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September 6, 2002
On Monday, May 11th, 1998, just before my 24th Birthday, I went to work feeling a little dizzy and lightheaded. Thinking it was a low sugar level, I thought that maybe getting something to eat was the answer to my strange sensations. I grabbed something on the way to my 9am meeting. During this meeting, I began to feel a tingling sensation in my face. Basically across my cheeks. I also began having difficulty hearing out of my left ear. It began to sound as though everything was underwater. I informed my manager that I was not feeling well around 10:30, and that I was going to go home and rest. Being the organizational person that I am, I decided to finish up what I was working on before going home. As I was finishing up, the tingling in my face intensified, and this began to worry me. I had never been sick like this before, ever. I decided to go straight to the Hospital before I! could no longer drive myself. I drove to Kaiser, Santa Clara, and saw Dr. Logan, GP, whom I had never seen before since I had never gotten sick. He checked my sinuses and my ear, thinking that maybe I had seasonal allergies. I had been known to get seasonal allergies in the past, so this did not seem an unreasonable deduction. Dr. Logan prescribed an antihistamine, and instructed me to contact him if this did not relieve my symptoms.
Tuesday, May 12th, 1998 - I proceeded to take the antihistamine, feeling no improvements in any of my symptoms. In fact, the tingling had spread to my entire upper body, no longer isolated in my face. This concerned me, so I contacted Dr. Logan once again. He prescribed an ear drop, as it may help my hearing difficulty - it did not have any affect. He then said that I should see an Ear, Nose and Throat Specialist, also at Kaiser, Santa Clara. He made the appointment for me to see Dr. Sinclair, ENT, on Wednesday, May 13th, 1998. Needless to say, I was unable to go to work from this day on.
Wednesday, May 13th, 1998 - I met Dr. Sinclair, who performed a hearing test and checked my sinuses for any signs of infection or blockage. The hearing test concluded that my hearing was normal. My sinuses were clear. The tingling sensation was still encompassing my upper body. Dr. Sinclair recommended that I get an MRI taken as soon as possible.
Thursday, May 14th, 1998 - The tingling had shifted to the entire left side of my body, and my whole head. The hearing was still gone in my left ear. I scheduled my first MRI for Friday, May 15th, 1998.
Friday, May 15th, 1998 - My 24th Birthday. I had my very first MRI ever early that morning. I was told that I would be contacted by Dr. Logan or Dr. Sinclair with the results by Monday. I spent the rest of the day at home, wondering what was going on.
Saturday and Sunday, May 16th and 17th, 1998 - No news from anyone at Kaiser, Santa Clara.
Monday, May 18th, 1998 - I received a call from a colleague of Dr. Logan. I was told (over the phone) that I was lucky to be alive, from what the MRIs showed. I was speechless. First, I could not believe that this doctor, not even MY doctor, was telling me this over the phone. Second, I was in shock from the seriousness of what he had said. I was then instructed to contact Dr. Kushner, Chief of Neurology at Kaiser, Santa Clara, to discuss the MRIs. I quickly made an appointment with Dr. Kushner for that afternoon. I then contacted my husband, Chris, and asked him to come home right away. He did. I also called my parents, who were planning to come out on Wednesday, May 20th; they made reservations to come out Tuesday, May 19th instead. Chris and I went to the consultation with Dr. Kushner together that afternoon. He diagnosed me with an Arteriovenous Malformation, or AVM, in the "Pons"! region of my brain (in other words, my brainstem).
An AVM means that a bundle of veins burst inside the brain, creating a lot of pressure in the surrounding areas. Typically, this is fatal, but God was looking over me. The "Pons" area of the brain is right next to the brain stem, making it impossible to operate on without causing more damage. I was told that there was nothing that could be done for me, and that I would be monitored for any changes. I was also told that I could have another "bleed," but it probably wouldn't happen for about a year. I was not given any instruction as to what to expect as far as symptoms were concerned. I was told to take it easy, and not do anything strenuous. This was not a problem, as I was weak and uncomfortable. The effects that it had taken so far were similar to that of a stroke, although it was all neurological (all nerve related). There was no memory or speech loss, fortunately. The thing with nerves is that it is unknown how much has been lost or will be able to regained. The entire left side of the body had to relearn simple functions from that point, along with hearing deficits to be regained. I also began having difficulty sleeping from this point on, as my body would tingle even when I was not moving, especially my lungs. I was also unable to drive because my reaction time was so slow to things. Bay Area traffic is the worst, so I needed to be alert, and I could not do that.
