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    Old 07-23-2010, 11:54 AM   #1
    kelliek1010
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    chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi,
    i just found this board and it looks like there is a lot of good info and people going through what i am. my story: head on collision caused ruptured discs in my neck. i had ACDF surgery in sept 07. the surgery helped a lot with the migraines and shooting arm pain, but my shoulders got worse. i have constant chronic neck and shoulder spasms. my shoulders (left is worse) are completely knotted and have NEVER relaxed since surgery. i have had almost 2 years of PT, tried accupuncture, have had 4 facet blocks, trigger point injections and botox injected into the shoulder muscles. nothing has worked. i am in pain mgmt and take soma daily (flexeril at night) and dilaudid for pain. i get a massage once or twice a month which seems to help the most but since insurance doesn't cover it i cannot get them as often as necessary. every masseuse is shocked by how knotted my shoulders are. my work will not allow me to take pain medication on premises and it is getting harder and harder to get through the day. and by the time i get home the pain is acute (i work at computer also which doesn't help). the docs cannot explain why this has happened when by all accounts the surgery was successful. all they can tell me is that i will have to deal with it using medication and 'treatment' for the rest of my life. i fear if it keeps getting worse at some point i won't be able to work outside the home. is anyone else dealing with this? have you found anything that helps or can cure it? i am getting mroe depressed about this every day and feel i am at my wits end. i am willing to try almost anything at this point. thanks for reading.
    kellie

     
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    Old 07-23-2010, 01:55 PM   #2
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Has anyone suggested using baclophen? I just started taking it in Dec and it has given me remarkable relief from my spasms.

     
    Old 07-23-2010, 03:33 PM   #3
    kelliek1010
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    no, i have never heard of it. thanks - i will look into this

     
    Old 07-23-2010, 04:33 PM   #4
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Quote:
    Originally Posted by kelliek1010 View Post
    no, i have never heard of it. thanks - i will look into this
    I don't know how you work at a computer for 3 years with your chronic pain and the meds you take. I had to stop working in July of 2009 with diagnosis of myelopathy/spinal stenosis. With the lack of coordination, SOB, falling, tremors, muscle weakness and heaviness and the inability to even lift my arms above shoulder level I had to quit and go on disability. The hardest thing I ever had to do since I loved my job so much. Now I use a cane and a wheelchair to get around. This all happened to me in a course of 6 months every week a new symptom. I never would have thought this neck situation could lead to this and I was a Critical Care RN for 21 yrs.

    In 1982 I had an incomplete fracture of the C4C5 with paralysis(lasted a little over 24 hours). Had posterior fusion and hip bone graft. With the added bonus of traction, halo brace, strykor frame bed and a 6 week stay in the ICU. It was hard on a 28 year old mother.

    In 2006 I had a ACDF of the C4C5C6 with cage and plate. Why both don't know. Since 2006 with the surgery the pain never went away. Trigger point injections, epidurals, drugs pain pain and more pain. This really isn't easy for anyone. The hardest part is no one understands what your going thru especially the doctors. Even one doctor told me it's all in my head. Do you believe that. Luckily 4 other doctors agreed with the diagnosis. You have to prove yourself to these doctors. That's why I joined this forum. For you and others out there understand what it is like dealing with pain day in and day out.

    But as for those nasty spasms they are almost gone with the baclophen really a miracle drug for me. Tell me what led to your needing the surgery an injury. How do you cope with the pain? Does the medicine make you sleepy? Are you able to do most anything except lifting? Did you have this neck problem for long?

    Thanks for listening.

    busterbuddy

     
    Old 07-24-2010, 12:13 PM   #5
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Busterbuddy,
    Thanks for the reply. I am not allowed to take my pain medication at work, so many times by the time I get home the pain is very bad. And then it takes longer and more medication to get relief. Yesterday I had to close my door 3x and lay down to try to alleviate the spasms. When they get bad I literally have a hard time holding my neck upright. And I have to work - my husband died 9 years ago of cancer and it is just me and the dogs and the bills have to get paid . And my job includes a lot of int'l travel. Interestingly travel does not do too much irritation (probably because I am moving a lot and so busy I can't focus on the pain)

    Your story is just horrible - I can't even imagine. How do you do it? And I have been told the pain was in my head - but for anther condition in my early 20's - and when I finally had surgery for it in my early 30's by a specialist at Georgetown they found I had a rare disease - one of the most painful conditions known. I think docs say that a lot because they have no clue what is wrong and it is easier to throw it back on you than admit they don't know. I am lucky in that my docs have been great - we have tried most medical interventions and I have tried alternative (some totally out there) on my own but nothing is working. They admit they are stumped and actually just suggested I might want to go to a good sports medicine doctor, which I probably will.

