Paul and I flew to NIH in Bethesda, MD so I could take part in the clinical study of NF2 being conducted by Dr. Asthagiri. My Nana flew in and spoiled my kids rotten, so I was able to focus completely on the trip. We left Sunday before sunrise and as the plane began it's descent into Maryland all we could see were golden leaves. I guess that is what Autumn is actually supposed to look like.
I had MRI's done by a high tech MRI, saw an ENT, a neuro opthalmologist, and finally on the last day sat with Dr. Asthagiri to go over my NF2 history. Luckily I had already emailed him a timeline, my memory is foggy, probably by choice at this point. The neuro opthalmologist saw what could be a tiny hamartoma in my right eye, we are going to watch it. The ENT thinks my choking episodes may be related to my reflux and recommended prilosec. The MRIs were incredibly clear, and Dr. Asthagiri was able to show me area by area how many tumors I have. I don't know if the MRIs were just more accurate, or if I have had growth everywhere, but everything seemed huge. My vestibular schwannoma which I have had treated with Gamma Knife are still stable, but the huge double blob at the top of my head made me cringe. Looking at my spine, I have a bunch of tiny, unassuming growths. The doctor assures me there is no need to worry. I know there is no point in correcting him, each of those tumors will grow. I know full well as of today I am just fine, it is the future those tiny tumors represent which I fear. At the very top of my spine, maybe even near my brainstem, was also a small tumor deep inside. This was my first introduction to this particular tumor, and my stomach twisted even as I smiled and nodded politely at the doctor. The lumbar tumor I had treated with Cyberknife looks larger now rather than smaller, but that could be from swelling. I've had cramping and pain, but attributed it to... I don't know... running 26.2 miles? So we will wait 6 months and reevaluate that tumor, if it continues to grow, I am looking at yet another spine surgery.
There is nothing I can do right now, or any decisions to be made. Like most people with NF2 all I can do it wait, and try to keep looking ahead. I can't crawl under the covers, I just have to shake it off and keep running.
Showing posts with label MRIs. Show all posts
Showing posts with label MRIs. Show all posts
Friday, October 23, 2009
Friday, April 10, 2009
What is Cyber Knife?
Cyber Knife is a robotic radiosurgery system utilized for treatment of both cancerous and non-cancerous tumors throughout the body. It is extremely accurate and able to pinpoint the exact location of the targeted tumor with the assistance of MRIs and a technician's guidance. My neurologist, Dr. Duma, performs neurosurgery, Gamma Knife, Proton Beam, and Cyber Knife personally. I know when he chooses a treatment for me he is making the best choice for my individual needs and is not limited to specific types of surgery. A typical Cyber Knife treatment starts with a foam molding of your body being made. You are given an MRI in that mold, and the doctors use that information to form a treatment plan. Once the doctors are ready to begin you settle into the mold which is actually quite comfy. According to the Cyber Knife website, treatment lasts between 30 and 90 minutes depending on tumor size and location. During treatment the robotic arm rotates all around the patient, painlessly zapping the target with an invisible beam of radiation. Sometimes treatment is done over a period of several days, spreading out the amount of radiation delivered to the tumor in order to spare the healthy cells surrounding the area from radiation damage.
I have had Cyber Knife one time with Dr. Adler at Stanford who is actually the creator of the Cyber Knife. My treatment lasted one day, and my only side effects were a bit of fatigue and nausea for 1 week. The tumor was located in my upper C spine and visibly stopped growing at my 6 month follow-up MRI. This time I will be treated in Vista by my own neurologist, Dr. Duma. He insists there are no ill side effects, and that my prior experience of fatigue and nausea were due to the stress and anxiety surrounding the process. The Cyber Knife website states that patients may experience minimal side effects for the first week or two. I am opting to believe I will feel perfectly fine, but do not think I am so weak as to have created my symptoms as a stress response the first time around. Regardless, the possibility of being a bit tired for a week is nothing compared to the fears I would be facing if I was having regular invasive surgery. It amazes me that just 15 years ago my Mom had no options, and today I may have 3 tumors treated in a day, 2 of which are only being treated "just because we may as well while we are there!" Without radiosurgery I would have had at least 3 or 4 brain surgeries by now, and am not sure my body would have even been able to handle that. If Dr. Duma decides to radiate all 3 of my spine tumors, I will not have a single active tumor in my body!
