What to ask or what to expect?

[missmeh]

Hi, I am new to this community and website. About 7 years ago I ended up in the ER and had an MRI done, the report said that I have Arnold Chiari Malformation, suggested it to be type 1, with a syrinx and possibly an area in the spine that looked like it may have been fractured. I went to my first neurosurgeon's appointment and they asked questions and poked my arms with a sharp object, the doctor wanted me to have a certain type of MRI done that they can only in that town, I live in a small town so I have to travel to another for the neurosurgeon, which I ended up not getting done due to the insurance I had at the time only approving me when I had like 3 days left to get the MRI. Then that neurosurgeon and the others in that office left. Pretty much life happened and I put off going and finding another one until the last few months. In Dec.2014 my lower left part of my face began to tingle (no numbness) and it does it into my left side of my mouth,lips and tongue. I have severe headaches and when I cough or strain my head hurts. A lot of the times the pain feels like a wrench on the back of my head and spine being clenched down. I also have some loss of sensitivity in my hands and right arm (when the doc poked me I could barely feel it in the upper arm area), things that are hot to others are not to me, I drop stuff a lot. My primary Doctor thinks I may have fibromyalgia as I have body pain, I also have arthritis in my neck and it looks like the start of it in my hands. I am sorry for including so much info, but the point I am trying to make is things have gotten worse.

I now have another neurosurgeon appointment on Feb. 9th, and it's been so long since the last one, which was the first and only one, I am wondering what should I expect, are there any questions I should be asking? This appointment I believe is with the assistant of the surgeon I will eventually see, I know they will probably want to do another MRI since it has been about 5 years since my last one. I generally like to write down my questions or thoughts for the doctor before I go see them and would really appreciate any information or thoughts you have as to what I should be asking. Although it has been about 7 years since I was told I have the chiari malformation, I feel new to it, I only yesterday started looking into information on this...I know the symptoms I have are most likely from it but other than knowing how I feel physically, I am lost. Thank you for taking the time to read this and any suggestions are more than welcome.

[missmeh]

Thank you all who replied. I honestly am not sure if I had an injury, my primary said it may have happened while still in the womb, or the only thing I can think of is falling off a deck I had when I was 5 onto my back and head. I really do appreciate you all replying, I never would have thought of asking what activities to avoid and I agree I need to be my own advocate for my health as well as I had no clue to even think of getting a NS specializing in this. Thank you all so much! I am sure grateful.

[selmaS]

  AS per Elisaandbucky suggested we do have a list of activities to avoid in our Health pages I eluded that there is more info and that is just one of the many pages of info you will find if you follow this or the other link I included.

http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

[Elisaandbucky]

In addition to the suggestions you received above from kwalker and Selma (getting all related health issues ruled out and being certain to check if the surgeon you see is an actual Chiari specialist), also ask for a list of activities that you should avoid and follow that up with keeping a detailed pain journal, noting what specific activity/movement lead to the increase in pain. If, as Selma mentions above, you have had an injury - even if you think it was minor - be sure to mention the details of what happened. Good luck on the 9th with your appointment. Another thing that may be helpful for you is having a copy of notes made by previous neurologists/neurosurgeons. Also, keep all previous reports and MRI cds.

[selmaS]

  Hi and welcome to the Chiari forum.

I agree with kwalker in that ALL related conditions must be ruled out, but you also need to research the NS and make sure they are a true Chiari specialist and not just a NS that will treat Chiari...there is a difference.

Since your syrinx was seen 7 yrs ago and you have issues feeling hot and cold with your hands I would say that is due to your syrinx....a CINE MRI will  confirm the CSF obstruction.

Did you have an injury to substantiate the possible injury reported?

We do have a list of Drs to use to research for other Drs as well as threads with info such as questions to ask the NS....http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

[kwalker0004]

First and foremost you want to make sure whoever you see does all the testing to role out any and all related conditions, such as POTS, EDs, tethered cord, and spinal issues as well to check up on the syrinx you may have on your spinal cord. You defiantly want to have a CINE MRI to check out the flow of your csf. I know it is a lot to take in but you have to be the advocate for your own health. I hope this helps some.