syringomelia

[maddmark]

can anyone tell me what they use for chronic pain due to syringomelia.my VA doctors give me nothing that helps and often expiriment with arthritis drugs that do nothing for the pain.

[maddmark]

has out there with chiari been precribed meloxicam for chronic pain due to chiari? whould sure like to know, thanks . mark

[maddmark]

i'm sorry to say that in the VA healthcare system there's alot of red tape and at least where I was being seen,(west haven VA in ct) just plain lazziness. they kept trying to give me mri's in house, as they didn't have an open mri. (I can't be put in a regular one makes me crazy). I told them over and over, but they would give me valium but it was no use . then I would be sent back to my pc which takes months who would send me back to mri, which takes months .you get the picture.after a year or so of this I was sent to an open mri then months later when I saw my pc I asked if anyone had seen my mri , and she said "oh you had an mri" to which I answerd you sent me to it.then she asked me how the pain meds where working, (they had me on 10 mg of oxycodone and 300mg gabapentin per day)so I told her the oxycodone helped very little , and the gabapentin did nothing but make me sleep all the time.her next move was to triple my dose of gabapentin and take away the oxycodone all together and put me on meloxicam which totally upset my stomach and I had blood in my stool, so I called and told her this she said (well i'll see you at your'e next visit) which was two months away. at that point I just got fed up with them and have since moved back to maine to try to get help from togusVA where I was diognosed with sm in the first place. it's taken three months to get an appointment with a NS .as they tell me they are very short handed.the surgen who did the pfd was yogish gamath from I belive boston general , I was told he is one of the best in the country. I had half a dozen people at the VA tell me that if they had to get this operation they would want him to do it.I totally praise all of the people at the boston VA and togus VA.I just hope that the NS I see in three weeks is half as good as them.I know nobody could be as bad as margret becker MD from west haven ct VA.I just keep hoping for the best. thanks for letting me vent .maddmark

[selmaS]

Hi....most with chiari have noticed a relationship of increased pain with weather changes...so u r not alone with that.

May I ask, have u had ne MRI's to follow up on ur PFD?.....as scar tissue can form and cause some of the same issues....

Was ur NS that did the PFD a chiari specialist?

"selma"

[maddmark]

I had post craniotomy for fossa decompression in 04 since then it took me years to get the VA to pay for an mri and the last time I checked nobody had even looked at it yet. I just moved back to maine from ct. because togus VA hospital is where I was diognosed with sm due to chiari malformation, I have extreme pain in my arms and shoulders that at times makes me want to put a gun to my head, but I am catholic so thats out ,but it really gets bad on rainy days I don't know why. it takes months to get appointments in the VA healthcare system, and the doctors change so often. I have had four doctors,and not one of them had ever heard of syringomelia.welcome to universal healthcare. I have an appointment in three weeks with a specialist at togus so hopfuly I can get some help now.

[selmaS]

Hi.

Syringomyelia is a very painful condition and many times it is one that drs just wait and watch as there is not too much they can do, Depending on size and where it is located they may not be able to use a shut or stent to move the CSF fluid.

Were u checked for chiari?

We do have a forum here on MedHelp for chiari and related conditions like syringomyelia.

http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

"selma"