As usual the Good intentions to keep this blog updated just didn't happen. You would think that it would be simple to just type up a few simple thoughts. However, I never seem to be able to do that. I have great excuses, but they are just that... excuses.
So what is new? So much! Yet so little.
I have finally scheduled surgery for my right hand. On Wednesday I will be having my 4th hand surgery. Two things will be getting fixed. First the tendon that has been hurting for many years will be fixed. There is a bone spur that is rubbing it, so this will be shaved down. The sheath for the tendon will be opened up, allowing more room for the tendon to do its job. And if the doctor finds any damage to it, he will repair it. Also, the doctor will be tightening the joint to my thumb. And taking a look to see why it isn't working properly. I should have a simple recovery. I am looking forward to being able to crochet, write and use a knife again! As well as a few other simple activities!
I still haven't found a new Rheumy.... for the last 2 years my neurologist has done his best to manage my Ankylosing Spondylitis. But this is his last month in his current position. He is leaving for a new job in a new state. Living in a city with a million snow birds and retirees you would think we would have our pick of Rheumy's but we have only a dozen or so....crazy. Thankfully I don't need to find a new neurologist, yet. I plan one seeing the replacement doctor. Praying he is good and has some new ideas for my treatment. My headaches have been getting worse, so much pressure in the back of my head. And this last week I have felt/heard a pop in my neck, three different times. The first two times I was in horrible pain for the remainder of the day, by the next morning I was much better. This last time, yesterday, the pain was way worse and today I have not recovered. I can't bend to look down and turning either way is difficult. Come Tuesday morning I will be making an appointment with the new neurologist.
God is Good, All the Time!
Showing posts with label Chiari Malformation I. Show all posts
Showing posts with label Chiari Malformation I. Show all posts
Saturday, May 24, 2014
Sunday, October 2, 2011
Waiting:
Many times throughout the day I feel as if I am in a constant state of waiting. Waiting for the next phase of my life. Waiting for the day I can begin to do the things I long to do. Waiting to heal. Always waiting to heal.
Surgery went well I suppose. I had minimal pain in my hand, but suffered a nasty headache for a week afterwards. Actually, I still have a headache. I have a call into a new Neurosurgeon's office, for a second opinion. Hopefully I will have a scheduled appointment soon. I fear that the Chiari is causing more issues then originally expected. Here are the symptoms that are linked with Chiari Malformaton I. Mine are underlined and bold. Link to original list.
Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints
Crazy! When I see it written out like that it scares me. I have always just assumed that many of these symptoms were related to my arthritis. But to have two huge illnesses is overwhelming. So I continue to wait. Wait to feel better. God, please, I beg of you, help me to feel better. This is not the life I expected to live. Help me to live it well.
Many times throughout the day I feel as if I am in a constant state of waiting. Waiting for the next phase of my life. Waiting for the day I can begin to do the things I long to do. Waiting to heal. Always waiting to heal.
Surgery went well I suppose. I had minimal pain in my hand, but suffered a nasty headache for a week afterwards. Actually, I still have a headache. I have a call into a new Neurosurgeon's office, for a second opinion. Hopefully I will have a scheduled appointment soon. I fear that the Chiari is causing more issues then originally expected. Here are the symptoms that are linked with Chiari Malformaton I. Mine are underlined and bold. Link to original list.
