dimntd (Di) (![[info]](http://l-stat.livejournal.com/img/userinfo.gif){kind=small} dimntd) wrote,@ 2007-11-23 01:00:00 |
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Posts from my old blog
23 November 2007 I had a weird symptom. I was sitting at the table yesterday afternoon and I had the physical sensation I was falling fast and my brain blanked out. There are times when my fatigue and pain levels are high I have the physical sensation of an elevator going down and figured it was the fatigue. Yesterday it felt out of control like a free fall it was odd and has never happened before. I was not daydreaming nor was I scared during the occurrence. It was slightly disorienting.
At my doctor?s appointment she did not offer any sort of pain management. I have given up asking. I am going to schedule an appointment for a pain management center.
21 November 2007 Happy Thanksgiving Y?all!!! - I saw my primary doctor today as usual the appointment was not what it should have been. She is all for anything that takes the pressure off of her like the tethered cord surgery. She gave me a prescription for Physical Therapy (PT). When I spoke to the receptionist regarding the prescriptions from TCI she told me to make the appointments and to go to the medical supply store I always use. They could have told me that when they left me a message 2 weeks ago or at least when I made the appointment.
The police report for the car accident is still not ready. Apparently it was not approved I have no idea by whom or why it needs approval. Mom talked to a Special Education lawyer she knows and got the name of a ?barracuda? attorney who handles MVA cases.
I received an email from Senator Casey?s office that I will be contacted by the Constituent Services Advocate. I suspect it will be an interesting conversation.
19 November 2007 I was taking Ibuprofen for 2 weeks which was causing nasty stomach pain at a 7/10. I stopped taking the ibuprofen and the Fioricet because it was causing the same reaction. I am allergic to aspirin and knew it was likely I would begin to have problems with the Ibuprofen. The bad news I have nothing I can take for pain. Acetaminophen or Tylenol is out I tried it my stomach hurt. I figured acetaminophen was the ingredient in the Fioricet that was causing the problems.
After I got off the phone with the Medicaid provider I wrote a letter. The letter was sent to all of my representatives both state & federal. I asked them to follow my SSI/SSD case. I also asked if there was a way to ensure that anyone with a previous DUI who causes an accident in automatically tested for DUI. Then I asked how am I to be in the best health possible if I cannot find a decent primary physician. I may not get anywhere with the email or maybe I will receive a response and/or phone call.
The doctor?s office called I have an appointment on Wednesday November 21st. I have several things I need from her, I wish she and her staff were dependable. I am not going alone and hope I actually get somewhere.
Mom received the check from the insurance company for her car. She went out and bought a new car. My dad bought a used car his car had some serious mileage on it and needed a new transmission. He found the same car with a third the mileage.
16 November 2007 My head is killing me. I have a pressure headache which is very sharp beginning at the back of my head at the top of my neck. It radiates up and over my head to behind my eyes and down to between my shoulder blades. I?m sure the tears this afternoon did not help. I have a migraine radiating from the right temple and enveloping the entire left hemisphere of my head. The hotspot headache is sharp and solid and the hotspot is very warm. I have no idea what type it is but the hotspot has been there just to the right of the midline of the crown of my head since a 21 day headache in 1989. The right migraine type pain I?ve had since the MVA on 10/22/2007 starts at my left temple circles up and around my ear to the bump behind the earlobe. I am severely nauseous and very close to retching I recognize the jaw twinge. Dr. Bolognese of The Chiari Institute told me to call if I am still having MVA symptoms in a month or 11/22/2007 the 11th Anniversary of the last MVA.
I received a call from the SSA they never received the appeal form I filled out online. I saved most of what I had written. The SSA asked me to fill out the form. Reading and writing are very painful. The type is too small on most forms, most paper is bright and glare and I do not get along. On the computer I have control of the brightness of the screen, color of the background and fonts, as well as the size of the font. I?m doing the form on the computer.
I still have not gotten a hold of my primary doctor?s office to schedule an appointment. I spent a bit in tears with the Medicaid provider trying to make them understand the problem I have been having. I ended up speaking to the nurse in the Special Needs Unit, we spoke twice before about the same issues over a month ago. Unfortunately there is nothing they can do except to point me to their inaccurate provider list.
9 November 2007 I called my GP twice and got voice mail both times. They called back and missed me in between the two calls. I can not always hear the phone.
Dr. Mora said something interesting and I cannot remember what. It will come to me when I am in the middle of something else and have nothing to write it down nearby. Dr. Bolognese told me my brain stem was too long because of the tethered cord.
