Operation-Help-Should my daughter have it?

Discussion in 'Fibromyalgia Main Forum' started by PatPalmer, Mar 13, 2003.

  1. PatPalmer

    PatPalmer New Member

    My daughter is 18 and has had CFS for almost 4 years.
    Diagnosed with Mycoplasma Pneumoniae.

    I have over time treated her with every supplement you can imagine, did become well enough in Nov 2001 to work part time, but stress brought on a relapse.
    She has made good progress and is now about 75-80%.(must be age on her side)

    She is however due to have an operation on her foot in June, and it worries me, because I have read several posts on here that all said their condition became much worse after going into theatre.
    She has not got FM, is it mainly people with this who have suffered?

    Many thanks

  2. LeLeHpr

    LeLeHpr New Member

    Don't be frightened by what you hear on the board. Everyone's body reacts to things differently. For example, I recently had two surgeries at one time and did very well. Actually better than expected. (Due to what I like to call spunk, some call it spirit, or determination) What you go in with is usually what you come out with. I went in positive, and came out positive. Though I will say I was in pain. I have FM, so that is nothing new....Hope this helps.
  3. Shirl

    Shirl New Member

    Shalom, Shirl
  4. griswoldgirl

    griswoldgirl New Member

    I have survived 4 surgeries for endometriosis including full hysterectomy, a c-spine fusion for two ruptured discs and was back to work 8 weeks post op. I have had three surgeries on my knee since September and I am doing remarably well. The physical therapy is hard work,, but I get through. My hysterectomy was a breeze, back on track 6 weeks later at work like a "normal" person.

    It does seem to flare the fibro up in some of us, it has in me, but nothing I cannot handle with the right meds.

    Good luck with hers and your decision. If they felt that the respitory problems were going to get in the way they would not do the surgery. When I had my knee surgery (acl recon) I was just getting over a sinus infection and they continued antibiotics after surgery just for good measure.

    good luck

  5. kalina

    kalina New Member


    I understand your concern for your daughter. When I had a full hysterectomy a little over a year ago, I was concerned, too. I found the following article in the Winter 2000 edition of The CFIDS Chronicle (published by the CFIDS Association of America). I gave copies to my surgeon, and most importantly to my anesthesiologist, who called me several times to discuss the information so my surgery would go as smoothly as possible. They were both very cooperative and willing to work with me on this. Even though my recovery was prolonged by my illness, I know I did the right thing to have the surgery -- at least THAT much of my suffering is gone now. Here's the article. I hope it will help you and your daughter make the best decision for her.



    CFIDS and Anesthesia: What Are the Risks?
    By Elisabeth A. Crean

    Anecdotes have piled up over the years about the especially difficult time persons with CFIDS (PWCs) have recovering from anesthesia. PWCs are hypersensitive to many medications, including anesthetics, often tolerating just a fraction of the standard dosage levels. The reactions some patients experience may be a sign that their immune and endocrine systems don't respond normally to pharmaceutical challenges and stimuli. Unfortunately, no rigorous scientific studies have been published on any of these issues. Meanwhile, every day PWCs are facing the imminent possibility of surgery, and need to educate their doctors now.

    What the doctors say
    When a question about anesthesia and PWCs was posted on the Internet, most responses quoted two doctors, Dr. Patrick. L. Class of Nevada and Dr. Paul R. Cheney of North Carolina. Here is what Dr. Class recommends for CFIDS patients who must undergo surgery: "I prepare long before the surgery takes place by performing skin tests for all the agents I am considering using, to see if the patient is allergic to any of them. With CFIDS patients, I recommend Diprivan as the induction agent; Versed, fentanyl (a short-acting narcotic) and droperidol (an anti-nausea agent) during anesthesia; and a combination of nitrous oxide, oxygen and Forane as the maintenance agent."

    In contrast, Dr. Class notes, "There is a commonly used group of anesthetics, known as histamine-releasers, which are probably best avoided by CFIDS patients." This group includes the thiobarbituates, such as sodium pentathol, probably the most common induction agent and a known histamine-releaser. "In addition, there is a broad group of muscle relaxants in the Curare family, namely Curare, Tracrium, and Mevacurium, which are also potent histamine-releasers and should be avoided by CFIDS patients." Because many histamine-releasing agents are commonly used during emergency surgery, Dr. Class advises PWCs: "Wear a medical alert bracelet in the event you are unconscious. I would mention on the bracelet that you cannot receive any histamine-releasing drugs." Other options for communicating this information include carrying instructions in your wallet, educating your family and insisting that it be included in your medical chart.

    CFIDS can be an indication that certain organs, like the liver, may already be overtaxed, and processes like cell metabolism disturbed. An anesthesia plan must take this into account. Dr. Cheney advises against using anesthetic gases like Halothane that can potentially be toxic to the liver. "Patients with CFIDS are known to have reactivated herpes group viruses, which can produce mild and usually subclinical hepatitis. Hepatotoxic anesthetic gases may provoke fulminate (sudden, severe onset) of hepatitis."

    Dr. Cheney also notes that electron beam x-ray spectroscopy techniques have shown that PWCs do not have enough magnesium and potassium in their cells, which can be problematic. The magnesium and potassium depletion can result in cardiac arrhythmias during anesthesia. "For this reason, I would recommend the patient be given Micro-K using 10mEq tablets, 1 tablet BID and magnesium sulfate 50% solution, 2cc IM 24 hours to surgery."

