Pain Mgmt Dr

[Missy131197]

I have appt with Pain Mgmt Dr on Mon. What should I expect? Should I make sure and tell them anything special?
Thanks

[selmaS]

  Hi and welcome to the Chiari forum.

Thanks for sharing ur experience with this procedure....and I think the verdict is still out as to how safe this may be or how beneficial it may be, so u pose a great question.

May I ask, do u have a chiari specialist?...have u had surgery?

[Moonbreeze]

I had craniosacral therapy and the electro stimulation for approximately 6 weeks. I found the massage to be an amazing relief from the pressure in the back of my head. I felt wonderful during that time, less headache and sharp pains in my head and great relief for the tight muscles in my neck and shoulders. My posture was also 100 % better.
That was last year.
I have another prescription for therapy again, muscles like a rock!  Even though the previous therapy was fantastic for me, after doing some research I am now questioning the safety of the craniosacral therapy. Even on my prescription for the massage therapy the doctor wrote "Use Precation." Because they use very light pressure with the fingertips at the base of the skull (where my brain is), I am now wondering if this can cause some serious damage or even be fatal especially if done by a therapist that is not certified in craniosacral therapy (or even if pressure is applied a little too hard). Even though it helped me, is this really dangerous?

[fblea]

I didn't know that massage therapy was bad for Chiarians... why?  
That might explain a lot though.  I had started PT about 6 weeks ago and they were doing massage therapy and electro-stimulation in my neck and upper back and developed severe dizziness and weird vision issues.  I did suspect that it was attributed to the electrodes but hadn't thought of the massage being an issue.  Is this forever, or just mostly around the post op period?  Any info/advice is appreciated as I don't want to keep doing things to harm myself (since I can't rely on my medical providers to know what I should avoid since they put me in that predicament)!

[selmaS]

  I am so sorry...there are a few things u can look into...http://www.pcip.gov/
that link is for those without ins for 6 months or longer.....

There r Clinical trials, and from what others have told me, ways to get medicare for an emergency.....http://clinicaltrials.gov/ct2/results?term=sticklers

[linnielou232]

Hi sorry to hear you had to cancel, but wanted to respond in case you get to go.  I am dealing with a pain clinic right now and I was so blessed to have a dr. that know's about Chairi.  You also have to understand that Dr. at these places will test to see what you are taking and look at you to see if you acturally need them.  When I was asked for the 1st time my pain level I was honest and 1 to 10 I felt like a 12.  They tried the shot's in the back of the head which sadly is very costly and it didn't work for me, I wouldn't let them do anything around my neck area which they agreed because I have had surgery.  I am thankful for each day now because this clinic has helped me through some med changes I feel I am now on the right track.  It's just nice to be able to think staight and not be in so much pain.  I hope you can get your insurance or whatever it takes so you can go.  I was at the point I would of tried anything for some relief.  I wish you the best.

[actressmouse]

I had a wonderful Pain Mgmt doc in NY -- a pain NL at the Headache Clinic at Columbia Presbyterian.  Nothing against him, but I didn't get much relief.  This was after numerous med changes and Occipital Nerve Block injections (which only gave sweet relief for 36 hours).  I think the best thing I learned was that he told me that he was "throwing medication at a mechanical problem" which "may or may not work".  Hope this info is helpful...sorry your appt. was messed up by a financial glitch.

[Missy131197]

Well not able to go now!!! Old job was paying for COBRA for a few months and it has not been done yet so I have no ins currently and can't afford to pay so have to reschedule!  This just stinks! :'(
Thanks for all your answers

[Rahe28]

Be honest with them and if you know for a fact what meds help you...you have to tell them straight forward or you will most likely get the med run around...( trying everything that doestn work, before he listens to you). Make sure and tell them of all meds you are already on so that they can make sure that they dont cross meds and hurt you or have ill side effects. I  know it sounds crazy, but if your DR mentions any natural remedies or anything like that, listen and try before you discredit it...I learned this the hard way...I mean really what could an epsom bath do for me? alot actually. Also, make sure that you tell him about your Chiari and to mention that you know massage therapy is not a tool  you can use when you have Chiari, it's dangerous. ..at least in the neck area..also avoid any epidural blocks he may siggest for your neck, as those aren't safe at all for you with chiari. And most of all, most pain manangement doctors see alot of patients and are in a hurry..so make sure you get the time that you need with your doctor. and if they ask you to gauge your pain on a scale...be completely honest ..if your pain is a 10 to you when you wake up...say that. hope this helps some. Let me know if you have any questions.

[selmaS]

  Hi...yes, make sure they know all about ur dx's...and ne issues u have had with meds.

  I have not been to pain Mangmt so not sure what u might expect...but, it is good if the Dr is well informed on chiari and related issues.

  Good luck and let us know how it goes

       "selma"