I feel like a 400 pound critter has camped out on the top of my head. My neck is really unhappy and my lower back is saying things I don?t appreciate
7 November 2007 TCI - I saw Dr. Mora on Monday 11/5/2007. He is a Neurologist he said I probably had Tethered Cord Syndrome based on symptoms and the exam. He also said I have Bilateral Carpal Tunnel Syndrome which I was aware of and Cubital Tunnel Syndrome which I was not. He is recommending blood work for compressive neuropathies. He said I had Bilateral Occipital Neuralgia.I saw Dr. Bolognese on Tuesday 11/6/2007, he is a Neurosurgeon and very nice. He explained that I have an Occult Tethered Cord (TC) and all the gory details. I have a very thin syrinx which he said is a verification of the TC. I also have Cranial Settling, Craniocervical Instability (CCI) & Ehlers-Danlos Syndrome (EDS) because I am double jointed. He confirmed that I have been having pressure headaches. The CCI was caused by multiple head & neck injuries since childhood though it is not severe. I am a bobblehead with both vertical and horizontal instability. He is recommending Invasive Cervical Traction (ICT) and then TC surgery the next day. He said he believed the TC surgery will most likely allow the cerebellar tonsils to recede back into the skull. Depending on the results of the ICT I may need Craniocervical fusion though he did not think that was the case. He also said that if the tonsils did not recede I would need the Chiari decompression surgery.
Dr. Bolognese gave me prescriptions for:
Aspen Collar for riding in the car
CTO jacket for really bad days
Pronex traction device
Physical Therapy ? strengthening exercises of my neck muscles
Inversion Therapy
Echocardiogram
I have to call my Primary doctor and nag her into doing her job. Her office gets to do draw the blood. I?m also not sure if prescriptions from a doctor in NY will e good enough for Medicaid, she may need to write them. I am faxing her prescriptions and the note from the Neurologist.
Now I have to find a way to pay for the surgery since The Chiari Institute does not take out of state Medicaid. Not that I believe Medicaid is going to be willing to pay. Nor do I believe they will reimburse us if we pay.
4 November 2007 I am in Great Neck, New York. I have to be at The Chiari Institute tomorrow at 11am to see the nurse, then I have the Neurological evaluation at 3pm.
2 November 2007 My leg orthopedist said I bruised the knee and there was still quite a bit of inflammation. He said stop using the immobilizer. I see him again in 2 weeks.
We leave for TCI on Sunday. I am hoping to have all my questions answered I have a rather long list. I?m bringing all of my films and the reports.
I received a form from the SSA asking for the information which I included in the appeal. I am sending the reports from all of the diagnostics I had for TCI plus the stuff from the ER after the MVA.
30 October 2007 Feeling Much Better - The pity party is over. I cannot say I am feeling optimistic. I am no longer only seeing negatives. I am 5 months into Seasonal Affective Disorder (SAD) season.
I see the Orthopedist tomorrow about my knee. I have more range of motion I check each day and any time I have it out of the immobilizer I try to move it a bit. I can walk on it without the immobilizer though I cannot bear full weight on the knee and it hurts after a few minutes. There is an odd indentation diagonally across the kneecap that was not there prior to the MVA.
I am feeling a bit more positive about TCI as well. I?m certainly not expecting miracles. I am able to push back the thought they will turn me away questions unanswered. I will be happy if they can tell me what is going on with my head & neck.
27 October 2007 Today I woke up with pain and a nasty sharp twinge on the right side of my lower back. I get zapped with most movement. My right knee feels worse there is a sharp pain under the knee cap. It feels like there is a large cut that is bleeding the area is tender to the touch with very sharp pain. My entire spine hurts, it is very achy. There is pain and burning between my shoulder blades, it was painful after the accident. They only did a CT of my neck and head. The back of my head and neck hurt & burn. The place where my right shoulder and neck meet has been throbbing on and off all day. The right side of my head has been hurting since the accident. I have a migraine on the left side of my head which is off the charts. My left eye feels swollen. I've spent most of today on a heating pad which has done little good. I have to get up to take a Fioricet with codeine because I have to sit or stand for 30 minutes after taking it. I was hoping trying the Fioricet after not taking it for several weeks would do some good for the migraine, no such luck. It does relax me a bit though there seems to be no change in pain levels at all. I wish I had a doctor who would prescribe pain medications. Meditation only works so well.
