Going to Georgetown study in January,

Discussion in 'Fibromyalgia Main Forum' started by Sandyz, Dec 1, 2008.

  1. Sandyz

    Sandyz New Member

    I am going to be taking part in the CFS study at Georgetown hospitol. I was looking for some posts about peoples experience there. What the proceeder was like, how long they stayed at the hospitol, etc. I can`t seem to find many. If you took part in this study, tell me your experience or bump old posts up about it please. thanks!
  2. gapsych

    gapsych New Member

    Wow!! Good for you. There are several people who have been involved in the GeorgeTown study. I think MartaZ, this may be misspelled.

    Hopefully, someone else will have more information for you.

    In the meantime, here is a bump!!

    Take care.

  3. aftermath

    aftermath New Member

    I participated in the Georgetown proteomics study in August. I'm very glad that I went. The project is extremely worthwhile and Drs. Baraniuk and Ravindran and the nursing staff were absolutely superb.

    Be forewarned: the LP was absolutely brutal for me.

    The one thing I would INSIST on is that a senior ATTENDING interventional neuroradiologist do your LP. If they attempt to let a resident or fellow do your LP, tell them that you are walking out.

    I went into this study having had an AWFUL experience with an LP by another very well-known ME/CFS doctor. He missed twice and handed me off to one of his colleagues who hit the tap. The pain was AWFUL, and I have a high tolerance for pain (and no pain with this illness). To make matters worse, I got BRUTAL spinal headaches (mindblowing pain) for ten days after.

    I told the folks at Georgetown this going in and asked that they have someone very senior do the LP.

    When I got there, the LP went totally sideways. The person doing it dug around in my back with the needle for 3-4 minutes while I was in awful pain before she quit and handed me off to another doctor. He hit the tap in ten seconds with no pain whatsoever. The guy who hit then pulled the other doctor aside and told her that she made a bad choice with regard to which junction she chose to attempt the procedure at.

    I later found out that the first doctor was a FELLOW (read: interventional neuroradiologist in training). Radiology is a four-year residency. After that, you can learn the interventional neuro part through a fellowship, which is what she was doing.

    I later found out that Dr. Ravindran knew what was going on and tried to get it stopped beforehand. Still, he does not have much power there. He just came here from India and is attempting to procure a US residency in neurology.

    Dr. Baraniuk was furious when he found out what happened. Still, it was already done at that point.

    I am fortunate in that I am a "high functioning" person with this illness. Although I am nothing like I was before I got sick very suddenly 13 years ago, I [struggle to] work a full-time (35 hr/wk) sedentary job. It wasn't enough to crash me, but there are others that it certainly would have.

    Bottom line: all possible care should be taken when attempting the LP on this patient population. Georgetown failed miserably here in this regard during my experience.

    Even with the bad experience, I would have done it again in a heartbeat. I truly feel that Dr. Baraniuk's theory on this illness is among the most convincing currently in play, especially in light of the less that promising results out of Stanford. We need real research, because vitamins, CBT and exercise are not going to cure this very real illness.
    [This Message was Edited on 12/02/2008]
  4. Sandyz

    Sandyz New Member

    I can`t believe they did that! Did you have any side effects like headaches afterwards? Dr. Ravindran assured me that someone very qualified would be doing the LP. I guess I will have to talk to him again and make sure it is someone very qualified. How long did you stay at the hospitol? My hubby is comng with me just in case I have side effects or anything else. I am happy to be in this study and I hope it goes smoothly. Thanks for sharing your experience with me.
  5. aftermath

    aftermath New Member

    I had a lot of pain afterward, but I did not get the spinal headaches with the Georgetown LP.

    I did get them during the 1st LP I had in 2006 with another doc. He sent the fluid to Viracor for HHV testing. That one involved two misses instead of one. The spinal headaches were beyond awful. I was on narcotic pain meds and horizontal with my eyes closed for ten days. Even then, looking from side-to-side with my eyes closed was like getting hit with a baseball bat.

    Ravindran is a straight shooter. He is not lying to you. The problem is that he is a post-doc--even lower in the hierarchy than a resident. He has no pull at Georgetown at all. In my case, he told me that he tried to get it stopped but they didn't listen to him.

    As I stated earlier, you need to talk to Dr. R and tell him flat out that you talked to another participant who told you to do the study but with the following condition: that you will be walking out of the place if a resident or a fellow comes near you. Request that he communicate this to Dr. Baraniuk and get his assurance that you will not repeat my experience.

    you want a senior attending physician or nothing. There is a place for learning in medicine, but it is not with this patient population.

    My case is classic sudden onset. I got sick VERY suddenly during a period of super-high stress where I also had a lingering upper respiratory illness.

    Although I have both positive brain SPECT and tilt-table tests, I am negative in both blood and spinal fluid for every pathogen under the sun. I am even EBV negative!

    Thus, I have a lot of belief that Dr. Baraniuk is correct, or that the etiology of this illness is similar to what he theorizes.
  6. hensue

    hensue New Member

    Are we talking fibromyalgias and cfs? Just like to get some info?
  7. aftermath

    aftermath New Member


  8. gapsych

    gapsych New Member

    Thanks so much for the medscape article. I have bookmarked it.

    Thanks to you and everyone else taking part in this study.

    I was not able to take part in the study, but have talked to Dr. R several times and was very impressed not only with his knowledge but also his compassion.

    Take care.