Tuesday, May 19th, 1998 - My parents had flown in from South Carolina. I had tingling and weakness on my left side, and my hearing was still gone. During my parents' visit we saw many doctors, trying to find out as much as possible about what I had. Dr. Kushner had referred me to Dr. Nutik, Neurosurgeon, Kaiser, Palo Alto, for further consultation. We met with Dr. Sheridan, Neurosurgeon, instead of Dr. Nutik due to an emergency surgery. Dr. Sheridan confirmed all that Dr. Kushner had said. We asked about any alternative treatments for AVMs. He stated that there were a few, but that they were all controversial, and that he did not recommend them. One of these treatments being Stereotactic Radiosurgery. He stated that it would be better to wait for the blood spot to move to the surface of my skull, which would enable me to undergo an open operation to remove the AVM completely. So, that is what we did, we waited for it to move. We were told that it could take up to 6 months, so we prepared ourselves for that.
Wednesday, May 20th, 1998 - My parents left for Pebble Beach, where my mom was going on business. I stayed home, as I could not get around too well. Tingling, hearing loss, and weakness still present.
Thursday, May 21st, 1998 - I decided that I should go to work since there was nothing that I could do to make things worse. I felt that there was no point in sitting home doing nothing. So Chris took me to work. I think that just by getting ready for work that I wore myself out, although I did not think so at the time. I could not do my hair, as it required both hands to do. I just wore a hat.
Friday, May 22nd, 1998 - I woke up very nauseous. I got sick several times. Thinking that this was another symptom that I had developed, I called Dr. Kushner. He told me that it was normal to feel nauseous, and to take it easy and not go to work. I stayed home. I found out what was making me so nauseous, it was double-vision. I looked out on my patio knowing there were two birds there, but I saw four, very clearly. Dr. Nutik called that afternoon to speak to me, since I had not been able to meet with him on Wednesday. I told him of my double-vision. He recommended that I wear a patch over one eye to eliminate the nausea. Chris bought me a patch and I wore it on one eye and then the other so as not to weaken either eye. This worked a little bit. My stomach felt a little better, although the rest of me was still tingly and weak. I was also able to make an appointment with Dr. Steinberg, Neurosurgeon, Stanford Medical Center, for Tuesday, May 26th.
Saturday, May 23rd, 1998 - We had plans to meet my parents in Pebble Beach, and then drive down to San Luis Obispo for the Memorial Day Weekend. I wore the patch the entire day, sleeping the whole time I was in the van. (Sleeping in cars became the only way that I could bear the movement, even just to the store.) I wore a head rest to keep my head from hurting. We traveled to San Luis Obispo, and stayed at the Apple Farm B&B. I was not able to eat much, as I got sick quite often. Minor movements such as turning my head got to be complicated. I managed to eat a small bowl of awesome corn chowder, this turned out to be my last meal for three days.
Sunday, May 24th, 1998 - We met my Aunt Marty and Uncle Mike at Hearst Castle in San Simeon. I borrowed a wheelchair from Guest Services so that I could get around. I tried eating a picnic lunch, it didn't work. I went on the Hearst Castle Handicapped Tour. Chris accompanied me in my wheelchair, as the rest of the family took the normal tour. We went back to Apple Farm for dinner. I did not even go, I knew that I could not eat. My family brought me dinner, but I could not eat it. I tried eating baby carrots, they were good, but when I turned my head, they would not last. I was hungry...I was tired...but my body would not let me eat or sleep. I slept on the couch so that I would not keep Chris awake with me. I wore ear plugs from this point to keep out any loud sounds in my left ear. Any loud noise was painful, any extremely soft sounds were painful.
Monday, May 25th, 1998 - Memorial Day. I got sick several times that morning. We heading back to the Bay Area from San Luis Obispo. I slept the entire time. When we got back to the apartment, I did not have the energy or the stomach to get up the two small flights of stairs. I made several attempts to get upstairs, they did not work very well. I even tried sitting on the steps, pulling myself up one step at a time. The entire process took Chris and my dad about a half hour. I managed to get upstairs without getting sick. I made it to the couch...and got sick. My mom, dad, and Chris took one look at me, and said, "You're going to the hospital." I did not want to go, as it meant going back down the stairs. They said "tough," and progressed to PUSH me down the stairs (getting sick three times on the way down). I got to Kaiser, Santa Clara, and waited hunched over in a wheelchair for the next! doctor. I did not even have the strength to hold up my head. I had not eaten for three days. Plus all of the tingling, hearing loss and weakness that I had originally had was still there. The doctor that saw me decided to call the doctor on call, Dr. Ayyar, Oncologist. Dr. Ayyar was there within a half hour (pretty fast considering it was a holiday). She took a look at me and knew that I would not be going anywhere. She told me that she would take care of me as if I was her daughter...and she did. I was quickly admitted to my own private room. I was given an IV of Decadron and Phenergan. Within 15-20 minutes, I was hungry...and boy did I eat! The food was great! (Forget what people say about hospital food!) Dr. Ayyar checked back on me several times that night. I felt comfortable, for once.
