Having surgery,worried about having cfs and recovery

Discussion in 'Fibromyalgia Main Forum' started by rushword, Dec 11, 2006.

  1. rushword

    rushword New Member

    I got sick with the cfs 10 months ago. I have learned to pace myself, which I thinks helps sometimes. I still run low grade temps and feel like crude. Since I got sick, I noticed my neck was bothering me, amid all the other symptoms I have been having. I told my doctor to send me to a Neurologist, because I knew my neck was messed up, plus I have been having other neurological issues, including shock sensations running down one of my arms. I had an MRI that shows that my Spinal cord is being pressed on in my neck. I was told by the Neurologist and Neurosurgeon that I would get progressively worse, and could lose the use of my arms and legs. Also, if I have a minor accident that bends my neck to far I could be paralyzed from the neck down. Severe arthitis has attacked my neck and all the vertebrae are messed up and causing the narrowing in my spinal column in my neck. I am scheduled to have surgery Dec 19th. The plan is to cut most of my vertebrae in my neck and put chunks of doner bone in each of my vertebrae to increase the size of my spinal column, thereby taking pressure off my spinal cord. The operation is called a Lamnioplasty. If I catch cold, they won't do the surgery, as they worry about risk of infection. I had a cold a few weeks ago, and have been feeling worse with being tired, my small temps, scratchy throat,stomach cramps with diarhea, ect. I just want to have this surgery and get it over with. It's a risky surgery that can mess me up worse (paralysis, more pain ect). I am afraid of how I will recooperate from this fairly major surgery, while I am still dealing with the CFS. Has anyone out there had to have surgery with this CFS also? As most of you can imagine, I am stressed out about having this surgery, and you all know what stress does to us... probably why I am so crudy right now.
  2. Kimba4318

    Kimba4318 New Member

    Hi rushword.. I am so sorry you are going thru all of this. Sounds quite scary. I am now recovering from surgery. I had it last Wednesday in my stomach to remove some nerves and do a scar revision from a previous surgery where I got a staph infection and they had to clean out all of the bad stuff. I was left with a huge hole in my stomach and many nerve issues/severe pain as a result.

    I was quite worried about surgery and having another infection and ofcourse the FM sending me into another huge flare. Docs know I have FM and are on the fence about CFS, so I cannot tell you for sure if I have that. I am actually recovering much better than anticipated. I am in pain, but it is under control with the meds. I am severely fatigued, but that coudl be with any surgery.

    I cannot comment on that excat surgery,but wanted you to know I am feeling much better than I expected.

    Hang in there. When is it shceduled for? I went in and had a bad cough and sore, itchy throat and ignored it because I wanted to get mine over with too. They told me to come in the day of surgery and they would asses whether I was healthy enough for it or not. I think yoiu should be honest about how you are feeling. I would hate to see you get an infection if it could be avoided, then it will be in there hands if they say it is okay to proceed.

    Good Luck and keep us posted & let me know if you have any other questions.
    Hugs
    Kim
  3. rushword

    rushword New Member

    Sorry you had to have surgery. I am glad that you are not experiencing too much pain or another infection since your surgery. Your operation sounded pretty awful too though!
    Since I am having the sore throat and some other cold symptoms still, I am going to my primary dr this afternoon and see if he thinks I need to take antibotics now before the surgery. I have alot of trouble with my stomach- cramps, diarhea, ect, so I am not crazy about taking antibotics either. I'm going to ask him if taking a shot or shots of antibotic would be easier on my stomach than an oral antibotic. Don't know if it makes any difference, but I'm going to ask.
    Thanks for taking the time to write to me. I do have some questions about your stomach. I am wondering how you got a staph infection in your stomach in the first place? Do you mean part of your intestines had to be removed?
  4. cozykitten

    cozykitten New Member

    Hi Rushword,
    I know you are worried and scared. I had 2 shoulder surgeries last year, 6 months apart. Both of my shoulders had frozen and had bone overgrowth. They had to break loose all the scar tissue, saw off chunks of bone, and clean everything out.
    The recovery was painful, but worth it. I never had any kind of a flare from the surgeries. I had feared that too. Sometimes, its the stress of worry that triggers a flare more than the surgery event.
    You will probably do just fine with everything. And after the surgery heals, you will feel so much better without all that pain and tingling, and the fear of paralysis. What you are dealing with now sounds much worse than the recovery from the surgery. So I feel encouraged for you. You will do great!
    Hugs,
    Kay
  5. rushword

    rushword New Member

    Thanks for your encouragements to those of you that have responded. I saw my primary dr and he gave me an antibotic today, so hopefully I will be all well by Dec 19th. I am feeling pretty confident about the Neurosurgeon that I chose. The surgeon removed a large tumor from my brothers head about 9 years ago. My brother is still around!
    But it is still scary, expecially since he told me all the stuff that can go wrong. I will be so glad when it is over!!! You all take care too!!!
  6. ladykew

    ladykew New Member

    Since your doctor is aware of your CFS and that you are having the low fever and scratchy throat, I don't think you should worry at all. It sounds like you really trust this surgeon, and that is very important.

