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| Mar 29 Fri | Val went for a hearing test with an Audiologist, and later saw Dr Steve Smith, a neurological chiropractor. Both recommend an MRI for a possible Acoustic Neuroma. |
| Apr 1 Mon | Unable to schedule an appointment with the ear specialist for several weeks, Val called Dr Steve, who had offered to help. He called back in a couple hours with an MRI appointment on Tuesday and one with the ear specialist on Wednesday. |
| Apr 2 Tue | At Missoula Open MRI, Val was surprised at the size of the tumor shown in the MRI images, wondering how that much extra mass can fit in that space. |
| Apr 3 Wed | After seeing Neurotologist Peter Von Doersten, (a wonderfully caring and attentive person!) Val is scheduled for surgery Tuesday the 9th. She brought home the dozen or so large MRI negatives (each with 8-12 images about half life size) to show me and my mother, Rita. We begin notifying family and friends, and I made arrangements at work for flexible time off. |
| Apr 4 Thu | Many of Val's friends are doing healing and meditation, and Val and others are attempting to get in touch with the energy of the tumor. One wrote and said that the tumor feeds on and grows with fear and rejection, and requires love and appreciation to shrink. I couldn't help but think what a profound truth this is for ugly situations at whatever level we care to look at. What would it take to stop and transform the insane situation in the Middle East for instance? |
| Apr 5 Fri | Friday we drove to Missoula (Val is no longer driving) to meet the other
neurosurgeon on the team, Dr Nick Chandler, and we learned a lot. The approach will be the retrosigmoid, the largest opening that goes through the most neck muscles; however this allows the best view of the compressed and deflected brainstem. The removed bone disk will be held in with permanent titanium clips when it is replaced. This approach leaves the middle and inner ear intact, and she will be able to equalize her eardrum through the Eustachian tube. (That ability would be destroyed in the TL approach.) But since the brain cavity will be extended into the inner ear as the IAC is excavated to remove that part of the tumor, her scuba diving days are over. He will be monitoring Valerie's nerve responses during surgery by continually stimulating the bottoms of her feet with electrical impulses, and detecting the responses in her facial muscles and elsewhere. He will locate both ends of the facial nerve and keep track of its location at all times to attempt to preserve its integrity. We learned that the ventricles (fluid-filled spaces in our brains) produce about a quart of Cerebro-spinal fluid (CSF) per day, which circulates around and within the brain and spinal cord, and is reabsorbed. There will be a cranial shunt (hole in the top of her head) to relieve the pressure and help keep the operating field clear.The shunt will be in place for three days or so after the operation to keep CSF pressure down. Val is not yet to the hydrocephalic stage (water on the brain) where pressure from the tumor completely closes CSF pathways through the brain, starving some areas while it builds up volume and pressure elsewhere, squeezing the brain. We learned just how it is that something the size of the tumor can be added to an already-full space: it displaces fluid. In so doing it raises the pressure of the CSF and reduces overall brain health. Val learned, to her dismay, that during the long operation her head will be held absolutely immobile in a steel clamp with screws that go into her skull. This is of course necessary since the surgeons will be doing extremely delicate micro-dissection under a powerful microscope. She can bring in her own music, which I found a little odd, since she will have one ear plugged and the other one is being made deaf. We also asked about something that Val has noticed that is not on any list of symptoms - she has mostly lost her appetite. He was very quick with the answer: "Stress" We told Dr Chandler about our website, and the analogy we used of scooping out a melon. He laughed and said that was about right, and that he would have to show us his $80,000 set of extremely small melon scoops. And speaking of money, another thing we learned is that
what we will owe in about ten days, barring any complications, to two neuro-surgeons, the
anesthesiologist, a radiologist, a pathologist, various labs, and the hospital - is at
least $100,000. |
| Apr 6 Sat | Today Val managed to slow down some and sat in the sun for a while,
letting the answering machine take all but 10 or 15 calls. She received a Reiki treatment