Tuesday, May 26th, 1998 - Dr. Ayyar, Dr. Kushner and Dr. Logan came by a couple times throughout the day to check on me. I felt very well taken care of. They were all so supportive, and caring. It was wonderful. I had my second MRI at this time. It became obvious that I had had another bleed - a second bleed that they said would happen - just not one week later. I was unable to attend my appointment with Dr. Steinberg at Stanford, as I was now sitting in a hospital. So my dad and Chris drove up to Stanford to meet with him, and discussed my case. He stated that he would like to continue to monitor me, and that waiting for the blood to move would be the best solution. He also mentioned that Stereotactic Radiosurgery may also be an option for me, but that he would like to wait. I spent that night in the hospital.
Wednesday, May 27th, 1998 - I was released from Kaiser, Santa Clara this morning. I felt stronger, and very well cared for. I never had nausea again- thanks to the Phenergan. Dr. Kushner and Dr. Ayyar recommended that I see a Physical Therapist for my left side. They wanted me to stay active, and not lose any more mobility. I was given a cane, a walker and a wheelchair to get around with. I began having stiffness in my left side from this point on. It was very difficult to maneuver myself around.
Thursday, May 28th, 1998 - I skipped my midnight Phenergan, as I was told to not to take it if I felt that I was ok. I quit wearing my patch this day. I was unable to sleep flat on my back from this point on. I had several pillows propping me up. My head would feel a lot of pressure, and cause me to have nightmares. I could not sleep on my stomach as it would cause my ears to plug up, for some unknown reason.
Friday, May 29th, 1998 - I was actually able to sleep in (I was normally up around 4:30am), I felt a little more rested. I decided to take my midnight Phenergan to ensure that I would sleep well that night.
Saturday, May 30th, 1998 - I was able to sleep until 6am. Because my parents were still here, I decided to make some strawberry jam with my mom, while dad and Chris went golfing. I had a great time, with a little help from mom. I felt like getting dressed up, so mom helped me, this was very difficult. I could not get myself dressed most of the time. We met my dad and Chris for dinner at Hungry Hunter. I got tired around 9:15pm.
Sunday, May 31st, 1998 - Mom and dad left at noon. Chris and I decided to try going to the grocery store. We had not done this since this whole thing started. I was able to use the electronic cart from this point on. I was also able to feel no tingling for about 5 minutes this day. I was also able to try sleeping on my side a little bit, this would help rid some of my back pain caused from being on my back all of the time. My left side was feeling stiffer, the skin felt tight. I tried bathing to relax it. Chris continued to bathe and dress me everyday. He began cooking all of the meals, doing all of the housework and laundry, and driving. I became totally dependent on him for everything.
Monday, June 1st, 1998 - Chris returned to work. I stayed at home and watched TV. This became my daily routine for the next few months. Chris took me by my work to get some papers, so that I could do some work while I was sitting at home, there was nothing.
Tuesday, June 2nd, 1998 - Jan Thomas, Physical Therapist, came by the apartment to give me some exercises to do for my arm and shoulder. A Kaiser Social Worker came by to explain all of the services accessible to me. I decided that I would like to go to the Easter Seal's Timpany Center for Aquatherapy. I tried to make myself stay up late so that I would sleep better. It worked.
Wednesday, June 3rd, 1998 - I went out to dinner with Chris. I hated staying home all day and being bored. I wanted to get myself dressed, so I did, but it took a long time, and a lot of resting periods to do so.
Thursday, June 4th, 1998 - I began having heartburn, took Tums to get rid of it. Still had tingling, hearing loss and stiffness on left side.
Friday, June 5th, 1998 - I took a short nap in the afternoon, which became a daily occurrence from this point on. I decided to cut my hair, as it was difficult for me to sleep with it around my neck in the summer. This also helped Chris when he had to wash my hair, it made it easier to brush too. Because I had a new "do," Chris and I took the Light Rail to downtown San Jose to celebrate. I took my wheelchair. I did really well. Went to sleep late to sleep better.
Saturday, June 6th, 1998 - Slept in until 10am, a first! Chris and I began our "laps" at the Great Mall. (He would push me around in my wheelchair for a "lap"). I had a little heartburn, It must have been from not eating enough with my Decadron.
Sunday, June 7th, 1998 - Slept in until 11am. I was able to dress myself. It became easier to get around without the cane or walker. My vision was still blurry, but no double-vision. I began to wonder if I would need new glasses. I needed to do more exercises, more hand stretches, to keep me from getting stiffer. Even the small repetitive motions seemed to help a little.
Monday, June 8th, 1998 - I tried to relax my left side. I noticed severe stiffness and extreme tingling in my left side. I tried a little Physical Therapy on my own, did not really help much. Pretty painful and uncomfortable.
Tuesday, June 9th, 1998 - Jan Thomas came by, did a little extra work with my stiffness. She suggested that I attend the Kaiser Vallejo Rehabilitation Center for a couple of weeks. She didn't want things to get stiffer, this would be the time to go. She left a message with Dr. Kushner about going. She will get the prescription for the Timpany Center from Dr. Kushner as well.
