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  • Myelopathy prognosis

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    Old 05-15-2003, 01:44 AM   #1
    Sulynn
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    Post Myelopathy prognosis

    Okay, I'm getting worried. I know that the nerve damage I had from the cord compression could be with me forever. I know that it can even be worse for a couple of weeks after the surgery...but this much worse?
    Prior to my surgery I had pins & needles in finger tips all the time, a cold sensation in my lower left leg that would come and go, hyper reflexes, spasacity (sp?) and occasional toe drop in right leg, occasional balance problems and a general weakness/dizziness that happened occasionally. It was 7 months between onset of problems and surgery.
    My leg problems were never so severe that I couldn't walk fast...I just couldn't walk super fast. Now I am down to nearly a shuffle. It has been like this since surgery, but I never gave it a second thought...just thought I was weak from surgery. I get intense, very frequent weak/dizzy spells since the surgery. Again I never gave it a second thought until now. I've had 2 c-sections (I was put out for both of them) and never had these problems. It's occuring to me that this is neurological. If it were weakness due to surgery I think I'd be getting better each day.
    I'm wondering if it's normal for things to get this much worse after surgery and if it's possible that this won't get better. I was prepared for the surgery not to change anything, but I wasn't prepared for things getting worse.

    Sulynn

     
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    Old 05-15-2003, 03:18 AM   #2
    Midge130
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    Sulynn, I'm so sorry! How awful! I'm pretty new here, so how long ago was your surgery? Have you said anything to your NS yet? What did he/she say? I haven't had my surgery yet, so I have no helpful info, just an "I'm sorry and hope that things will getter better for you....SOON!!!!"
    Midge
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    -Born a premie in 1964-8 wks early
    -C-section 1990, 1992, & 1995
    -Shoulder pain since 2000
    -C4-C5 bone spurs causing central canal stenosis. Annular tear.
    -C5-C6 mild narrowing of canal.
    -C6-C7 disc bone spur and annular tear.
    -C7-T1 bone spur and annular tear.
    -No surgery;I'm not bad enough yet!

     
    Old 05-15-2003, 04:11 AM   #3
    Memer
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    Hi Sulynn,

    I'm so sorry to hear how bad you feel. You're not alone. With the exception of dizziness (never was dizzy at all), that's exactly how I felt for several days after surgery. I couldn't straighten out my legs because of pain, and I walked like an old lady. After ten days or so, my lower body started getting better. It took about eight weeks or so for my upper body to start feeling better. I'm about 10-1/2 weeks now and still have more pain than before surgery.

    The good news is that I don't have any numbness or tingling, and I don't have any of those electric shocks going down my arms. I just have more pain now.

    Even though I had these symptoms, I still think you should let your NS know. There may be something that can be done for you. My NS's nurse was no help. She told me to go to the ER. She gave me the impression that she would tell anyone to go to the ER no matter what. It seemed like that was her standard answer. I didn't go, but I have regretted it since. I think I might have gotten better faster if I had gone when those symptoms came on so strong. From reading the posts on this board, I really don't think we should have to suffer like that.

    Please consider calling your NS.

    Take care.



    [This message has been edited by Memer (edited 08-04-2003).]

     
    Old 05-15-2003, 05:02 AM   #4
    Sulynn
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    Midge, my surgery was last Saturday. Memer, I'm going to call my NS today, but I'm not expecting much. I called about the pins & needles in my fingers being worse and I was told that sometimes the nerves swell and things will get worse, then better. What's happening with my legs and balance though seems so extreme. These symptons were present prior to surgery, but not even close to being this severe.

    Sulynn

     
    Old 05-15-2003, 05:21 AM   #5
    Memer
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    Sulynn,

    If you get a chance, read jdog's reply to RATHER BE FISHING under the topic called "Help! Newbie with lots of questions and fears."

    It really helps me to know that someone understands. Maybe it will help you, too.

    I feel your pain.



    [This message has been edited by Memer (edited 08-04-2003).]

     
    Old 05-15-2003, 07:54 AM   #6
    jdog
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    Hi Sulynn -

    Jdog here. Just saw Memer's note to look at your post. Sounds like you're having a rough go of it. Sorry you're so far away or I'd make a house call.

    I just wanted to make sure your neurologist gave you a med for the pain and a med for the spasms. You should have both. For the tingling and such, ask him(her) to prescribe you a med called Neurontin (or Topomax). This will help keep your nerve impulses under control and keep them from firing for no reason at all. When I was on Neurontin, I ended up eating like a pig, so I had to switch to Topomax.

    As for the dizziness and slow walking, the pain meds cause the dizziness. My worst time was anytime I moved from a lying down position to sitting up or standing. The dog gone room would spin.

    Now the shuffling IMHO is just a part of the process. You spent quite a bit of time in bed. Very little walking. I used a cane for 2 months. During the first month, my legs just felt unsteady. The more I walked, the better it got. I really tried to stay on smooth surfaces. During the second month, I got to where I carried the cane, but did not use it for balance unless I felt weak.

    You've just had MAJOR surgery, Sulynn. Sorry I can't talk to you in person or over the phone, this will have to do. Ask your neuro about Neurontin/Topomax and do your walking with a cane for another couple of weeks to see if it improves. If it doesn't, then immediately bring it to the Neuro's attention.

    Sulynn, I have to put in a disclaimer that I'm not a doctor, only a patient who's had an ADCF and a lumbar laminectomy.