    I am in pain all the time but I go thru periods when it is much worse. Something happened though this winter - with the cold and all the snow we got here in Baltimore it just cramped up and stayed that way for several months. Then it got much better in the spring (I think because of the heat) but the last month is back to being near unbearable and the constant pain is really getting me down. And like you said there is something new popping up each week. My lower back started to hurt this last winter. Now my shoulder is hurting on the INSIDE. So they sent me for more MRI's and that came with more bad news - they found a bulging disc above my surgery area, scar tissue, some degeneration in the facet joints next to the plate, now I have arthritis in my shoulder, the constant spasms are straightening out my spine AND they found 3 bulging disc in my lower back and one that is completely torn.

    It is weird I have never heard of baclophen. I am definitely going to inquire about it with my PM doc. what are the side effects?

    Mine was a car accident - on the hwy and a friend was driving. All of a sudden we flew forward and went into a spin at about 70mph. We crossed the fast lane and hit the concrete median head on, bounced off it and then was hit by a tractor trailer and slammed back into the median. All the hits were on my side . Miraculously we weren't killed. Turns out the car that hit us was doing about 110mph and clipped us in the rear passenger side as they were trying to weave thru traffic from the fast lane to the slow lane. It ended up being a hit and run and they never caught them . I cope by using medication and some herbal supplements, I have a home tems unit, I do meditation and pilates/yoga when I can. I used to be super active - white water rafting and bungee jumping, skiing, hiking - you name it. Now I do none of those things and probably never will again. Now I am lucky if I can mop my floor and not end up flat on my back for the next 24 hours. The soma and didaudid do not make me sleepy (and the dilaudid is not a high dose). But the flexeril will knock me out in 10 minutes so I use that at night. Also, I bought a temperpedic bed and that made a HUGE difference. I can finally sleep comfortably since it is like sleeping in a cloud and there is no resistance. My accident was in sept 06 and I have been dealing with it ever since. I am so happy to find this board - I had no idea how many people have the same symptoms as me - I thought I was a rare case but I see how many people have the spasms and it is alarming. I sort of wish I had not opted for surgery but I really had no choice and I was still worse off before surgery than I am now.

    Sorry for the novel and thanks for sharing your story.
    kellie

     
    Old 07-24-2010, 09:19 PM   #6
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Kellie,
    Nice hearing from you. Wow what an accident we were very lucky to make it out of that alive. Then, you find out you have another bulging disc it's the pits. I was told by my surgeon the problem with these fusion surgeries is it puts so much pressure on the discs above and below the site. Never thought there would be any problems after surgery. But degeneration happens as you stated. Did they say anything about the bulging disc if it is pressing on the spinal cord? I guess I'm like you lower back and neck pain. If one doesn't hurt the other does.

    The biggest side effect of baclophen is sleepiness. It takes about 2 weeks for your body to get accustom to the drug. I started baclophen in december for my leg spasms from my myelopathy and it help my shoulder spasms as well.

    Oh I wanted to ask you about your dogs. I have 2 dogs a pompoo named Baby and a yorkiepoo (95%) yorkie named Buster. Buster is my dog Baby is my husbands'. Funny how they take to one person and still love the other. The dogs keep me so much company and gives me a reason to get up in the morning especially when your in so much pain. What breed are your dogs and their names?

    Do you still have pain from that illness you had in your 20's and 30's? It is such a blessing to have doctor's who we can count on. Mine is my GP he has been wonderful to me taking on the added burden of writing all my scripts. The co-pays started becoming to much for me. The pain specialist saw him every month just to get scripts-now if I need an epidural for my lower back I will go then. The epidural is coming up soon. The neurologist told me there is nothing I can do for you. Now I get to go to the GP every 3 months instead of every month. I was getting sick of doctors.

    So wonderful to have this forum. Nice to know we are not alone. Really exciting to travel for a living. Do you like your job? But doesn't sitting in those airplane seats for a long trip kill your back and shoulders?

