|My intent with this blog is to leave a bread-crumb trail and shine a light ahead for those that follow me along this adventure through the US health care industry to the fun side of invasive brain surgery.
Information-imparting and reassuring for those facing it in the future, but with a positive and pleading-free flight to a happy experience with brain surgery in a health care system gone completely awry, that would do service to Monty Python.
Also, for family and friends to check from time-to-time to see which square the dice roll has landed me on today.
|My name is Paul and I am a 65 year old mostly retired man with a recently discovered AVM, (cerebral ArterioVenous Malformation). Divorced years ago, I live alone with my two dogs, about an hour and a half from Dallas, near a lake surrounded mostly by retired folk. My three children are grown with busy lives rearing my grandchildren and pursuing their careers; the nearest two living about six hours away. Having spent most of my adult years in Dallas my medical support is still there. I have always had some back and neck problems and have just lived with them except for some traction therapy for my neck about 1982.|
In the order it all happened.
Your life is so exciting I don't want to miss a bit.
(Not quite as organized as Story form)
Most recent happenings first.
I don't have time to live my neuroses and yours.
Scheduling Coordinator in Dr. Watson's office
Office Manager in Dr. Watson's Office
Dr. Terry Watson
my great General Medicine doctor
June 13th, 2006, Tuesday. My semi-annual check-up and blood-labs with my friend and General Medicine doctor of many years, Terry Watson, DO, PA, was scheduled for this morning. I have been taking Lotrel for blood pressure and Lipitor for cholesterol for years, and my good GM doctor watches the test results closely.
About three years ago my weight had slowly crept up, but the scale had merciful stopped at 199 pounds, I discovered on one of my weigh-ins preceding a previous check-up. To avoid adding that last pound to 200, I removed real butter and ice cream from my shopping lists, and slowly reduced to my high school weight of 175. I was happy with that, although, I'm sure it represented a lot more fat than it had 45 years earlier.
Being a heavy smoker since I was about 20, I finally quit in February 2005. During the following 16 months I have eaten my way back up to 194 pounds the scales reported starting out this morning's office visit. Obviously, it is time to quit making food the central focus of my cigarette free life.
Today I reported some symptoms that have developed very slowly over many years, that I have ignored mainly due to maleness and fatalism, I think. I admitted to progressing and now severe numbness on my left side, an awful feeling of pressure in my head when I cough, lift, or strain, recently increasing tinnitus in my left ear, and a very stiff neck.
As my good doctor levitated off his stool in obvious frustration, [that was hyperbole], I also tried to report some digestive problems following a course of Clindamycin with a periodontal oral surgery two months ago. He said we only had 30 minutes scheduled and I would have to come back for the digestive problems, (but he did have a nurse get together a sample kit for me to bring home). He was rightly very frustrated and probably angry with me. He has devoted well over 20 years keeping me healthy, sewing me up when I stupidly cut something, probing in my feet for splinters, and treating one infirmity or back strain after another. There was the feared heart attack in '93 that was fortunately just stress, and lots of other water under our mutual bridge. How could I have not told him about these symptoms? He ask when my symptoms started and I told him I had seen an internist about 1970 for numbness in the back of my hand while driving and it had slowly increased since then. I had first faintly noticed the tinnitus about five years ago.
I admitted that I thought my symptoms were probably due to an aneurysm since there is a family history, (mother and grandfather). I reminded him that I had always argued against an aspirin a day citing my concern of aneurysm. While writing furiously he mentioned his opinion of self diagnoses, and called for another note sheet. During the next hour and a half, he had me scheduled for an MRI followed by a CT scan with contrast tomorrow, hearing tests and an appointment with an ear-nose-throat otolaryngologist the following day, a consult next week with an ortho neurosurgeon, and also with a neurologist. Plus he has me scheduled back in his office next week, ostensibly for a digestive consult.
He said he doesn't think I have an aneurysm, not to worry too much, and that he suspects the ENT doctor can do something to help the tinnitus.