I feel so blessed and grateful to have these treatment options available to me and to be under such great care. I only wish all people with NF2 were able to recieve such a high level of patient care, and pray for the day in which we truly have universal health care.
I have had Cyber Knife one time with Dr. Adler at Stanford who is actually the creator of the Cyber Knife. My treatment lasted one day, and my only side effects were a bit of fatigue and nausea for 1 week. The tumor was located in my upper C spine and visibly stopped growing at my 6 month follow-up MRI. This time I will be treated in Vista by my own neurologist, Dr. Duma. He insists there are no ill side effects, and that my prior experience of fatigue and nausea were due to the stress and anxiety surrounding the process. The Cyber Knife website states that patients may experience minimal side effects for the first week or two. I am opting to believe I will feel perfectly fine, but do not think I am so weak as to have created my symptoms as a stress response the first time around. Regardless, the possibility of being a bit tired for a week is nothing compared to the fears I would be facing if I was having regular invasive surgery. It amazes me that just 15 years ago my Mom had no options, and today I may have 3 tumors treated in a day, 2 of which are only being treated "just because we may as well while we are there!" Without radiosurgery I would have had at least 3 or 4 brain surgeries by now, and am not sure my body would have even been able to handle that. If Dr. Duma decides to radiate all 3 of my spine tumors, I will not have a single active tumor in my body!
I feel so blessed and grateful to have these treatment options available to me and to be under such great care. I only wish all people with NF2 were able to recieve such a high level of patient care, and pray for the day in which we truly have universal health care.
Thursday, April 9, 2009
MRI Results!
Yesterday Paul and I headed to Hoag Hospital in Newport Beach for a check up with my favorite neurologist. We slowly inched down the freeway, passing a van crumbled on the side of the highway while a big rig sat nearby unscathed. I tried to forget the images my eyes had briefly absorbed when I checked the MRI disk on my computer to be sure it held all the correct exams. I pushed the anxiety away and left it on the highway with the crumbled van...
We were greeted by a new nurse who was so friendly I was immediately at ease. He asked questions about my deafness I had actually never considered before. It was refreshing to meet an inquisitive nurse rather than being shoved down the cattle line. He is a runner as well so of course there was an immedaite warmth to our conversation, a shared knowledge of the intimate moments fighting the pavement.
Dr. Duma came in and we got down to business...
I have had 5 tumors radiated with Gamma Knife at different times over the last 7 years. He said all are still smaller than when they were treated, none are growing back. I have no new tumors in my brain, and as he said, my brain looks fantastic.
My C spine and T spine have no change. I have 2 small tumors in the T spine which when compared with a scan in late 2006 show no change since then. The main one is at T12-L1 and is 17mm.
My L spine has 1 tumor at L 3-4 which after measuring he realized has grown a tiny bit and is 11mm. That is the only growth I have had in 2 years, and 2 years ago it was about 7mm.
My Grandma, Mom, and I all followed the same tumor history, which doctors say is impossible, but tell that to our MRIs. We all present with a Tspine tumor pre-puberty, and vestibular schwannoma (VS) in our mid teens, followed by a LOT of spine tumors throughout our 20s. My Mom and Grandma both had so many brain tumors grow in their 30's they became uncountable and died about age 40. I am the first one to manage to slow down any growth at all, beginning with the fact that in 2 years I have not had 1 new spine or brain tumor develop. My neurologist said that obviously "something is working," and agrees I can continue on Bio30. Of course he cannot actually confirm the efficacy of Bio30, being that this "trial" is self administered and has too many variables, such as the fact that I am not pubescent, pregnant, lactating, or on birth control for the first time since I was 14.
