Hey Everyone, Hope You Can Help - May Need Surgery!

Discussion in 'Fibromyalgia Main Forum' started by TerriM, Feb 27, 2003.

  1. TerriM

    TerriM New Member

    Hello everyone . . . I saw an immunologist last friday at Vanderbilt & was told that my CT-Scan revealed what looked to be a serious chronic sinus infection. The immunologist told me many of my symptoms could be coming that -- fatigue, dizziness, fevers, swollen lymph nodes, flushing, severe hypersensitivity due to my immune system cranking at high volume. My CFS occurred after surgery 18 months ago and the immunologist said that sometimes during surgery when the tube is put up your nose it can irritate an infection already present or cause an infection. I really came down with the flu like symptoms two weeks after surgery which seems like it could fit. When he first started talking about my sinuses I thought he was blowing me off like most of the doctors I've seen. This sounds reasonable because obviously severe infections can cause a lot of things. I actually was slightly optimistic that maybe I could take some antibiotics and it would help. Today I saw my ear, nose & throat dr. and he (a very trustworthy dr. I've known for years) said that I do have a bad chronic sinus infection. He said they almost become structural and cannot be treated with antibiotics. He is not sure if it will resolve all of my symptoms or not but says that the only way to clear this is sinus surgery. I am petrified!!!! I have become severely hypersensitive to all meds, cell phones, microwaves, chemicals . . . you name it. I got home last night from TN & want desperately to go back. I had a healing environment there & once home have been having some type of histamine reaction all night & all day to some chemical that is in here that wasn't when I left. My husband is baffled about that & tells me just to relax. Also, my endocrinologist speculated before that my anesthesia from my earlier surgery could have started this whole problem . . . I don't know what to do. Does anyone know anything about sinus surgery or anesthesia in reference to hypersensitivity states? My plan so far is:

    1. get a second ear, nose throat dr. opinion
    2. talk to my endocinologist about this since he suggested anesthesia may be a problem
    3. run this all by the immunologist again
    4. still waiting for appt with infectious disease dr. so will still rule out other infections
    5. see another neurologist (the first one was a long time ago before serious headaches from cell phones & CT Scans)
    6. Schedule a sit down consult with the anesthesiologist to discuss the situation.

    Any other ideas/advice . . . I am really scared. Have almost died from taking some meds with regular dosage . . . Thanks! Terri
  2. TerriM

    TerriM New Member

    The ENT dr. suggested I take prednisone before anesthesia to help with any reactions . . . doesn't that boost immunity? I think my immune system is revved so high . . . I don't really understand what the prednisone would do?? Don't want to take something else in the mix either . . . Terri
  3. TerriM

    TerriM New Member

  4. TerriM

    TerriM New Member

    They said if I had fungal infection it would show up totally different on a CT Scan . . . I asked about that. Thanks I'll check out articles! TErri
  5. Dlebbole

    Dlebbole New Member

    Hi Terri

    I sympathize with you greatly as I have experienced much of what you describe. A couple years ago, I began having difficulty being near anything electrical. My computer was lethal to me, I couldn't even be in the same room with it when it was on. I had a HUGE CFS flare, the worst ever which went on for months. I had episodes of double vision, which prompted an MRI. Everything normal, except the sinuses. I took antibiotics, first zithromax which stopped the weakness and fatigue I was having. I did end up having surgery, since the main infection seemed to be walled off and not cleared up with antibiotics. While the surgery didn't cure me, it is so much easier to manage. I can irrigate my sinuses which wasn't possible before. When I feel an infection coming on, I irrigate a lot and it seems to keep it in check. I'm back on the computer, and can sit here for about 30 minutes before I feel effects. Good luck. Diane
  6. Mikie

    Mikie Moderator

    See a good ENT and get a second opinion. Try to find a doc who uses a more natural approach, even if it also involves taking a steroidal nasal spray and antibiotics. Once the sinuses are free from infection, you can do the sea salt water flushes which are the best thing one can do for sinus infections. Taking the Guaifenesin at 2400 mgs will thin the mucus and allow it to drain. If the book, "Sinus Survival" is still in print, order it and read it. It was written by the head of the ENT Dept. at the Univ. of Colo. Medical School. Denver is the sinus infection capitol of the world. This doc does not recommend the surgery. I have heard about many people who have had more problems after the surger than before.

    One of my docs wanted me to have the surgery but told me it often doesn't work. Gee! That made it sound attractive as an option!

    Since moving to Florida, where it is more humid, I no longer get the infections, allergies, asthma, nor bronchitis. This is really strange because one of my allergies is mold. Go figure.

    Good luck with whatever you decide to do.

    Love, Mikie
  7. griswoldgirl

    griswoldgirl New Member

    and opted not to do it. I never met anyone that had sinus surgery and said it was the best thing they ever did. I personally know about 8 people whom have had it because I work in the medical field, including my old gyn and everyone I know traded one problem for another. One had such bad post nasal drip after to this day years post op most nights he sleeps in a recliner.

    My suggestion is to gather as much info as you can and sometimes if there is actually structual damage it is the only solution. What ever you decide I wish you luck.

    From another chronic sinusitus sufferer.


    ps--flonase is the best thing I have found to help
  8. TerriM

    TerriM New Member

    I definitely intend to get a second opinion and think long and hard before getting this done. I became sick with CFS after surgery 18 mos. ago and have no desire to have it again. My doctor's practice has been rated best in the DC area and he did do deviated septum surgery on me years ago . . . at least I trust him, but I don't want to jump to any conclusions. There are people out there who claim they had this sinus problem and CFS symptoms which resolved after surgery . . . maybe it is true for some people . . . I'm just afraid it might get worse. He says it is definitely a structural thing now so the antibiotics will not help . . . as someone said above, i would feel better for a short time & as soon as I was off of them it would come back. The doctor I saw at Vanderbilt said this is the absolute worse one he's ever seen . . . he thought it was some type of bad scar tissue at first. I guess all I can do is gather as much info as possible and try whatever I can first. Thanks! Terri