    Thanks for sharing.

    Kathy

     
    Old 07-26-2010, 06:55 AM   #7
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Kathy,
    Yes, we were very lucky. I am grateful, but it is still hard to live with the results sometimes. I know it could have been worse. My surgeon also told me about degeneration – but I figured I would be pain free for 10 or so years before I would need another surgery or the neck started having problems again. The disc is showing some signs of pressing on the spinal cord but they don’t believe this is the problem. But they also can't tell me definitively what IS the problem. Most of the pain stems from the shoulder and when it really starts spasming it pulls everything in with it and only then do I start to have neck pain. Another weird thing has been happening lately – my neck is ‘popping’. I mentioned this to my doc but she kind of just glossed over it. It doesn’t hurt but it is very odd and the sound makes my skin crawl.

    On the baclophen would you be able to work a full time job? Does it last all day? what are the first 2 weeks like? are you just out of it and sleeping the whole time? I am wondering if I took it before bed if it would keep the spasms at bay thru the daytime. Being sleepy sitting at a desk would be difficult. But I am def going to ask my doc about this.

    Your dogs sound really cute! Pets certainly make quality of life better. My dogs are great! They are what keeps me going. All of my family is on the west coast and when I am feeling bad the dogs are always there to snuggle and make me laugh. I have Cody and Stella. Both are rescues. Stella is 5 and I got her from the SPCA a few months after my accident in '06. I was having trouble getting Cody exercised and I figured I should get another dog for him to play with. Stella is 5 now and she is half Boston terrier and half jack Russell. She was abused and neglected and used as a breeder dog for a bunch of pit bulls. She is just a huge lover/snuggler and also the resident bug killer (and she gets small furry things in the yard too, much to my horror lol). Cody is my baby/best friend. I rescued him from certain death at 7 weeks old when my husband was dying from cancer ten years ago. He has been with me ever since and even moved to eastern europe with me for 2 years. He is half pit bull and half cattle dog. He is a major Frisbee dog and has been a super athlete his whole life – surfing, hiking, white water rafting, etc. I think part of my recent flare up has been due to stress surrounding him. He was diagnosed with cancer at x-mas. Had surgery and was pronounced cured. Then in April he was diagnosed with mast cell cancer (a very nasty strain of it) and he just finished his last round of chemo last week (3 months worth). By all accounts he is in full remission so I just keep praying I will have him around a few more years. The treatment has been very expensive, but he has been thru so much with me and has been there thru the hardest times in my life , so it has been worth every penny. It is going to be a major life event the day I lose him.

    The pain I had when I was younger (from 14-34) was female issues. I saw specialists for 20 years and had many exploratory surgeries. Most docs told my parents when I was young that I was making it up. The pain was so intense I would black out (which I assume is very hard to fake). And the symptoms lasted for weeks out of each month. When I finally decided to have a hysterectomy at 34 the docs found more than 4 conditions and one that had caused my uterus to start eating itself (and I actually had holes in my uterus). You know it is bad when a renowned teaching hospital asks if they can keep your organ for studying lol. Once I had everything removed I have never had any abdominal pain since. I just wish there was a surgery that could produce the same results for my neck!

    Ok, back to work for me – thanks for sharing!
    Kellie

     
    Old 07-27-2010, 10:44 PM   #8
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Kellie,

    Had a day from h... yesterday. I guess it's going to rain soon here in Jersey. The weather report says Thursday we will have thunder storms and rain. My body is a better weather forecaster than the news.

    Do you have arm pain also especially one sided? For me, the upper arm outer portion is my worst area. I have deep aching pain excruciating at times. Everything for me seems to focus on my left side. My doctor tells me I need a whole new wiring system. For me a new body would do.

    I too have the "popping" sound in my neck along with a "creaking" sound it happens for me when I turn my neck. How about you? Then sometimes if I turn my neck to far to the side I end up with a pinched nerve that takes days sometimes to get rid of. How much mobility do you have? I appear like a robot when I move must turn my body to talk to people. Never realized my 'ROBOTIC" look until I saw videos of myself. I know I have a loss of disc height and from the surgery we have some bone fragments floating around from the drilling so maybe it's has something to do with that.