    I had gallbladder surgery, which was emergency surgery, while I was in a flare. They gave me vicoden or hydrocodone for pain, and it kept me awake the entire night. Other than that, I was fine except I had a longer than usual healing time.

    The stress of worrying about it all was worse than anything else. So, try to relax and let your doctor do the rest. I'm sorry you have to go through this, but I do hope and pray that you will be much better afterward.

    Hugs for you,
    ~~~Lew
  7. MelaC

    MelaC New Member

    Hi rushwood I have had 4 major surgeries in 6 months. The last was 2 months ago. I have found having just one has left me feeling drained.

    I think it all depends on the length and how major the surgery is. Each of us is different so its hard to say how you will feel.

    I have also had my entire lumber spine fused years ago and also was told of the complications that could occur. I was also very anxious which I think is perfectly normal but having confidence in your surgeon should help. He will have done this procedure many times so you can feel confident that he knows what he is doing and you can try and relax knowing that.

    I will have you in my praters that all goes well and that you have a speedy recovery.

    Hugs Mela
  8. PVLady

    PVLady New Member

    Perhaps you could have treatment to strengthen your immune system before having surgery.

    I saw a panel discussion today with CFS specialists in Torrance CA. They have many treatments and most depend on the individual patient and their lab results.

    Dr. John Chia has researched CFS and Fibro for ten years.

    He tests your DNA for enteroviruses which he feels cause most of the CFS. In addition to Epstein Barr and Herpes.

    He said the enteroviruses hide in your body and must be treated aggresively. There are so few doctors doing this type of work. I will be seeing him in January.

    I made notes from the seminar and will try to post later. Other treatments he mentioned were months of Zithromax, gamma globulin, interferon, various supplements, etc.

    After listening to the panel discussion, I would definitely want to ask someone like him about my condition before having surgery.

    Perhaps in your area you can find an infectious disease specialist who works with CFS. You could always ask your doctor to consult with Dr. Chia.
  9. Kimba4318

    Kimba4318 New Member

    HI rushword, sorry, just getting back to your question.... I had lots of extra skin and pulled muscle from having kids. The doctor suggested I have abdomnioplasty (tummy tuck), this was before I was "sick".... I had it done and a week later was in the hospital with a huige open wound and a staph infection. They cleaned out the bad parts of it and left me with an even bigger hole in my stomach, it actually looked like an open mouth (gross I know). They apparently cut into my nerves while cleaning it out. (this is when my fibro started and my life changed forever)

    I have had fire and burning pain in that area and the doctor said they needed to do something with those nerves and also pull the skin together so I would have some sort of padding where the skin was cut down to the muscle. That is what last weeks surgery was for. There was not any internal organ problems luckily.

    I am so glad you are on antibiotics now. They should also put some in your IV prior to surgery. That is pretty standard practice now, even for the healthy. They did that to me and I am convinced it made a huge difference.

    When is your surgery scheduled for? Good luck with everything and let me know how you are doing.

    Hugs
    Kim
  10. rushword

    rushword New Member

    KIm, I am scheduled for next tuesday, Dec 19th. I hope to get the surgery over then. I am a spiritual person, so lately, I'm thinking "let go, let god".
    I am assuming they will put antibotic in the iv also, since they are adding doner bone in me.
    I hope your pain is improving. You have been thru alot. Does your stomach feel any better than prior to your surgery yet?
    I have been lucky up to now in not having to deal with much excrutiating pain. I have had a couple of headaches that took me to the emergency room. But the rest of my pain has been manageable, miserable at times, but it comes and then goes away. I am as much frightened by the possible pain I will be in. I'm just hoping it will go away with time. I'm a big chicken! Before I got sick I thought I was a pretty tough cookie. My job was going after dead beat parents that didn't pay their child support. I used to get screamed at, and called every name in the book by dead beats that weren't paying there cs,especially after I would find out where they worked, and have the child support deducted from there paychecks.
    CFS has been humbling. I have learned that I didn't know what tough was!
    Let me know how you are doing.
  11. findmind

    findmind New Member

    Dear one, I'm so sorry you have such complicated spinal problems, but if you've been around here awhile, you'll hear a lot of us do.

    I would only suggest that you go to ncf-net.org and read their Anesthesia protocol about the sodium channel, ok?

    Best of luck and many prayers for your successful surgery and recovery...

    Keep us posted, ok?

    WE CARE...

    findmind
  12. Kimba4318

    Kimba4318 New Member

    Hi rushword..
    I do hope they get it over with for your sake. I know how it is and I was so anxious to get mine over with. Yes, I am sure you are right about the ABX... espescially for the donor bone.. yep, I am sure they have that covered.