I see the orthopedist on the 31st it seems like forever until the appointment. I have cancelled the other neurologist and have chosen to rely upon TCI to do a thorough neurological evaluation.
I am vacillating between a major pity party and homicidal thoughts. It was the other drive that did a bad thing and I am being punished. If I end up with daily migraines on both sides of my head because of this clown they may have to put him in jail to protect him.
25 October 2007 Day 3 post-MVA - I called the Neurologist office and made an appointment for the 26th of November. I am on the cancellation list. I am waiting on a call back from the Orthopedist office to make an appointment. I hope they call soon. I made an appointment with my primary doc for November7th. My appointment at The Chiari Institute (TCI) is November 5th & 6th. I am going to be severely out of it for my doctor appointment on the 7th.
My knee is really bad today it is protesting any weight bearing with the immobilizer. I was previously able to bear minimal weight without much pain. The back of my head and neck are very painful. My neck feels as if it is being compressed downward. My shoulders feel as if they are being pushed down as well. My entire spine is in spasm thought it is not as intense as yesterday.
DPW wants proof of my SSA appeal by November 15th or I lose my benefits. I called the number I had for the SSA and by the time I shuffled through the waiting and transfers to the right number the office was closed. The message line was busy. Ugh. I will try again tomorrow.
23 October 2007 Day 1 post-MVA - I woke up today with places I didn't know could hurt. My chin is bruised from the hard cervical collar. My scalp is sore from them ripping the duct tape out of my hair at the ER. I have a small abrasion on my stomach. My forehead is a bit pink but no major rash like my arms. My torso feels like I am wearing a cast iron corset that is a size to small. My entire spine is is in spasm especially on the right side. We have the insurance information so I can call tomorrow to make appointments with the orthopedist and neurologist. My aunt told me I should be grateful I was sobbing when they moved my knee in the ER because it made a loud grinding noise. I am glad I did not hear it I was working hard enough to deal with the nausea caused by the pain.
Mom spoke to the police officer who was at the scene of our MVA. The other driver told the officer that we were blocking him by turning left into the gas station at the corner. Mom gave him all of the details including the fact that we were past the entrance of the gas station wating to turn left at the intersection. There were many witnesses it was the beginning of rush time for traffic.
22 October 2007 I need a vacation! - Today at 1:30pm I had a 3D CT scan of my head & a 3D CTA of my neck. The scans themselves were not bad. The IV for the contrast sucked. I have very small veins. First they tried the right arm which was not cooperating and she gave up and put gauze and tape on my arm. I am allergic to adhesives so I now have a rash and torn, burning skin on my right arm. The left arm was a success for the IV though it was very painful. The rash on the left arm was not as bad they used paper tape. I left the Radiology Department at 3pm.
I went to the bathroom and washed as much of the adhesive off as I could manage. I went outside onto a bench and began sobbing. I was emotionally fragile to begin with, both arms were burning, stinging and every time I am hurt during a testing procedure it feels like punishment. Mom found me and helped me to settle down some.
We decided to find food because I had not eaten since 6am. At approximately 3:30pm we had made it a few miles from the hospital and were stopped in a turning lane at a red light. I watched a car come through the intersection and move into the center lane, he was coming straight for us. He was looking directly at us and never slowed. The next thing I remember is seeing the air bag, smoke and the smell of something burning. I managed to force my door open despite its being stuck, adrenaline is an amazing substance. I moved to the side of the road and was sobbing again before sitting down. I was terrified I have so much going on with my head and neck. I also realized my right knee was severely painful and I was unable to move it, I have no idea how I managed to walk to the side of the road. I was barely able to speak to the police and EMT. I was put into a neck brace and laid onto a back board. My head was taped onto the board with duct tape even as upset as I was I was amazed by this. I told the EMT I was allergic to adhesives. The ride to the hospital was rough with my knee being so painful, Mom rode in the front of the ambulance she had chest pain.
