Val's updates from home Last updated Sunday, April 28 2002 - 8:45 PM
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| April 14 Sun | 6pm - Joe here. Val is home and
resting. See Updates on Val
for the story up 'til now. She asks that phone calls be kept to a minimum for several days yet, since she tires easily and naps a lot. She asks also that e-mails continue to be sent to the link below instead of to to her individual address, so that she is not faced with hundreds of messages when she is able to read a computer screen again. Visitors are welcome; please limit your time to 20 minutes or so to not over-tire her. She will gladly accept some of the offers that were made for massage. She says she is very happy to be home, and thanks all of you for your love and prayers. 10pm - Val just blacked out again on our way out of the bathroom. I was holding her and let her down gently. I had no problem with it in the moment, but the implications are not good. We have no way of knowing what the Dilantin level is in her blood - if it is within theraputic range and this happened in spite of it, or if the level is low and a higher level would have prevented it. She had not yet taken tonight's pills since they are to be taken at bedtime. My 84 year old mother is probably not strong enough to be able to protect Val from going down hard if this happens while I'm at work. I may need to stay home from work until her mother arrives Tuesday afternoon. There are a lot of unknowns at this point. |
| April 15 Mon | Things are a pretty hectic at home, so Joe's not able to do the update
today so here's Ian again. Here's a photo of Val taking it
easy today. There's probably also some brain irritation of the Xth cranial nerve (the Vagus nerve), which is related to regulating digestion and *slowing* of the heart rate. Its effects are exactly the opposite of the "fight or flight response". He said it only takes one heartbeat of too low blood pressure to the brain, and out go the lights. I know from personal experience that when the Vagus nerve is upset you feel queasy (motion sickness for example). With Val's vision and balance problems the reverse is likely true, in that she gets dizzy with the mixed visual and balance signals and that upsets her Vagus nerve and it causes these other effects. He also said that neuro-surgeons frequently perscribe Dilantin for a few weeks after brain surgery simply as a preventative measure, and short term use is not a cause for concern. Then they talked about what she experiences before and after passing out. Siezure victims usually lose memory of time *before* an attack, 5, 10, 15 minutes or so; are usually incontinent, may have muscle spasms throughout, and wake up slowly and groggily, and are weak and disoriented for some time after. Val, on the other hand, is perfectly conscious and remembers it up to the instant she blacks out, is limp while down, is not incontinent, and wakes up absolutely lucid in just a few seconds. She remembers her vision narrowing and browning out, typical of people who faint, as are all the latter conditions above. The lights go out, she wakes up a few seconds later and is completely back. (I have passed out a couple times and, nearly passed out several times myself, from natural low blood pressure, low blood sugar and standing up so I can relate. -- Ian) Joe also found some more interesting resources today. |
| April 16 Tue | Joe here. Well, so far updates from home seem to be daily. Val is fully experiencing what the doctors talked about before surgery, the "tired brain" syndrome, finding any TV at all to be far too much stimulus (She never liked it much anyway!), and even music tolerable only for short periods. So she is sleeping a lot. She is still doing sessions of light physical therapy - mostly balance oriented, and doing eye exercises and alternating the eye patch. Val has regained half a pound of the eight pounds she lost (not that she had any to lose) and now weighs all of 97 pounds. No, I'm not going to put up that photo on the website. ;-) The big news is that her mom is here, giving her some company during the day and taking care of much of the assisance Val needs. She had a chance to open mail today, and is very moved and most grateful for the support, both emotional and financial. Thank you so much. |
| April 17 Wed | Val is getting around more by herself today, and spent more time in a reclining chair and less laying on the couch. She was able to join us at the dinner table. After dinner I gave her a bath and combed more of the glue from the electrodes from her hair. Her vision hasn't improved, still being blurry and fractured, with frequent brownouts (but no more blackouts) and continual double vision. Her mom is driving her to an appointment with an eye doctor in Missoula tomorrow (Thu). Here is a photo of her doing a little upper body physical therapy tonight with one-pound soup cans. Her spirits are high and she is doing well. Visitors are welcome. |
| April 18 Thu | Val finally got a professional massage this morning [photo],
much needed since spending 15 hous in a head vise during surgery and a week in bed after
