went to NS today lots of ????

[lor124]

I went to the NS today found out she does many decompression surgeries a week so I guess you can consider her a specialist. I have many questions of this forum after this visit. We spoke about the chiari 0 I have and she said we could do the surgery but she said that usually people who have less than 9mm herniation don't respond well to the surgery. She said that surgery probably won't relieve all or most of the symptoms so she said we really need to look at the ones that are causing me the most trouble and see if it would be worth going through the pain of the surgery if its not going to give me relief. I asked her about the Cine MRI I read alot about on the internet and she said that CSF flow blockage is interesting in itself but not a true test to diagnose symptoms to chiari. She said an ENG is a better test to determine if the numbness is from chiari or if its from elsewhere in the spine. Has anybody heard of that?? She also said that the herniation doesn't ever get bigger. I told her of I think it was lovemygirls whose grew almost twice in size in just a few months. She said that wasn't normal so she must have had other issues that caused it to do that. I aslo told her that most days I feel like I've been hit by a truck. She said Chiari doesn't cause body pain it only causes pain in the neck, jaw and shoulder area and of course headaches. She said more but right now I can't think of all of it. Anyway I have my ENG scheduled for the 26 of Jan and on the 30 we will decide if surgery is necessary. I'm very confused...

[selmaS]

Sorry, but my opinion is...she is a NS that does alot of chiari decompressions, but is not up todate on what is what.Doesn't sound like a chiari specialist to me.

I would suggest another opinion.....ur in Chicago?....try Dr Frim...he is supposed to be very good...or better yet mail copies of ur MRI's to Dr Oro's office....maybe he can give u another opinion.

Again, this is my opinion...I hope some other's chime in.
Good luck

"selma"

[Shane99]

I agree with selma. You should get a second opinion.

[lor124]

I was going to go see if Dr Frim would look at my info unfortunately I don't have but 1 MRI of the brain and c spine. All the other info is just from the headache clinic and the ENG I'm having done. What do you think about what she is saying. I value your opinion. Have you had an NS say anything like this to you.. Do you agree with the pain thing??? What about the herniation not growing?? If it doesn't grow what makes the symptoms worse??? I'm really curious since everybody on these chiari forums have quite a bit of pain. Most have been diagnosed with fibromyalgia and that's quite painful.

[youngwife]

Hi!
My name is Rebecca, and I am mom to Rachael, whom is 14 and lives in daily pain from Chiari.  Chiari causes pain.  The idea that it does not is utterly ludicrous.

[youngwife]

Hi, I wanted to re-post a corrected post.

My suggestions are:

Do tons of research.  And I mean TONS!

*IF* you would like any recommendations, please feel free to message me, and I will be glad to share them with you.  

Blessings to you,

Rebecca
Mom of six wonderful blessings....one of which is an amazing young lady, whom lives with Chiari, Syringomyelia, Psuedotumor Cerebri, Central Hypothyroidism, and a mild Scoliosis.

[Shane99]

You asked what did I think of what she's saying - I think she's not a Chiari Specialist. You need to talk to a Chiari Specialist Neurosurgeon. If she is one (which again, I doubt) you need to go to a different one.

I suppose by technical definition, Chiari may not cause pain, as there are no nerves in the brain to feel pain, but it causes many other neurological issues - and some of them can cause severe pain.

Generally, the tonsillar herniation extending into the spinal column is what starts causing the majority of problems, but Chiari "0" can cause some all on it's own.

I think what she is trying to get at by saying herniations don't normally grow is; generally a person with Chiari "0" may never realize it. But sometimes something happens (like head trauma) that cause it to "kickstart". This isn't the only way for it to start growing, but I guess "normal" is a relative term.

As far as the ENG thing; as far as I know an ENG is used to check for balance, dizziness, and vertigo. I'm unaware of any connection to numbness taken from that test.

Have you seen your MRI's? Can you see a herniation?

And I think you for saying you value my opinion. But please don't take my word for anything, I'm not a health care professional - always like to get that disclaimer out there. :)


Oh, and -  Hi Youngwife. I haven't seen much of you lately.

[sherimom]

I'm sorry you're going through this, it's really tough but there are a lot of very knowledgable people on this site - so you found a good place.
My son has Chiari type 1 - 17 mm herniation. He is scheduled for surgery on Monday.

I found his doctor after seeing the Chiari institute in Milwaukee mentioned on here. I did a LOT of research and we saw Dr. Dan Heffez. I am posting a link to his website, which lists the multiple symptoms associated with Chiari. If you poke around the website some, you will see all the research that he has done regarding chiari, spinal stenosis, etc....and how similar symptoms are to fibromyalgia. I know there is a well known specialist in Chicago and someone mentioned his name already.....but you may want to check the info on Dr. Heffez's website, just for info purposes. I feel very confident with him at this point to do the surgery. (I suppose that's good since it's coming up fast!)
The link is to the specific page, hope it ishelpful

http://www.wichiariinst.org/oth/Page.asp?PageID=OTH000006
(if for some reason it doesn't work, type in Wisconsin Chiari Institute - look under chiari, then there is another link for chiari under that one, where you will find the list)


I was diagnosed with fibro a number of years ago and it has been, fortunately, in remission for quite some time. But I now question, after reading that information, if my narrow spinal canal is causing the symptoms that occured following a car accident. I may go and get it checked in the future.

Good luck and remember to trust your instincts. If you aren't comfortable, see a different specialist!