- Headache (esp. if daily or at lower back of head)
- Painful tension in neck
- Fatigue
- Migraines
- Dizziness
- Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
- Tingling / numbness in the extremities
- General imbalance / clumsiness
- Memory loss
- Restricted movement
- Intolerance to bright light / difficulty adjusting to light change
- Vertigo from position change or sudden standing
- Difficulty walking on uneven ground / feeling ground under feet
- Poor / degraded motor skills
- Difficulty driving
- Difficulty negotiating steps
- Pressure / pain in the neck
- Pressure / pain behind the eyes (soreness in the eyeballs)
- Back pain
- Neck spasms
- Insomnia
- Ringing in ears (like the tone heard in a hearing test)
- Swaying
- Pain when changing position
- Tingling / crawling feeling on scalp
- Intolerance to loud / confusing sounds
- Decreased sensation to touch in extremities
- Decreased sensitivity to temperature
- Pain & tension along ear / eye / jawline
- Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes
- Drooling
- Spontaneous vertigo
- Hand tremors
- Poor blood circulation / cold hands & feet
- Sinus / mucous problems
- Sleep apnea
- Decreased muscle tone
- Pressure in ears / ears feel stopped up
- Nausea
- Difficulty reading / focusing on text
- Depth perception problems
- Burning sensation in extremities / shoulder blades
- Menstrual problems / severe cramping during period
- Fluid-like sound in ears (like water running)
- Loss of sexual interest / lack of sensation in pelvic area
- Pulling sensation while sitting / standing
- Intense itchiness w/profuse sweating
- Slurred speech
- Gag reflex problems / lack of gag reflex
- Pressure / tightness in chest
- Loss of bladder control
- Frequent urination
- Dehydration / excessive thirst
- Electric like burning sensations
- Unequal pupil size
- Loss of taste
- Popping / cracking sounds in neck or upper back when stretching
- Dizziness
- Loss of smell / problems with sense of smell
- Dry skin and lips
- Sudden / abrupt changes in blood pressure due to awkward position of head
- Hiccups associated with drinking carbonated beverages
- Skin problems
Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints
Crazy! When I see it written out like that it scares me. I have always just assumed that many of these symptoms were related to my arthritis. But to have two huge illnesses is overwhelming. So I continue to wait. Wait to feel better. God, please, I beg of you, help me to feel better. This is not the life I expected to live. Help me to live it well.
Friday, September 16, 2011
Something new....
This week has been exhausting. I knew it would be when I reviewed the calendar last weekend. It was full of day to day stuff, doctors appointments, the children's sports, and youth group. For the average gal this would just be tiring, but I am not average. I suffer from a handful of illnesses that make things much more difficult. On top of being physically busy, my mind has been pre-occupied with health issues.
Last week I picked up a copy of my medical records from the rheumatologist that I fired. I have an appointment with a new doctor in December (of course it takes months and months to get in with a specialist, sigh). The first thing I did when I got home was read my records. There weren't many pages to it since I had only seen this particular doctor a few times. Nothing was out of the ordinary, that is until I got to the very last page. An MRI report that I had done last August. Last, as in the year 2010. That is 13 months ago. An MRI I had done of my brain. Incidentally, that same day I also had an MRI of my spine that I was unable to complete due to an overwhelming feeling of suffocating. Anywho, this particular report of my Brain showed abnormalities. Hmm, that is strange since my neurosurgeon never mentioned anything. I clearly remember last year when my neurosurgeon called with the results of this MRI. He left a voice mail stating that I had a brain, (it is always funny when surgeons try to be funny!). There was some evidence of some swelling. Let me back up just a moment and tell you the reason I had this particular MRI. It was because I had a c5-c6 fusion at the end of June and a few days prior to the MRI I smacked my head on the car jam, resulting in a concussion. Because of the brand new hardware in my neck, the Massive headache smacking my head caused and some new tingling in my arms...the MRI was ordered. My neurosurgeon suggested I rest lots and asked me to see my neurologist.
Neither of these experts ever mentioned that my MRI CLEARLY showed findings of mild Chiari Malformaion I. In a nutshell, Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.
Um what? How in the world did that pass by my doctors? Well let me tell you. I called my NS as soon as I could breathe again and his reply, through his assistant, was that because it said mild he was unconcerned. And also, because it was found on a brain MRI and not a cervical MRI. Hmm.... I have several issues with this response. From the research I have done, and oh boy have I done my research, showing Chiari on a MRI is so important! With these findings and with the many symptoms I have this needed to be addressed!. Chiari does not go away, it progresses and there is NO CURE. The doctor should have taken into account that I can check of a majority of the symptoms. The doctor should have at least mentioned it to me and told me to be aware of this situation and come in if any new symptoms arise. The doctor should have at least told me to come in for another MRI in a year or two. But no. He choose to ignore these findings. Period. He took away my right to be knowledgeable about MY BODY. The doctor should have reread my MRI of my spine, from May of 2010, where it is noted that I have low lying cerebellar tonsils.