that. At her appointment with the eye doctor, the technician gave her a series of tests of basic optometric stuff, and the doctor did more technical tests to check eye alignment, muscle responses, and possible corrective measures. One test was to turn a laser-like line in a pair of special goggles to appear vertical in each eye; the line appeared about 30º off from one eye to the other. Another was following a light (on the end of the Doctor's finger) around her visual field. She had much more trouble tracking it to the left, and in the lower half of her field. She also could not follow it to her nose; it would simply disappear from her sight. The doctor said that everything appears to be OK mechanically, but the muscles are weak on one side, probably because of the impact of the tumor and surgery on cranial nerves IV and VI. He said she has a "flaming" long-standing case of of papilledema, swelling of the optic nerves due to excess CSF pressure caused by the tumor. Papilledema is also a common after-effect of brain surgery. For a short and clear explanation papilledema, see this page. If you want to see how pressure on the eyeball can produce strange visual effects, just press your fists into your eyes and watch the patterns that form in the dark. ;-) He recommended (and prescibed) a pair of prism-ground glasses for her. These would be temporary, and under-correct the misalignment, still requiring the brain to strive to correct the double vision, but making it easier to do (like pointing the way), and giving Val more visual functionality in the meantime. She would wear them about half the time she is awake. See this page for a brief overview of strabismus (eye mis-alignment) and prism glasses. After an hour and a half of concentration, she was mentally exhausted, and slept in the car on the way home, as she had on the trip there. Val is feeling noticably better physically, while at the same time being easily mentally tired. She will have a follow-up eye appointment in two weeks to be sure the swelling is diminishing. |
| April 20 Sat | Took a break from updating last night and managed to pick up a book I had
started three weeks ago. Friday morning Val woke up seeing a single image in the upper half of her visual field. It's still very fuzzy, but a great improvement over the seeking/wandering independent double images she's had up until now. Our decision on the prism glasses is to wait a bit and see how fast she improves. There's not much point in getting a prescription that is behind where she is. Friday Val managed a slow walk around the property on her mother's (Beatrice) arm. Bea has been reading her the cards and printed e-mails. It was the first decent day we've had in a while, and Val sat out in the sun during the evening. [photo] Saturday Val had me dig out her watercolor supplies and buy a pad of paper. It's something she hasn't done for many years. With the strangeness in the lower part of her vision, the results may be very interesting. She took another escorted walk around the property, and later showered and washed her hair by herself. While in itself it may not sound like much, it is certainly a milestone on the path to full recovery. Now that we're feeding her regularly with solid food, her balance is better, and she is on her guard for the warning signs like fading vision, we think she is past her fainting spells. One thing we have noticed as a result of the surgery or hospitalization, is that she has completely lost all her muscle tone. Her muscles, while not particularly weak, ure flaccid and just hang from her bones, and she has lost her rather nice derrière. Muscle tone comes from the constant flow of nerve stimuli to the muscles. we didn't expect such a radical change in body shape after just a few days in the hospital. This will be one topic of discussion when we see both surgeons on Wednesday. We watched a video tonight, and at its end she was very tired with something of a headache. It's the most sustained stimulation she has had since surgery. All in all, Val is doing quite well. |
| April 22 Mon | Val spent all morning on the phone starting to catch up with things that
have been neglected the last few weeks, getting things set up for our trip to Missoula on
Wednesday, and talking with friends now that she is feeling better and can spend more time
on the phone. Her active days are still pretty short, since she needs to sleep every
couple of hours, so she hasn't started painting yet. This afternoon she had an hour and a half session, a gift from her friends at Star Haven Conference Center, with Dael Walker, a well known Crystal healer. During the session she felt something was different but couldn't place it. Then she realized that her vision was clear. You know those patterns you see when you press your fists into your eyes? Val has been seeing those and experiencing other effects for a year or so, with her eyes both open and closed. During Dael's session they were gone. She said she didn't know what he was doing during the session or when, since she kept her eyes closed, but she felt recurring waves of goose bumps traversing her body from feet to head and head to feet, and from side to side. The room was quite warm and she was not chilled. A more lasting effect of Dael's session has been that the stiffness in her neck is gone, as is the pain along the incision and in the underlying muscle that has kept her from turning her head. When I got home from work, and while talking to her at the dinner table, I mentioned that it seemed she was relating to the world better. She was sitting more erect and holding her head up, rather than being hunched over and turning her shoulders and body to keep from bending or twisting her neck. She said "Look! It doesn't hurt!" as she happily turned her head from side to side. Her vision continues to improve very quickly, with double vision occurring now only at the edges of her visual field, when the muscles are at full extension or contraction. Her vision is still fuzzy, however, and she cannot read anything yet. She no longer feels the need to wear the eyepatch at all. Radiology at St Patrick Hospital says they will have copies for us on Wednesday of Val's "after" MRI and CT images, and I'll put them up here as soon as I can. |
| April 24 Wed | Today we managed to see one doctor, Peter Von Doersten, who was very
pleased and impressed with Val's rapid progress. She reminded him of their bet about her
length of stay, and said that being discharged three and a half days after leaving the ICU
was closer to her her boast of three days, than his original estimate of five or six days.
