Having a rough night

I'm a week and 2 days in recovery from my back surgery and I've been feeling pretty good up until now! My MS is kicking my butt! I'm dealing with the hug and bad headaches and jaw pain. No fun at all! I'm trying to stay strong but it's hard. And now I have to wait for my insurance to approve an MRI before I can start treatment! Always something!!!

17 Replies

  • Sorry to hear you are feeling bad... how did your back surgery go?

  • It went really good! The easiest one of my 5 back surgeries. No problems and they kept me over night just incase. I was up off the surgery bed as soon as I got to my room I told the dr I had to pee and he wanted to give me a bed pan I said no thanks and got up and walked to the bathroom they were all in shock lol

  • Morning Froggyiechick, I hope that you have a better night, I know what you mean about the surgery I had 5 ops in 5 years, but please take your time to recover. You need to rest if the ms will let you. Cheers Jimeka

  • I'm trying to rest but I'm restless lol wow you sound like me with operations! My staples are sooo itchy right now which is good because they are healing but wow! They are in a spot I can't reach lol

  • Frogggiechick, it's Fancy1959 just touching base. Our MS can be a terror, like a monster, when we add severe stress to our bodies! I know your pain. On top of my MS I have a rare hereditary liver disease! Talk about lucky, hugh. In November 2015 I went to Cleveland Clinic and had liver reduction surgery. The first 5 to 6 days were ROUGH! I Spent 8 days in the hospital. The first three were the worst. The day I came back from recovery will make you laugh. At the time I did not laugh but looking back on it there's nothing else to do but laugh. The roommate I had had dementia. I was awake with her watching SpongeBob SquarePants because she had her TV on very loud all night long and her lights on. She kept ordering iced tea with extra ice all night long. She kept trying to get out of bed Or as she called it her recliner. Needless to say the nurses never stopped streaming into our room. By the next morning I was a complete mess. I wound up sleeping for the next two days when my surgeon got me put in a different room. Then I felt like I could fight my way through the Ms and the pain.

    Unless some one has surgery while fighting MS it's hard to imagine how bad the MS can flare up from the stress of the surgery. The best part for me is liver surgery didn't fix my liver disorder. I'm looking at liver transplant sometimes in the next year or so. Stay strong and do as much as you can. Fight through your MS while your body heals. Insurance companies executives who choose to play "god" and deny needed treatments would do well to remember Karma is a powerful force. I, too, have spent the past 4-5 months seeking approval to get the treatment I need. Reach out as often as you need. You are not in this alone! Remember together we are stronger! Fight on, don't let your MS win! Kick it's butt back while you let your back heal.

  • Wow that sounds like no fun at all! I'm sorry you went through all of that and then didn't help! I also have diabetes on top of all of this so it slows my healing and causes other issues! It's sooo frustrating sometimes! I usually have a good attitude about it but some days I'm ready to give up! I have a good support team at home and they always keep me going. For this being one of my easier surgeries the MS sure made it a struggle. I agree with u unless u have MS and undergo a surgery you have no idea what people deal with! I really hope you get the treatment u need! And soon! Please keep me posted!!! My favorite quote from a cute little fish! As Dory says JUST KEEP SWIMMING!!!

  • Sorry that it's tough going right now. Hope you get some relief soon. What kind of back surgery? United this was your 5th. I've had 2.. A laminectomy and lower back fusion.

  • I had them too! I have a rod and 3 screws. And a spinal stimulator that was nothing but problems 3 surgeries just on that! I had it removed because it hasn't been working since Dec. and I needed it out to get an MRI.

  • I love my lumbar fusion. 2 rods, 4 screws, 5 yrs ago. No more pain, full flexibility. Bone graph from hip.

  • Ouch! I wish I was pain free but I still have a lot of pain. I've just made up my mind it's something I have to live with! I fight so hard everyday dealing with it! I hate taking pain meds because I can't function on them. I'm sooo happy it worked for u!!!

  • Hi fellow back surgery recipient. I had major back surgery Dec. 2015 and was doing well, but alas, the bone deteriorated around each and every piece of metal in my back. The surgery was redone 4 weeks ago. For a chuckle, my wonderful surgeon presented me with all the bolts, screws, etc. (sterilized) yesterday during my follow up. Gotta laugh cause anything else is a drag. I'm 71, but my family tells me I'm as irreverent as a 25 year old.

    What kind of treatment are they wanting to do for you? Have you received a bone graph stimulator device? Guess it all depends on the type of insurance. I have one, but didn't use it post 1st surgery. I'm sure using it now. Don't know this surgery will work either.

    Working hard on my attitude and my ongoing disrespect for MS. Family and I find laughing helps deal with things.

    I send you my best wishes and don't let em grind you down. Fight for yourself and when you need a good cry, go for it, but get up again and resume fighting mode.

  • Love your attitude 😄👍🌻

  • I did have the bone graph stim! I wore it every day until the dr told me to stop. I've had a fusion a rod and 3 screws. But the last 3 surgeries were on a stimulator. It was supposed to be my last chance at pain relief! I finally got the stupid thing removed! Don't ever get one if they offer it to you! Nothing but trouble and doesn't help with pain at all! And I couldn't have an MRI done because of it. But now I'm wondering if all my pain is due to the MS. I have been sick for 6 years and I fell in 2011 so it could be? I'm waiting to get an MRI done and then I can start ms treatment for MS!

  • Hi again my bone graft stimulator is an external unit. Every day I wear it 30 minutes. Who knows if it will help. I have no rods YET, but you never know what tomorrow brings.

    I received an interesting comment from my FORMER neurologist (spit). After asking him what issues might occur post surgery, reassured me flare but could keep under control with steroids. Last we spoke told me MS probably disintegrated bones! Dumped him on the spot. Never told me that was possibility.

    Be your advocate and remember they're all PRACTICING medicine.

  • Yup that is the same thing I had after my fusion surgery! I'm not sure if it helped but after having the previous surgery fail I made sure to do everything I was told to do!

    You definitely have to be our own advocate! And most of them don't understand what we go through each day! Hard for them to understand!

  • All the best, we're here for you as you kick MS's butt back...

  • Thank you! I agree!!

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