Wednesday, June 10th, 1998 - Still extremely stiff on my left side. Very uncomfortable. I noticed that distance vision is doing well- rarely see double, just leaning a little bit to the left. Close-up vision is very difficult, but somewhat more manageable. I do not use the patch. Hearing on my left side has not changed in weeks. My ear hears whatever sounds there are, I do not choose what I hear on my left side. Listening more with my right ear. I have not used the earplugs since I left the hospital.
Thursday, June 11th, 1998 - Saw Dr. Ayyar at 11am. Kim (Chris' sister took me) My blood pressure was a little high and sporadic. Got medicine to lower it. Picked up Phenergan refill. Increased time between pills from 6 to 8 hours. Decreased Decadron doses to one pill at lunch and 1/2 at dinner. This should also help me sleep better. I gave her a jar of homemade strawberry jam as a thank you. I also saw Dr. Kushner while I was there. He mentioned that stiffness in left side is to be expected at this point. He also suggested that I go to the Kaiser Vallejo Rehabilitation Center. He will contact me as to when to have my next MRI, tentatively scheduled for June 22nd, 1998 8:00am. I gave him a jar of homemade strawberry jam as a thank you. I picked up my prescription for the Timpany Center Aquatic Wellness Program. I will be taking "Post Stroke" classes. I need to find out about Vallejo before signing up at Timpany. Occupational Therapist visited at 1:30pm. Recommended that I not bend over, do no heavy lifting, or getting up and down fast. Jan Thomas cancelled her appointment with me for today (#1). I tried to do some reading today to see how I do. I did well. I also slept pretty well, much better than the night before. Being very active during the day helped.
Friday, June 12th, 1998 - I woke up at 4am, too much on my mind. Chris and I went to Half Moon Bay to the Goose & Turrets B&B, since we had planned to go there for my Birthday, it was put off until now. I rode in the car really well, did not sleep the whole time like I had been doing.
Saturday, June 13th, 1998 - Went horseback riding on the beach in Half Moon Bay for 1 1/2 hours. Tingling did not seem to get worse with the ride, I did really well.
Sunday, June 14th, 1998 - Went to the Great Mall and did a "lap" with Chris' parents. I had a good day.
Monday, June 15th, 1998 - Jan Thomas visited, worked on legs and arms.
Tuesday, June 16th, 1998 - Skin has been breaking out very badly on my face, chest and shoulders. Used Neutrogena to clean. Not sure of cause. Could be Decadron.
Wednesday, June 17th, 1998 - No real change. I still feel very stiff on my left side.
Thursday, June 18th, 1998 - I was fitted with an AFO brace to keep my left knee from hyperextending all of the time. Should be ready in 10 days. Jan Thomas cancelled again (#2).
Friday, June 19th, 1998 - I was able to pack a suitcase on my own. Although I could not lift it off of the bed. Chris and I went to Modesto for the weekend. I did not wear the headrest in the car this time. I also did not wear the ear plugs. Skin acne still very bad. Slept very well.
Saturday, June 20th, 1998 - Went to Vintage Fair Mall, used the wheelchair. I did some walking at the driving range and did ok.
Sunday, June 21st, 1998 - Woke up at 6:30am, not sure why so early. We went to breakfast, I used my cane. We went to the driving range for 2 1/2 hours, I walked with my cane and did well.
Monday, June 22nd, 1998 - 8:00am MRI. Kim came over from Modesto to take me. I walked up and down too many stairs today - Not a good idea!
Tuesday, June 23rd, 1998 - Excruciating Pain!! My knees were killing me all night and all day. I think that I may have strained muscles from going up and down stairs too much yesterday. I stayed in bed the whole day, too painful to even go to the bathroom. Dr. Kushner prescribed Baclofen for stiffness. Did not help too much, as it is usually ineffective for stroke victims. I used a heating pad all day to ease the pain. I took an hour bath to help ease it as well.
Wednesday, June 24th, 1998 - Still in pain. I spent the whole day off my legs to heal. I did not try to exercise at all. I continued using the heating pad.
Thursday, June 25th, 1998 - Jan Thomas cancelled our last session (#3). Legs feeling better. Baclofen not working for stiffness.
Friday, June 26th, 1998 - Woke up at 4am for no reason. Chris and I went to downtown San Jose with friends, in a Jeep, I did well. Dinner was pretty loud at Gordon Biersch, but it was ok.
Saturday, June 27th, 1998 - Woke up at 5:30, too much on my mind. Baclofen not working, not making me drowsy either. Did not take Phenergan today, I ran out. I stayed up late to see if it would help me sleep.
Sunday, June 28th, 1998- Acne still very bad. I put together my journal to show Dr. Kushner. I got up at 6am, but managed to stop thinking and napped from 8-9 on the couch, I slept pretty hard. I did quite a bit of reading, finished one book and started another.
June 29th, 1998 - Woke up at 1am, fell back asleep at 3am. Slept until
6:45. Took a nap from 9 to 10:30am. Trying to get in to see Dr.