The tumor in my L spine that has grown a tiny bit is candidate for Cyber Knife now, but if it grows even a tiny bit more it will be too large to treat, so I am opting to have it treated with Cyber Knife now and avoid having an unavoidable surgery 3 years down the road. Dr. Duma said if it is going to be treated with CK it needs to be done now, so we are starting the insurance process. I asked if while he was in there he could get the other 2 small ones, and he agreed that is a good idea but needs to discuss it with his team and will let me know. If in fact he is able to treat all 3, and the CK is a success, which I have no doubt it will be in Dr. Duma's capable hands, then for the first time in years I will not have any active growing tumors! I am not even sure how that would feel. I am constantly blocking out the ominous drum beat of approaching death, and to finally outrun it if only momentarily would be amazing.
I also asked him about all of these trial drugs we are reading about so much in the news. He has "tumor board" today with his team, and is going to specifically begin a dialogue about cancer drugs and NF2 with his Neuro Oncologists. At this point, being that I am doing so well, he said that any form of chemo would be more detrimental to my health then the actual disease. He is still going to look into it, just so I know my options in the future if need be.
I plan to get the CyberKnife treatment out of the way and just keep running! Paul thought it was ridiculous that my only concern was if I could continue to run, but the ability to run is the standard I hold my health to. I plan to run as long as I am able, and if the time comes when I cannot then I will cheer for those who can!
*I will explain CyberKnife tomorrow*
We were greeted by a new nurse who was so friendly I was immediately at ease. He asked questions about my deafness I had actually never considered before. It was refreshing to meet an inquisitive nurse rather than being shoved down the cattle line. He is a runner as well so of course there was an immedaite warmth to our conversation, a shared knowledge of the intimate moments fighting the pavement.
Dr. Duma came in and we got down to business...
I have had 5 tumors radiated with Gamma Knife at different times over the last 7 years. He said all are still smaller than when they were treated, none are growing back. I have no new tumors in my brain, and as he said, my brain looks fantastic.
My C spine and T spine have no change. I have 2 small tumors in the T spine which when compared with a scan in late 2006 show no change since then. The main one is at T12-L1 and is 17mm.
My L spine has 1 tumor at L 3-4 which after measuring he realized has grown a tiny bit and is 11mm. That is the only growth I have had in 2 years, and 2 years ago it was about 7mm.
My Grandma, Mom, and I all followed the same tumor history, which doctors say is impossible, but tell that to our MRIs. We all present with a Tspine tumor pre-puberty, and vestibular schwannoma (VS) in our mid teens, followed by a LOT of spine tumors throughout our 20s. My Mom and Grandma both had so many brain tumors grow in their 30's they became uncountable and died about age 40. I am the first one to manage to slow down any growth at all, beginning with the fact that in 2 years I have not had 1 new spine or brain tumor develop. My neurologist said that obviously "something is working," and agrees I can continue on Bio30. Of course he cannot actually confirm the efficacy of Bio30, being that this "trial" is self administered and has too many variables, such as the fact that I am not pubescent, pregnant, lactating, or on birth control for the first time since I was 14.
The tumor in my L spine that has grown a tiny bit is candidate for Cyber Knife now, but if it grows even a tiny bit more it will be too large to treat, so I am opting to have it treated with Cyber Knife now and avoid having an unavoidable surgery 3 years down the road. Dr. Duma said if it is going to be treated with CK it needs to be done now, so we are starting the insurance process. I asked if while he was in there he could get the other 2 small ones, and he agreed that is a good idea but needs to discuss it with his team and will let me know. If in fact he is able to treat all 3, and the CK is a success, which I have no doubt it will be in Dr. Duma's capable hands, then for the first time in years I will not have any active growing tumors! I am not even sure how that would feel. I am constantly blocking out the ominous drum beat of approaching death, and to finally outrun it if only momentarily would be amazing.