At the hospital they sent Mom to the front to register us. I was moved into a room and onto a bed again my knee strongly protested. A nurse showed up and took my bp and pulse. Eventually Mom came back and a Physician's Assistant showed up. I was taken off the back board after a quick examination. Mom was having some chest pain and was taken for a chest x-ray. They also did a EKG on Mom just to be on the safe side. Mom would not let them put us in separate rooms. They did a urine test, it was my first experience with a bed pan and hopefully my last. I was there three and a half hours before they did a CT scan. I was told not to move my head but they let me move myself onto the CT machine, it makes no sense to me. The entire time I had duct tape stuck to my head and foam touching my face. I was then told the CT scan was normal. I wanted to say 'compared to what' though I know they meant compared to my earlier films normal is not a term I think of with my neck. The PA came in and asked if they x-rayed my knee, they had not and were supposed to immediately following the CT scan. They took off the tape which was awful my skin becomes gooey and tears because of the adhesives. I was given a shot for pain, probably dilaudid. They were trying to pull the duct tape from my hair, i told them to cut it hair grow back. Mom used lotion to try and get the remaining adhesive off of my forehead and arms they were stinging badly. I was put in a wheelchair and taken for knee x-rays. The pain med had kicked in enough that I was able to move my knee enough for the x-rays without severe pain. I was told my knee was not broken and put in an ace wrap and an immobilizer. We told them we had a wheelchair at home so no need for crutches. I cannot use crutches because of the carpal tunnel syndrome. We left the hospital at 10pm. I had spent 10 hours at the hospital and had not eaten in 16 hours. I was told I have a bruised knee & a cervical strain.
Mom's car probably did not survive the accident we expect it to be totaled. Mom has some abrasions from the air bag on her chin, neck & chest. She has a bruise from the seat belt. I have a seat belt bruise and a bruise under my chin from the neck brace. I slathered my forehead and arms with nutribiotic ointment they are stinging and burning. I have not looked in a mirror and have no wish to see the rash. Dad drove us home. Mom had my aunt pick up food which was there when we got home so we ate. I emailed everyone to let them know what had happened and to let them know we were in one piece. I went to bed around 11:30pm. My knee woke me up at 2am.
I faxed my primary doctor about the accident. I emailed the Chiari institute. Tomorrow we will call the insurance company to find out the name of the adjuster and other fun stuff. I will be making an appointment with my leg orthopedist to evaluate my knee. I also will be making an appointment to see the neurologist who I saw after the last MVA in 1996. He was very thorough in the testing he did and diagnosed the post-concussion syndrome and post-traumatic migraines.
I aksed my uncle who is a local police officer to let me know what happened to the idiot who hit us. He was practically elated and bouncing all over. Mom said he asked what happened, when Mom said you hit us he was apologetic. It seemed odd that he would not be aware considering he was looking right at us. He was not wearing a seat belt so he should be hurt. Frankly I hope the man needs a crane to get out of bed tomorrow. I hope the same of the idiot who ran a red light and hit me in 1996.
I had just finished my Social Security appeal last night but have not sent it out. I have to add the new information about the accident.
21 October 2007 I had a MRI of my Brain with cine & Cervical Spine on Saturday starting at 7:30am. They could not use the pulseox they used an EKG. I had the leads on maybe 15 minutes and I already looked like I was attacked by an octopus. I put ointment on the marks as soon as I got home. They will go away in a few days, I wish they didn't burn. I meditated and was able to control the itching and pain of lying flat for two and a half hours. I was grateful I did not begin to choke. After the MRI's I had X-rays of my Cervical Spine & Lumbar Spine.
Today I had the Thoracic & Lumbar MRI's also starting at 7:30am, only an hour and a half today. Meditation again kept me in one piece. I was unable to use a pillow for the Thoracic part. My neck and shoulders began to cramp fortunately I was able to turn it off.
I finished up my Social Security appeal. I wrote them a detailed letter. As I was writing I will never ride a horse again due to the Chiari I fell apart sobbing. I have managed to deal with all of the blows of the various medical conditions as 'just the way things are'. This feels too much like punishment. I have always held onto the idea of one day being involved with horses again. I have wanted to be a riding instructor and own stables since I was 10 years old. I am grieving a broken heart and know I will get past it at some point.
I've had too many negative and abusive doctor appointments. I try to keep my objectivity though it is hard not to be distrustful of doctors. The search for a new primary doctor is not helping. The doctors either don't take Medicaid or they don't take patients with so many medical conditions. I'm also dealing with the fear I cannot be helped by The Chiari Institute.
Tomorrow I have a CT-Scan & CTA of my neck at 1:30pm, they should be fairly fast.
18 October 2007 A Thought - I am dealing with getting all of the MRI's, CT-Scans & X-Rays I need for my appointment at The Chiari Institute (TCI) on November 5th & 6th. Saturday morning I will be having a MRI with CINE of my brain and a regular MRI of my cervical spine. After the MRI's I will be having X-Rays. Sunday morning I will be having MRI's of my thoracic & lumbar spine.
