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Is Surgery Safe for me?
Hi I am new to this forum anyway, I post on the Ent forum because I have problems with my sinuses also. I just recently had blood tests done for viruses and immoglobins and it came back that at one time i was in contact with Epstein Barr virus. Well i guess CSF is associated with that and now i am wondering a lot of things like: I am achy all over - but i originally ruled this out because i dont sleep good because of my sinus problems. Like an example last week i pulled weeds for maybe a half hour or 45 mins. and the back of my legs hurt for a week. and over the winter time i got this dry sort of itchy rash on the sides of my neck, but i changed pillows and it eventually went away. but now its summer and with an allergen pillow just this past week this rash is back,it is slightly pink and a little itchy. and the last 3 days i have this twitching under my eye, anyway if and when i do sleep good i still wake up tired but that might be because of my sinuses. Well here is my problem, the Ent office nurse said i could still have sinus surgery with the Epstein Barr Virus ( well i think it is dormant now) but do they check for CSF or Fibromyalgia? Or who do i go to check for these ? Most importantly if i do have CSF or Fibro , can i get surgery? I have read that an infection or illness brings on CSF . Well i have had a bad couple of years had a staph infection on my adenoids for years,adenoids removed then the last year my turbinates have been swelling and still got cultured for staph,not sleeping good for the last year and antibiotics not have worked. How long does it take to get tested for CSF or Fibro? Because I was at the point to schedule sinus surgery, but the way i feel ,can i make it through a surgery if i have CSF or Fibro? sorry so lengthy but i am sick and tired of being sick and tired. Any help or information would be very grateful, especially any opionions on the surgery. thanks for listening.
Please do keep me posted :). It's nice to have all my hard research serve duty for someone else. Tooth problems can appear as sinus problems...maybe that will help too! The CDC is the Centers for Disease Control. They have a CFS web page. I haven't actually looked directly at it (I got scoop during the update of it from the organization doing it), so I don't have the link to post. They've finally taken CFS seriously, done good research, and are running a 2 year "Awareness Campaign". If you can't find it on the CDC site, they'll be a link to it from the Cfids.org site.
Just make sure your printer is plugged to the computer before you ax it :). (I spent hours trying to fix what turned out to a loose connection - geez I felt dumb.) My problem today was every time I deleted an email - it replicated into three and scattered. Think I've got it fixed now.
Good luck with your search to get all the info you need!!
Just make sure your printer is plugged to the computer before you ax it :). (I spent hours trying to fix what turned out to a loose connection - geez I felt dumb.) My problem today was every time I deleted an email - it replicated into three and scattered. Think I've got it fixed now.
Good luck with your search to get all the info you need!!
Thanks for the info, I just posted on the Ent site to another helpful person like yourself,Im checking into some teeth decay issues right now then i will go from there, thanks for listening to me and all the info and help you searched and gave me. very nice talking to you. If you would like to know i will keep you updated at a later time since it looks like im fixing 3 teeth before i do anything else. keep in touch:) p.s. what is the CDC's again the website also right now my printer is not working:(
Hi - by hit post, I meant that I clicked on the "post comment" button before I finished typing and hence my 2nd entry. Sorry, to confuse with my silly wording! However, what you mention is a good idea. If you had it in the same hospital, they'll have the records. If not, then call the old hospital and ask for the info. You can ask your new ENT to track it down, but it will be more likely to happen if you do it. It is a good idea to find out what the drugs were each time, since that might give the anethesologist clues. My anethesologist wasn't familar with CFS and was very dense about the whole thing, so bringing some of the CDC's website's info along would probably be good. Once he understood it, he did take it seriously. Isn't medical stuff fun? Hopefully this surgery will be a big improvement for you, and make it all worthwhile!
Thanks again for all the info, What did you mean about hit post just before finishing? do i have to go back and find the anethesolgist report on what they used on me because now i have a different Ent than before. thanks, keep in touch:)
...p.s. no wonder you're concerned and trying to figure this out... hopefully this info will help and your doctor's will be able to piece it together further. It's not worth holding off the surgery for a CFS diagnosis since the diagnosis won't effect the surgery and it can take months to go through all the exclusion tests (many are blood tests but it still takes time to try a set and then think of more and try the next thing). good luck!!!!
hit post just before finishing... There's an excellent clinic in Utah, OFFER, who's website might have good info.
