I had quite a few MRI’s since the suggery. My neurosurgen said that he didn’t see anything just the nerve is still a little kinked but not enough to cause a problem. During that suggery they go in from the front so they tilt you head back, strech your chest forward. My physio told me that they see a lot of patients with futher porblems after a suggery like that. After quite a few app with the neuro, he told me he didn’t know… it might be something he did wrong… How would I know and how could I prove it.
Since then it’s been physio, chiro etc… Strengthening with elastics has helped but when it decides to flare up, it just kills me.
IT was going well for a few months so I started to slowly go down on the meds but went it flared up, I had to go back up. It’s not much better but my spirit is better than a few weeks ago.
[QUOTE=smitty]Have you had more MRIs of your neck? Could there be something still wrong there?[/QUOTE]
You do not say if the MRI is of the brain or spine or other place. You are right in that the MRI is not expected to show changes with CIDP. An MRI is almost always done to “rule out” another disease like MS or a something in the brain that might be confused with the symptoms of CIDP and that would need another treatment approach.
CIDP is rare. You really should see a doctor that specializes in the peripheral nervous system. This being said, a lot of specialist in the peripheral nervous system argue about what changes on EMG are important in people–how to do the tests (number of places, etc) and what levels of changes are important.
CIDP is a problem with the peripheral nervous system. An MRI of the brain or spine looks at the CENTRAL nervous system.
WithHope for a cure of these diseases
Yes I did have an MRI on my brain and spinal cord. It helped them diagnosis my CIDP. I have increased neuropathy in my extremities. I also had and EMG. I’m so blessed to have good insurance because the MRI was very expensive. Sometimes I wonder though if the are just trying to make money.
I asked for a copy of my results because the neurologist just generalized it and didn’t go into detail with me. Don’t be scared. I figure for myself since I had to wait several weeks for the report it wasn’t serious.
Have you had MRIs of the spine to make sure that all is okay there? The reasons I ask are several–
First you said that you have upper neuron disease in the arms. GBS is (supposed to be) a lower neuron disease. Second you said there are impingements and entrapments in the arms–I am not sure if this is in the nerves exiting the spinal cord or distally (such as in carpal tunnel disease), but it there are SPINAL issues at one place and new symptoms, they need to look for spinal issues at other places–like the lumbar spine with new neurologic issues predominantly on one side and associated with pain and gait abnormality and (I think?) axonal damage.
WithHope for a cure of these diseases
[B]Matt, You wrote:
They want to do an MRI (to check for a tumor in the brain) but my daughter and her husband are opposed to it. They feel ithe double vision is caused by the GBS and dont’ want to go that route. I see no reason not to just be sure.
The past few days have been constant highs and lows for us and the whole thing is wearing on everyone.
[FONT=”Comic Sans MS”][SIZE=”2″]May I ask, is it the cost of the test, or fear of the outcome?[/SIZE][/FONT]
[FONT=”Comic Sans MS”][SIZE=”2″]I had an MRI test during the course of my third hospitalization. No one told me how frightening the experience would be, it was hard to remain still because I was in pain and you don’t expect the noise to intensify it.[SIZE=”3″][B][I] Having said that however, I found out later that you can, and in many case should be sedated for this test.[/I][/B][/SIZE]
There were important findings as a result of the test and positive changes in treatment.
Can you speak to her Dr. and perhaps get him/her to at least gently press for an MRI?
Hope she’s doing well,
i had a brain mri too during my stay in the hospital before they figured out what was wrong with me, because i also had double vision along with all the other symptoms. they too wanted to rule out ms. they did however discover that my left optic nerve was damaged which led them to the two spinal taps in two days along with emg’s every other day. my left optic nerve is still damaged post gbs 5 years. no further mri’s were needed after i was diagnosed. i still get migrane headache’s every so often. never had the face pain thing though.
please keep us posted on your findings after the mri results are in.