23 November 2007 I had a weird symptom. I was sitting at the table yesterday afternoon and I had the physical sensation I was falling fast and my brain blanked out. There are times when my fatigue and pain levels are high I have the physical sensation of an elevator going down and figured it was the fatigue. Yesterday it felt out of control like a free fall it was odd and has never happened before. I was not daydreaming nor was I scared during the occurrence. It was slightly disorienting.
At my doctor?s appointment she did not offer any sort of pain management. I have given up asking. I am going to schedule an appointment for a pain management center.
21 November 2007 Happy Thanksgiving Y?all!!! - I saw my primary doctor today as usual the appointment was not what it should have been. She is all for anything that takes the pressure off of her like the tethered cord surgery. She gave me a prescription for Physical Therapy (PT). When I spoke to the receptionist regarding the prescriptions from TCI she told me to make the appointments and to go to the medical supply store I always use. They could have told me that when they left me a message 2 weeks ago or at least when I made the appointment.
The police report for the car accident is still not ready. Apparently it was not approved I have no idea by whom or why it needs approval. Mom talked to a Special Education lawyer she knows and got the name of a ?barracuda? attorney who handles MVA cases.
I received an email from Senator Casey?s office that I will be contacted by the Constituent Services Advocate. I suspect it will be an interesting conversation.
19 November 2007 I was taking Ibuprofen for 2 weeks which was causing nasty stomach pain at a 7/10. I stopped taking the ibuprofen and the Fioricet because it was causing the same reaction. I am allergic to aspirin and knew it was likely I would begin to have problems with the Ibuprofen. The bad news I have nothing I can take for pain. Acetaminophen or Tylenol is out I tried it my stomach hurt. I figured acetaminophen was the ingredient in the Fioricet that was causing the problems.
After I got off the phone with the Medicaid provider I wrote a letter. The letter was sent to all of my representatives both state & federal. I asked them to follow my SSI/SSD case. I also asked if there was a way to ensure that anyone with a previous DUI who causes an accident in automatically tested for DUI. Then I asked how am I to be in the best health possible if I cannot find a decent primary physician. I may not get anywhere with the email or maybe I will receive a response and/or phone call.
The doctor?s office called I have an appointment on Wednesday November 21st. I have several things I need from her, I wish she and her staff were dependable. I am not going alone and hope I actually get somewhere.
Mom received the check from the insurance company for her car. She went out and bought a new car. My dad bought a used car his car had some serious mileage on it and needed a new transmission. He found the same car with a third the mileage.
16 November 2007 My head is killing me. I have a pressure headache which is very sharp beginning at the back of my head at the top of my neck. It radiates up and over my head to behind my eyes and down to between my shoulder blades. I?m sure the tears this afternoon did not help. I have a migraine radiating from the right temple and enveloping the entire left hemisphere of my head. The hotspot headache is sharp and solid and the hotspot is very warm. I have no idea what type it is but the hotspot has been there just to the right of the midline of the crown of my head since a 21 day headache in 1989. The right migraine type pain I?ve had since the MVA on 10/22/2007 starts at my left temple circles up and around my ear to the bump behind the earlobe. I am severely nauseous and very close to retching I recognize the jaw twinge. Dr. Bolognese of The Chiari Institute told me to call if I am still having MVA symptoms in a month or 11/22/2007 the 11th Anniversary of the last MVA.
I received a call from the SSA they never received the appeal form I filled out online. I saved most of what I had written. The SSA asked me to fill out the form. Reading and writing are very painful. The type is too small on most forms, most paper is bright and glare and I do not get along. On the computer I have control of the brightness of the screen, color of the background and fonts, as well as the size of the font. I?m doing the form on the computer.
I still have not gotten a hold of my primary doctor?s office to schedule an appointment. I spent a bit in tears with the Medicaid provider trying to make them understand the problem I have been having. I ended up speaking to the nurse in the Special Needs Unit, we spoke twice before about the same issues over a month ago. Unfortunately there is nothing they can do except to point me to their inaccurate provider list.
9 November 2007 I called my GP twice and got voice mail both times. They called back and missed me in between the two calls. I can not always hear the phone.
Dr. Mora said something interesting and I cannot remember what. It will come to me when I am in the middle of something else and have nothing to write it down nearby. Dr. Bolognese told me my brain stem was too long because of the tethered cord.
