I did my last MRI yesterday. Due to my claustrophobia that was quite a feat! I spoke to my NS nurse today and she said the doctor will be looking over the studies and then they will let me know if he wants more (oh, please, no) or if he is ready to see me. I know my rheumatologist has been talking to him and trying to get him to work me in sooner. They made a tentative appointment for August but my rheumatologist didn't want me waiting that long. I do understand though that he couldn't tell me much without seeing new MRI studies first. So now it's a waiting game.
I had my second physical therapy session today. It is a lot harder than I remember. It has been a month since I did PT. I'm in quite a bit of pain now and had to take a pain pill when it was over. The physical therapist left me with some exercises to do on the days he doesn't come. I guess he will be coming twice a week. I'm glad it's no more often than that because I'm not sure I could handle it. The straining puts a lot of pressure on my head and makes the headache and neck pain a lot worse. I'm hoping the therapy is a good idea at all and is not making things worse. I will be seeing my rheumatologist on Tuesday and will ask him his opinion.
I'm still waiting for my power chair to arrive. That should make things a lot easier.
So.... now I wait... again....
Thursday, April 14, 2011
Sunday, April 10, 2011
What Chiari Is and How it Affects Me
There are many websites that you can search and find all the medical jargon you want about ACM1. I'm going to give you the "plain english" version. In simple terms, people with Chiari have skulls that are not large enough for their brains (or brains that are too large for their skulls)... This causes pressure in the skull and makes the brain herniate down into our spinal canal, which in turn puts pressure on our spinal cord and brain stem. It is this pressure that causes our symptoms. Just like with any hernia, physical stress will cause symptoms to be worse. Sneezing, coughing, laughing or straining will make me feel as if my head is going to explode.
There are many symptoms reported with Chiari. Here is a list of my symptoms:
Here is a picture from my MRI. I have drawn a white line to show you where the brain should have been contained. You can see the part that is herniated down past that is putting pressure on the spinal cord.
When my ACM1 was found I was referred to a Neurosurgeon who is a specialist on Chiari. I had a very long visit with him and we decided at the time (one year ago) that I did not need surgery. In the last 4 months my symptoms have become much worse and I am now unable to walk, perform anything that requires fine motor skills, and I have pain all the time. At the time my doctors suggested my problems were related to my lupus (I have SLE) so they suggested I go to an inpatient physical rehabilitation facility. I was there for 3 months while they tried to get my muscles built up and get me walking again. It was towards the end of that 3 months that my rheumatolgist (I also have lupus) suggested that perhaps my worsening symptoms were due to the Chiari and not lupus as we had originally thought. He then called my neurosurgeon to request that he see me again and reevaluate the situation. The neurosurgeon said before he sees me again he wants me to have more MRI's. They scheduled 3 days worth of MRI's and so far I have completed 2 of them. Once he sees them they will make me an appointment. My next MRI is a thoracic MRI on Wednesday at 1pm. I am extremely claustrophobic and hate those studies!
There are many symptoms reported with Chiari. Here is a list of my symptoms:
- Headache/Neck Pain
- Tinnitus
- Fullness/Pain in my ears
- Nystagmus (involuntary eye movements)
- Blurred Vision
- Balance Issues
- Dizziness/Vertigo
- Breathing Difficulties
- Swallowing Difficulties
- Drop Attacks (falling for no reason)
- Muscle Weakness & Pain
- Gait Problems (unable to walk)
- Memory Problems/Difficulty Finding the Right Words
- Hand Tremors (thank goodness for spell checker and backspace)
Here is a picture from my MRI. I have drawn a white line to show you where the brain should have been contained. You can see the part that is herniated down past that is putting pressure on the spinal cord.
When my ACM1 was found I was referred to a Neurosurgeon who is a specialist on Chiari. I had a very long visit with him and we decided at the time (one year ago) that I did not need surgery. In the last 4 months my symptoms have become much worse and I am now unable to walk, perform anything that requires fine motor skills, and I have pain all the time. At the time my doctors suggested my problems were related to my lupus (I have SLE) so they suggested I go to an inpatient physical rehabilitation facility. I was there for 3 months while they tried to get my muscles built up and get me walking again. It was towards the end of that 3 months that my rheumatolgist (I also have lupus) suggested that perhaps my worsening symptoms were due to the Chiari and not lupus as we had originally thought. He then called my neurosurgeon to request that he see me again and reevaluate the situation. The neurosurgeon said before he sees me again he wants me to have more MRI's. They scheduled 3 days worth of MRI's and so far I have completed 2 of them. Once he sees them they will make me an appointment. My next MRI is a thoracic MRI on Wednesday at 1pm. I am extremely claustrophobic and hate those studies!
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