    The baclophen for me is taken 4x's a day. The initial effects keep you very very sleepy for the first 3 days-I don't believe you would be able to work then but everyone reacts differently. After that you must force yourself to stay busy physically and mentally for about 2 weeks and your body adjusts after that period to the drug.

    Those babies of yours sound incredible. I have seen shows that portray dogs surfing with their masters. AMAZING! AWESOME! Cody and Stella sounds so cute. It is so difficult when they become ill they are our babies. Cody sounds like he has been through so much. Is he in any pain? Is he still active? Like you money is no object they are our children and what might help them we must try. My collie Buttons had uterine cancer. She was 14 when she developed the cancer. I was told chemo wouldn't help and when the disease reached her brain I had to put her down. She was the first dog I ever owned and never left my side. My Buttons and my Brownie are buried on my property in the mountains of Pennsylvania where I visit them often- a stone with their name on it marks the spot. Enjoy every minute you have with her now.

    I to agree if you have surgery you should be better not worse. Glad your female situation worked out for you.

    Talk with you later.
    Kathy

     
    Old 08-02-2010, 07:48 AM   #9
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    hi kathy,
    sorry to hear that - i know the feeling. i was invited to a last minute trip to the beach and left wednesday. altho that same day i woke up with a sharp pain in my abdomen. since then it has turned to a dull ache and will change to a a sharp pain depending on my movement. i just talked to my GP and she is sending me for a CT, blood work and xrays. so not sure what it is but i am a little scared it is my ovary (only one left) or my spleen (a fairly large benign cyst was found in it several years ago). or who knows - could be something else completely . this is really not what i need right now.

    most of my pain is on my left side and i do have arm pain - tho not every day. sometimes my pain is down the outside but recently i have had pain on the inside and even feels like it is involving my armput. i think that happens when my upper chest muscles are involved and spasming.

    my neck is weird. all of a sudden it will feel like it is 'stuck'. i have to physically move it to get it to 'unstick' - this is when i get the 'pop'. it is very unsettling - almost like something is popping out of the joint. i actually have pretty good mobility in my neck. i can turn it pretty well and get a good radius but not so much from side to side (ear to shoulder).

    getting used to the baclophen could be tricky. when i am not traveling i am working at a desk all day so it woudl be hard to stay physical and honestly my desk work is pretty boring so i think staying awake may be hard. but if it will stop the spasming i am willing to do anything. this weekend i walked the whole boardwalk in ocean city and by the time i got back to the condo i was in a lot of pain. and i realized i can onkly drive about 3 hours now before the spasms and pain get to be too much. i am only 41 but am starting to feel like a decrepid 90 year old .

    yes, both my dogs are super but cody is my boy - my first dog of my own. we have been thru so much together. i am not a good surfer - he actually did it on his own - just waited for the waves and body surfed in. my friends and family always say they are certain there is a human inside him lol. he has some athritis pain but other than that i think he is pain free (it is so hard to tell since they hide their pain so well). but he is back to being active and playing frisbee and swimming, etc. the treatment for him was expensive but i think it saved his life. if nothing else it gave us more time together than we woudl have had. so i am fine with the cost. i just hope he truly is cancer free.

    hope you were feeling ok over the weekend and were able to enjoy the nice weather.
    cheers
    kellie

     
    Old 08-02-2010, 10:15 PM   #10
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    Chronic Pain


    Hi Kellie,

    So glad to hear from you. Funny almost went to Ocean City this weekend with my girlfriend but I decided against it not wanting my friend to push me in a wheelchair on the boardwalk. Usually just stay home can't walk that far. What a bummer!!

    Make sure though that you move or take a break while traveling in your vehicle to decrease your spasms. I travel for 3 hours to my home in the mts. must stop half way and move around or the spasms get real bad. Can't just sit still especially if you have a desk job. Don't allow yourself to get stiff for any reason it hurts like he!!.

    Can't believe you have another situation to deal with. Why does it seem to be one thing after another? Hope this is something simple and easily rectified.
    Let me know how this situation works out? My heart goes out to you. I'll be praying for you.

    It's been 1 year since I have been out of work and finally allowing myself to go thro the grief phase. Realizing with my disease it's only going to progress to a point of complete debilitation like not even being able to hold things in my hands nor feed myself. The last 6 weeks, this left foot pain, my newest symptom has been truly difficult-pins and needles, stabbing pain, 'frost bitten" feeling, and excruciating pain unlike anything I've ever experienced. Saw my GP and he ordered Cymbalta but had severe side effects. Must try other medications. My husband found some cream that seems to help a little. Myelopathy really isn't pleasant. I too feel like I'm 80 yrs old 600lbs and just completed a marathon when I walk.