Hi, until you have the surgery you won't know if you have CFS. It's a diagnosis of exclusion, meaning you have to exclude everything else that's causing the symptom pattern, as well has have the pattern that fits CFS. The pattern is more than fatigue, but includes post-exertional malaise and cognitive problems. ...check out the websites I mentioned to see if it sounds like it. Very few doctors really know much about CFS, so ask both of them as well as look for someone knowledgeable. If you ENT is openminded, then bringing him/her the literature from the websites might get you started. The CDC has a training program for doctors (continuing education) that he/she can use. The Cfids association would be pleased with a call from and would but an interested doctor in touch with the right people (such as other doctors).
It's a good question what was causing your different type of reaction the 2nd time. I'd suggest bringing in the adenod history, and, the CFS anesthesia suggestions and see what they say. Before bringing in the anesthesia stuff, if you google it (CFS and surgery or something like that is what I used), there are only a few interesting sites and it will give you a better context for what I found.
One of easiest ways to confirm (but not finalize a diagnosis) of CFS is to check for dysautonomia (specific to CFS, not dysautonomias in general). There are several ways to do this the most know being tilt table testing. If you google you might find the others which can be done in a doctor's office. Problem with the test is that it triggers the dysautomomia and can take weeks to feel better from.
Being hypersensitive and elevated epstein bar are common in CFS, so you might have it, but check the symptom list to see if you have more than that and fatigue.
It's a good question what was causing your different type of reaction the 2nd time. I'd suggest bringing in the adenod history, and, the CFS anesthesia suggestions and see what they say. Before bringing in the anesthesia stuff, if you google it (CFS and surgery or something like that is what I used), there are only a few interesting sites and it will give you a better context for what I found.
One of easiest ways to confirm (but not finalize a diagnosis) of CFS is to check for dysautonomia (specific to CFS, not dysautonomias in general). There are several ways to do this the most know being tilt table testing. If you google you might find the others which can be done in a doctor's office. Problem with the test is that it triggers the dysautomomia and can take weeks to feel better from.
Being hypersensitive and elevated epstein bar are common in CFS, so you might have it, but check the symptom list to see if you have more than that and fatigue.
I thank everyone for your info and help and concerns, here is a couple of things i wanted to point out about 4 years ago i had a major surgery and asked if i could have the mask air over my face instead of tube down my throat, which i had a few months before that in a minor surgery and spit up blood for a day or so anyway as far as i know because i was out they used the mask air over my face and i didnt wake up nauseated or throwing up or anything... Last year i had my adenoids out and obviously they put a tube down my throat during surgery or they used a different anethesia because i was in recovery for hours very dizzy and throwing up but do you think it was the anethesia or found out weeks later that i had a bad infection already had an infection on my adenoids when i went in for surgery then i got a really bad infection during surgery. so do you think it was different anethesia or the infection that made me that sick... one more thing can my ENT doc give me tests for CSF or do i have to go to my family doc because i like me ENT better than my family doc. I was hoping to schedule sinus surgery within the next month is that enough time to know if i have CSF or not. I am losing valuable sleep i need to do something about sinuses... thanks again everyone, you are very nice and helpful.
I had sinus surgery a few years ago thinking that it would solve all of my problems. At the time, I didn't have a diagnosis other than "severe allergies", although I did fit the criteria for CFS and had often wondered if I had CFS. Anyway, the surgeon told me that I would be able to go back to work in 2 weeks, but it took me 3 weeks before I was able to return to work and an additional week before I felt a lot better. I remember I had a lot of dizziness and had that foggy feeling for weeks.
I would definitely consider printing out the advice that Curls gave you and discussing it with your surgeon and I'm happy to see that these physicians are addressing this issue finally !
Here's the collection I wrote from what I researched and then talked with the anethesiologist about. But as I said, I think it's overkill and I hope I'm not just passing on something to worry about. But there might be something minor in here that you'll care about. Dr. Lapp is extremely well respected. Dr. Cheney is respected but on the outside edge of the regular stuff (and I think he might charge very high rates). I haven't heard of Dr. Class other than here. Dr. David Bell is also very, very well respected.
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Anesthesia – ideas of what’s been found to be well tolerated in CFS patients
Agents -
Anesthesiologist Dr. Patrick. L. Class of Nevada recommends 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, "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."
Pre & Post Op Sedation -
According to Dr. Charles 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." (Personal Note: I have a long history of strange and strong reactions to antihistamines & psychotropics including staying awake for days. I haven't taken benzodiazepines, but Dr. B-- has found them generally well tolerated in CFS patients.)
Local Anesthetics -
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.
(Personal Note: I had a lidocaine site specific injection once. I almost immediately became very disoriented, spinning, vision changes, poor coordination. It wore off after around six hours.)