from a close friend who drove three hours round trip for the session. We're both aware that there are large spiritual challenges ("opportunities" I think they're called) being presented here. For Val it's an opportunity to let go of identification with the body, and the thoughts and emotions that arise from that body; to remember that we are spirit that has created a body to use as a vehicle - that who we are is not the body and its pain and failings. It is also an opportunity to release judgmental attitudes and emotions that we learned so well from our parents and society - those negative and worrisome thoughts we keep hidden behind a sunny facade and that grow unnoticed in the dark. Our bodies are, after all, the places where thoughts are made physical. Don't think so? Just move your arm -- the energy of a thought made manifest. |
| Apr 7 Sun | Today is the day for healing work, meditation, and prayer circles. It is
an indication of how many people's lives Valerie has touched and how well loved she is to
look at what is going on today. There are prayer circles and masses being said for her in Italy, Connecticut, Washington DC, North Carolina, and Montana. There is a Lakota Sioux elder in Indiana doing a pipe ceremony for her with Sitting Bull's sacred pipe. There are psychics and faith healing circles in Arizona and Montana.Many of the prayer circles will continue on through the week. Val is feeling somewhat better today, her dysequilibrium and ataxia seem to be less, and she could actually understand some speech in her left ear last night, but her vision is worse with everything being out of focus and fuzzy around the edges. The reduced volume of phone calls has made it possible for Valerie to take a little time for herself and meditate. Thanks to all for using this site as your update on Val. She truly appreciates your caring and welcomes your love and prayers. It just was less than optimal Thursday when she spent almost 15 hours on the phone. (She has a very large Italian Catholic family.) |
| Apr 8 Mon | After Val participates in a healing circle in the morning, and I spend
half a day at work, we will head for Missoula. Val is scheduled for blood work and a CT
scan* at 3PM. We'll have dinner with some friends and spend the night there. We're due at
St Patrick Hospital at 6:30 AM Tuesday. * (Computerized Tomography - an x-ray that produces cross sectional images through the body like an MRI. CTs are better at showing bone structure than MRIs, which excel at displaying soft tissue.) |
| Surgery Day | |
| Apr 9 Tue | Val and I were at the hospital at 6AM, and by 7:00 she had signed the last
of the paperwork for today, and been wired for neural monitoring. Here's a photo of her in in the surgery admitting/prep area with Jan (with
the basket of stuff) the neural monitoring tech who will be with Val all day, and Jan
(also) the prep nurse. The monitoring contacts were glued to her scalp (no shaving) with a
vacuum pump and something like super-glue. Although the stress is showing a little
here, Val said that she could feel all the love and prayers surrounding her, and was so
grateful to all her friends and family. Then she was moved up a floor to pre-op holding, where she got pneumatic leg cuffs -"sequential compression sleeves"- to help circulate lymph and blood and prevent blood clots. An IV was started and the nurse started administering drugs-- antibiotics, anti-inflamatories, and a relaxant after the doctors came through for a brief word. We met the anesthesiologist, Dr Alastair McDonald. Here's a photo of her in pre-op, before the relaxant, where she was was telling jokes and being rather chatty to cover her extreme nervousness. At 7:35 she was wheeled off to the operating room, and I left the hospital to come home and get a nap. The operating room room nurse called at 9:00 to say that Val was fully out, fully wired for vitals monitoring, fully plumbed with central-line IV, catheter, and another line into an artery for instantaneous readout of blood pressure, and was doing fine. The doctors are putting in the CSF shunt. Next phone call will come in a few hours after her skull has been opened and neuro-surgery is about to begin. |
| 12:30 am - The nurse in the operating room called and said that Dr Chandler was beginning surgery in the cranium. The skin incision for the main surgery was around 10:30 am.Val's signs are stable and she is doing well. | |
| 7:45 pm - Talked to the nurse in the operating room. She conveyed that Val is stable and doing well and that the surgeons are not expected to finish before 10pm MST. She may spend the night on the ventilator after the operation as it's easier on the body. Stay tuned. | |
| 9:30 pm - Headed off to the hospital. Word is Val might be out by 10:30 pm, then another hour in post-op recovery. | |
| Apr 10 Wed | Ian here. Just heard from Joe. Val was out of surgery about
10:30pm last night, and then spent another hour and a half or so in post-op
recovery. Joe was able to see her from 12:30 to 2 am. He spent the night at some
