Very frustrated

[candy0722]

I went to see my Neurosurgeon on Friday. He viewed my recent MRI and said everything looks fine and there was nothing else he could do surgically. I feel as if I am back to square one regarding pain. I am constantly hurting in my arms and legs. I am also very sensitive to cold. He acted as if I was making this up. He referred me back to the pain management clinic. This is really frustrating. It seems as if we Chiarians are all alone.

[selmaS]

  Hi.....NL= neurologist...NS= neurosurgeon.

Sorry we do use a shorthand... abbreviations that we r soooo used to, forgetting that some newbies may not be aware of them.We do have a Page in the Health Pages where u can get a list of all the abbrevs we use.http://www.medhelp.org/health_pages/Neurological%20Disorders/Acronyms-and-computer-short-hand/show/509?cid=186

  It is so diff to get drs to listen and really hear what we tell them...they go by what they read in a book and not what their patients tell them...that is what is sad.

   "selma"

[candy0722]

The pain I am experiencing is daily. Some days are better than others. The pain in my legs is a new symptom. All I know is I am not making this up. Ok now tell me what type of doctor is a NL? I have never heard of this until I joined the group.

[AGusnard6676]

I agree with gettin a second opinion.... The first neurosurgeon I saw as this us common an about one out of 3 people have a "droop" in the base of their brain.... I left there so furious and he sd it won't get worse.... I did so
E research and found a wonderful NS in my area and she was very informative. She did the CSF flow study an actually the chiari IS a little worse and there is fluid restriction so we will e setting up my first surgery tomorrow..... I am a huge fan of second opinions.

[selmaS]

  Hi...how often do u get this pain?....Is it a daily, constant pain?

It is common to have symptoms flare as we heal, but if it is new or worse the Dr should look into what could be causing it.....

  And it is possible u sustained nerve damage as a result of the compression.

  Finding a good NL is a great way to get to the root of this issue...I wish I had a list of them as well....

  Keep us posted
    "selma"

[candy0722]

Thanks everybody

I had my surgery 08/10. After my surgery, I felt a lot better. About a month or two later, I started to have pain again in my arms. Now I also have pain in my legs and toes.
he didnt see anything on the MRI but I am certain that something is not right. Does anyone know of a NL in Louisville KY? Does anyone have these symptoms ?

[selmaS]

  Hi...can u refresh us and say how along post op u r?

Depending on where u r time wise can make a diff....and if this is new pain....or worsening pain than b4 surgery....


  It is not right that the NS lets us down like that, but, if what u went to him for is healing and he can not see an issue...then u need a NL to find what it is and DX it....the NS does not do that.

DO u have a NL that knows chiari?

  "selma"

[lydelia]

Ditto to what epsion22 says. You need to go and see someone else, if for no other reason than to get a second opinion. Your health care is ultimately your responsibility. If you aren't getting the answers you think are right from someone, then go to someone else. Make sure the next person you see is a Chiari specialist, not someone who just does the surgeries. If the person who you just saw is a specialist, go and see another one.

And epsion22, i second your punch to the face with a kick to the crotch. lol

[epsion22]

That ***** when someone you expect to provide you options, have none. This may very well be the case, but perhaps you should get a second opinion from a chiari specialist. At this point, I would not leave a stone unturned if you dont have to.

At the end of the day he may be right, or he could be wrong. But its always good to double check.

I was thinking...Chiari really bites, i wish I could punch it in the face...