I feel like a 400 pound critter has camped out on the top of my head. My neck is really unhappy and my lower back is saying things I don?t appreciate
7 November 2007 TCI - I saw Dr. Mora on Monday 11/5/2007. He is a Neurologist he said I probably had Tethered Cord Syndrome based on symptoms and the exam. He also said I have Bilateral Carpal Tunnel Syndrome which I was aware of and Cubital Tunnel Syndrome which I was not. He is recommending blood work for compressive neuropathies. He said I had Bilateral Occipital Neuralgia.I saw Dr. Bolognese on Tuesday 11/6/2007, he is a Neurosurgeon and very nice. He explained that I have an Occult Tethered Cord (TC) and all the gory details. I have a very thin syrinx which he said is a verification of the TC. I also have Cranial Settling, Craniocervical Instability (CCI) & Ehlers-Danlos Syndrome (EDS) because I am double jointed. He confirmed that I have been having pressure headaches. The CCI was caused by multiple head & neck injuries since childhood though it is not severe. I am a bobblehead with both vertical and horizontal instability. He is recommending Invasive Cervical Traction (ICT) and then TC surgery the next day. He said he believed the TC surgery will most likely allow the cerebellar tonsils to recede back into the skull. Depending on the results of the ICT I may need Craniocervical fusion though he did not think that was the case. He also said that if the tonsils did not recede I would need the Chiari decompression surgery.
Dr. Bolognese gave me prescriptions for:
Aspen Collar for riding in the car
CTO jacket for really bad days
Pronex traction device
Physical Therapy ? strengthening exercises of my neck muscles
Inversion Therapy
Echocardiogram
I have to call my Primary doctor and nag her into doing her job. Her office gets to do draw the blood. I?m also not sure if prescriptions from a doctor in NY will e good enough for Medicaid, she may need to write them. I am faxing her prescriptions and the note from the Neurologist.
Now I have to find a way to pay for the surgery since The Chiari Institute does not take out of state Medicaid. Not that I believe Medicaid is going to be willing to pay. Nor do I believe they will reimburse us if we pay.
4 November 2007 I am in Great Neck, New York. I have to be at The Chiari Institute tomorrow at 11am to see the nurse, then I have the Neurological evaluation at 3pm.
2 November 2007 My leg orthopedist said I bruised the knee and there was still quite a bit of inflammation. He said stop using the immobilizer. I see him again in 2 weeks.
We leave for TCI on Sunday. I am hoping to have all my questions answered I have a rather long list. I?m bringing all of my films and the reports.
I received a form from the SSA asking for the information which I included in the appeal. I am sending the reports from all of the diagnostics I had for TCI plus the stuff from the ER after the MVA.
30 October 2007 Feeling Much Better - The pity party is over. I cannot say I am feeling optimistic. I am no longer only seeing negatives. I am 5 months into Seasonal Affective Disorder (SAD) season.
I see the Orthopedist tomorrow about my knee. I have more range of motion I check each day and any time I have it out of the immobilizer I try to move it a bit. I can walk on it without the immobilizer though I cannot bear full weight on the knee and it hurts after a few minutes. There is an odd indentation diagonally across the kneecap that was not there prior to the MVA.
I am feeling a bit more positive about TCI as well. I?m certainly not expecting miracles. I am able to push back the thought they will turn me away questions unanswered. I will be happy if they can tell me what is going on with my head & neck.
27 October 2007 Today I woke up with pain and a nasty sharp twinge on the right side of my lower back. I get zapped with most movement. My right knee feels worse there is a sharp pain under the knee cap. It feels like there is a large cut that is bleeding the area is tender to the touch with very sharp pain. My entire spine hurts, it is very achy. There is pain and burning between my shoulder blades, it was painful after the accident. They only did a CT of my neck and head. The back of my head and neck hurt & burn. The place where my right shoulder and neck meet has been throbbing on and off all day. The right side of my head has been hurting since the accident. I have a migraine on the left side of my head which is off the charts. My left eye feels swollen. I've spent most of today on a heating pad which has done little good. I have to get up to take a Fioricet with codeine because I have to sit or stand for 30 minutes after taking it. I was hoping trying the Fioricet after not taking it for several weeks would do some good for the migraine, no such luck. It does relax me a bit though there seems to be no change in pain levels at all. I wish I had a doctor who would prescribe pain medications. Meditation only works so well.