--------------------
Anesthesia – ideas of what’s been found to be well tolerated in CFS patients
Agents -
Anesthesiologist Dr. Patrick. L. Class of Nevada recommends 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, "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."
Pre & Post Op Sedation -
According to Dr. Charles 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." (Personal Note: I have a long history of strange and strong reactions to antihistamines & psychotropics including staying awake for days. I haven't taken benzodiazepines, but Dr. B-- has found them generally well tolerated in CFS patients.)
Local Anesthetics -
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.
(Personal Note: I had a lidocaine site specific injection once. I almost immediately became very disoriented, spinning, vision changes, poor coordination. It wore off after around six hours.)
I have cfs and surgery last year. Actually the IVs will increase blood volume levels - and you might feel better than normal with even a *little symptom relief. (Most CFS patients who are tested for total blood volume, not just the standard CBC ratio test, test low...so anything that increases fluid levels is recommended as treatment such as staying hyrdrated, salt tablets, and sometimes even IVs).
Some doctors do recommend that with CFS, a histamine releasing agents for anesethia be avoided. If you test positive for dyautonomias such as POTS or NMH (neurally mediated hypotension) then you'll want to ask them to avoid vasodilators except when necessary or at least note that you will be more sensitive than the norm. If you are hypersensitive to anything (as CFS sometimes is) then you'll want to ask if it's going to be in anything they plan to give you.
You should be fine for the CFS. I was and my doctor who's knowledgeble in CFS was sure I would be, as were other patients I talked with who'd been through even more extensive surgeries than mine.
I did extensive research before hand. It's likely to be complete overkill and I wouldn't want it to get you anxious, but I'm going to paste in the anethesa notes, so you have it as a reference to google if you really want to. They used an unusual anethestic for me because I'm also allergic to eggs, but I doubt it all matters very much because CFS patients get surgery all the time without looking up this stuff. And I haven't heard any complaints or worries in the 10 years I've had it, been to support groups, browsed the web, ect..
The one thing I would recommend - if you have shortness of breath (SOB) with the CFS and then have it after the surgery, there's an instrument, a spectrometer or something like that, which can help open up the breathing. I was SOB and they sent me to the emergency room a few days later to check for blood clots (which are life threatening) and which I didn't have. I was SOB for about 5 weeks, but I have a hard time with that regularly. Anyway, my PCP doctor mentioned the instrument a few months later, and wish I'd known about it.
FM may be different than CFS, so of course talk anything over with your PCP.
There is no diagnostic test for CFS, but the cfids.org website and the CDC's website have good testing descriptions for what can be tested for.
Good luck!!
Some doctors do recommend that with CFS, a histamine releasing agents for anesethia be avoided. If you test positive for dyautonomias such as POTS or NMH (neurally mediated hypotension) then you'll want to ask them to avoid vasodilators except when necessary or at least note that you will be more sensitive than the norm. If you are hypersensitive to anything (as CFS sometimes is) then you'll want to ask if it's going to be in anything they plan to give you.
You should be fine for the CFS. I was and my doctor who's knowledgeble in CFS was sure I would be, as were other patients I talked with who'd been through even more extensive surgeries than mine.
I did extensive research before hand. It's likely to be complete overkill and I wouldn't want it to get you anxious, but I'm going to paste in the anethesa notes, so you have it as a reference to google if you really want to. They used an unusual anethestic for me because I'm also allergic to eggs, but I doubt it all matters very much because CFS patients get surgery all the time without looking up this stuff. And I haven't heard any complaints or worries in the 10 years I've had it, been to support groups, browsed the web, ect..
The one thing I would recommend - if you have shortness of breath (SOB) with the CFS and then have it after the surgery, there's an instrument, a spectrometer or something like that, which can help open up the breathing. I was SOB and they sent me to the emergency room a few days later to check for blood clots (which are life threatening) and which I didn't have. I was SOB for about 5 weeks, but I have a hard time with that regularly. Anyway, my PCP doctor mentioned the instrument a few months later, and wish I'd known about it.
FM may be different than CFS, so of course talk anything over with your PCP.
There is no diagnostic test for CFS, but the cfids.org website and the CDC's website have good testing descriptions for what can be tested for.
Good luck!!
Thanks for the info out of the two I think I have more symtoms with CFS.Are there tests for that and will CFS interefere with surgery? I appreciate any help. thanks again.
There are no tests for fibro. It's diagnosed by ruling out other diseases. You also must have 11 out of 18 painfulpressure points. If you google fibro, it should show you the pattern they take. If you do have fibro, it will not interfere with surgery. I just had cervical fusion on my neck.It causes the pain to flare, but shouldn't be a determining factor whether or not to have surgery.
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