PAIN MANAGEMENT CLINIC

[cfinniss]

Has anyone who has battled with chiari gone to the Pain rehabilitation Clinic at Cleveland Clinic, OH?  i had my first decompression in Jan. 2009 and symptoms just about all went away only to slowly start reappearing several months after the surgery.  I had to go back to my NS and he did more MRI's and said the Spinal Fluid was being obstructed again but they did not know why.  So i went to see Dr. Benzell at Cleveland Clinic because he was listed on the Chairi site as a Chairi specialist.  He is not sure a second surgery will help me and wants me to go to Cleveland Clinics pain rehabilitation clinic and i would have to stay out in Cleveland for a month and find a place to live and it would be too expensive.  i was just wondering if anyone has been to that clinic and if it helped?
thanks for your help
Cfinniss

[Roy902]

Yoga was one of the things that I did get some relief from; another thing that we were introduced to was meditation.  We watched tapes from the Cleveland clinic and there was wonderful results.  WE were assigned personal counselors or physicologists / shrinks ? my spelling might not be exact.  that we saw at least twice a week one on one.  WE stretched from head to toe and then went and iced down every morning; had classes went to lunch.  some type of streches - meditation - yoga and ice down  and then classes plus exercise.  it was walking stairs, walking, stationery bicycle all set in time, adding minutes or stairs each week.  It ws based off your initial evaluation; you had a personal physical theparist as well that you went to during the day at least once.

  There was a lot of down time it seemed to me.  Way to much down time sitting around after you did your exercises in between classes or waiting for your physical theparist or counselor or shrink.  

You did learn how the brain works and deals with pain; I did learn a great deal about the human body; the physical theparists were excellent!!!  I commend them for the knowledge that they have.  Both had been in the buisness for a long long long time.  Just a lot of down wasted time doing nothing in the schedule.  

Total in my group was 5 and one dropped out as he would not give up the narcotics.  There was just no way that he could - he had to many issues.

[cfinniss]

Thanks so much for your response.  i was supposed to go to Cleveland rehabilitations clinic in Nov. 2010 for my evaluation to see if i was a candidate but I cancelled it because even if i was a excepted into the program i did not want to pay the expense of living out there for a month on top of food expense and what ever my insurance did not cover for the treatment/s.  I currently take Ibuprophen 800 mg 3 times daily and 2 - 50 mg of tramadol 3 times daily for pain and inflamation and then 2 - 10 mg of flexeral at bedtime to relax my muscles in neck, shoulders and jaw area so i can sleep.  other wise i do not sleep well at all without them and am miserable.  this pain management so far has worked for me.  i am still in pain but no where near as i am without the meds.  Tramadol is not considered a narcotic but you can become dependent on it which i am dependent on it.  without it i am in a tremendous amount of pain and cannot functions daily.  i want to be off the meds so that is the reasoon i was considering the pain rehabilitation clinic, however, my docs - Neurosurgeon, Neurologist, Internest and GP feel what i am taking is ok if it is helping me to function daily.  they do not feel it is bad to be on the meds im on as long as they watch my liver and kidney counts to be sure i am not suffering any damage to them.  I was thinking of going to the Spine and wellness center that is in our area as they can help with pain management using biofeedback, massage, PT, even accupuncture or whatever they feel would help me and then maybe i can wean off some of the pain med tramadol and lower the Ibuprophen intake also.  
i appreciate you taking the time to answer my question and your experience with it also.
cfinniss

[Roy902]

I have not been to that one; however I have been to one that is very simuliar located at the Nebraska Medical Center in Omaha Nebraska.  

It lasted the same amount of time; the cost of the course monday through friday was $15,500.  I lived close by so I did not have to pay for lodging and food  on top of that.

The reason I know is that the Program was mentioned several times during my time at the med center and these two are the only ones in the united states at this time that are running currently like they are.  The one that they want you to go to is older so to speak than the one in Omaha by a few years.

My experiences at the Med center was this turn in all your meds or you are out of the course period.  If you are on narcotics they will slowly with draw you from the drugs that you are on.  If you relapse, then you are out of the course period.  That was the way it was at the med center.

I wanted to be rid of all meds; I was able to get rid of all but topomax and lasted that way till last month.  After enduring migrane headaches I finally went to the ER and had blood pressure of 176/116 and the ER doc said that I was flirting with disaster and it was a good thing that I came in.  People with chiari can have blood vessels break in thier brain and have real troubles.  

So a couple of shots in the buttocks later I was released and with 2 different meds.  So you can say that I failed the pain managment program and it was a good thing that I did.

It was preached that one does not need medication and it can be dealt with in other ways.  They were so wrong.  Just my experinces.

I wish you the best of luck.


P.S. I am yet to have surgery and my herniation is at 3 cm as of the mri last spring.