friends' house and went back to the hospital this morning. The doctors looked fresh after the surgery last night (they do seem to enjoy their jobs) and are very happy with her recovery, but are also disappointed because they had to leave behind up to 20% of the tumor. If you look back at the MRI images, the dark area in the center which they speculated was a hemorrhage causing the tumor to expand, turned out to be a major artery feeding the brain. That artery ran right through the center of the tumor. They also found that the tumor was very adhesive (small fibrous tissue that bonds it to the various things it touched) and was sticking to the brain stem, auditory nerve, facial nerve and all around that artery. Their attempts to remove it from the artery risked tearing it. They had some bleeding during the surgery and basically said that they couldn't remove any more of the tumor tissue without risking Val's life by causing a major stroke. They both said they are quite aggressive surgeons, and this is the first time they've ever had to leave this much of an AN tumor. Basically they said there's only one chance to operate on an AN and they never operate
twice. If they cannot remove all of a tumor the first time, then it cannot be
removed later either. The plan going forward is to monitor it with regular MRIs
(every couple of years), to see if it's growing, and then use stereotactic radiation
therapy*, to manage its size if/when it grows. Radiation treatment may be 10 years or so
down the road. From there it's a race to see if it grows faster than Val
ages. Back to the hearing -- Because they left so much of the tumor it's not clear whether they actually removed the auditory nerve. Joe is finding out now. Val thinks she can hear over the tinnitis white noise in her left hear. The tumor and auditory nerve tend to intermingle quite a bit, so even if they say they cut the nerve out, but had to leave 20% of the tumor, it's possible that it's still carrying signals. We'll see. |
| 2:00 pm Wednesday - Joe here. Ian did such a good job of reporting our conversation that there is little to I have to add about Val's condition at this time. Her vision is still pretty wacky, and she often says the room looks tilted or she feels like she is upside down, but the doctors say that is temporary. They did make a point yesterday before the operation to talk about "tired brain" syndrome, saying that for several months Val will need to rest a lot because her brain will just kind of shut down if she pushes it. This will be another lesson for her I'm sure, because she has a lot of will and determination, and would often push her body beyond when it was tired or hurting. Here are some photos taken of her today -- she wanted me to be sure to get all the equipment at her bedside in the Intensive Care unit, and another of her smiling and saying hello to everyone. Rita and I are headed back to Missoula shortly, and will see if she is improving enough to be discharged from the IC unit to a regular room. |
|
| 8:30 pm Wednesday - Ian again Joe's headed back home. He talked to the surgeon and found that yes the auditory nerve is still in place, but thinks it shouldn't be functional. Val thinks it may be working, so we'll see. The surgeon does say Val is above average and ahead of schedule with her recovery which is not surprising for those of us who know Val. She's been cleared to move out of the ICU. Today they reduced the amount of neural monitors from 6 down to 4 and once she moves out of the ICU she'll be disconnected from all the monitoring equipment and moved up to the 5th floor. Friday is "de-tube" day which means the central line comes out and presumably other IVs. She still has leg cuffs helping move blood around in her legs and those won't come off until she's walking again. For those of you in the local area,
her moving out of the ICU means she can have visitors starting
tomorrow. Hours are 11am to 9pm daily. She's talking more and this afternoon she sat by the window for 2 hours and took a few steps back to the bed with assistance. She essentially has zero balance and is experiencing vertigo and visual problems due to the loss of half of her vestibular (balance) signals. The doctor says that the visual and vestibular signals are heavily coordinated in the brainstem and since Val has lost half of her vestibular signals her body is saying "Tilt!". At times she sees the room at 90 degrees and has been experiencing some double vision. (Click here for some information on how the balance system works and malfunctions) She started working with a physical therapist late this morning, and will really get into it tomorrow. Our brains are phenomenal at adapting to changes like this so her recovery prognosis is very good. She did eat some solid food. They brought her some steamed veggies from the hospital kitchen and she declared them quite blah, so Joe ran over to the natural foods market and picked up some fresh fruit and a Green Drink, which she enjoyed. An interesting tidbit of info. Val lost a teaspoon or two of fat from her left hip during the surgery which was used to fill and pad the gap left by the removal of the tumor, so there isn't an immediate loss of support for the surrounding brain tissue. Eventually the brain and brainstem should push back into that space and the fat will be re-absorbed back into the body.