I also asked him about all of these trial drugs we are reading about so much in the news. He has "tumor board" today with his team, and is going to specifically begin a dialogue about cancer drugs and NF2 with his Neuro Oncologists. At this point, being that I am doing so well, he said that any form of chemo would be more detrimental to my health then the actual disease. He is still going to look into it, just so I know my options in the future if need be.
I plan to get the CyberKnife treatment out of the way and just keep running! Paul thought it was ridiculous that my only concern was if I could continue to run, but the ability to run is the standard I hold my health to. I plan to run as long as I am able, and if the time comes when I cannot then I will cheer for those who can!
*I will explain CyberKnife tomorrow*
Tuesday, April 7, 2009
MRI Dreams
It's 8 am and I just woke up, have been asleep since 4 pm yesterday. My online mommy friends comment how lucky I am and I murmur a smile as the grogginess fogs my thoughts. My body feels slow, like a grape falling through not quite set jello. I forced myself to run yesterday, and my feet carried me across hot pavement until I doubled over the bright green spring grass, wretching the last bit of home made pumpkin bread unsettled by my awkward gait. I took a swish of water and kept going, forcing my eyes to ignore the hot burning rays of sun creating criss cross patterns on the sidewalk between the shadows of leaves. I ran straight to the gym and went through all the usual motions and repetitions, 3 sets of 12 on every machine I have figured out, yoga, more sit ups, and finished just as Paul pulled up in the van. I plopped down inside, sweaty, out of breath, and nodded off on the 3 mile drive that felt so far just an hour ago. Just a quick shower later and I found myself in the MRI room. Has it been 6 months already, or have the last 6 been a dream and I have never left to begin with? 2 muscle relaxers later that MRI bed is like a womb, I floated in and out of consciousness until finally I emerged and walked back out into the harsh light, again into the van and whisked away home. Did I ever leave the van or was the MRI a dream? I tried to humor the kids, asking questions about their day, only to find myself sent to bed and falling into a deep sleep. I woke suddenly and it was pitch black, it couldn't possibly be 2am? I tossed and turned the remainder of the night, finally rising as the sun creeped through my blinds and tossed slivers of warmth across my pillow. How can I be so tired when I have been dreaming since 12pm yesterday? Now I have to go act as if I am fully present and get through another day, Mica smiles will help, and JT hugs when I get him from school. MRI results later this week, and then I can pretend to be whole for an entire 6 months...
Friday, January 23, 2009
JT's MRIs are done!
Today, in the early hours of dawn as Paul left for work, my babies both crept into our bed and conformed their little bodies to my warmth. As I stirred gently from my sleep I wrapped my arms tightly around each of them and breathed a sigh of relief as I settled in for my favorite part of the day. Today I can walk around without a vice on my chest, and I can look at the rainy sky but see hope, because yesterday JT's MRIs came back clear!
JT checked into St. Joseph's yesterday around 8am, then went through a barage of paperwork and questions. He was so brave, teasing the nurses and pretending to be asleep! Finally at 10am I carried him back to the MRI room, where the anesthesiologist gave him gas and he drifted off to sleep. His little eyebrows were pursed with worry, and I masked my own fear as the nurse ushered me from the room. An hour later I sat in recovery holding him as he twitched and fought his way back from the imposed darkness. In years past this was the worst moment, he would wake in confusion and completely hysterical as we held him down. This year after about a half an hour of rocking his tiny limp body he gradually lifted his head up and peeked out at me, and with a sideways little smile he let me know he was awake! At first he was wobbly, and didn't understand why he couldn't walk. So Tish and I loaded him and hospital monkey in a huge wheelchair and wheeled him over to the Cancer Center for his neurological exam. At some point the last of the anesthesia cleared and he happily informed us he could walk and discarded the wheelchair. Dr. Loudon's PA spent at least a half an hour with JT, examining him thoroughly and even playing Guitar Hero on JT's DS! The exam was completely unremarkable, JT's vision in his bad eye has even improved a bit. Other than that ongoing issue JT is completely healthy, and will be seen again next year. Next month his speech, hearing, and vision will be re-evaluated, but these tests are mostly for progressive purposes.