He removed the remains of the stitches from the surgery incision and the Ventriculostomy.
Most of the stitches had dissolved internally. She and the nurse and I got to watch as
well, since he was using a stereo microscope with a video camera that gave the same view
on two monitors. Dr Chandler was in surgery that was running overtime, and all his afternoon office patients were cancelled. We did go up to the 5th floor of the hospital where Val delivered a loaf of her home-grown home-made zucchini bread to the nurses that were on duty during her stay, and where she danced in the hall showing off to the nurses how well she was recovering. Radiology had, not copies, but all the originals of all the MRIs and CT scans ready for us to pick up. There are dozens of pages and hundreds of images that I spent hours going through this evening. Hopefully I'll get a few up tomorrow; I want to put corresponding 'before' and 'after' images side by side. For now , here is one picture of Val showing our mothers some of the images in the last of the evening sun. Her mother, Bea, is on the left, my mother, Rita, has her back to the camera. |
| April 25 Thu | This evening I put together a page of post-surgery MRI and CT images. They are arranged side-by-side with the correlating pre-surgery images for easy comparison. |
| April28 Sun | Friday Val woke at 2AM to a nightmare and had difficulty
going back to sleep. In the morning she said her head felt like it was in a fishbowl and
she felt a lot of pressure. Her balance and vision were both worse. She attributed it to
lack of sleep and expected it to get better after her naps. It didn't. So when I
came home from work she was waiting for a return call from the doctor. When Dr Von
Doersten called back he politely but very firmly insisted that she go immediately
to Missoula for a CT scan because
of the risk of hydrocephalus. So off we
went. Having called originally just to get some advice or recommendations, Val hadn't fully considered what the ramifications of a call to a neurosurgeon two weeks after brain surgery would mean, so thinking now that she would just go to Radiology, she was somewhat disturbed when told she was supposed to check in at the emergency room. She was even more upset when the nurses but her in a hospital gown an a gurney in the Emergency ward, and they asked her when she had last eaten in case she had to go to surgery for another ventriculostomy. She was so upset that her blood pressure, usually 90 over 60, was 140 over 90. They whisked her off for the CT and brought her back about 10 minutes later. A little while later Dr Chandler came in (he happened to be on call for the weekend) and after giving her the usual "follow my finger" type tests said that the CT images looked fine, that there was no blockage of the CSF drainage channels. He said that if she had a hydrocephalus problem, she would get very sick fairly rapidly - within hours or days. He offered no explanation for why she was feeling the way she was. We were relieved and thankful when he said we could head back home. We did take the opportunity to ask what he would have talked about at the appointment he was unable to keep on Wednesday. He said that he had sent Val's films to a colleague at the Mayo Clinic in Rochester, Minnesota. She is a radiology expert and he wants her advice on Val's radiation therapy, whether it should be a single session, or "fractionated" stereotactic radiation which would be smaller doses spread over seven days or so. (The last time it came up it was five days.) The fractionated sessions may be called for since the tumor remains in such intimate contact with the brainstem. A single session could be done in-house at St Patrick hospital while the closest locations for fractionated sessions would be Salt Lake City, Seattle, or the Mayo Clinic. He reiterated that it would not occur until all the brain swelling from surgery had diminished completely, and Val would be able to better handle the traval and the treatment - five or six months perhaps. Saturday Val felt a little better than Friday. She had taken a melatonin and slept much better. It was a rainy day and she didn't do much. We all watched a video in the evening, and Val had a bowl of popcorn (a favorite movie snack), her first in a month. It seems clear that her "hearing" in the left ear while in the hospital was a phantom, perhaps due to the drugs she being administered. Sunday - She is feeling somewhat better yet, although is still not back to her Thursday level. Her fractured visual field and brownouts have diminished from Friday when they were raging. Her double vision (diplopea) at the extremes of her visual range is diminishing even more, although her eyes still bounce at extreme left and right extension. Val uses her visual problems as gauge of her CSF pressure and level of the optic nerve swelling (papilledema), which, while still present, seems to be slowly diminishing. We took a short walk around the property looking at the budding trees and the grass that needs its first mowing. I am still reading to her the e-mail messages and jokes that all of you send, and her mother is reading her the messages on get-well cards. She thanks you all for your expressions of support and enjoys the humor (as do I). Visitors and phone calls are welcome; just be aware that Val needs to sleep every couple of hours. |
| Note | This site is getting fairly complex for something that I thought would
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broken or incorrect links. Thanks. Once again, this page is more than long enough, and is suffering from the "paper towel syndrome", so I'll be starting another - Updates for May |
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