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    Old 06-20-2007, 06:59 AM   #1
    sue416
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    Question ACDF for fibromyalgia symptoms

    My husband, age 51, has suffered for years with many symptoms, such as dizzyness, pain, weakness, and has now progressed to not being able to walk very far, memory problems, fuzzy brain, etc. He was finally diagnosed with fibromyalgia and is on disability. In our search on the web we came up with Dr. Dan Heffez's name. He used to be in Chicago, but is now in Milwaukee. He has found a correlaton between fibro symptoms and cervical spine problems. He has found a narrow spinal column with some bulgy discs and bone spurs and is recommending ACDF at three levels. We were hoping to find some less invasive ideas and went to Cleveland Clinic on Monday. The neurologist here in Michigan and the NS in Cleveland don't see the problems in the neck being bad enough to be causing problems and do not recommend the surgery. They want to do a CT of the brain and see if there is any hydrocephalus present. That could explain some of the symptoms, but not all. I'd like to know if there is anyone out there who has had this surgery for less severe problems and if they feel it was worth it.

     
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    Old 06-20-2007, 11:58 AM   #2
    SKZ
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    Re: ACDF for fibromyalgia symptoms

    If it were me, personally, I would not have any neck surgery till I exhausted every possible avenue, first. If 2 neurosurgeons told me they didnt think I needed the surgery, I would definitely not have it unless a majority of other Drs. told me I should. Its not a miracle cure. Most people on here that were sure they needed the neck fusion surgery, will tell you its no cure. I am improved, but I still grapple everyday with neck pain (less than it was) and upper body muscle spasm. I am the same age as your husband. It took me 5 years of trying every possible thing, before I gave in and had the surgery. Do all the testing first and then revisit the surgery option when you have alot of more info. IMO.

     
    Old 06-20-2007, 05:37 PM   #3
    MargaretM123
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    Re: ACDF for fibromyalgia symptoms

    I underwent ACDF surgery one week ago but have been dealing with herniated discs and cervical spinal stenosis since the late 80's. It wasn't until every other avenue was tried (and failed) that I even considered the surgery.
    My herniated discs and compromised spinal cord were severely affecting my quality of life and I was told by three neurologists as well as my neurosurgeon that without surgery I would just get worse and that I was in danger of paralysis.
    My symptoms included pain in my neck and shoulder and numbness and burninig sensations in my leg, arm, hand and fingers. I had a great difficulty with my balance and my leg would give out on me, causing me to fall on many occasions. I've broken my hand twice from such falls.
    I can tell you that this surgery isn't a snap. The operation took over two hours, which meant I was exposed to the risks of general anesthesia all that time, and it took them almost two more hours more to wake me up.
    The biggest issue with recovery for me so far has to do with swallowing. I don't have a sore throat but because the neck muscles were moved in order to get to the discs, they hurt each time I swallow. Finding a comfortable position to sleep in hasn't been easy for me either.
    I wouldn't hesitate to recommend this surgery if your husband's doctors say he needs it, but I would never recommend any surgery as his first option.
    Just my opinion, but I hope it helps.
    Marge

     
    Old 06-20-2007, 07:07 PM   #4
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    Re: ACDF for fibromyalgia symptoms

    Hi Sue,

    I ditto the above comments. I was told I needed surgery due to my disc flattening my spinal cord. I tried MANY therapies in hopes of relief that didn't involve surgery...accupuncture, myofascial therapy, osteopathic therapy...I was wiiling to try anything. I was experiencing and still am experiencing a host of neurological problems. My balance is still not right, I have numbness and tingling and twitching issues pretty much body wide. I am 3 months post-op ACDF. I had 2 neurosurgeons tell me I needed the surgery. I had been feeling so terrible I went for it in hopes some of my symptoms would be alleviated. So far, not much change. But...I TOTALLY understand you guys wanting to try it in hopes of help and improvement. Maybe, in time, things will get better for me - I don't know. So far, it's day by day. I would only do surgery if I had several docs recommending it - just my 2 cents. Let us know how things go for you guys. Sorry to hear about his health problems. I won't bore you with my laundry list, but I so empathize and understand where you're at; keep searching - that's what I'm going to do if things don't start looking up. Mona

     
    Old 06-20-2007, 10:55 PM   #5
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    Re: ACDF for fibromyalgia symptoms

    2 surgeries later, my advice is that surgery shouldn't be the first answer for the issues you describe until some very thorough research and a solid attempt at conservative treatment. Find a really good pain management program. At best, most people that have lots of symptoms before surgery, do improve in some but maybe not all symptoms. It also sounds pretty iffy on pinpointing the exact cause of each of hubby's problems. Make a list of the problems and which ones are the most important to fix and if they can give high assurance those will resolve then you can decide.

