Chiari Malformation - Online Support Group

We are patients and survivors of Chiari (types I-IV), here for your support.

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PAIN MANAGEMENT

A forum to discuss what has worked for pre and post surgery and any issues related to Chiari pain.

Members: 33
Latest Activity: on Wednesday

Discussion Forum

HOW DO I FIND A NEUROSURGEON WHO IS FAMILIAR WITH CHIARI MALFORMATION AND SYRINGOMYELIA?

Started by Carol M. Dexter. Last reply by Vonda Gardner Apr 10. 3 Replies

 I LIVE IN THE PACIFIC NORTHWEST (MONTANA) AND NEED TO FIND A DOCTOR WHO UNDERSTANDS WHAT HE SEES ON THE MRIs.  I HAD SURGERY IN MARCH, 2010 BUT SOME OF THE SYMPTOMS ARE BACK AND DESPERATELY NEED TO…Continue

muscle relaxers

Started by Susan J. Last reply by razzle51 Mar 28. 1 Reply

I am new to the pain management group.  I am curious how many people take muscle relaxers and if so how far post op are you? Did they offer any relief? Which one?Continue

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Moderator
Comment by mary anderson on Wednesday
Thanks Mrs Grampus. I'll give them a call. I'll try anything st this point!
Comment by Mrs. Grampus on Wednesday

Mary I go to Dr. John Sampson at Duke university medical


Moderator
Comment by mary anderson on Wednesday
LOL. That was supposed to.say pain management 'doc'. I re read my post n my phone substituted Dick. What I could say about that but it truly was a 'auto correct'

Moderator
Comment by mary anderson on Wednesday
Sigh. Why does my computer hate me. I just tried to post here n it took it away:( anyway the jist was I have tried every med mentioned here to no avail. I had a temp neuro Stim placed by my pain management Dick who apparently had not done one in the cervical area prior to mine but had a supervising doc who supposedly had done 'hundreds'. However this is done without any anesthesia except local on the skin incision itself. However he had to make channels under the skin on both sides to place the leads. The left side was bad but when he went to place them on the right side he met resistance n kept pushing. The other doc said to stop if he was meeting resistance he was trying to push thru muscle. I was screaming in tears which is not like me st all after eveything I've been thru. They had to stop my husband who heard me out in the waiting room.
This was the last option at the pain clinic. I'm certainly not going for the permanent implant.
I went for my physical at my.PCPs office n tried to ask him about a Chiari specialist,all I.got was the NS should be able to help me. Arghhhh. The NS thinks I should be 'fixed'. After all he did 'the surgery' in 03.
Help I live in the Triad of NC. If Anyone can offer a name of a known specialist I would be more than grateful. I'm between a rock n a harder place at this time. Ever since the Stim was placed n removed I've had worsening neck pain. After The little bit of sleep I'm sometimes able to get. I can't move my head without extreme pain n difficulty turning my head at all. My neck has become weaker than it already was. I need a doctor who truly understands the entire picture!
Thanks for any help or suggestions!
Comment by Michelle on March 8, 2012 at 6:55pm

 Have any of you tried Nucynta? I just started it a month ago and it seems to be helping quite a bit. I still hurt, but it is so much better then it was with Percocet or Loratab. I also take a muscle relaxer at night before bed. I just am trying to plan for my surgery in 2 weeks and get things arranged now.


Moderator
Comment by TracyZ on February 28, 2012 at 8:55pm

Thanks Renee!!!

 

I even had a Medical Attorney friend who said his clients have terrified him with Abalation stories.

Comment by Renee on February 26, 2012 at 12:40am
Hi Tracy, Thanks so much for the info. on Abalation. My husband had
Read about it in medical journals ,but no patient feedback. So
We will be sure to miss this procedure. I am so very sorry that
You had to endure that. Hope you find some relief .
I will remember you in my prayers
Renee

Moderator
Comment by TracyZ on February 23, 2012 at 8:46pm

I suffered with Chronic Pain since 7/10/2001 & have tried every pain medication with all possible combinations.  Now I take Tramadol 100 mg & Klonipin 1 mg three times a day. Then 75mg amitriptyline & 100 mg of trazadone at night . I have used opiods , but chose to stop because they ruined my sleep patterns. Six weeks ago I had abalation on C3, C4 & C6. Abalation is where they use radiowaves that are 80 degrees, which is above boiling for radiowaves to burn the nerve endings and thus stop the pain signals. It was torture on already inflamed nerves. Please never even consider this.  It's like being branded from the inside out. The worst part is it has pushed my recovery back to right after I had my CM Decompression surgery. It is very depressing. Having to feel like this again. Just please think long and hard before you have abalation therapy. The pain dr. wanted me to take Methodone & Percocet for breakthrough pain , but it made me so sick. He changed it to Morephine with percocet. My pain is much worse after the abalation & I never thought that would be possible.

Comment by Renee on February 8, 2012 at 5:34pm
I know that Vicodin works for alot of people but some of us are hyper-sensitive to it & it can cause headpain & even nausea.
I use Oxycodone for breakthru pain & Opana sustain release- on a daily basis. This with my other meds keeps me ok, good days, bad days. One thing you may have to learn ( trust me this comes from a total OCD clean freak) is how to let the cleaning not be a big thing.
Rest is going to be your friend. Good luck, the med thing takes a lot of testing out to see what works for you.
Take care
Renee
Comment by sharon kenny on January 18, 2012 at 4:25pm

my pains are so bad i feel like my brains exploding out of my head, then i go all weird in the head and the pressure pains down my back is like being in a pannini press. M neurosurgeon has give mt amitriptylene to take at night. they took the edge off my head but not my back, shoulders and now my headaches are getting bad in the day wish i could remove myself from this body.

 
 
 

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