    My friend is coming over Wednesday and were going to scrapbook my favorite hobby. Hoping to get back into my hobby to get my mind off of my pain. I remember saying work was interfering with my hobby now not working nor doing my hobby. Must force myself to get up and do something and find some joy in life in spite of my disease. Do you have to force yourself to do things because of the pain? Do you deal with any depression because of your situation?

    I am so glad your Cody isn't in any pain and is active. I'm sure this makes you so happy. My babies are now so use to me being at home when I leave they have separation anxiety-barking, jumping, crying, and unhappy. How attached I have become to them now that I'm with them all the time. They live on my lap or on my side. My terrier is the worst never ever leaving my side. My daughter thinks that's crazy. He listens to no one else but me. Buster is my life I take him almost everywhere I go. They sleep with me too. He loves his toys and chasing the small creatures. We had a red squirrel stuck in a downspout-we didn't know it but Buster kept on barking crazily at the downspout and we finally heard the creature in there. My husband had to dislodge the squirrel and set it free. Poor thing would have died if Buster hadn't alerted us to the situation. He is so cute!

    I guess the neck pain is different for everyone. Does the weather affect yours? You said you have arthritis. The noises in my neck do disturb me and it does cause discomfort for me. Do you use a heating pad? It really helps me.

    Well talk with you later. Let me know what you do with your free time?

    Kathy

     
    Old 08-03-2010, 08:04 AM   #11
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    OC was great. it stormed really hard on thursday but friday was perfect. i def realized my back/neck has deteriorated - i did not take our advice and just pushed thru on the driving to get to my destination and my lower back was really bad by the time i got home. next road trip i will schedule sme rest stops!

    i spent over 7 hours in the ER yesterday for the abdominal pain - turns out it is divericulitis. dang that is painful. now i am on antibiotics and pain meds and shoudl e better pretty soon. just glad it wasn't something more serious. i swear it is always something!

    i am so sorry to hear what you are going through . what exactly is Myelopathy? is it genetic or a side effect of another condition? are there any new treatments or drugs that can help? have you tried any alternative treatments? i am glad there are still hobbies you can do that you enjoy. my list is muc shorter than before but i am lucky that i can still get out and about. i do have to force myself to get out and do things a lot. and a lot of the time i will do activities i know either will or might cause more pain - but i get sick of not being able to do things i enjoy. sometimes i just plan a day of recovery the next day when i know i will be doing something my neck will not like. sometimes its worth it and sometimes not. i am dealing with depression but try to stay positive. i have decided recently i want to move back to CA to be near my family and friends. it is just me here on the east coast and i have realized it makes a huge difference to have that support system and also people that will make me get out do things. so i am in the (slow) process of getting my house ready to seel or rent should i get a job offer in CA.

    i don't know what i would do without my dogs. they are such great companions and keep my spirits up. when i got cody i was able to take him to ork with me - so we were together 24/7. they are used to having me away because of my travel for my job, but they still have someone here staying with them so they don't get anxiety too much - usually at about 13 days is when they start getting a little whiny. i am glad you have your pups - they sounds really cute and sweet. that poor squirrel! glad you could save it. my killer (stella the terrier) has already gotten a squirrel, a bird, numerous mice and almost a cotton tail this year. wild animals that frequent my yard just can't be that bright lol. i always get mad ather when she catches something but i realize it is her nature.

    the weather really has an affect on my pain. my doc has recommended i move somewhere warmer. this winter, with all the snow and cold here just about killed me. the pain was just almost too much even with medication. cold is the worst for me. rain sometimes causes aches but the cold is excruciating. i am planning my work schedule this winter to be away a lot this winter - so far africa and the caribbean so hopefully i can get thru this winter in less pain.

    my free time i spend with the pups a lot, meet with friends to eat out or have drinks, i like hiking when i feel well, and i travel for pleasure when i can. i sued to be really active - riding mororcycles, boating, skiing, skating, camping, rafting etc. i just can't do most of those things anymore because of my neck. i started pilates a couple months ago but then my lower back really started acting up so i had to quit. i am hoping to start again soon once the back settles down. and of course i watch too much TV .