    Cervical surgeries seem to be good at helping radicular pain and cord compression (myleopathy (sp)). Even after surgery lots of us here still have lots of pain, trigger points, spasm, neck and shoulder pain remaining after surgery. I have a few new things that didn't exist before, now either these were brewing or they have come about because of fusion. Trade one pain for another. Surgery is not always the answer. From my personal physical experience, I agree there is some link between cervical and FM. I don't have FM, but I do have lots of issues that would lead one to think I did, and it is all coming from my neck.

    I am trying to learn as much as I can about trigger points, myofascial pain, and links to cervical issues. I am just beginning my own search and although we cannot share links and stuff here, we can reference an author or summarize anything we can share.

    When new people come on, I don't want to scare them, but for more complex cases, there is a high probability that surgery is not the holy grail. In simple cases - we hear about much more success.

    Find a really good doctor that is a sleuth detective that likes to investigate and stick with stuff. A neruologist is good, you might also find an expert in Physcial Medicine and Rehab physician. If you go to a surgeon you might find a lot of enthusiasm up front, but if your husband doesn't improve after surgery , the interest may fall off and then you are still back to square one. I say that because there are many people on this board experiencing that and the surgeons focus on "the fusion is a success" instead of what symptoms are you still having?

    Sorry this is long, the questions you pose are complicated. I hope you find a good doctor for your husband.
    .

     
    Old 06-21-2007, 12:48 AM   #6
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    Re: ACDF for fibromyalgia symptoms

    Surgery should be the last option... I have been in pain since 2003 and swore to never ever ever have the surgery, but I had tried every possible thing to correct the pain and in the end nothing worked. I actually started out with a Chiropractor, because at that time they thought that I had a sprained neck, and the Chiro made it sooo much worse. I then tried Phys. therapy, (which I still do today after 2 ACDF surgeries), ESI's, trigger point injections, toradol shots, nerve conduction tests, and I have been to several pain clinics and at least 1 Ortho and 4 Neurologists until I agreed to surgery. The quality of my life had become so bad that I would've done the surgery myself if I could've.

    I wish you and your husband all the best and I would definitely get a 2nd, 3rd, 4th etc... opinions. Good luck and let us know if we can hep you with more questions.
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    C5/C6 ACDF 08-22-06
    C6/C7 ACDF 05-22-07

     
    Old 06-21-2007, 03:38 AM   #7
    sunshine221
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    Re: ACDF for fibromyalgia symptoms

    Sue - IMO The surgery would be for the spine issues, not the fibromyalgia, although it may be hard to seperate which symptoms are which. When the symptoms get as bad as Margarets and mine (similar to hers) then surgery is definitly needed (or there is risk of paralysis). I personally had a doc recommend laminectomy instead of ACDF which has its pluses/minuses but avoids fussion. Tough decisions but remember lots of people on the board here have ongoing problems, many more have this surgery and have great results and are "never seen here again"

     
    Old 06-21-2007, 08:45 AM   #8
    sue416
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    Re: ACDF for fibromyalgia symptoms