Kushner if possible. I was planning on going back to work on the 6th,
for half days only, and I needed him to sign the forms. Vallejo is out.
Checked into 1:00pm classes at Timpany on Mondays and Wednesdays for 5 weeks.
Update to Dr. Kushner -
Head - Quite heavy, lips pretty tingly, teeth feel solid. Acne severe, but doing better.
Vision - Double-vision is gone. Fast-focusing is still difficult. Able to read pretty well.
Hearing - Left is still extremely loud / extremely soft. Right is fine, no problems.
Left Arm - Quite heavy, extremely stiff fingers.
Left Leg - Having to be careful of hip and knee movements. Hyperextension uncontrollable sometimes. Hurts with hip and knee if not careful.
Left Foot - Feels swollen and skin feels tight. Toes very tingly.
Right Limbs - Ok, just watching the amount of stairs.
Note : Hoping Aquatherapy will help left side stretch out.
Dr. Kushner started me on Decadron Taper. Restated that at 3% each year added, in 30 years I would have a 90% chance of having another bleed. We would still like to wait for it to move. Next MRI should be in about 6 months. Dr. Ayyar called me at home this evening to see how I was doing. She had referred me to Dr. Pappas, Neurosurgeon, Kaiser, Sacramento. She mentioned that he may have a solution for me to investigate.
Tuesday, June 30th, 1998 - Turned in Return to Work Papers to Watt Stopper. Mailed continued leave to EDD, to continue to get disability pay. Mailed in application for Outreach (transportation firm). Start attending Timpany classes on July 6th, 1998. $80.00 for 5 weeks.
Wednesday, July 1st, 1998 - No real changes in anything.
Thursday, July 2nd, 1998 - Picked up my AFO brace, helps with my knee.
Friday, July 3rd, 1998 - Chris and I went to the Monterey Bay Aquarium. I stayed in my wheelchair, it was really cold for me. He had to push me up those really steep sidewalks. At one point, we were on a section of sidewalk that had posts in it, and the posts were cutting off the amount of sidewalk to drive on. We thought we could make it, but we almost didn't - we almost fell off the sidewalk! We both laughed for a long time! = )
Saturday, July 4th, 1998 - Watched fireworks from our apartment complex.
Sunday, July 5th, 1998 - No real changes in anything.
Monday, July 6th, 1998 - I returned to work 4 hours per day. Attend Timpany classes at 1:00 on Mondays and Wednesdays now. Find myself taking naps in the afternoon. Sleeping a little better.
From this time on, I began to gain more strength all of the time. I began sleeping better, although I am still propped up. I stopped using the cane, the walker, and eventually turned in the wheelchair. I went back to work full time on August 11th.
I completed my Aqua Therapy. I was enrolled in a "Post-Stroke" class that specialized in my weaknesses. And of course, just being back in the water was my biggest highlight. As a result of this class, I was chosen to be a research subject for neuromuscular Diseases for San Jose State. However, when I went through the research, my symptoms were already gone.
Dr. Pappas, of Kaiser, Sacramento, contacted me in mid-August (the Doctor that Dr. Ayyar had referred me to). He had me see Dr. Wilder, Radiation Oncologist, UC Davis, to discuss a treatment. I was not aware of anything at the time that I visited Dr. Wilder, I had no idea what kind of solution they had in mind. I was scheduled for August 20th, but I needed more time to research things, so I made the appointment for October 15th, 1998. I met with Dr. Pappas for the first time in September. He requested my fourth MRI, which I had on September 29th, 1998. Things had obviously gotten better. The legion was severely smaller, which explained why most of my symptoms were now gone. It was also obvious that the blood had not moved, and that it probably would not, so this ruled out open surgery. Stereotactic Radiosurgery became my only solution.
I went through Stereotactic Radiosurgery on October, 15th, 1998 at UC Davis Cancer Center. I had a team of ten specialists working with me. I was in at 8am and out at 5pm. I was placed in a titanium halo for my CT scan and my treatment. I have the four holes to heal, and a little swelling around the eyes. Now that the procedure is over, it is just a waiting game. It takes about 2-3 years for the treatment to take full effect. I must be careful, as I may bleed before the treatment is complete. But the procedure is said to have an 85% efficacy rate. To me, this is a lot easier to deal with than the 90% chance of having another bleed from doing nothing.
I have been seen by many, many doctors. I have seen Chief Neurologists and Neurosurgeons from Kaiser, Stanford/UCSF and UC Davis, the best. I have been treated wonderfully, and timely by everyone. The Bay Area is the best place for Neurological situations like mine. The best in the world are here, so I'm well taken care of. It must be said that much of what I went through was not predictable. Little is known about AVMs, as they happen to people at different times, locations of the body, and size varies. I give all of my doctor's credit for helping me get through this difficult time in my life. Without them, I may not be doing as well as I am. And I thank them all.
I would also like to thank my family for being so supportive of me throughout this entire time. And to my husband, Christopher, who has made me the luckiest woman in the world, I love you and thank you for always being there for me.