JT is at school running and playing with the other children, no one doubts he is the same, and I only hope he can hold on to that illusion a bit longer.
JT checked into St. Joseph's yesterday around 8am, then went through a barage of paperwork and questions. He was so brave, teasing the nurses and pretending to be asleep! Finally at 10am I carried him back to the MRI room, where the anesthesiologist gave him gas and he drifted off to sleep. His little eyebrows were pursed with worry, and I masked my own fear as the nurse ushered me from the room. An hour later I sat in recovery holding him as he twitched and fought his way back from the imposed darkness. In years past this was the worst moment, he would wake in confusion and completely hysterical as we held him down. This year after about a half an hour of rocking his tiny limp body he gradually lifted his head up and peeked out at me, and with a sideways little smile he let me know he was awake! At first he was wobbly, and didn't understand why he couldn't walk. So Tish and I loaded him and hospital monkey in a huge wheelchair and wheeled him over to the Cancer Center for his neurological exam. At some point the last of the anesthesia cleared and he happily informed us he could walk and discarded the wheelchair. Dr. Loudon's PA spent at least a half an hour with JT, examining him thoroughly and even playing Guitar Hero on JT's DS! The exam was completely unremarkable, JT's vision in his bad eye has even improved a bit. Other than that ongoing issue JT is completely healthy, and will be seen again next year. Next month his speech, hearing, and vision will be re-evaluated, but these tests are mostly for progressive purposes.
JT is at school running and playing with the other children, no one doubts he is the same, and I only hope he can hold on to that illusion a bit longer.
Wednesday, January 21, 2009
The night before...
It is bedtime for the babies at 8 pm, like every other night in our home. Tonight is different though, tonight JT knows he will not be in school tomorrow. He will be hooked up to an IV with a child-size IV stand at St. Joseph's pavilion being put to sleep for MRIs of his brain and spinal cord. I will sit in the waiting room and read, pretending like I am well-adjusted to this entire ordeal being that I have been living it for the last 25 years. This time though, that is my baby in there. It is my baby who cannot see out of one eye. It is my baby who has been having problems with motor control and hearing. It is my baby who will scream and cry helpless tears when they stab him with little needles. It is my baby who will be limp and unconscious as he is rolled on a gurney to recovery, where I can only hold him tight as his body shudders against the anesthesia. Over the last few weeks JT has asked several morbid questions. He asked me if an elderly family member was going to die. He told me when I died, he would miss me. He told me when he is an old man, he does not want me to die. He expressed a lot for a tiny 6 year old boy. Just now as I tucked him in to my bed his eyes welled up with tears that he was obviously attempting to choke back. I asked him what was wrong and they spilled over onto what were once precious chubby baby cheeks. He said I don't want to be knocked out Mommy, I don't want them to look at my brain. I smiled for him, put on the brave face that all parents must put on at times, and stroked his hair as I soothed his fears with calming words. I told him it would be fast, Grantish and I would be right there with him the entire time, and he could have a popsicle. My little man is no longer fooled by such platitudes, he has come to understand a tiny piece of his reality, and I could only be proud as he wiped his tears and pretended to feel better for MY sake. What an amazing child he is. Right now he sleeps, and I know his dreams are probably shadowed by anxiety. I miss his innocence and wish it were still easy to bribe him with cookies and ice cream. It seems my little man is already growing up, and neither of us has a choice.
Wednesday, December 24, 2008
I'm leaving my bad luck in 2008!
