First NS appointment

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First NS appointment

Postby letmegethemdigits » Mon Oct 03, 2011 5:10 pm

So I have my first appointment with a NS on Thursday October 6th. I am curious of there are any questions that I should be sure to ask when I see him. As far as I know I have just SM with a syrinx between C5-C6 that measured 8mmX2.3mmX2.4mm. Getting the appointment with him happened so fast and I am a little overwhelmed and scared and have so many emotions going on right now I can't even think straight... Any help is greatly appreciated. Thank you so much!

~Kristin
letmegethemdigits
 
Posts: 6
Joined: Tue Sep 20, 2011 3:03 am
Location: Sacramento, Ca

Re: First NS appointment

Postby Janice » Fri Oct 07, 2011 2:22 am

Hi Kristin & Welcome!

I'm sorry no one got to your post before your appointment, however I hope it went well. For more info on SM, you can check out the main ASAP page under Syringomyelia. The more you know about it, the less difficult it will be for you to speak with any specialist about. There are a lot of docs who believe that small syringes don't cause pain, or neurological deficits. Actually, size doesn't matter. Push until you get the help you need.

If you're suffering with excruciating pain, seek help from a pain management specialist. If you describe the types of pain you're experiencing, a PM doc will match the med to the pain type, which should offer you some level of relief. Heat and/or icepacks can provide limited relief as well, but this is temporary.

I wish you the best going forward, and hope you find a team of docs that will work best for you.

Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Location: Escondido, California

Re: First NS appointment

Postby letmegethemdigits » Mon Oct 10, 2011 4:47 am

Thank you! The appointment went alright. He said that he doesn't think that the syrinx is causing the things I have been going through. He did order a new cervical spine MRI and and MRI of my brain. He did say that he found it odd that no one had done a brain MRI yet. I am going to see about going to see another NS after my MRIs are done. However over the last 3 days I have had a new symptoms of not being able to tell when I need to use the restroom until it is almost too late. I let my doctors know so hopefully they can figure this out soon.

I will look into the pain medicine specialist and see if they have someone like that that I can see through my insurance. That would be nice. My regular doctor and I are trying to find a combination that works, but so far nothing that helps enough to where I am not in extreme amounts of pain every day. I have been using heat and ice lately, but like you said it is temporary. It is nice at the time, but almost instantly backfires and sometimes when it wears off makes it feel worse.

Thank you for taking the time to reply! It means a lot to me. I feel so alone at home sometimes and it's nice to know that I can talk to people who understand what I am going through.

Hope all is well with you! Again, thank you!

Kristin
letmegethemdigits
 
Posts: 6
Joined: Tue Sep 20, 2011 3:03 am
Location: Sacramento, Ca


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