I hope that this helps explain the things that I have been through.
Please take care and live everyday to the fullest. Thatís why they call today the "Present."
October 22nd, 1998
(edited for readability on March 6, 1999)
Saturday, March 20th, 1999 - I woke up a little late this morning. Chris and I are going to look at SCUBA Diving gear today. There is a big sale at a local dive shop. While I was getting ready to go, I noticed my foot getting tingly. I thought to myself, "I've felt this kind of tingly before." I told Chris about it, knowing we'd spend the rest of the day "keeping an eye on it." We went through the day... things did not get any better, nor did they get any worse.
Sunday, March 21st, 1999 - We went to church this morning, so we got up at a decent time. By this time, not only was my foot tingly, but my leg is now tingly up to my knee. This is something to call the doctor about tomorrow. I know that there is nothing to stop whatever is happening, so it can wait until tomorrow.
Monday, March 22nd, 1999 - I called Dr. Kushner. He requested an MRI. So I made my appointment for March 29th at 2:00pm.
Tuesday through Saturday, March 27th, 1999 - During the week, the tingling didn't move past my knee. No real changes at all. I had my MRI. My mom came out to visit from South Carolina. We spent the weekend in Monterey, I brought the cane with me, but didn't really need it. I took it just in case.
Sunday, March 28th, 1999 - The tingling is now up to my hip, but not very strong. I am glad I am having an MRI tomorrow.
Monday, March 29th, 1999 - I had my MRI in the afternoon. Again, I got my own copies of my films. The tingling has not changed since yesterday. I will have to wait and hear from Dr. Kushner.
Tuesday, March 30th, 1999 - Dr. Kushner called and said that it was not another bleed, but that it looked like swelling from the Stereotactic Radiosurgery. He said that I should call Dr. Pappas and see what he thought. Dr. Kushner asked if I felt like taking the Decadron (steroids) again. I said that there really was no pressure, so no. I called Dr. Pappas, and he has me sending him my MRI films to look at. He said that if it's swelling, then I should take the Decadron. So, today, I started taking the Decadron, and the Phenergan again. I had a severe migraine tonight. Dr. Kushner had prescribed some migraine medicine, I took one. My migraine was gone in a half hour! I couldn't believe it...it worked so well...and so fast.
Wednesday, March 31st, 1999 - My eyes were not sensitive to the sun or light at all. I think it's the migraine medicine I took last night. The tingling is now up to my arm. But I feel okay.
Thursday, April 1st through Friday, April 2nd, 1999 - The tingling has spread up to my head, but all on my left side. Still on the steroids. They haven't started to work yet. Dr. Pappas still has not received my films. I will have to wait until next week to see what he thinks.
Saturday, April 3rd and Sunday, April 4th, 1999 - Chris and I spent the weekend in Monterey and Big Sur. I did okay, I used my cane so I wouldn't tire myself out. We were wanting to go see the Point Sur Lightstation, but it would've been a hike. I didn't feel I could do it, so we decided not to go. Good thing it rained, I didn't feel so bad.
Monday, April 5th through Friday, April 9th, 1999 - No real changes. Still tingly on my entire left side. Having to eat every four hours with the steroids is not fun.
Saturday, April 10th through Sunday, April 11th, 1999 - Chris' family is over for Easter. I feel a little tired, but not weak. I slept a lot this weekend. The tingling is still there.
Monday, April 12th through Friday, April 16th, 1999 - Tingling feeling is really strong. Starting to feel pressure in my head. The steroids are not helping at all. I'm just eating every four hours. Dr. Pappas still does not have my MRI films. Ok...maybe next week.
Saturday, April 17th and Sunday, April 18th, 1999 - We drove up to Carson City to help Chris' Aunt Linda with the Nevada State Library computer network. I didn't do much walking, but did much eating from the steroids. I started my Decadron taper on Saturday night. I'll be glad to get off this stuff. I've already regained all the weight I lost a couple months ago. My skin's breaking out again. And...I still have all the symptoms! It doesn't seem to be working at all.
Monday, April 19th through Friday, April 23rd, 1999 - Okay...so they should've received my MRI films on Monday (they sent them FedEx). But by Wednesday, still nothing. So, after talking with my mom, I decided to just take my own copy up there and meet with Dr. Pappas. The soonest I can get in is next Tuesday, April 27th, 1999. I'll take it. Stiffness is starting to set in. I feel a lot of pressure in my head now. It sure is nice to get off the Decadron...I can actually sleep through the night without having to get up and eat.
Saturday, April 24th and Sunday, April 25th, 1999 - Chris and I went to Modesto. We drove up to Columbia/Sonora/Jamestown on both Saturday and Sunday. I got around pretty slowly, but I got around. I used my cane a lot more this weekend.
Monday, April 26th, 1999 - Took my cane with me to work in case I got tired. Didn't really use it unless I walked to the other end of the building.