I wish I was here updating everyone on the results of JT's MRIs. Unfortunately during his physical the doctor found that his airways are swollen from his asthma, and it would not be safe for him to be put under general anesthesia for the MRI. This news would have been only a slight annoyance if earlier that same day I hadn't:
*Left my keys in Paul's car, and had to impose on our friends Amy and Bridget to drive us to the appointment and watch Mica since I had NO carseat!
*Arrived at the doctor's office, only to find they had canceled JT's physical appointment under the false assumption it had to be done by an MD, not the PA on staff at the moment.
*Got dropped off back at home, called the MRI place, found that yes in fact the physical could be done by a PA, called the doctor back, and had the rude and unhelpful nurse tell me that no, they would not squeeze him back in even though the entire mess was their fault! Excuse my language, but BITCH!
*Made an appointment at a local clinic, had JTs godmother Miena drop everything, come get us, drive to the clinic and wait 3 hours past our appointment time to finally be told....
For those of you who don't know, besides having NF2 and being visually challenged, JT has asthma and is allergic to eggs, milk, and dustmites. His teacher thinks he has ADHD, and he has motor skills problems (he is 6 and still can't swing correctly, and has problems writing)... but he is so damn smart and started reading at age 4, and would literally give the shirt off his back to a stranger. He is the sweetest little thing, and all of these obstacles will only serve to make him stronger, I will personally see to that myself!
Also, by the way, I came home to a fried network card and am typing this out on my dinosaur of a laptop. I can't front like I understand anything more than buying shoes on Zappos and posting pictures on Meetup, as evidenced by the fact that I used asterisks as bulletin points and have no idea how to do a HTML "list." I had my friend's husband come help me out and he was kind enough to keep me going on my old laptop while he gets me a network card.
Now I am off to play Spongebob Operation with Mica...
Hope everyone has a wonderful holiday and a hope New Years!!
*Left my keys in Paul's car, and had to impose on our friends Amy and Bridget to drive us to the appointment and watch Mica since I had NO carseat!
*Arrived at the doctor's office, only to find they had canceled JT's physical appointment under the false assumption it had to be done by an MD, not the PA on staff at the moment.
*Got dropped off back at home, called the MRI place, found that yes in fact the physical could be done by a PA, called the doctor back, and had the rude and unhelpful nurse tell me that no, they would not squeeze him back in even though the entire mess was their fault! Excuse my language, but BITCH!
*Made an appointment at a local clinic, had JTs godmother Miena drop everything, come get us, drive to the clinic and wait 3 hours past our appointment time to finally be told....
No, JT cannot have MRIs tomorrow!
For those of you who don't know, besides having NF2 and being visually challenged, JT has asthma and is allergic to eggs, milk, and dustmites. His teacher thinks he has ADHD, and he has motor skills problems (he is 6 and still can't swing correctly, and has problems writing)... but he is so damn smart and started reading at age 4, and would literally give the shirt off his back to a stranger. He is the sweetest little thing, and all of these obstacles will only serve to make him stronger, I will personally see to that myself!
Also, by the way, I came home to a fried network card and am typing this out on my dinosaur of a laptop. I can't front like I understand anything more than buying shoes on Zappos and posting pictures on Meetup, as evidenced by the fact that I used asterisks as bulletin points and have no idea how to do a HTML "list." I had my friend's husband come help me out and he was kind enough to keep me going on my old laptop while he gets me a network card.
Now I am off to play Spongebob Operation with Mica...
Hope everyone has a wonderful holiday and a hope New Years!!
Wednesday, October 8, 2008
I still do not have MRI results!!!
Every 6 months I have my brain, thoracic, cervical and lumbar spine all scanned with and without contrast. The scans are then supposed to be sent to my neurologist, and the radiology reports are supposed to compare the current tumor measurements to past reports to find if I have had any growth. About a week after the exams I pick up my own copy of all 4 radiology reports for my own files. This all sounds SO simple doesn't it? Then why... why for the love of GOD, is it so hard for professional MRI facilities to follow this protocol?