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| April 11 Thurs | 11:30 pm (Ian here, Joe's spending the night in Missoula) First off. Joe wanted me to mention it up front as a few people called asking. Val is in room 513 at St. Patrick Hospital, 500 W Broadway. Val was discharged from the ICU Wednesday night at 9:30 pm which means she spent less than 24 hours there. The doctors are frankly quite amazed and keep using phrases like "remarkable progress", "excellent results", and one of them mumbled something about "amazing how much a positive attitude makes". They took out the central line and catheter today so there's only one tube left, the CFS shunt which regulates the pressure of fluid in the brain stem. That'll come out Friday at which point she may experience some headaches as fluid pressures in the brain rise to normal levels. Today Val had 2 visitors and took 3 phone calls. She walked around a bit more, still with assistance, but the physical therapist says she should be able to walk on her own by Saturday, at her current rate of progress. They took off the leg cuffs that circulate blood around today while she was up and about, but she'll have em again tonight while she rests. She's off morphine completely (3 hits in the ICU and 2 last night was her total intake), and is now using only prescription painkillers. She did have a sedative today when they ran her down to get a second set of MRI scans (mainly for the doctor's curiosity, but Joe is going to try to track down the images so he can get some photos.) In terms of neural recovery, her facial sensations are at about 80%. Her smile is a little asymmetrical (higher on the affected left side), and she's got control of her lip today so no more dribble. She's still sometimes seeing double and the doctor says it could "recover in 2 days, 2 weeks, 2 months, or 2 years..or never". I suspect it'll be on the shorter end of that. When she tracks an object (finger in front of the eyes for instance) the eyes tend to bounce back and forth a little at the extreme ends of their travel. She can make out big type but hasn't even attempted any small print. She's pretty lucid but very in the moment, while her memory is still pretty fuzzy. She does have one memory of waking up in the recovery room after the operation surrounded by a swarm of people around the table all moving/talking/working very fast, but is confused about when Joe and Rita have visited and so forth. Overall she's doing very well. |
| April 12 Friday | 10:30 pm - Joe this time. First some photos from Thursday. We'll start with one of the CSF drain reservoir being leveled to her ear to regulate the internal pressure. The next one is a portrait while she was wearing the eye patch to reduce the nausea from her double vision. The last photo from Thursday is one of her standing. The nurse is managing the CSF drain behind her. Now for Friday morning's news: The CSF shunt was removed this morning, and with it the head bandage. Val looks like she was having a bad hair day, but it really isn't that much different from some of the actresses' hair styles at the Academy Awards this year, so what the heck. For those who are interested in the gory details (I dare you not to look!), here is a photo of her scalp stitches. Val's short term memory is yet somewhat fuzzy, and she may ask the same question
several times, forgetting that it was answered fifteen minutes earlier. She is still
experiencing continuous double vision (diplopia*) due to a damaged 4th cranial nerve that controls one eye muscle. Dr
Chandler said that the brain, as a self-correcting computational machine, tries very
hard to correct diplopia on its own. If it appears to be permanent after at least a year,
it can be corrected surgically if other methods fail. Surgery is a one-shot deal though;
if the eye corrects itself after surgery, the patient then reverts to
now-uncorrectable double vision. Those who are assisting Valerie with prayers and
