removed… with dural attachments still present. The underlying cortex was very raw… with gentle saline irrigation, the cortex was irrigated…”

(12:30… tumor on “speech area” of brain will affect speech, comprehension, reading… maybe even cause paralysis… should expect 5-15% speech and/or motor problems to be permanent…)

“Dural substitution was then used to close the large dural defect that had been left. This was sutured into place covering the underlying cortex. We felt there was going to be a tremendous amount of swelling because of the large tumor that was removed, and adherence to the brain. It was elevated not to try and carry out a cranioplasty (put a plate in)—at this time for that reason. A drain was left in the epidural space and the scalp flap returned to its normal position. A large bulky dressing was loosely applied and the patient sent to RR.”

Physicians’ Reports Preceding Brain Surgery

Physicians’ Reports – Sally Spends The Night

Neither did I know Eleanor was taking notes on what the physicians were reporting to her in private about my condition.

Tuesday – Dr. Dial

Risk of surgery – Greater this time than for the first brain tumor due to location and scarred tissue. Risk is damage to right side, anywhere from paralysis to poor muscle tone.

Lengthy surgery – Getting to it is easy. Excising it is hard. Surgery will be a lot longer. The longer it is the more chance of problems. Tumor is in the skull. Will require plate on whole left hemisphere. More concerned than at first. Probably after surgery will have speech and motor problems. He expects this.

Seizures – Frontal-temporal meningioma might cause seizures.

Tuesday afternoon – Dr. Paysinger

Expects speech problem and weakness or paralysis after surgery. Said Mama might not make it through the surgery. About 15% chance of speech and/or motor problem will be permanent. Probably plate on most of left hemisphere. He will operate Thursday morning.

It was thought I would be in the hospital for about a week, like with the first brain tumor, so plans were being made for Julie to come with her ten months old baby boy, Lane, when I got home from the hospital and stay with me while I was getting my strength back. I expected nothing but that my recovery would be like that of my first tumor… quick and complete.

I had asked my daughter, Sally, who is a registered nurse, to please come st ay with me the night before I was to have my surgery. I thought I might need her in the nurse capacity but I knew for sure I would need her for support. She and I slept very well that night until the hall nurse came in and woke us up about 5 AM Thursday morning to “get up and start getting into the surgical gown in order to be ready for surgery”. I wanted so badly to have my little cross, that I had been carrying in my wallet for years, to be somewhere on my person during the surgery… but where could we hide it? I had been stripped of all jewelry and was jut about naked in that scrimpy little, split-down-the-back, short, no-modesty-at-all, surgical gown. Sally and I looked at me. Then we looked at each other. And then she made a real good suggestion… so, when the hall nurse came back about 6 o’clock to see if we were ready, my little cross was hidden, securely tucked long ways under my hospital bracelet and hardly even showed.

I, having already been sedated, was no sooner rolled out of the room on a stretcher than I was fast asleep. I didn’t know anything after that, not even when somebody shaved my head for the operation.