Tuesday, April 27th, 1999 - Chris and I got up at 7:30 to be in Sacramento by 11:30. Although traffic on 580 was the worst ever, we still ended up there an hour early. That's ok...we watched Clinton's Anti-Violence speech in the waiting room. Anyway, Dr. Pappas read my films (that I brought with me). He said that it was not swelling that I have, but a plasma (clear fluid) leak. I didn't have another bleed, which is good. He is going to have me take another MRI, to see what state it is in now... since it's been a month since the last one. This plasma will have to reabsorb, similar to the bleeds I've had before. So, instead of the symptoms going away in weeks, it will take months. We're thinking July....we'll see.
Wednesday, April 28th, 1999 - My head's really stiff today. So is my left side...maybe because it's cold outside. Cold seems to make things stiffer. I went to the DMV and got another Temporary Disabled Parking Placard. I ordered the wheelchair to be delivered tomorrow. I figure I'll use that on our longer trips, don't want to be the slow one. I left a message with Dr. Kushner about Physical Therapy. Dr. Pappas wants me to do it - I think I'll try and do Aquatherapy again, since it was so good last time.
None of the symptoms have changed at all this month, which is why I am summarizing the month. I was put back on the steroids, which stopped the migraines, but caused other problems like severe swelling. Chris and I did a lot of travelling in the month of May, since we got the new van, which was not a problem for me at all physically.
June and July 1999
June 1-7, 1999 - My knees have been a big problem for me this week. I had the pain in my knees that makes it so that I can't even walk across the room, and it lasts all day. It's beginning to be bad on my right knee, which is the leg that supports the left - I can't afford to have problems in both knees. I called Dr. Kushner. He suspects that the steroids are causing necrosis of the joints and that I should get off the steroids right away. Basically, the steroids are deteriorating the joints to an extent. So, I have begun my steroid taper and should be off them two weeks. Dr. Kushner called Dr. Pappas, who agrees that I should be off the steroids. So, hopefully my knees will get better as I'm off the steroids and taking a calcium supplement.
June 8 - July 19, 1999 - I finished my decadron taper. All went well with that. I tried to get ahold of Dr. Pappas still. I left many messages with him, his nurses began to know me really well I called so often. Dr. P always was in surgery or out of the office. I finally just called Dr. Kushner and told him what I had been going through. He had seen how the side effects from the steroids were taking their toll on me. Not only did I have sore knees, but severe bloating (especially in the face), slight acne, hair loss, etc. Not a good thing. So now Dr. Kushner is my primary care physician - and he does take care of me.
July 20, 1999 - I went to see Dr. Kushner today. I wasn't feeling well yesterday - a lot of pressure in the head, and a stomach ache. He wanted to put me back on the steroids to relieve the pressure - but the side effects of the steroids outweighed the benefits of not having the pressure. He also felt that since I could not get any feedback from Dr. Pappas, that he would like to call Dr. Wilder at UC Davis (the Radiation Oncologist who did my surgery). I carry the business card with their number on it, so Dr. Kushner called right then. Dr. Wilder had moved to Texas. The Chief of Radiation Oncology (I think that's his title), Dr. Earle, is who he spoke with. Dr. Earle said that what I had been going through was typical at the one year mark - which is right around the corner. He and Dr. Kushner want me to have another MRI this week, and go from there. I was going to ask Dr. Kushner for a second opinion, but I didn't even have to - he just made the call. I feel so good with someone like him to watch over me and my well-being. I know he's a busy man, but he always has time for me. I need that. I'm so lucky to have someone on my side in this big healthcare world, getting things done when I can't. And he talks to Chris too - asking his opinion and thoughts - it really makes me feel good. So I'll get another MRI, and have UC Davis take a look since I've had so many side effects. I'll go from there. Keeping positive that all of this will go away soon.
August 7, 1999- I stopped off at UC Davis to meet with Dr. Earle on my way to Carson City, Nevada. He did not have time to even read my films. His only recommendation was to put me back on steroids. I did not want that to happen. Dr. Kushner agreed that steroids was not the way to go for me. I must try to deal with the symptoms on my own Ė no medication. But I would rather deal with not walking, and not talking very well, than be on steroids. Mom mentioned that she would like me to get another opinion.