meditation, please envision her healthy and active, with clear binocular vision. On the less cheerful side of the Friday morning news, Dr. Chandler has looked at the latest MRI images (no photos yet) and said that there is about 40% of the tumor remaining; he wants to start radiation treatment in 6 months. We will have to do a consultation with the radiological oncologist (tumor/cancer specialist). The doctors expect expect Valerie to be released Sunday morning, if... she moves her bowels by then. Since she hasn't had much appetite and has mostly been drinking juices and "green drinks", it may not be immanent. Their concern is constipation caused by morphine and other pain killers. Val said "I guess I'll just have to eat a few bowls of rice and get it over with." If she is released Sunday morning after just three days in the hospital following intensive care, she'll win the bet she had with Dr Von Doersten. Friday evening's news: Val has had no pain medications today, and is pain and headache free - and has the doctors shaking their heads. The speech pathologist says she need come no more to Val's room, and the same for the physical therapist. It clearly pays to be very healthy going into surgery! She can now walk by herself (with one eye covered) as well as she could when she entered the hospital, which is somewhat tipsy, touching walls for balance. Val got a sponge bath today, and Jan, the neural monitoring technician, came with a bottle of acetone to take the glue out of her hair. Tomorrow she gets to wash her hair, which she is very much looking forward to! On other fronts, because at least from my perspective it's part of all this as well, I more or less crashed emotionally Thursday night, feeling totally overwhelmed and emotionally fried. I'm sure that not sleeping well for two weeks and eating out of boxes to save time as I drive back and forth to Missoula from work didn't help. Am feeling somewhat better tonight. I would like to thank all those who have enquired about me and offered their support. I'm learning how necessary it is to accept such offers. And thank you also to those who offered a place to stay in Missoula during my trips to visit Val. I accepted one offer, and the peace and haven it has afforded has been valuable beyond description. Although I was only able to accept one offer, the others would have meant the same. Thank you all. |
| April 13 Sat | Val has met the condition for release mentioned above. This morning she
accomplished that with no problem, walked up and down the hallway, up and over the
practice stair set, showered and washed her hair, and while brushing her teeth - blacked
out. She woke up on the floor with a nurse looking down at her. The nurse helped her to
her feet and it happened again. She woke up with two nurses looking down at her. Val calls
it blacking out, they called it a seizure and prescribed Dilantin, which I am not at all
happy about as it is a very serious and addictive drug* with many adverse side effects. I
do not know if this will be short or long term. More later. * Dilantin information at http://www.rxlist.com/cgi/generic/phenyt.htm On a more cheerful note, now that she is fully alert, she is extremely bored hanging around the hospital. I am printing out the e-mails and jokes and stories you have sent to read to her. Thank you all for your communications! |
| Saturday night's news - Val's body, normally with very
prominent, easy-to-stick veins, rejected the Dilantin by collapsing three veins in
attempts by three nurses to start an IV. They finally called in a nurse from elsewhere in
the hospital who 'never misses'. When Val said "I don't think my body wants this
stuff." she was told that if she did not accept an IV infusion of Dilantin, she would
not be released Sunday and would need to be held for observation. So she blessed the drug
as she felt it burning all the way up her arm. Her body rejected it again by reacting with
a massive throbbing headache - the first she has had through this whole process, a feeling
of intense pressure in her head, and loud tinnitis. So fairly quickly the dose was reduced
in the IV, and was stopped a little later. She spent the rest of the afternoon and evening
recovering from the effects of the IV infusion. Val has no feeling in her scalp forward of the incision to her cheek, that nerve having been severed with the incision. That area includes her entire left ear. Dr Von Doersten says the nerve will regrow in three months or so. She also has no taste sensation on the back of her tongue on the left side which may indicate an impairment of the IXth and Xth cranial nerves. She says that area is also dry, the salivary glands also being inhibited. Here she is Saturday night with a cotton eyepatch, since the elastic on the pirate patch hurts her healing incision. The cotton eyepatch will be shifted from eye to eye with occasional attempts at using both eyes, until her brain reprograms itself. |
