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Avatar universal

After first neuro consult

Hi all! I went to the neuro yesterday (not a chiari specialist-first neuro I've been to). He said to ignore he fact that I have chiari because my problem is my posture. He wants me to go to a special PT because my symptoms are caused by cervicogenic vertigo not chiari.  I called my original doctor to talk to him but I know I want a second opinion. This doctor was arrogant and was telling me-not asking me what my symptoms were and where I felt pain. Help!
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620923 tn?1452915648
COMMUNITY LEADER

  Good Luck and keep us posted
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Avatar universal
Thank you so much everyone! I have PT today and I'm going to talk to him about all of this and possibly discontinue PT. I have an appointment with a neurosurgeon who specializes in chiari on November 1 so hopefully I will have more info then!
Helpful - 0
2 Comments
That's great you found  someone.  Are they local?
The neuro is at KU! Hopefully he knows what he's talking about and will help! I'll keep you all posted and thanks!
620923 tn?1452915648
COMMUNITY LEADER

  I really believe that the PT tech is not familiar  with our issues and is not using the right exercises/stretches...I had PT at one point too, and it made me worse too....I later found out some of the reasons why but my questions were and continue to be why didn't the PT tech see what was going on....why didn't they recognize what my issues were? This was b4 my decompression surgery, but it was EDS related....and something I feel the PT should be aware of. Luckily for me I never went to PT post op and my surgeon said it was good I didn't as it would have made me worse.

We have to listen to our bodies....
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Avatar universal
Thank you so much for your advice Initwithyou! I don't want surgery unless it's the last resort and I'm open to PT. I just didn't want to be discounted by the doctor or to be told what my symptoms were when I didn't have those particular symptoms. Thank you for the doctors name!!
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2 Comments
Just be careful with the PT. Remember it's your body and you have to live with it afterwards not the therapist or the doctor.

Everyone is different of course so our experiences will be different. In my case PT is what caused my symptoms to sky rocket. Based on my experience and what happened I would never say PT is the first answer. In my experience it is many times the doctors answer when what he/she really means is "I don't know but you need to believe I do so lets do something". Biased rather strong opinion obviously but it's based on my personal experience.

Not trying to scare you. Just saying remember it's your body- if something they want to do doesn't feel right stop them immediately.

CW
I just read this today (10-12-16) and I came to the site today to ask if anyone had problems with PT! In the 2 weeks I've had PT my symptoms have gotten worse-I have less good days than before! This last week I've only had 2 ok days and that's not ok! The other days have been horrible! Thank you for telling me your PT outcome because I think I'm having the same problems!
Avatar universal
There is some wisdom in what the neurosurgeon told you.  There are several different types of Physical Therapy that might be able to help you.  CranioSacral, Myofascial Release and Postural Restoration are some that come to mind.  These therapists are specially trained.  I just sent someone who had Chiari symptoms to neurosurgeon who deals with Chiari.  She told him his symptoms are definitely from his large syrinx of the cervical spine but not to do surgery until he really can't handle it anymore as there are no guarantees and its a big surgery so not all Chiari should be surgical.  I have had two surgeries as the first surgeon didn't really know what she was doing.  A second opinion is always a good idea.   Another surgeon that will look at your MRI and medical record is Dr. Heffez from Wisconsin Chiari Center, Milwaukee, WI.
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6384874 tn?1385429806
Oh I'm sorry you had that response.  I got similar responses when I went to drs locally.  My suggestion would be to keep searching for the right dr.  Did you get a copy of you MRI (the disc and report)?  If not, get them and take them with you.  
I hope you are feeling good today,  despite that appoimtment.
Helpful - 0
5 Comments
Yeah I wasn't thrilled yesterday. I was so frustrated with that doctor. I kept telling him no I don't feel pain (in the areas he pushed on) but he didn't listen to me and told me I did! At that point, I stopped listening to him. I did get the DVD of my MRI so I will definitely have that with me!! Thanks and I'll keep you posted!
Have you had a chance to check into any of the Dr's that are specialists?  I know you can send your info to some of them and they will give you a consultation over the phone or internet.
I didn't know that! I will definitely check into that! Thank you so much!!
Dr. Greenfield (in NY or NC) is one that will do that.  Hope it helps!
I just sent you a private message.  :)
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