    well i hopeyou have a good time tomorrow with your friend!
    k

     
    Old 08-04-2010, 10:12 PM   #12
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Kellie,

    Had a nice day today playing with my toys. Arts and crafts are great. I am working on my Israel scrapbook. Boy how it brings back such great memories- walking where Jesus walked. Have you ever been there? Feels like your back 1000's of years especially in Jerusalem. Went with my church group and have this GREAT group shot in front of the Temple Mount that I'm scrapping to the page. Wow Africa and the Caribbean that sounds great and great for the neck with the low humidity.

    I agree being around family sure does make a difference. As I was whining to my husband this weekend in my self-pity mode my husband who's such a saint kept telling me your not alone & I'll always take care of you. I was so touched. He spent the weekend rubbing my feet with pain cream. It will be thirty years in November.

    California would be great for you weather and family. Takes a lot of time and work to move hope you'll have plenty of help with the boxes go slow. I to am going to move. I will be moving up to my place in pa. because I now live in a split level with to many steps. My place in pa has only one floor and much smaller. I don't know about you but my concerns are finding new physicians to treat me and going through my history. My myelopathy is not a very common disease.

    Myelopathy means a disease to the spinal cord causing the signals to the nerves to go in a wrong pathway. Hence all the nerve pains, imbalance, shortness of breath(my phrenic nerve), extremity weakness and heaviness, tremors, pseudoangina ending in wheelchair and loss of use of your extremities depending on how fast your disease progresses. The cause is from my neck trauma the loss of disc height and compression placed on the nerves from a long term neck injury. Don't want to scare you but it is a possibility with anyone who has had neck trauma even whiplash. Guess it's just the luck of the draw. I had a mild case before the surgery and after the surgery the disease progressed 200% as per my surgeon after only 3 years out from my surgery. Don't worry doesn't mean everyone.

    Tomorrow will see my 3 grandchildren haven't seen them in a month. Use to take them everywhere, sleepovers, play dates, and babysitting but can't care for them alone and my husband hasn't the patience with 3 little ones ages-2, 7, and 8. A real handful. Driving down to see them is difficult on those pain meds even though they only live 30 minutes away in Philly. I hate driving in Philly to a place with no parking facilities.

    Did they explain your diet for diverticulitis? You need to stay away from seeds like tomatoes, sauces, heavy spices. The ER is such a bummer knowing you are always there for a long time. Glad it wasn't anything more serious for you. Diet really controls this illness. Stay hydrated.

    Boy it sounds like you were quite active during a lot of those daring things I would have loved to try. I miss riding the roller coaster, bumper cars, and other rides at the parks it sounds crazy but I loved to do that. What do you miss most? Didn't you mention bungee jumping?

    Does your neck hurt worst at the end of the day-like your holding up a bowling ball? Sounds corny but true for me. Moving to upstate pa-northeast pa 20 minutes from new york in the deep country-will be difficult for me in 2 ways very hard winters and not close to anything literally. I love country living been my dream to move to the country but I am 20 minutes away from anything. Scranton would be my closest major hospital 45 minutes away. That would be my biggest drawback.

    Well got to go-talk to you soon
    Kathy

     
    Old 08-09-2010, 10:16 AM   #13
    kelliek1010
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Kathy,

    I have had a bad week. This situation with the diverticulitis really got me down. Between the stomach pain and the neck/back pain I am at my wits end. The stomach is finally feeling almost back to normal but the antibiotics are pretty nasty and make my stomach feel like there is a metal cage pressing in on it. Only a few more days though that I have to take them. They did explain diet – no seeds – they did not mention tomatoes but listed all kinds of berries – strawberry, raspberry, etc. I think what did it is my love for sunflower seeds. Another thing I have to give up 

    I used to love doing arts and crafts. Really haven’t been that creative though since my accident. I used to love doing different things to remodel the house and was really crafty before my accident. Now I just don’t seem to get the enjoyment I used to. Israel must have been amazing! I have not been there. I saw a show last night on the ecumenical patriarch in turkey – they traveled to some unbelievable places there that showed Christian paintings in caves that were done BEFORE Christ was born – really amazing. I have added it to the places I must go before I die. I know what you about feelings you are back in time. 2 places have done that for me – the first was the king’s castle in Prague – walking through you could feel the presence of medieval knights riding through the gates and walking around you. the other was the pyramids in Egypt. We actually had the opportunity to climb into the pyramid and into the mummy’s tomb. It was pretty wild – to have walked these tiny tunnels hundreds of yard deep into the pyramid (very claustrophobic!) and end up exactly where they found the pharaoh. I hope someday to get to Israel.