June 14th, 2006, Wednesday. This morning I had an interesting MRI of my cervical spine, (neck), and then a CT scan of my head with iodine contrast through an arm vein. These tests were done at Baylor's new Diagnostic Imaging Center in North Dallas, at Central and Park Lane. This is a really nice place with free parking garage and a friendly unrushed staff. There was no waiting at all. First a little paperwork, then to the dressing rooms with lockers, where I changed into scrub pants. Rudy got the scrubs for me and said I could leave on my knit shirt, socks, and underwear. You just can't be wearing any metal. Then he took me to the MRI where he and Pam helped me get comfortably situated on the sliding table. Pam ran the tests. The MRI took about 45 minutes, (as did the following CT scan), with the tests broken into short segments. Some people are disturbed by being in the MRI tunnel and by the noise. They do give you ear plugs, and a panic switch, but even though I didn't feel particularly claustrophobic, I was glad when the MRI was over. Before the CT scan Rudy took me to another room and put an IV port in my arm for the contrast injection. The CT scan is much more open and less nerve-wracking than the MRI. When the radio-opaque iodine contrast was released there was a quick flush of heat in my head and neck, not painful, accompanied by a strong taste and smell of iodine. It quickly faded. After the CT Rudy guided me back to the dressing rooms where I dressed and then drove back to the lake.
Tonight an internet Helix friend in Australia, a radiologist, Dr. David Gudex, suggested we get and keep a copy of any medical images on CD-ROM, in DICOM format. And download a free copy of the open source OsiriX medical image viewer so we can look at the scans on our own computer.
June 15th, 2006, Thursday. This morning I met with Dr. Dwight Lee, Otolaryngologist, and also had a hearing cognition test conducted by Dr. Alice Wilson, Audiologist. The test reveled that I have a lot of loss in my left ear hearing nothing below about 70 dB. My right ear hears down to about 50dB, but no high frequencies above 2,500 Hz. Dr. Lee's initial conclusion is that I probably have some late impacting scaring from a 1961 car wreck head trauma causing my tinnitus and loss. But he is reserving final judgment until he sees the results of yesterdays scans. He did tell me that the left brain side responds to the left ear, not the opposite side as is the case with most other brain functions. He also confirmed that the auditory nerves connect directly without being routed through the spine, so my hearing loss is not connected to my c-spine degeneration.
I then drove up to the Baylor North Image Center to get a CD-ROM of my MRI and CT scan from yesterday. I merely walked in, ask Rudy for a disk copy. He disappeared for about five minutes and reappeared with the CD. While there I also had copies of the radiologist's report from the scans faxed to Dr. Lee; and was given copies for myself.
When I got back home, there was a phone message from my GM doctor's office manager, Sheryl Webster, so I returned her call. She had the radiologist's conclusions from the scans, (which I had read driving home). The c-spine MRI shows a good bit of degeneration in my neck, both disks and vertebrae need to be addressed.
Just look at that collapsed fourth disk! No wonder my neck is stiff.
It looks like my head could break off most any time.
(About half size. Click image to enlarge).
But the real corker is that the CT scan shows what is thought to be a small, (1 cm), meningioma in my left frontal lobe and a similar sized growth in my right max sinus. But he didn't find any signs of aneurysm or bleeding. Both are good news. The radiologist recommends another MRI with contrast to further delineate the meningioma.
So Sheryl tells me she has scheduled me another MRI for the following Monday. She also told me the doctor says not to worry, that it isn't an aneurysm and the meningioma isn't malignant.
I haven't mentioned that in anticipation of this runaway healthcare train, before my appointment last Tuesday with my GM doctor, that I had taken my dog-team to stay at the Hotel and Spa de'Jones, overseen by my good friend and veterinarian, Lisa Jones, DVM. The dogs would rather board at her clinic here at the lake than stay at home, I think. They know their own kennel at Lisa's, surrounded by others of their kind, and have a great acre yard for exercise. It is pretty quiet and boring at home by comparison. Anyway I'll pick them up tomorrow morning to spend the weekend at home with me.
