New diagnosis, many questions

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New diagnosis, many questions

Postby ljturner66 » Wed Oct 05, 2011 12:35 pm

Hello,

I just learned last week that on an MRI I had in 2007 they found a 13mm chiari malformation. At that time I was being assessed for MS, because of neuropathy in my hands and feet. The eventual diagnosis I got for that was b12 deficiency. Meanwhile, I had (and have) many symptoms of Chiari, however neither my primary doctor or the neurologist I was seeing at the time thought it was important to investigate it further.

Last week I was back at my primary doc's for a physical, and I mentioned that I continue to have very bad headaches that mostly affect the left side of my head and neck. Some days I can't work because of it, other days I manage with taking Excedrin Migraine. I also get classic migraine with aura.

My primary doc looked at the MRI report from 2007 mentioned the chiari but didn't seem to know what it is. She sent me for another MRI which I had on Monday. I have a copy of the two studies on a CD and both look very much like there is a Chiari malformation.

In addition to the headaches, I have been having these symptoms for some time:

seeing spots or colors (mostly at night)
ear pain, fullness in my ear
tinnitus
difficulty walking at night (hitting walls, doorways)
problems with cognition, I transpose telephone numbers, have very hard time with short term memory, can't concentrate
numb feeling in my neck
eyes moving back and forth when I read
head rush when I stand
dizziness/vertigo, especially when I look downward or change my head position
chest tightness
fatigue
nausea
pain when straining

All of these symptoms have been occurring for a long time but I did not know until recently that they could be caused by Chiari.

I have an appointment with my primary doc in a week or so and I have the names of two neursurgeons who list Chiari as their specialties. Now I have to figure out how to convince my doctor to schedule the appointments since she doesn't know anything about Chiari.

Anyone care to speculate as to what my options will be? I am not sure if they will recommend surgery...
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Re: New diagnosis, many questions

Postby airsense00 » Fri Oct 07, 2011 12:56 pm

Hey,

Sorry to hear u are going through all this. I'm glad you have an appointment with someone who knows chiari. The only treatment for chiari is decompression surgery. 3-4 days in hospital and you will be 90% at 6 weeks typically. Let us know what the doc says and ask him or her what type of surgery he or she does. There are really 3 types of decompression surgeries. Also from your MRI do you have any cavities in your spinal cord? That would indicate syringomyelia. Your symptoms sound like they are affecting your quality of life and things will get better. Your life is not over if you have chiari and get the decompression your symptoms will get much better. If you have SM also it is better to get it done quickly so you don't cause irreversible nerve damage. Good luck ask lots of questions and keep us updated.

Dave
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
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Re: New diagnosis, many questions

Postby airsense00 » Fri Oct 07, 2011 12:58 pm

Oops re read your post. Get an appoint with a neuro surgeon who knows chiari. Make your primary doc give you a referral if you need one.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
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Re: New diagnosis, many questions

Postby storto321 » Sat Oct 08, 2011 8:10 pm

sorry to hear u are having to go through this i was diagnosed with chiari malformation type 1 in 2009 with a 10mm herniation,you will probably need the chiari decompression, there are so many related issues that come along with this,i have developed hydrocephalus along with the chiari, you can live a normal life with the chiari, keep ypur chin up, i can recommened a great neurosurgeon his name is kevin walter , i don't know where you live but he is up here in rochester,ny let me know if you want his number, hope things turn out for the best , let us know. :P
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Re: New diagnosis, many questions

Postby ljturner66 » Mon Oct 10, 2011 7:37 am

Thanks for the replies! I got the report from my MRI of 10/4/11 and again in the impressions it notes Chiari Malformation type 1. This one said it was 9mm, in 2007 they said 13mm. I am not sure why there is a difference, other than this time they used contrast. I also have a developmental venous abnormality and I am not sure what that means. In any case I go back to my primary next Tuesday, and I am hoping I can convince her to schedule me with the two Neurosurgeons in the area who treat Chiari. Not sure about syrinx at this point, neither MRI went low enough to see if there is one there. I am thinking though that since I have scoliosis I may have syrinx...

Still unsure if surgery is in my future...
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Re: New diagnosis, many questions

Postby ljturner66 » Thu Oct 20, 2011 8:13 am

Just another quick post - seems like frustration with this condition is inevitable. When my primary got my MRI (second one in four years with Chiari noted in the impressions) she was more intrigued by the finding of a developmental venous abnormality (which is most likely completely benign and incidental) so she has set me up with a Neurologist, not a neursurgeon. On the practice's website, Chiari is not listed as something they treat. So despite the fact that I gave her administrative assistant the names and contact information for two NS in the area who treat Chiari, I got nowhere. She even said to me "you know more about Chiari than I do" which made me so annoyed I didn't argue. Now my best shot seems to be to convice the Neurologist to do a cervical and CINE MRI and refer me to a NS. BUT, if they don't know anything about Chiari it may be a dead end. So frustrating!!!

Meanwhile, I have spent the last week or so trying to talk myself out of my symptoms so I can just ignore this whole thing. Then last night after bending over to clean the kitty litter I felt such tremendous pressure in my head that I know I can't do that.

Anyone have any suggestions??? Thanks!!
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Re: New diagnosis, many questions

Postby razzle » Thu Oct 20, 2011 10:57 am

well you dont need a neurologist you need a Neurosurgoen . If the NS wants a nerve study test then he will schedule it. I would call your drs office back and ask to be set up with a NS , you are paying the bills so they need to do what you want. and you want a Dr. that specializes in chiari . ROZ sent you a pm
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: New diagnosis, many questions

Postby razzle » Thu Oct 20, 2011 11:04 am

also if you have insurance some drs dont need a referral and you can make the appt your self
Once you choose hope, anything's possible.

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Iowa
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Re: New diagnosis, many questions

Postby ljturner66 » Thu Oct 20, 2011 11:11 am

I had tried setting up the appointments myself but both offices said they need my primary to do it. I was dealing with the NP at the office, I may ask to go see the doc and try to talk with her. Part of my frustration is that my job just changes and I now work and live far from my primary's office so I was going to be looking for a more local one anyway. Maybe that's the route to take. UGH....
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Re: New diagnosis, many questions

Postby razzle » Thu Oct 20, 2011 11:47 am

I never see NP I always ask for my dr herself. Dr offices are good at secretively set you up with the NP
Once you choose hope, anything's possible.

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Iowa
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Re: New diagnosis, many questions

Postby ljturner66 » Thu Oct 20, 2011 12:10 pm

As much as I would like to think differently, I know my Doc knows nothing about Chiari. I was in the exam room when the NP went outside the (open) door and told the doc about the finding from the 2007 MRI and she said "Oh that's some kind of blood vessel thing, nothing to worry about". So you can see why going back to try to deal with them seems futile.
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Re: New diagnosis, many questions

Postby ljturner66 » Fri Oct 21, 2011 2:10 pm

I may have made some progress here. After lamenting in my posts about my doctor predicament, I decided to call one of the neurosurgery offices back and explain my plight to the appointment coordinator. She took my information and asked me to fax my recent MRI report and said she would get back to me about setting something up! I sent it this morning and no word yet. If I don't hear anything today I will call back on Monday. A glimmer of hope!!! :P
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