I see the orthopedist on the 31st it seems like forever until the appointment. I have cancelled the other neurologist and have chosen to rely upon TCI to do a thorough neurological evaluation.
I am vacillating between a major pity party and homicidal thoughts. It was the other drive that did a bad thing and I am being punished. If I end up with daily migraines on both sides of my head because of this clown they may have to put him in jail to protect him.
25 October 2007 Day 3 post-MVA - I called the Neurologist office and made an appointment for the 26th of November. I am on the cancellation list. I am waiting on a call back from the Orthopedist office to make an appointment. I hope they call soon. I made an appointment with my primary doc for November7th. My appointment at The Chiari Institute (TCI) is November 5th & 6th. I am going to be severely out of it for my doctor appointment on the 7th.
My knee is really bad today it is protesting any weight bearing with the immobilizer. I was previously able to bear minimal weight without much pain. The back of my head and neck are very painful. My neck feels as if it is being compressed downward. My shoulders feel as if they are being pushed down as well. My entire spine is in spasm thought it is not as intense as yesterday.
DPW wants proof of my SSA appeal by November 15th or I lose my benefits. I called the number I had for the SSA and by the time I shuffled through the waiting and transfers to the right number the office was closed. The message line was busy. Ugh. I will try again tomorrow.
23 October 2007 Day 1 post-MVA - I woke up today with places I didn't know could hurt. My chin is bruised from the hard cervical collar. My scalp is sore from them ripping the duct tape out of my hair at the ER. I have a small abrasion on my stomach. My forehead is a bit pink but no major rash like my arms. My torso feels like I am wearing a cast iron corset that is a size to small. My entire spine is is in spasm especially on the right side. We have the insurance information so I can call tomorrow to make appointments with the orthopedist and neurologist. My aunt told me I should be grateful I was sobbing when they moved my knee in the ER because it made a loud grinding noise. I am glad I did not hear it I was working hard enough to deal with the nausea caused by the pain.
Mom spoke to the police officer who was at the scene of our MVA. The other driver told the officer that we were blocking him by turning left into the gas station at the corner. Mom gave him all of the details including the fact that we were past the entrance of the gas station wating to turn left at the intersection. There were many witnesses it was the beginning of rush time for traffic.
22 October 2007 I need a vacation! - Today at 1:30pm I had a 3D CT scan of my head & a 3D CTA of my neck. The scans themselves were not bad. The IV for the contrast sucked. I have very small veins. First they tried the right arm which was not cooperating and she gave up and put gauze and tape on my arm. I am allergic to adhesives so I now have a rash and torn, burning skin on my right arm. The left arm was a success for the IV though it was very painful. The rash on the left arm was not as bad they used paper tape. I left the Radiology Department at 3pm.
I went to the bathroom and washed as much of the adhesive off as I could manage. I went outside onto a bench and began sobbing. I was emotionally fragile to begin with, both arms were burning, stinging and every time I am hurt during a testing procedure it feels like punishment. Mom found me and helped me to settle down some.
We decided to find food because I had not eaten since 6am. At approximately 3:30pm we had made it a few miles from the hospital and were stopped in a turning lane at a red light. I watched a car come through the intersection and move into the center lane, he was coming straight for us. He was looking directly at us and never slowed. The next thing I remember is seeing the air bag, smoke and the smell of something burning. I managed to force my door open despite its being stuck, adrenaline is an amazing substance. I moved to the side of the road and was sobbing again before sitting down. I was terrified I have so much going on with my head and neck. I also realized my right knee was severely painful and I was unable to move it, I have no idea how I managed to walk to the side of the road. I was barely able to speak to the police and EMT. I was put into a neck brace and laid onto a back board. My head was taped onto the board with duct tape even as upset as I was I was amazed by this. I told the EMT I was allergic to adhesives. The ride to the hospital was rough with my knee being so painful, Mom rode in the front of the ambulance she had chest pain.