June 19th, 2006, Monday. Second MRI. I drove into Dallas this morning for another MRI at the Baylor North Image Center. I have gotten to know the friendly staff on first name basis by now. Rudy guided me through the labyrinth to the changing rooms and helped me with the scrubs. He took me to an exam room where I laid on the table while he strictured my arm and coaxed a vein to come up. When he had what he wanted he painlessly tapped my arm for the contrast dye connection. Then to the MRI suite where he and Pam again made me secure and comfortable on the table. He even placed an angular pillow under my legs to flex my knees. The MRI really isn't bad at all. There is a mirror directly above my eyes where I am looking in Pam's face as she sits at the controls, and I have a signaling bulb in my hand to stop and call her. There is an intercom so you don't even have to raise your voice. The tests are broken up and each only lasts about five minutes. Between segments she always asks if I'm doing OK, and gives me a chance to fidget. She tells me the approximate length of the next test, and then we start it. Not bad. The MRI dye caused no sensation at all today.
An hour later, with a big smile, I was headed home with a new CD-ROM of this latest scan. There was again a call waiting from Sheryl in my GM doctor's office.
(About half size. Click image to enlarge).
It shows part of the draining vein toward the center. A bit of a gastly image, isn't it?
(About half size. Click image to enlarge).
Dr. Daniel Clark, radiologist had phoned his MRI reading to my GM's office as I was driving home. Seems I have an AVM, (ArterioVenous Malformation), in the dural tissue at the front of my left frontal lobe. Just behind my left eyebrow. An AVM is a vein node that several arteries feed directly into without any capillaries to slow down the flow or pressure. The pressure usually causes the vein to expand, and can sometimes blow out. This would not be a good event.
Sheryl tells me the doctors have conferred and I am scheduled for a cerebral angiogram for 7AM Friday morning at Baylor main hospital. She gives me a number and says to discuss the particulars with Linda at Baylor. I ask if it involves a femoral artery puncture, and my doctor asks in the background what difference that makes. I say it means I wouldn't be able to drive home. Sheryl says, "ask Linda at Baylor."
After much discussion with Linda, she insisting that someone will have to drive me home, and me insisting they will have to keep me overnight, she mentions the Baylor Hotel on the 12th floor. From this point on, all is duck soup. I make a reservation to check into the hotel Thursday evening, (before 9 PM), will have the angiogram at 7 Friday morning, be wheeled back to the hotel afterwards, and stay until I feel like driving home, probably Saturday morning. I spent the rest of today, (and Tuesday), Googling and reading everything I can find on AVMs and cerebral angiograms.
June 21st, 2006, Wednesday. On my way into Dallas this morning I dropped the dog-boys off at the Hotel de'Jones where they will stay until next week. My first appointment this morning is with Dr. Mark Glover, my periodontist, for a two month post surgical evaluation and a scheduled cleaning. I have called twice to be sure that my 11 AM appointment will give time for me to get to a 12:30 appointment with Dr. Watson, my good GM doctor, just a few miles away. I even called before I made the second appointment. I always try to arrange multiple appointments when they are made weeks in advance, to avoid making a second 150 mile trip. It is amazing how seldom I am able schedule two same-day medical visits. When I get there 30 minutes early and they tell me that an hour won't be enough, so they move my cleaning two weeks hence. Oh well. The doctor starts the post op evaluation and they think maybe they can work in the cleaning before Noon when I must leave. After then waiting a few minutes, they tell me they have made some schedule adjustments, and can do the cleaning at 1:30 PM today if I can make it back by then. I assure them I can. I told the the doctor what a loop the Clindamycin threw me for that he prescribed with my oral surgery two months ago. He said we won't prescribe it again for me. He also says the oral ossiosis and bone graft was successful, and will probably save my lower left molars.