    I am feeling a little better. My nerves have still been firing, which kind of scares me since that was the main reason I had this done. I have some blisters under the tape that is over the scar, so that is not fun.

    Do you have a pain mngmt doc or any kind of pain mngmt plan in place for after surgery? My pain doc made sure I was totally covered for after surgery. Ofcourse while you are in the hospital, they will make sure you are covered, but I hope they send you home with something strong so you are comfortable.

    Maybe you are not used to being on many pain meds, so you may just need the "normal" treatment. I was worried because I had to take meds on a regular basis prior to surgery. They did cover everything though and I felt as good as I could feel.

    Thanks for asking about me. My next surgery is January 3rd... sooo fun, isn't it? How many days will you be in the hospital?

    Hugs
    Kim
  13. rushword

    rushword New Member

    Kim, The neurosurgeon told me I would be in the hospital for 3 days.
    I am not used to taking heavy duty pain medicine, so hopefully what ever they give me will work good for me. I will be sure they send me home with some good pain killers too! There is a saying, "no pain, no gain". I prefer the saying "no pain, no pain"!!!
    I am sorry that your are still having nerve pain. Maybe it just takes more time to feel better. Hopefully you will feel better soon in your stomach. I can't imagine having to have surgery again in just a few weeks after just having one last week. Can you tell me what you other surgery is for?




  14. Kimba4318

    Kimba4318 New Member

    Yep - the next surgery is for removal of a hard lymph node. They did a biopsy and said "so far so good" but have to remove it to ease my pain (putting pressure on other nerves) and to do a full examination of it.

    I was pretty scared by this because everything I read on Hard lymph nodes took me to cancer sites. I am pretty sure it is not cancerous though. I think it will be an easy recovery but worried about what nerves he may hit. I heard ppl. can lose use of the arm and other bad things because there are lots of little tiny nerves in that area. Ofcourse those are just the scary stories, so I will be positive about this one.

    It is located behind my left ear by the way. I do wish you all the best. I am glad they are keeping you for those 3 days, I know you will have the best pain coverage that way. This way you can see what works for you while you are still in the hospital.

    Are you feeling any better with the antibiotics you are taking? Hope so.
    Hugs
    Kim
  15. rushword

    rushword New Member

    I still got sinus drainage, causing me to cough some. But hopefully that will get better. However, my 17 year old daughter is home today with a stomach bug, vomiting. Ug, Hope I don't catch that!! I been washing my hands constantly. I think I would of had less bugs to catch in the spring or summer. To bad I didn't know about my screwed up cervical spine then.
    Hope your feeling better today. Did you get your bandage problem resolved? My husband had hernia surgery several years ago, and he broke out in blisters all over the area where the tape was. He looked miserable. Once he got the tape off, it started healing.
    I hope your next surgery goes easier than the one you had last week. Did you have any problem with the anesthesia? I have a couple of posts here about anesthesia. I have had some anesthesia before and not had problems, but that was before I got sick with cfs.
    Take care,
  16. Kimba4318

    Kimba4318 New Member

    Yes, KEEP WASHING your hands! I know how you feel, I am so paranoid about that stuff - germs...
    Feeling better every day.
    Yuck.. tonight I got the rest of the tape off... Yikes! I look diseases... did your husband have what looked like acne or blisters all around the area that was taped? I feel so gross... I hope that is all it is, a reaction to the tape. Also, on the skin above the incision looks blue in color, like it is dead or something.. that is grossing me out too.

    Anesthesia was actually great. SOunds funny but, I woke up so alert and in little pain and wondered around my house all night thinking I was good to go! KInda funny, guess the drugs they used were great. The original surgery (where I ended up with a staph infection) I woke up vomiting, dizzy and felt like I was dying. Maybe my body knew it was already infected.

    I actually want to ask the doc on MOnday what they use, because I was under a couple of hours and felt like I had been out for only a few minutes from the effects of it. I hope your surgeon and my next one uses something similar.

    Anyway... thanks for asking. Keep healthy and feel better ( hate that yucky stuff). Let me know if you do not mind, about hubbys blisters, if you remember.

    Hugs
    Kim
  17. findmind

    findmind New Member

    wake, that article was right on! Thank you so much for posting it...we all need to know these things; the drs sure don't.

    Good luck, rush, and I hope you are taking these articles to your surgeon!

    Best to you...

    findmind
  18. rushword

    rushword New Member

    I remember he had a lot of blisters. They had put a bunch of tape on him. They were raised, red blisters. I don't remember what his actual incision looked like.
    I'm thinking that after your able to bath, those blisters will get better.
    Try not to worry to much about your next surgery... I know that is so much easier said than done!!! I know how scary things can be. Just try and hang in there.
    Take care!