Attention Butt Club! Syringomyelia

Discussion in 'Fibromyalgia Main Forum' started by AlaSnoopy, May 22, 2003.

  1. AlaSnoopy

    AlaSnoopy New Member

    Well I guess I found out why my tail bone hurts! The doctors have called me and they said I have a disease called Syringomyelia. I finally thought I had grip on my Fibro, and I guess that explains why the Fibro had been kicking my butt here lately! I have syrinx and I am going next week for a Lumbar Puncture Test to see what the pressure is on my brain. We thought I had compressed nerves. Well I do, but I guess I have this too! Damn it just seems to be getting worse. This is just getting to be too much and so overwhelming! But I thought I would let the Butt Club know that I least I found out why butt was hurting so bad. They are going to send me to a Pain Clinic, the family doc doesn't want to deal with the Pain Meds any more. So he is transfering me to a pain clinic next week too. Well I just wanted to share this information with everyone, and vent. Thanks for listening! Snoopy!
  2. kredca4

    kredca4 New Member

    Have you had other test run first? They do MRI's, and CT also, I would opt. for doing thoes first, before the Lumbar test, or a Meylogram. I know they are necessay, but sometimes the answers are in the Simpler Test's.

    Beside's it's a well known fact that I am a Chicken.

    BTW, for thoes who want to know, Syringomyelia is a disorder in which a cyst forms within the spinal cord.

    I read a lot about Cyst's these day's, I have a Digital Mucus cyst on the pinkie, and it's getting bigger darn.

    Then I have just discovered that I had a dx for Mastiod Disease, one of which is a Cyst that builds up in the ear. It's called Cholesteatoma. That's not for sure, but it's the one in the lead so far for Mastoid Disease's.
    So I have to have some Tests run for that as well as another Cervical MRI.

    I have a History of cyst's, so I'm not to surprised if I do have one in my ear, I have been having problems for over 2 years.

    Good Luck, they can treat this, have you done some research on this yet?
    I like the site at National Insititute of Neurological Disorders and Stroke, you can find that link by typing in the name of Syringomyelia in your search engine, a lot of other sites will come up also, but this one I have used before for other Problem's I have, and the Information is really good and easy, Ha! lol, to understand.

    God Bless You
    kredca4/sharon
    [This Message was Edited on 05/22/2003]
  3. epicurean

    epicurean New Member

    How did they discover this?Can you feel it?I am a major butt club member!!Have you had Cat-scan or MRI?Don't mean to be nosy,just wondering.I have been having unberable pain in end of spine.Hope to maybe get epidural on next visit with pain manag. Dr. next week.Is so bad this past few weeks that even water PT makes it worse.Please consider having MRI before doing anything else,(you know us ex-nurses,will recomend but don't do what we preach).Good-luck!!
  4. pam_d

    pam_d New Member

    Sorry you have this to deal with, too, but at least sounds like you are gradually getting some answers! If you haven't had a lumbar puncture before (or maybe this is old news) be careful to follow Drs instructions to the letter, especially about laying flat afterwards----to avoid the major headache that can be assoc. with this test. I lay there twice as long as they said to (the room I was in at the hosp. wasn't needed immediately) in fact; never even had a slight headache afterward. Also, drink something containing caffeine when you do get up, even if you normally avoid it---this is one time when it helps!!

    Good luck & I hope they have a treatment plan for your "butt" so you get some pain relief!!

    Hugs,
    Pam
  5. AlaSnoopy

    AlaSnoopy New Member

    I had an MRI with contrast that was the way they found it for sure...I guess they thought they saw somthing on my regular MRI's. I live in a very small country town, and our MRI's are not quite up to par, but my neurosurgeon is in Chicago, yes I travel from Alabama to Chicago...another long story! He ran an MRI with contrast this past month to confirm something else and we where all totally blown away when the syrinx showed up on the films. I totally trust this doctor. He is not one to jump in and cut you up...he is very concersative! Anyhow I am going probably next Thursday for the lumbar puncture test. I have read up on SM (that is the abbreviation) and only like 21000 people have it and there are two types...first type is related to Chiaris...I don't have it...the second type is just related to the syrinx in the spinal cord...that is what I have. When you start reading the info on the net they all start talking about the Chiari aspect of it, due to the fact that is the most popular. The down side from what I have read is that 50% of the surgies don't work, the patients have to keep having surgery over. What I don't know is if that is all people with SM or once again is that just the people with the Chiari aspect of it? Anyone out there who has any information on this DD I would greatly appreciate more info on it. You can also email me at my email address want2no@alaweb.com and just put in the subject SM and I will no its ok to open it! Thanks for all your help too! Snoopy