I arrived 15 minutes early at Dr. Watson's offices in Oak Lawn area and they got me right in. My weight was still 194 pounds, (I would have thought some parts would have worn off during the past hectic week). I gave my sample bottles in a brown paper bag to the tech on my way in. Terry reported that my blood panels were all good. Liver function and cholesterol, (169), were good. Terry said that it had been quite a week for me, and that he was anxious to see the results from the angiogram two days hence. He also said that Dr. Lee, (ENT), had sent in a report suggesting I start Xanax for my tinnitus, and start a therapy course at the Collier Hearing Center to teach me to live successfully with tinnitus. (Like I haven't been for five years). I don't think I'll be doing either, I tell him. But I will see Dr. Lee again after we know more about my brain plumbing. He also writes me a prescription for Flagyl, to be filled if my sample results find bacillus difficultus in my gut, (a possible result of the previous Clindamycin). (I'll get it filled but won't start it until I'm back home next week after the angiogram). We quickly discuss the two neuro consults I have coming up, and then I'm out of there by 12:45 PM.
Even in lunch-hour traffic, I have a leisurely drive from the Oak Lawn area up to Dr. Glover's Preston Road and NW Hwy office for my 1:30 cleaning. The cleaning takes about an hour and the tech is nice enough to prepare me a little travel pack of oral maintenance items for my upcoming vacation trip at Baylor Hotel et Hospital.
before my hour and a half drive back home.
Remember that great all night bakery and deli that was in this location? What was it called?
(Sometime later I had dinner again at The Bronks with Jess and his friend Bill, and the trivia question was solved.
The all night bakery and deli was Lucas B & B).
June 13th - July 28th
Story form Blog form
Check-up, June 13th
MRI and CT, June 14th
Hearing, June 15th
Second MRI, June 19th
Regroup, June 21st
Angiogram, June 23rd
UTSWMC, June 26th
Sonogram, July 2nd
Brain Surgery, August 1th
C-Spine MRI, June 14th
AVM Fistula, June 19th
Angio Images, June 23rd
Sonograms, July 2nd
Post Op Day 2, August 5th
Ambulatory Care Center
UT Southwestern Medical Center
INTERVENTIONAL PROCEDURE NOTICE
ZALE LIPSHY UNIVERSITY HOSPITAL
5151 Harry Hines Blvd
July 6, 2006
The following has been scheduled for you:
Presurgery Testing: Tuesday, Aug 1, 10:30 AM. (Then go cool your heels somewhere until next morning).
Embolization: Wednesday, Aug 2, Arrive 6:30AM. (Someone must drive me home afterward. Here we go again).
No mention of scheduled brain surgery the next morning. (Soon we will get this all nailed down a bit firmer).
So Here's The Deal My Cheeky Monkeys!
Tuesday, August 1st. Visit for some pre-op blood tests, etc.
Then leave and go home until the next morning.
Wednesday, August 2nd. Check in at 6 AM for some embolization.
No big deal! Very similar to the angiogram two weeks ago. I stay conscious, have some valium.
Just uncomfortable all day from groin puncture. I really won't feel like having visitors.
Thursday, August 3rd. About 7 AM some open skull brain surgery.
Then a couple of vein snips. Then close. OK, Who's hiding his skull cap?
No big deal. Low risk. I'll probably be semiconscious for the day.
I will try as hard as I can to respond "Rosebud" if they try to rouse me. (Marie's suggestion).
Please don't come. You can't do anything. I'll post a phone number for progress info.
I really don't know when I'll feel like entertaining. But please don't feel a need to show up,
because I'll feel like crap for a few days. I'll blog it when I start getting lonely.
Then you can bring some dancing bears.
I suspect I'll be in the hospital about a week for my skull to knit a bit
and blood to quit dripping in my eyes, before I roller blade home.
What if my personality changes after my brain has some elbow room?
What if I change gender prefs? Oh Darn!