    Thank you so much, everyone for taking time to reply. No need to apologize for making it long. I really appreciate all of your input. At this point we are going to pursue the CT of the brain and see if there is anything going on there. This history goes back to college years with inability to sleep, back pain, chiropractors, laminectomy in lumbar region in 1978, physician noted at that time there were other issues in his neck and between his shoulder blades. He stayed active, exercised, stayed strong. A very active grade-school teacher. Never could sleep well and always on the edge of being sick. Swollen joints finally led us to a rheumatologist in 1990. He was treated for ra for several years and then improved greatly by changing his diet and using supplements. Rheumatologist nearly threw him out of her office when she learned he had weaned himself from the meds and was doing so much better. Joint pain was pretty good, but still had muscle pain in back, legs, arms. Needed carpal tunnel surgery some time in the 90's. He complained for years that his muscles all over felt like he had the flu. Heavy and achy. And that he felt like he couldn't think clearly. Doctor started treating him for depression with Zoloft. He became a totally different person. Very angry and nasty. I had no clue it could be the medication, but he got himself off that and became nice again. He had also gained a lot of weight with it, but lost it. He's always been tall and thin.Everytime a new medication was started, he had bad reactions to it and would quit. He went to a lot of doctors and just didn't seem to get any help. All they could do was lots of different tests and then tell him it all checked out fine. He had a bad incident with a chiropractor who noticed he didn't have a proper curve in his neck and really gave him a good Wham. He was in bed for 10 days to recover from that. He kept trying alternative therapies such as colonics, hydrogen peroxide baths and then drinking drops in water when we could no longer get large quantities. Also, alfalfa (lots), and supplements. Treated for candida overgrowth. It kept him going for quite a long time, but never made him well. He had had several episodes of passing out, severe chest pains that radiated down his arm like a heart attack. They found he had an irregular heartbeat, but said nothing was wrong with his heart. Finally, in 2001 his school recarpeted, new cabinets freshly stained and varnished were installed in his classroom and new ceiling tiles as well. He had a severe reaction to all the chemicals and we saw an allergist. Also, went to an acupuncurist. His heartrate kept dipping down very low and he could hardly function. He also got some horrible rashes during this time. He left his teaching position at the end of that school year and just tried to rest and get better. He took another job the following fall at another school and barely made it to Christmas break. The following March he had a pacemaker put in at Cleveland Clinic. They said the problem definately was a messageing one, and not something actually wrong with his heart. His energy level returned, but he still had the overall sick feeling and pain. The school hired the substitute for full-time and rather than fight for his job back, he moved on to another school the next fall. He lasted 2 weeks and then collapsed on his classroom floor and he was back in the hospital. At that point we applied for ss diability. He was denied and being unfamiliar with the system assumed that his only choice was to get better and get another job. The allergist lady kept telling him that he just needed to find the "right" job and then everything would be okay. He was walking like 3 miles several times a week and when he said how hard it was, she said do 5 miles! I really think now that all of his doctors looked at all of these weird symptoms and assumed it was depression. Well, I'm sure that by this time he was depressed because he had been in pain for so long and no one could help him. Every anti-depressant made him worse. He spent another year of just trying to rest, exercise, and get well. He did some substitute teaching as he was able and that next fall got an office job with Headstart. Now he was having trouble concentrating, remembering things, and still had all the pain. We went to other doctors who just wanted to look at one symptom at a time and try a different medication for each one. He couldn't do the Headstart job. He just couldn't keep things straight. He was sent to a psychologist and a psychiatrist. We went to Cleveland Clinic to a rheumatolgist and was diagnosed with the fibro. All the tender points thing. The only plan at that time was to start an exercise program working up from 10 minutes a day of walking. Steve has continued to try to keep moving, but has only gotten worse. He developed really bad psoriasis on his elbows and head. Because Cleveland is 5 hours away, we went to the only other rheumy in our area who diagnosed psoriatic arthritis and refuses to treat him for fibro. He was on Enbrel for over a year, but quit that in order to have a mylegram CT of his cervical spine and to avoid possible infection. He has not restarted the Enbrel. He put on about 50 lbs with that and has not lost much of it. We are very concerned about damage that medications can do. The psoriasis hasn't gotten bad again and the joint pain definately can be controlled with diet. (Mostly avoiding wheat) We found the fibro/cervical link on the internet and have pursued that course. He has tried neurontin twice. We didn't realize it was the same one because you get different names when it's generic. He had tried it in January with one doctor and felt very strange in his head. This last time was in May. A different doctor. Well it must have helped his pain, but you know what they say, "No pain, no brain" Yup! That's just what happened. He was picked up 2 miles from home by the state police when some people noticed him walking around looking confused. He had to walk down a dirt road through the woods, up and down a couple hills to get where he was. He didn't know his name, where he was, or how he got there. Somehow, he remembered our son's name, but not the last name. He came up with something close and they figured it out. His precise symptoms now are, dizziness (room spins especially when he looks up and he falls over), mental confussion, but this is worse when he takes medication. The current one is baclofen (sp?). Because of his reaction to the neurontin, he's supposed to work up from half a pill once a day, to two pills. He has taken the smallest dose for over a week at a time and gets so brain dead and feeling sicker that he has quit it. It does seem to take away the pain in his legs, but he can't keep a straight thought in his head. He walks slowly and can not really lift his feet properly. He has hearing loss on one side. SEP test showed slowed nerve responses, but Cleveland doctor does not take that test seriously. Both Dr. Heffez and the neurologist here found hyper reflexes in the knee, but the dr. in Cleveland either didn't hit him in the same place or something, because he didn't have the same response that day and no note was made of it. Numbness in fore-arms when slightly raised. (Has difficulty shaving, drops things) Numbness in thighs. Vision goes blurry after reading for a few minutes. He doesn't drive unless absolutely necessary. He walks short distances, maybe up to 100 yds before he's exhausted. He has always loved the outdoors, hiking, canoeing, kayaking, etc, but now finds bright sunshine almost painful. All of those activities would be impossible for him now. He rarely leaves our home. He watches TV most of the day to take his mind off how he feels. His neck and back always hurt. His calf muscles are in knots. Physical Therapy made his neck worse. He's had some massage. So far they have also been into crystals and such and we're not so sure about all that stuff, but the massages are good. I keep trying to get him to find someone, but I know he feels guilty about the costs. We have 2 children in college and one will be a senior in a Christian school, so there's an expense there. We are getting ss diability now and that helps, but there were several years in there where we had to use up all our other resources. I have a great job and I'd better get back to it! I know this is way too long and if you've actually read all the way down to here, thank you. I just wanted to explain further, that this latest thing with the ACDF isn't like a first resort. I really appreciate hearing about other people's experiences. I know that this surgery isn't something we want to just jump into. Thanks for all your help.

