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Thread: Important warning!

  1. #21
    Senior Member
    Join Date
    Feb 2002
    middle of nowhere

    A Question for TD

    Since I saw you here thought I'd ask your opinion of the San Diego V.A. SCI unit. My region sends me to Milwaukee if I ask for V.A. help. It's a long ways from home though the V.A. will fly me it's still a hassle having to drive 140 miles 1st to the Airport in Rapid City. I found the one in Milwaukee to be excellent in the Dr. and R.N. category, but most employees complained about the lack of help and outdated equipment due to lack of money. I also found the nurse to patient ratio to low on nurses and aides and the facilities in need of repair. The PVA reps investigated several complaints. I do find it a comfort knowing that the staff knows what A.D. is along with our other miscellaneous quirks but I think the politicians need some incentive to give the bank account a transfusion. Maybe with the new patriotic mood of the country they'll get some funding.

    Again MG I hope all goes well for you!

  2. #22
    syringomyelia, What exactly is this and how likely are we to develope it. How common is it according to statistics. According to the reading i only know that it is scar to tissue that keeps on forming all the way up to the brain stem. Never heard of scar tissue doing this?
    Thanks: {Art}

  3. #23

    There are many sites on syringomyelia if you google search or carecure search.

    Here are a few: syringomyelia/syringomyelia.htm


  4. #24
    This is a worthwhile warning for sure. In my case I have had the syringomyelia for a long time and couldn't get the DOCTORS to look at it despite my many many efforts. I finally demanded the MRI and paid for it but only after years of symptoms. So while this is a worthwhile statement I truly believe that the healthcare professionals ( and I saw MANY over the 13 yrs I have had symptoms) need to also take a few lessons from patients like myself. While every patient should be responsible for all these aforementioned things, there is also some owness that health care professionals should take for the educating their patients about where to find the resources and what they need to do. In addition, I have found that many professionals experience empathy fatigue and need to be reminded about the basics of patient interviewing. This may also go a long way in getting patients involved in thier own treatment. They need to feel that their health is indeed a partnership with the healthcare providers and all too often patients are given the brush off because the professionals are too busy or just can't be bothered to provide the information or the maintanance. Not all the flaws of the state of the healthcare system fall at the feet of the patient. Patients often try HARD to get what they need and it falls on deaf ears. When this happens patients often don't know what or where to turn and many end up in worse shape after years of this kind of lack of respectful treatment


  5. #25
    Jr. Syringomyelia is actually a fluid filled cyst that slowly and progressively destoys the center of your spinal cord. The statistics regarding the occurence in those with SCI vary from 2 to about 10 percent of patients with SCI go on to develop Syringomyelia. There are several theories regarding how the cyst develops but one is that it evolves due to a disruption of the fluid surrounding the spinal cord and brain. This disruption can occur from post trauma, scarring, a brain malformation, (as in Arnold Chiari) or for no identifiable reason (termed idiopathic) or rarely as in my case it can be famillial. It is passed down my Father's line.


  6. #26
    I am the first in my family to get the actual diagnosis and am in the process of informing all my family members that have symptoms. It is a great relief for us to finally know the cause of what we have termed our 'family curse'.


  7. #27
    Quote Originally Posted by Tanya2
    I am the first in my family to get the actual diagnosis and am in the process of informing all my family members that have symptoms. It is a great relief for us to finally know the cause of what we have termed our 'family curse'.

    Thank you for sharing your experience here in the care cure community. Most certainly, this will prove to be informative and benificial for those with similiar circumstances.
    Thanks: {Art}

  8. #28
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    Soo sorry to hear this MG. I can relate to everything but the syrinx. Be thinking about you and hoping that things improve and the surgery will go smoothly. Keep us up to date!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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