|
| April 14 Sun | Val being very tired of looking at the wall and the clock, Sunday morning
I moved her bed around to where she could see outside, since turning her head to the side
is painful to the incision, and turning her eyes to the side is nauseating. Here is the view she had. The doctors agreed to go ahead and discharge Valerie
today, and we spent the morning doing paperwork, physical therapy [photo] (the therapist did come back after Val's blackouts),
and learning about the medications she has been prescribed. She has been weaned off
Decadron, a synthetic steroid given to reduce brain swelling. She will go home
with Ativan, as needed for vertigo; Celebrex, as needed for pain, inflammation, and
stiffness; and Dilantin, to be taken 300mg 1x/day, for two weeks for seizure prevention.
The oral dose should not cause a reaction like the infusion, and if it does she can
discontinue use. As I pursued the concept of "blackout" vs. "seizure", thinking Val has just done too much too soon, Dr Von Doersten said that Val's episode did not match the usual profile for fainting or blacking out due to low blood pressure in the brain right after standing up since she had been up for an hour. But neither did it match the usual profile for seizures since she was fully awake and aware and felt fine immediately afterward. Dr Von Doersten accompanied me down to the radiology department to get the MRI images,
only to find they had been checked out to the Cancer Center where her upcoming
stereotactic radiation treatment will occur. So no "after" pictures yet. But
while we were there he did show me the "after" CT images that were done. In them
I saw something in the axial view sections, little round dots, about 1/4 inch in diameter,
in the top of her brain. I said "Whats that!? and he said "That's the
ventriculostomy* tube." Not having heard that word before I basically repeated my
question, and he said "It's the CSF shunt." Oh! What the doctors had neglected to fully explain before was that the shunt is a tube that goes down through the top of the skull somewhat to one side, penetrating the gray matter of the brain for several inches into a lateral ventrical. Rather more than my concept of a small hole in the skull! Since operations in the lower posterior part of the skull wher Val's was do not normally cause seizures, Dr Von Doersten speculated that it was irritation in the brain from the ventriculostomy that was causing them. While asking about the radiation treatment, I learned that while normal radiation treatments may use two beams converging in an area, stereotactic may use 30 beams. This gives much lower doses to surrounding and intervening tissues and higher doses to the tumor. I asked why the radiation will occur so soon instead of waiting to see if the remaining tumor will grow. He said it will grow since the part they had to leave has a good blood supply because it surrounds the critical artery that supplies the brain stem. Tumors have the ability to cause arteries to grow new branches into the tumor for its blood supply. Normal ANs are supplied from vessels around the outside of the tumor. The radiation is supposed to not injure normal healthy blood vessels. This treatment will be done only once ... unless it grows. Discharge - While it has only been three and one-half days since she was discharged from Intensive Care, Val was more than ready to go home. We made it out the door around 12:30pm Sunday [photo] and were home by 2:00. She was only mildly nauseated by the movement of the truck, and didn't have to use the plastic bowl we had brought along. She did find it was better to keep her eyes closed. She is installed on the living room couch, and we are using my under-utilized small Family Radio Service radios as a pager and intercom so she can call me when she needs something. From here, I will start a new page, Val's updates from home since this page is already far too long. Postings will be made much less frequently, perhaps once or twice a week. Much of my time at home will be nursing Val, since she needs assistance dressing, toileting, bathing, and getting just getting around. 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 says she is very happy to be home, and practicing being in the moment. |
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