I used to have my MRIs done at Millenium Imaging here in Rancho Cucamonga. They would burn me a CD with all my scans to take with me to my neurologist appointment. In August of 2007 they sent me all the way to Newport Beach to take up my doctor's time with a blank CD! I was so irritated! Then I go back, and they give me a CD with only the brain scan! It took them 2 weeks to finally just send a correct CD with all scans to the doctor. The next time I needed MRIs in February of 2008 I went back, but I spoke to the office manager and specifically reminded them what needed to be done. AGAIN they sent an incomplete CD to the doctor. This was after I asked them to open the files and double check the CD before I left their office. They assured me all of the scans were on the CD, but they weren't!
So this time I went to Grove Diagnostics in Upland to have my MRIs. I told the MRI tech about all of the problems at Millenium Imaging, and she couldn't believe them either. Over 2 days I had all my exams done. Before I left I asked the tech to please make sure my old scans were sent over from Millenium Imaging so the radiologist could do a comparison in his report. This is completely standard protocol. A week later I speak to my neurologist's nurse, her office only received my thoracic and lumbar scans! Seriously!? Again!? I just couldn't believe it. I called Grove and they said they would send all of the scans immediately. I spoke to the nurse and she said she recieved more scans, but still didn't have the brain with contrast! So I go down to Grove myself and they are making this all kinds of difficult, supposedly they will contact the Doctor and send everything that needs to be sent. Why did I have to force them to do that to begin with? On top of it, I got my radiology reports, and the radiologist did not do a comparison! Millenium Imaging only sent over my brain scan. I went to Millenium Imaging and signed a release and hopefully now it will all get sorted out.
Why does it have to be so convoluted and difficult? As hard as it is to find a job, how do these people find jobs? You know you see them walking around with their jaw hanging open, eyes a bit glazed, and you just think who freaking hired these inept people? When handling people's medical information you would think they would be a bit more careful. I mean don't worry, no big deal if I don't know how many brain tumors I have growing right?
A lot of people have been asking me for an update and I will post here as soon as all of my scans are sent to my neurologist and reviewed.
I used to have my MRIs done at Millenium Imaging here in Rancho Cucamonga. They would burn me a CD with all my scans to take with me to my neurologist appointment. In August of 2007 they sent me all the way to Newport Beach to take up my doctor's time with a blank CD! I was so irritated! Then I go back, and they give me a CD with only the brain scan! It took them 2 weeks to finally just send a correct CD with all scans to the doctor. The next time I needed MRIs in February of 2008 I went back, but I spoke to the office manager and specifically reminded them what needed to be done. AGAIN they sent an incomplete CD to the doctor. This was after I asked them to open the files and double check the CD before I left their office. They assured me all of the scans were on the CD, but they weren't!
So this time I went to Grove Diagnostics in Upland to have my MRIs. I told the MRI tech about all of the problems at Millenium Imaging, and she couldn't believe them either. Over 2 days I had all my exams done. Before I left I asked the tech to please make sure my old scans were sent over from Millenium Imaging so the radiologist could do a comparison in his report. This is completely standard protocol. A week later I speak to my neurologist's nurse, her office only received my thoracic and lumbar scans! Seriously!? Again!? I just couldn't believe it. I called Grove and they said they would send all of the scans immediately. I spoke to the nurse and she said she recieved more scans, but still didn't have the brain with contrast! So I go down to Grove myself and they are making this all kinds of difficult, supposedly they will contact the Doctor and send everything that needs to be sent. Why did I have to force them to do that to begin with? On top of it, I got my radiology reports, and the radiologist did not do a comparison! Millenium Imaging only sent over my brain scan. I went to Millenium Imaging and signed a release and hopefully now it will all get sorted out.