    As technological advances like laproscopy make surgery less invasive, surgeons can perform more procedures where they combine a local anesthetic with a sedative instead of using general anesthesia. But even local anesthetics used outside of surgery should be approached with caution when being administered to PWCs. "Lidocaine should be used sparingly and without epinephrine," Dr. Cheney says.

    In an article for the February CFIDS Support Network update, Dr. Charles Lapp of North Carolina also emphasizes checking serum magnesium and potassium before surgery and replenishing these minerals if the levels are borderline or low. Seriously ill patients, or those frequently on steroid therapy, might need pre-operative cortisol testing and supplementation as well. According to Dr. Lapp, doctors may also have to modify pre- and post-operative sedation. "Most CFIDS patients are also extremely sensitive to sedative medications--including benzodiazepines, antihistamines and psychotropics -- which should be used sparingly and in small doses until the patient’s response can be assessed."

    The consequences of neurally mediated hypotension (NMH)--frequently seen in CFIDS patients--concern Lapp as well. These include low plasma volume, low red blood cell mass, venous pooling and vasovagal syncope (fainting). "Syncope may be precipitated by catecholamines (epinephrine), sympathomimetics (isoproterenol) and vasodilators (nitric oxide, nitroglycerin, beta-blockers and hypotensive agents)," Dr. Lapp says. "Care should be taken to hydrate patients prior to surgery and to avoid drugs that stimulate neurogenic syncope or lower blood pressure." The need for extra hydration might mean checking into the hospital the day before surgery -- as was customary in pre-managed care times -- instead of just a few hours before.

    Almost everyone feels weak and tired after an operation. But people with CFIDS should prepare to experience increased fatigue and problems with memory and concentration for a much longer period than normal, says Dr. Charles Shepherd of Gloucestershire, England, in his book Living with ME. He speculates that reduced blood flow to the brain during surgery and the immediate post-operative recovery period may partially explain this. Other possible culprits may be specific anesthesias, particularly those used to correct a low heart rate or reverse muscle paralysis, which can further disturb brain chemistry already altered by CFIDS.

    Dr. Shepherd suggests referring surgeons and anesthesiologists to a research paper about acetylcholine levels in PWCs (such as Chadhuri, A., et al, Chronic fatigue syndrome: a disorder of central cholinergic transmission, Journal of Chronic Fatigue Syndrome, 1997; 3: 3-16). This may be a good way to alert them to possible complications with your recovery.

    How you can prepare
    These steps should help you get ready in the event that you need anesthesia. Remember that the following applies to dental procedures requiring anesthesia as well, so don’t forget to inform your dentist or oral surgeon.

    1. Avoid unnecessary surgery, since the risks of anesthesia for PWCs are still not well-defined.

    2. Ask that the specific information about the use of anesthesia in PWCs mentioned in the "What the doctors say," section of this article be placed in your medical chart in case you need emergency surgery.

    3. Always seek a second opinion -- and a third or fourth, if necessary -- when a doctor recommends you have surgery. This applies even in emergency situations. Let your family know your wishes.

    4. If non-surgical treatment options exist, explore these first. For instance, there are new, non-surgical techniques to remove kidney and gallstones.

    5. If you have to have surgery, choose the least invasive surgical technique. There are new "keyhole" procedures available that involve less anesthesia, less trauma to the body and a quicker recovery time. This may mean traveling to a big city hospital where the higher tech equipment is more prevalent and surgeons have more experience using it. Be careful to investigate all options carefully first, so you can avoid being a guinea pig for an inexperienced doctor trying equipment for the first time.

    6. Insist on meeting with the anesthesiologist and surgeon as far ahead of the surgery as possible, so you can discuss CFIDS-specific issues and he can have time to do additional research on what will work best for you. Ask him or her to explain exactly what will happen during the procedure.

    7. Make sure your surgeon and anesthesiologist know the dosage and frequency of every medication you are taking, including herbs, supplements and vitamins. Don't forget to mention any drugs you have recently stopped taking, as some substances take weeks to clear from your system. There may be contraindications to or interactions with the medicines they plan to use.

    8. Make sure your doctors know all allergies and hypersensitivities you have to medications, foods and chemicals. A latex allergy is an obvious example, but did you know that a shellfish allergy might mean you will react badly to certain x-ray dyes? No allergy information is too insignificant to mention.

    9. Ask if you can leave information on CFIDS for the nurses who will be caring for you after the surgery. They may not read it, but it is worth the attempt to educate them about possible complications.

    10. After the surgery, try not to overdo and give your body appropriate time to heal. Keep in mind that your healing may be slower than is normal, and make sure your health care providers and caregivers are aware and pre-pared for that possibility beforehand, so that a longer hospital stay or special care can be arranged.

  6. PatPalmer

    PatPalmer New Member

    Kalina, your article is very useful, thank you.

    It`s nice to hear some positive responses, my daughter feels good about having the op, it`s just me, so at least she has the right attitude....

    She was born with SEVEN toes on her right foot, the spare were taken off at 18 months but the bone has grown where the joint was, making it difficult to find comfortable shoes. - Lives in trainers.

    It could be avoided but she is desperate to have matching feet.

    Thanks again

  7. Mikie

    Mikie Moderator

    I had surgery, big-time surgery, on my arm about three years ago, and I did just fine. Recently, I was knocked out for a colonoscopy and did fine again except for a little nausea right afterward and I think that was more from going so long without eating.

    I've never had a bad reaction to anesthesia and have always recovered very rapidly from any surgery. I am planning on a little plastic surgery soon and expect to recover without incident.

    Good luck to your daughter.

    Love, Mikie