What am I going to do with all this information?
With the knowledge of the mild Chiari Malformation I: I will continue to obsess, err education myself. Continue to be aware of my headaches, numbness and tingling of my face, pressure in my brain and neck, balance issues and a myriad of other symptoms. I will seek the expert opinions of other professionals, maybe someone who has dealt with this condition a bit more than my current doctor.
With the knowledge that my doctor discarded something so important: This one I will have to think about. I liked this doctor. For the most part. I remember feeling "dismissed" after my fusion. That the headaches and other issues I had were "in my head". sigh
This was just one small portion of my busy medical week. I also had my first Physical Training appointment for my right knee. I met my new Primary Care Physician this week. I liked her! I had a follow-up appointment with my hand surgeon. And I scheduled my 7th surgery in less then 3 years.
TGIF!
Last week I picked up a copy of my medical records from the rheumatologist that I fired. I have an appointment with a new doctor in December (of course it takes months and months to get in with a specialist, sigh). The first thing I did when I got home was read my records. There weren't many pages to it since I had only seen this particular doctor a few times. Nothing was out of the ordinary, that is until I got to the very last page. An MRI report that I had done last August. Last, as in the year 2010. That is 13 months ago. An MRI I had done of my brain. Incidentally, that same day I also had an MRI of my spine that I was unable to complete due to an overwhelming feeling of suffocating. Anywho, this particular report of my Brain showed abnormalities. Hmm, that is strange since my neurosurgeon never mentioned anything. I clearly remember last year when my neurosurgeon called with the results of this MRI. He left a voice mail stating that I had a brain, (it is always funny when surgeons try to be funny!). There was some evidence of some swelling. Let me back up just a moment and tell you the reason I had this particular MRI. It was because I had a c5-c6 fusion at the end of June and a few days prior to the MRI I smacked my head on the car jam, resulting in a concussion. Because of the brand new hardware in my neck, the Massive headache smacking my head caused and some new tingling in my arms...the MRI was ordered. My neurosurgeon suggested I rest lots and asked me to see my neurologist.
Neither of these experts ever mentioned that my MRI CLEARLY showed findings of mild Chiari Malformaion I. In a nutshell, Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.
Um what? How in the world did that pass by my doctors? Well let me tell you. I called my NS as soon as I could breathe again and his reply, through his assistant, was that because it said mild he was unconcerned. And also, because it was found on a brain MRI and not a cervical MRI. Hmm.... I have several issues with this response. From the research I have done, and oh boy have I done my research, showing Chiari on a MRI is so important! With these findings and with the many symptoms I have this needed to be addressed!. Chiari does not go away, it progresses and there is NO CURE. The doctor should have taken into account that I can check of a majority of the symptoms. The doctor should have at least mentioned it to me and told me to be aware of this situation and come in if any new symptoms arise. The doctor should have at least told me to come in for another MRI in a year or two. But no. He choose to ignore these findings. Period. He took away my right to be knowledgeable about MY BODY. The doctor should have reread my MRI of my spine, from May of 2010, where it is noted that I have low lying cerebellar tonsils.
What am I going to do with all this information?
With the knowledge of the mild Chiari Malformation I: I will continue to obsess, err education myself. Continue to be aware of my headaches, numbness and tingling of my face, pressure in my brain and neck, balance issues and a myriad of other symptoms. I will seek the expert opinions of other professionals, maybe someone who has dealt with this condition a bit more than my current doctor.
With the knowledge that my doctor discarded something so important: This one I will have to think about. I liked this doctor. For the most part. I remember feeling "dismissed" after my fusion. That the headaches and other issues I had were "in my head". sigh
This was just one small portion of my busy medical week. I also had my first Physical Training appointment for my right knee. I met my new Primary Care Physician this week. I liked her! I had a follow-up appointment with my hand surgeon. And I scheduled my 7th surgery in less then 3 years.
TGIF!
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