Why does it have to be so convoluted and difficult? As hard as it is to find a job, how do these people find jobs? You know you see them walking around with their jaw hanging open, eyes a bit glazed, and you just think who freaking hired these inept people? When handling people's medical information you would think they would be a bit more careful. I mean don't worry, no big deal if I don't know how many brain tumors I have growing right?
A lot of people have been asking me for an update and I will post here as soon as all of my scans are sent to my neurologist and reviewed.
Friday, September 12, 2008
Maybe I should go to medical school...
Yesterday I saw a gynecologist about my ovarian cysts. I have had a lot of pain where no woman should ever have pain, and an ultrasound turned up ovarian cysts. My neurologist said it could possibly be related to NF2, and more then a few women on the Crew have had similar problems. I waited a month to see this doctor. She walked into the room and told me everything was normal. I told her no, I have ovarian cysts. She said yes, that that was normal. I explained to her I have NF2, and that I was experiencing severe pain, and still she refused to do anything. I asked her what I should do for the pain, and she suggested pain medication. I am going to save my rant about doctors irresponsibly prescribing addictive painpills to patients when they are too lazy or indifferent to an ailment. Suffice it to say I very clearly explained to her I was not looking for a pat on the back or a sympathy prescription. I told her pain down "there" is not normal. She said yes, it is. I understand that cysts are not a huge deal, but given my descriptions of pain and my medical history she could have at least suggested monitoring the growths in a few months, the only thing she would write, repeatedly, was "There is nothing I can do." After driving all the way to Pomona and sitting in a dingy waiting room for an hour with a cranky 2 year old, she was wasting my time with this nonsense? I looked her right in the eye as I stood and told her I was going back to my GP for a "real referral." Why do people who have no urge to help people become doctors?
Today I had my lumbar spine and neck MRIs. I had a really awesome tech who was amazingly friendly! I always have to deal with supposed professionals who eye me cautiously because I am deaf but can speak as a hearing person. What reason could I possibly have for pretending to be deaf? The girl took me in and was ready with paper and a pen, being very thorough and making sure I was comfortable. After my MRIs I asked her to be sure to request my previous MRIs from the last MRI place I had been (a whole 'nother story!) so that they could compare my tumors, she chirped happily that it was already done! You have no idea how amazing it is to come across somebody in the medical field who actually acts without being instructed, it was great to be the patient and feel cared for!
I will have the second half of my MRIs next Thursday and then wait patiently for my neurologist to review my scans. Pray that I have had no growth and the Propolis is working! I don't know how to respond if it isn't... I spent the rest of today running errands but feeling very lethargic, MRIs are not painful or even intimidating to me in any way, but somehow they always leech all of my energy. I stumbled through the day with the kids and am looking forward to Paul getting home momentarily and sitting down to a big bowl of spaghetti squash, and definitely a glass of wine!
Today I had my lumbar spine and neck MRIs. I had a really awesome tech who was amazingly friendly! I always have to deal with supposed professionals who eye me cautiously because I am deaf but can speak as a hearing person. What reason could I possibly have for pretending to be deaf? The girl took me in and was ready with paper and a pen, being very thorough and making sure I was comfortable. After my MRIs I asked her to be sure to request my previous MRIs from the last MRI place I had been (a whole 'nother story!) so that they could compare my tumors, she chirped happily that it was already done! You have no idea how amazing it is to come across somebody in the medical field who actually acts without being instructed, it was great to be the patient and feel cared for!
I will have the second half of my MRIs next Thursday and then wait patiently for my neurologist to review my scans. Pray that I have had no growth and the Propolis is working! I don't know how to respond if it isn't... I spent the rest of today running errands but feeling very lethargic, MRIs are not painful or even intimidating to me in any way, but somehow they always leech all of my energy. I stumbled through the day with the kids and am looking forward to Paul getting home momentarily and sitting down to a big bowl of spaghetti squash, and definitely a glass of wine!
Subscribe to:
Posts (Atom)
