Chiari Online Support Group

First NS appointment


#1

Hello everyone!

Yesterday I saw a NS, who is also a neurosurgery professor. I was plesantly surprised about him. He seemed very sensible and down to earth. My mom thought he would be arrogant, but he wasn't. To my surprise he wasn't dismissive of Chiari. To no surprise he said, he would only preform the surgery if he is absolutely sure the Chiari is the priamry cause to my symptoms. I absolutely understand that. What I didn't find comforting, was that he put all of his trust in the cine MRI. If that would show a disruption of csf flow, he would preform the surgery. I also understand that, becouse the purpose of the Chiari decompression is to restore the csf flow.

I asked him about my back pain that I get 8/10 times when I lay down. I said I got an x-ray and there is everything ok there. He said " of course there's notheing there!" He was pretty sure the back pain was due to the tonsil pressing to the spinal cord or brainstem(whichever part that is).

I didn't describe my condition as well I would have wanted. I started with the wort in my opinion, that I'm so tried and my muscles are so weak, it's hard to go to the store or do any basic, small things at home. I thought I explained myself well, but to my surprise the dr later still asked: "Do you work or study?" Then I explained, I do none of those, because I barely move. When I was seeing a neurologist, she asked me if I work or study in my 2nd appointment with her. The 2nd time I tell her how bad I am, she still has no idea. After I said, I do nothing, absolutely nothing, she responded:"oh, then you're a *latvian equivalent to housewife*." Was she even listening? I can barely move and she still thinks I clean and cook! This just shows how everyones perception differs. I need to find a better explanation of how low my quality of life is, because the best I have now still doesn't deliver the message to those who haven't been there.

I will take the cine MRI. Maybe it's more useful than I think. Either way, I'll probably see another NS. If the cine MRI seems fine, I'll go to to every specialist I can think of to find if there is anything else. And if they won't find anything, I'll maybe push for Chiari decompression. I really can't imagine being like this for the rest of my life. Because this doesn't feel like life. If there is something that can improve my condition, I'll find it. I have no doubt of it.


#2

I’m so glad that your NS appointment went well. I can understand how hard it is to explain how you are feeling to someone who has never had to live through a condition like this. They just don’t seem to get it. I hope this NS can help you. It’s so hard to keep going from doctor to doctor telling your story over and over again, but we can’t give up!
Kelly


#3

Fugu, take the positives from this appointment. You met with a kind and sensible specialist who didn't immediately dismiss your concerns. Go with it, see what his proposed investigations reveal and take it from there. You've come a long way with just this one appointment, I am so happy for you.

On the quality of life description, maybe look to see if you can find a QOL questionnaire online that you could complete. There are many, often for specific conditions, but my thoughts would be if you could find anything that covers your main inabilities, just print it out for your next appointment. Doesn't matter what the title says, it's a vehicle which helps you communicate the impact of whatever is wrong with you on your life. We all falter sometimes when 'on the spot' in a consult so any tools like this can be really helpful to be able to handover.


#4

Hi, Jules I just want to say the QOL questionnaire is a great idea.I would have never thought of that.
Thanks!

Kelly


#5

Thank you both for replying!

Thanks, Jules for the suggestion. I didn't know there were tests like those.


#6

I could have kicked myself for never suggesting QOL questionnaires here before! I have to fill in a long one (I think it's something like 10 pages) every time I see my rheumatology consultant and whilst I think it's pretty boring and repetitive I do see that there is value for her in knowing whether, from one appointment to the next, I can button my own clothes, cut up the food on my plate or feel self-conscious in public because of my skin condition.

If either of you find something that you think is particularly suited to Chiari/symptoms of Chiari then do feel welcome to start a new discussion with a link. Wouldn't it be good to be able to put something together here that everyone could use?


#7

Fugu, you're good at finding things on the internet .... there is something mentioned HERE that Dr Oro was involved with developing.


#8

I'll post if find something good for Chiari. It looks like the dr Oro's work is ment only for physicians. There are links where physicians can ask for the form. I don't think it's available for patients.


#9

Fugu, I have the same issues with my back. It took a few years for me to realize I needed to see what my lower back looked like. My primary dr ordered a LUMBAR mri, with and wo contrast. I found the answer to my pain! Have you ever had an MRI ordered for your lumbar?? If not, I think you will find the reason for the pain. How old are you (if you dont mind me asking)


#10

Hi, Becky! What is your pain like? I get sharp pain that starts at the lumbar part, then slowly moves up and radiates in my ribs. It feels like the pain is inside of my bones. It lasts only for a fwe minutes. But I can't lay or sleep on by back, because then I get lumbar pain, but it's somewhat different. I also get tension pain in my back muscles when sitting or wakling.

I haven't had a lumbar mri. What did yours show? I didn't think I needed one, because the NS said, the Chiari explains it and as I recently found out, Chiari related syringomyelia mostly occurs in cervical spine.


#11

i just found out that i have this, and my marriage is struggling because i cant explain this to my wife. Im in the process of finding a neurologist in my area. But my wife has already threatened to leave before we fou d out i have this. Sge gets so mad at me because she thinks in going crazy… Anyone know of a website with information on this


#12

Hi, @Vette1811! Sorry you aren’t getting support from your wife in this difficult time. There is a website conquerchiari.org that you could check out. They have a great pdf file of chiari overview that you could show your wife. Maybe that will help.

Maybe you can also find some stories here, and show her. Chiari makes life difficult for everyone involved, but it can get better. Before my surgery, I thought that my life is over, that I will never be functioning again. I was so tired, that sometimes I wasnt sure if Im awake. I thought, that because of noone understanding, and having expectations from me, I would eventually collapse on the street and be hit by a car or something. Now, I still am weaker than others and still have some symptoms, but my mormal abilities are back. I’m studying and soon will be looking for a job. So hang in there, don’t waste your energy and try to use it for productive things. It can get better!


#13

thank you so much, i also found out this morbing a good friend from high school has CM and had the surgery, im going to try and talk to her about her journey through this and maybe she can shed some light on this whole thing. Tha ks again for your help.