At the hospital they sent Mom to the front to register us. I was moved into a room and onto a bed again my knee strongly protested. A nurse showed up and took my bp and pulse. Eventually Mom came back and a Physician's Assistant showed up. I was taken off the back board after a quick examination. Mom was having some chest pain and was taken for a chest x-ray. They also did a EKG on Mom just to be on the safe side. Mom would not let them put us in separate rooms. They did a urine test, it was my first experience with a bed pan and hopefully my last. I was there three and a half hours before they did a CT scan. I was told not to move my head but they let me move myself onto the CT machine, it makes no sense to me. The entire time I had duct tape stuck to my head and foam touching my face. I was then told the CT scan was normal. I wanted to say 'compared to what' though I know they meant compared to my earlier films normal is not a term I think of with my neck. The PA came in and asked if they x-rayed my knee, they had not and were supposed to immediately following the CT scan. They took off the tape which was awful my skin becomes gooey and tears because of the adhesives. I was given a shot for pain, probably dilaudid. They were trying to pull the duct tape from my hair, i told them to cut it hair grow back. Mom used lotion to try and get the remaining adhesive off of my forehead and arms they were stinging badly. I was put in a wheelchair and taken for knee x-rays. The pain med had kicked in enough that I was able to move my knee enough for the x-rays without severe pain. I was told my knee was not broken and put in an ace wrap and an immobilizer. We told them we had a wheelchair at home so no need for crutches. I cannot use crutches because of the carpal tunnel syndrome. We left the hospital at 10pm. I had spent 10 hours at the hospital and had not eaten in 16 hours. I was told I have a bruised knee & a cervical strain.
Mom's car probably did not survive the accident we expect it to be totaled. Mom has some abrasions from the air bag on her chin, neck & chest. She has a bruise from the seat belt. I have a seat belt bruise and a bruise under my chin from the neck brace. I slathered my forehead and arms with nutribiotic ointment they are stinging and burning. I have not looked in a mirror and have no wish to see the rash. Dad drove us home. Mom had my aunt pick up food which was there when we got home so we ate. I emailed everyone to let them know what had happened and to let them know we were in one piece. I went to bed around 11:30pm. My knee woke me up at 2am.
I faxed my primary doctor about the accident. I emailed the Chiari institute. Tomorrow we will call the insurance company to find out the name of the adjuster and other fun stuff. I will be making an appointment with my leg orthopedist to evaluate my knee. I also will be making an appointment to see the neurologist who I saw after the last MVA in 1996. He was very thorough in the testing he did and diagnosed the post-concussion syndrome and post-traumatic migraines.
I aksed my uncle who is a local police officer to let me know what happened to the idiot who hit us. He was practically elated and bouncing all over. Mom said he asked what happened, when Mom said you hit us he was apologetic. It seemed odd that he would not be aware considering he was looking right at us. He was not wearing a seat belt so he should be hurt. Frankly I hope the man needs a crane to get out of bed tomorrow. I hope the same of the idiot who ran a red light and hit me in 1996.
I had just finished my Social Security appeal last night but have not sent it out. I have to add the new information about the accident.
21 October 2007 I had a MRI of my Brain with cine & Cervical Spine on Saturday starting at 7:30am. They could not use the pulseox they used an EKG. I had the leads on maybe 15 minutes and I already looked like I was attacked by an octopus. I put ointment on the marks as soon as I got home. They will go away in a few days, I wish they didn't burn. I meditated and was able to control the itching and pain of lying flat for two and a half hours. I was grateful I did not begin to choke. After the MRI's I had X-rays of my Cervical Spine & Lumbar Spine.
Today I had the Thoracic & Lumbar MRI's also starting at 7:30am, only an hour and a half today. Meditation again kept me in one piece. I was unable to use a pillow for the Thoracic part. My neck and shoulders began to cramp fortunately I was able to turn it off.
I finished up my Social Security appeal. I wrote them a detailed letter. As I was writing I will never ride a horse again due to the Chiari I fell apart sobbing. I have managed to deal with all of the blows of the various medical conditions as 'just the way things are'. This feels too much like punishment. I have always held onto the idea of one day being involved with horses again. I have wanted to be a riding instructor and own stables since I was 10 years old. I am grieving a broken heart and know I will get past it at some point.
I've had too many negative and abusive doctor appointments. I try to keep my objectivity though it is hard not to be distrustful of doctors. The search for a new primary doctor is not helping. The doctors either don't take Medicaid or they don't take patients with so many medical conditions. I'm also dealing with the fear I cannot be helped by The Chiari Institute.
Tomorrow I have a CT-Scan & CTA of my neck at 1:30pm, they should be fairly fast.
18 October 2007 A Thought - I am dealing with getting all of the MRI's, CT-Scans & X-Rays I need for my appointment at The Chiari Institute (TCI) on November 5th & 6th. Saturday morning I will be having a MRI with CINE of my brain and a regular MRI of my cervical spine. After the MRI's I will be having X-Rays. Sunday morning I will be having MRI's of my thoracic & lumbar spine.
