Does sinus surgery/tonsillectomy help?

Discussion in 'Fibromyalgia Main Forum' started by Laz1, Jul 19, 2003.

  1. Laz1

    Laz1 New Member

    Hi! I have CFIDS, FMS, a lupus-like connective tissue disorder, and reactive arthritis. My rheumatologist says she has had success with some FMS/reactive arthritis patients by tonsillectomy and, if sinus infection present, sinus surgery, followed by four months of heavy-duty antibiotics. She believes that the muscle inflammation, auto-immune response and arthritis have their roots in an ongoing, under-ground infection, such as strep, which lodges in the joints and deep muscles. Does anyone have any experience with this? Dr. Z hasn't steered me wrong yet (she was right about the sinus infection and tonsillitis), but I don't do well with anesthesia, so I don't want to go into this surgery lightly.

    Any ideas out there? Thanks!
  2. Boy I would get a second opinion before having surgery. I had the sinus surgery and I can tell you its no picnic and my sinus infections continued afterwards. I got no relief and it was quite painful. It seems kind of drastic unless your continuing having infections. Good luck!
  3. lucky

    lucky New Member

    Having CFS/FMS I also suffer from chronic sinus infections for many years. But I also believe that it is probably wise to get a second opinion if sinus surgery is advisable.
    Dr. James Baraniuk of Georgetown University who seems to be an expert of CFS/sinus infections says the following:
    'the preliminary data suggests sympathetic nervous system dysfunction is integreal to CFS pathology resulting in chronic stuffy nose, sinus problems with resulting sore throat' and he is very opposed to endoscopic surgery.
    As you read, it is a painful operation and before you get it done, I would really seek the advice of a good nose/ear/throat specialist as well who is more familiar with this problem than a rheumatologist.
    I wish you luck and kind regards, Lucky
  4. Stillkicking

    Stillkicking New Member

    can help if you have a functional problem that is blocking your air flow and causing infection. You have a wise doctor who recognizes the problem as an infection. It's a chronic staph infection, usually, and that matters a lot when she treates you with antibiotics. The right antibiotics will make all the difference. Usually the adnoids are infected also.

    Anesthesia was something I was worried about as well, but it has improved greatly and was no problem for me.

    No two people are alike and you have to decide what is best in your circumstances. Get all the facts first. Just get good second opinions and trust your gut instinct.

    Wishing you well.

    I wanted to add that your surgery will go much better and you will recover faster, if you are treated with effective antibiotics before surgery. If your turbinates are enlarged, this may make them swrink and cause less pain and bleeding. Be aware that most of these antibiotics are not effective against staph sinusitis and about 50 percent of people have surgery and are not helped because of this. If you can get the right antibiotics, you can always have the surgery later or maybe you won't need it.[This Message was Edited on 07/21/2003]
  5. sssupermom

    sssupermom New Member

    surgery FIVE times and I am still batteling with all the symptoms. Yes, the surgery is bad but the recovery is even worse. However, what your MD is saying makes a great deal of sense maybe there is another way thought because the surgery did not help me, in fact I can not longer smell or taste.(don't know if it is from the surgery)and I am still congested.
  6. gmcnj

    gmcnj New Member

    Hi! I have a similar diagnosis (reactive arthritis caused by underlying infection, probably strep). I know it's a very serious and difficult decision whether to have surgery, and I found no info online about tonsillectomy for this purpose. I'm not sure how much I can help, but here's my experience. My rheumy (Dr. Z... do we have the same doctor?) didn't like the looks of my tonsils, and I've always had sinus problems. On her advice I had a CAT scan, and an ENT then recommended sinus surgery. While I was fairly miserable for the first week, and a bit miserable for another one, it wasn't too bad, and it was worth it. I can always breath out of my nose now for the first time in years, including during allergy season, and have many fewer headaches, though there's been no direct affect on my arthritis to date. While they approved my sinus surgery, my healthplan determined the tonsillectomy to be 'medically unecessary'. If they hadn't, I'm pretty sure I would have done it as I have a lot of faith in Dr. Z (and had lousy or no treatment before finding her). I've been on antibiotics for about 7 months now, and am in a major flare (i.e., all of my symptoms are much worse). But that's what she warned me would happen. Anyway, I'm not sure how much that helps as I didn't actually get the tonsillectomy and I'm not in remission, yet. I will say that given how painful a tonsillectomy is supposed to be, I probably wouldn't opt to have both surgeries at once as my ENT would have done it. Good luck with your decision and treatment.
  7. Laz1

    Laz1 New Member

    Just wanted to thank the folks who replied to my query. Gave me a lot to think about, both pro and con. Previous sinus surgery (11 years ago) seems to have been successful, as the resculpted sinuses are clear; the sphenoid sinus, which was not done, is the infected one--also the most dangerous to operate on, due to proximity to brain case, optic nerves and a major artery. So I'm leaning toward just the tonsillectomy, then antibiotics to clear sinus.
    To gmcnj, I strongly suspect we are talking about the same Dr. Z--how many like her could there be in the world? In almost four years, she has never given up on me or made me feel I'm hopeless. I hope you become one of her success stories--laz1
  8. healing

    healing New Member

    I go to Dr. Z too. I too have reactive arthritis and she checked to see if my tonsils had grown back or if the doc had left "stumps" when he did the surgery all those decades ago. I currently am building up to 1000 mg/day of penicillen for my reactive arthritis. Have had only one sinus infection in my life, but had that a year ago and it was terrible. I think there's a lot of literature to support her theories, and you'll see some of it on this website.
  9. healing

    healing New Member

    wonder how many of us on this board are seeing Dr. Z? :eek:)