    I'm also going on vacation until just after Memorial Day, so I won't have access to a computer, so Memer will be here to provide more support.

    jdog
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    Old 05-15-2003, 10:05 AM   #7
    melanie dawn
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    Hi Sulyn,
    I am so sorry that you are having such a rough time. In saying that, be kind to yourself. You have just had magor surgery for your spine and spinal cord. This is unlike having abdominal surgery. ANd your neuro is correct, part of the healing process is the inflammatory response, which post op can make you feel worse before better.Get lots of rest , be kind to yourself and listen to your body, it will give you the guidelines for rest and activity. ANd always notify and talk to your surgeon if concerned. They are the ones who did the procedure , and we are all individual , so our surgery and responses to it are also individual.Let your surgeon do the other part of his job, which is to explain things and provide post-op support and answers. He cant help you with things , if he doesn't know.
    I hope you are soon feeling better, keep in touch and let us know how you are.
    Mel
    __________________
    Congenital Cervical Stenosis,complicated by:
    Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
    loss of lordotic curve
    Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity

     
    Old 05-15-2003, 06:06 PM   #8
    Sulynn
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    You all are great...thank you so much for being here. I called the NS today and got a prescription for a cane. My family says that my walking has improved some compared to my first day home, so maybe I'm expecting too much too soon.
    I do wish this dizzy type feeling would stop...I had it prior to my surgery but not nearly as often as I do now and not as intense. I don't think it's from pain meds because I only took one Tylenol 3 yesterday and I didn't take any today. I'm not really in much pain...it's just these dang neurological problems.
    I didn't know they could give me something to help the pins and needles in my fingers! I'll have to call my NS again in the morning. They must love me...I've called almost everyday...lol.
    I hope everyone has a nice night and is as pain free as possible.

    Sulynn

     
    Old 05-15-2003, 07:17 PM   #9
    winged phantom
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    Sulynn, remember that the anaesthesia can cause vertigo and dizziness, too. Use your spirometer as the nurses taught you, or take a slow, deep breath in as far as you can without coughing , hold it five seconds, then exhale as much as you can. Do it.... gee, I don't remember how much. Do it about 30 times per hour that you are awake... do it much more than you want to do it, in other words! This will open up all those itty bitty alveoli and give them a deep, cleansing breath!

    Hope you're soon feeling more steady. Take care and don't overdo it. Let people baby you; if you let them think you can do things, they will expect way too much of you way too fast. This was MAJOR SURGERY!!! It'll take months to recover from it.

    wr

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    • 12/29/89 C5-6 Microdiskectomy (no fusion)
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    • 4/9/03 ACDF C4-7 with plating and donor bone

     
    Old 05-15-2003, 07:36 PM   #10
    jdog
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    Sulynn -

    I was a bit of a pest on the phone, too. But when I recovered enough, I brought in treats for the NS and the office staff. I visit so much now, they all know me by sight.

    jdog
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    Old 05-15-2003, 07:44 PM   #11
    jdog
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    Sulynn -

    After about a month, when you feel bunches better, and I KNOW YOU WILL (DANGIT), speak to your doctor about MASSAGE. I was fortunate that the place I did my post-surgery physical therapy at is also a hospital, a gym, a convenient care, so as a member of the gym, I get discounts on massages, an hour being $55, but the massage therapists speaking with my PT before my first massage and knowing to be *extremely* gentle around the neck area, but getting all of the knots out of my legs/arms/lower back/butt/you-name-it. With all of these muscles moving around, waking up, going to sleep, rocking-around-the-clock, they try and compensate for ones that can't yet pull their weight, so they are really stressed out of sorts, and MASSAGE is a great way to help you provide them relief.

    Due to this lumbar herniated disc giving me trouble, I've cut back on other expenses and get a massage every week. It's fairly expensive, but I don't think I'd be moving as well if I didn't get it.

    Take care and talk to your doctor about getting MASSAGES when you are more recovered. And don't forget those treats for the staff. They understand your concern and are forgiving and love special things done for them.

    jdog
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    Old 05-16-2003, 05:25 AM   #12
    Sulynn
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    Winged, you are so right about letting others do things. I made the mistake yesterday of telling my mother that I needed to do more and she pulled right back!
    Jdog, what a wonderful idea to bring something in for the staff! I've never had a massage, but it sounds soooo nice

    Take Care,
    Sulynn

     
    Old 05-16-2003, 06:04 AM   #13
    jdog
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    Sulynn-

    YOU DO NOT NEED TO DO MORE!!! Take it easy, it's the only time in your life you'll get to do it. This will be a rough time, but take some time during this to smell the flowers. Also, do what I said about MASSAGE. Trust me, it will do you wonders. I was raised to think that such thing like massage and long distance phone calls were not for us working class folk, but I've since learned different.

    Jdog (vacation in t minus 10 hours)
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    L4/L5 Herniated 1/2003

     
    Old 05-16-2003, 09:15 AM   #14
    melanie dawn
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    HI Sulyn,
    you just go ahead and pester your doc. As a nurse one of the phenomena in health care over the last 10 years is early discharge from hospital after surgery. Not very long ago you would have been in hospital for at least a week with this procedure. One of the downfalls of the early discharge program , is that patients are at home , on their own right away. Questions, fears , post op stiffness, these are all ocurring at home. So of course there is a need to contact your NS etc. Many of the things that come up are after the 2-3 day post op. So never feel bad about pestering the docs. It is part of the care, one needs to have post op support. Even simple things that are normal, like day 3 post op is when the body naturally runs a low grade fever as part of the inflammatory process to promote healing. Before you would have been in hosp. when these things occur and would have had staff support. So you all just call those docs and keep them informed, and report any concerns and questions.
    Hope you have agood day , sulyn
    Mel
    __________________
    Congenital Cervical Stenosis,complicated by:
    Paracentral Disc herniations ,bone spurs C4/5,C5/6,C6/7
    loss of lordotic curve
    Advanced myelopathy inc. walking difficulty, loss of gag reflex with swallowing problems, neurogenic bladder, occipital neuralgia, spacticity

     
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