August 23, 1999- I tried to get permission for a second opinion at Cedar Sanai down near L.A. Dr. Ayyar even tried to get the referral for me. No such luck. I have probably worn out my referral privilege with my initial referral to UC Davis. So, I decided to go down to Cedarís on my own. My parents gave me the money to go down their for a simple consultation. I saw Dr. Reid Thompson at the NeuroSurgical Institute at Cedar Sanai. He is a Radiation Oncologist, assisting Dr. Black with stereotactic radiosurgery. I was amazed from the get-go. I was sitting in the waiting room, and I saw a pamphlet on stereotactic radiosurgery. I read about the different types, their cons and pros, and even their side effects. I read the one that I had had, on a linear accelorator, and I read about all the side effects that I currently had. No one had ever told me what to expect from the surgery, but here it was in a handout publication! I was happy just to see that! I went in with my Aunt Marty, who works at Cedarís, and Chris. When Dr. Thompson came in, the first thing that he said to me was that I look way better on the outside than the inside! That made me feel good! I went through all of the neurological tests, and he was amazed at how well I was dealing with this. He said most canít even walk. He said he saw a lot of swelling in my MRI Films, and that this is caused by swelling. This sort of swelling is common to the surgery I had. A lot of his patients go through this. He said it usually lasts one to two years! This was way longer than anyone had told me before! Most doctors have said a few months, but a year or two? OkÖ well, I guess I will just have to deal with all of the symptoms! He invited me down for consulations whenever I want. A very good, and positive session!
Since the end of August 1999 until February 2000Ö
February 7, 2000- Well, that visit to Dr. Thompson sure changed my life. I still have all of the symptoms that I had when I went down to see him, but I have gotten used to them. No steroids, or any other medication. I no longer use my wheelchair (I only use it if it is more than a mileís walk). I no longer use my cane. It has been in my car since September. I talk much, much better. I donít sound like Iím wacked out on Novocaine! My husband and I have returned to the gym, and have been working out for about 4 weeks now. I lift weights , and walk on the treadmill every other day. I can walk about a mile at 3.4 miles an hour. Lift up to 70 pounds when exercising my back, and can do about that much with my legs. I am slowly losing the pounds. Not only did the second time on steroids cause me to put back on the weight I lost, but I put on an additional 20 pounds! I am following the Body-for-LIFE Program. Just exercise, and eating right. No diets. And I hope that in 12 weeks, I will be much thinner. Dr. Thompson told me what I needed to hear, although in not so many wordsÖ "You do have bad symptoms, and you should not be on steroids if you are strong enough to deal with them. And I will have these symptoms for a long time, so, in essence, Iíd better get used to it." Just talking to him changed my life. I am glad I went.
Along with that, because of our move to North Carolina, Dr. Kushner has referred me to some doctors at Duke University Hospital. They are the #5 Hospital in the Country, and 10 miles away! I hate to leave Dr. Kushner, but I am sure I will find someone just as caring as he has been.
September 10, 2000- I went to see a doctor at Duke within Neurology. I saw Dr. Barrie Hurwitz. His bedside manor was horrable, he was very rude and inconsiderate of my condition. (And not to mention rude to Chris.) He had little respect for what I had been through, or for my case. I went to him primarily for a recommendation to see a Radiation Oncologist. He did not want me to have an MRI, even though it had been a year. And he went on to say that if I wanted an MRI, I could pay for it out of my own pocket. And when it came time to leave, I just wanted my recommendation and to get out. He didn't even know how to contact Radiation Oncology, not to mention that he didn't even know any specific doctor names. I could've picked out someone easier than he did. Needless to say, I am not going back to see him.
I then saw a Radiation Oncologist at Duke University, Dr. Marks. He was a bit kinder, but still not that familiar with my history or condition. I did not want to chance that he would not approve an MRI for me, so I contacted Dr. Thompson at Cedars-Sinai again. He was the last doctor I had seen in CA, and he said then that he would recommend an MRI for me every 6 mos or so. It had been a year, and I knew he would want one for me. So I made an appointment with him for while I was out in CA after mid-August. He looked at my films and said all swelling was gone, and that the lesion was 2/3rds the size of the lesion a year ago, and 1/8th of the original size. He was still optimistic that my symptoms may go away someday. He was still impressed at my progress and with how well I was coping. At least I know that for $5 I can go see him.
2001- Nothing has happened with my AVM for a long time now. No changes for
the worse, or even the better. I am still tingly on my whole left side of my
body, numb on the right side of my head, and primarily deaf in my left ear.
Since I have been this way for so long, I have no choice but to get used to
the feeling more and more each day. There may still be a chance that one day
I will return to "normal," but I am certainly not holding my breath.
And if it never happens, I am fine with that. At least I am here to enjoy life
with my husband, my dog Kuma, and my family.
July 2001 - There has been absolutely no changes in my health, for the better or worse. It seems that I will be getting used to my situation for a long time, and that's okay. One small step at a time. I can walk farther and farther everyday, but stairs and hills are still my enemy.. = ) I keep my chin up. At this point in time, it has been about three years since my surgery. And it's been a long long time since things have changed. I think the damage has been done for me, and that I am not going to change at all. And I am totally okay with that. There may still come a day when things may change, but I am not expecting one.
August 2002 - There has been no change in my symptoms at all since the last update - thus, the reason why I have not updated this page in a year and some. As stated earlier, I believe that the way I am now is the way I will always be. I climbed my first North Carolina lighthouse a few months back - Currituck Lighthouse. It was a challenge physically with all of the stairs, but mentally it was easier than I thought. Lighthouses are taken one step at a time. = )
to Treasure Life.
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