    Sue

    Last edited by sue416; 06-21-2007 at 09:06 AM.

     
    Old 06-21-2007, 04:39 PM   #9
    monarog
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    Re: ACDF for fibromyalgia symptoms

    Dear Sue,

    I'm really very sorry to hear about your husband's health issues; how frustrating to have it go on and on with no definite answers or help.

    I'm sure with all you have been through and researched that you've looked thoroughly into Lyme Disease. Just thought I'd throw that out there. Just from all my reading trying to get myself figured out - that's something that constantly pops up. My understanding is the blood testing is very unreliable - one can clearly test negative yet actually have the disease, and that one should see a Lyme Literate Medical Doctor only - when trying to rule it in or out. I've also read that there is a lab in CA that is the one to use when sending lab work to be tested.

    Anyway...you've probably looked into this; the web has some very good resources. Just another idea. Keep us posted on how things are going. Blessings. Mona

     
    Old 06-22-2007, 06:51 AM   #10
    sue416
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    Re: ACDF for fibromyalgia symptoms

    Thank you Mona, He believes he was tested once with the blood test and it came back negative. The ns mentioned Lyme disease on Monday, but it was kind of in passing. Steve brought it up to a couple doctors, the family doctor and rheumatologist and they brushed it off, saying we don't have it much in this area, but of course we've been all over the place. We'll try to check that out further. I'm so glad I found this site. I'm not sure about getting a blood test done in CA when we're in MI, we'll ask our nurse practitioner. She's a blood hound and doesn't give up. Thanks again for your help. Sue

     
    Old 06-22-2007, 08:00 AM   #11
    monarog
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    Re: ACDF for fibromyalgia symptoms

    Sue...

    Quick note...we don't have a lot of Lyme in WA state either, however, I've been all over as well. It's certainly worth a closer look for you guys as they can't seem to figure things out. People send their lab samples from all over the US to the CA lab, it's called Igenex. You can have the necessary lab work done right where you are, but then they send the specimens off to that CA lab. Sure worth a try, at least to rule something else out. Sounds like the testing, for the most part is VERY unreliable, unless you get a doc who is very savvy in Lyme Disease (known as a Lyme Literate Medical Doctor) and use a highly skilled lab that specializes in the testing. Keep us posted how he's doing. Mona

     
    Old 06-22-2007, 12:04 PM   #12
    sue416
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    Re: ACDF for fibromyalgia symptoms

    Thanks, I'll bring that up to our np this weekend. She's also our neighbor and we've known her for many years. She's the only medical professional we've found who isn't offended by us trying to search things out and trying them.

    Sue

     
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