    I can’t wait for the Caribbean! We are also going to go air boating in the everglades and swimming with sting rays in Grand Cayman. My neck still bothers me when I vacation or go somewhere warm but it is much easier to relieve it as I can move around and am not stuck at a desk or lying in bed. I have found hammocks are very comfortable 

    Your husband sounds great! Congratulations on 30 years! I think the lack of family and support has really been the cause of my increasing depression. I really want to move back to CA but the thought of everything involved just overwhelms me. I have pretty much stopped dating since I don’t really have anything left to give to someone else. Right now I am just going to concentrate on getting a job there – the rest I will deal with afterwards. And if I can get a relocation package maybe I can hire some folks to help me out.

    I have thought about the change of doctors as well that would come with a move. But I know there are some great docs in CA so I think I could find someone – and I imagine that my docs here would be able to give some recommendations. The myelopathy sounds horrible. I am so sorry it has led to that. Have you tried any alternative medicine for it? I think I am going to try reiki this week. I guess it can’t hurt. I have tried acupuncture and some other things without much relief but you never know – something may click eventually.

    Hope you had fun with the grandkids! I know what you mean- I can’t deal with traffic anymore. And I hate having to deal with parking. Plus philly is known for having no parking and for towing as well. I can relate to your husband – I am only 41 and I don’t have the patience for little ones – never have really. Probably why I have stuck to pets lol.

    Yes, I was always very active and played 5 sports in HS including competitive skating and skiing. I know that all those sports has also contributed to my back/neck issues. Yes, I did say bungy jumping – one of my favorite things ever. I think my most missed activities are white water rafting, skiing and riding motorcycles.

    My neck is pretty bad by the end of the day as well. Once it starts spasming it feels like I literally can’t hold my head up. Same with my back – feels like the muscles aren’t strong enough to hold me up. It is made worse by the fact that I can’t take any pain medication at work. So when it does start to hurt in the afternoon I have to try to ignore it until I get home, which by that time it is worse – you know the vicious cycle. I am hoping at some point I can begin working mainly from home. We’ll see.

    Well, need to get back to work. Hope you’re feeling alright.
    Cheers
    Kellie

    Last edited by moderator2; 08-09-2010 at 02:33 PM.

     
    Old 08-10-2010, 11:38 PM   #14
    busterbuddy
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    Hi Kellie,

    Sometimes I guess I hit the wrong button and lose all I've written and must start again that just happened to me. Was so sorry to hear you have been so ill with that added issue of abdominal pain not to mention your usual neck problems. The antibiotics drive me nuts with abdominal discomfort just as you. I refuse to take antibiotics unless absolutely necessary like you; who was forced to do so by your illness.

    As a nurse administering antibiotics so frequently I got so use to seeing the side effects on the patients. Especially the elder and its not nice. The physician writes to many scripts for antibiotics and the patients obtains high level of antigens and requires a stronger dose of antibiotics later. I have been blessed without taking any antibiotic for 10 yrs and must be desperate to agree.

    Your trip to Egypt sounds so awesome finding yourself in a tomb with the Pharaohs must have been a day that will go down in infamy. Please tell me that you love photography and have taken awesome photos. I would love to see those of Egypt, Prague, Grand Caymans, Africa, and the Caribbean. Love to look at photos of places I probable will never go to.

    The activities you participate in sounds so exciting and invigorating. Would have loved to been so brave. White water rafting always wanted to do that. Had a trip scheduled once for Arizonan the donkey ride down the canyon and white water rafting never made that trip secondary to problems with my children that year. Really regret missing that trip.

    The way you wrote about your neck by the end of he day and feels like you can't hold it up is how I feel. My husband bought me a rubberized neck collar with a pump similar to the pump you use to inflate a blood pressure cuff - you inflate the collar to hold your neck up when it feels to heavy. He purchased it at CVS. It really helps me at the end of the day or anytime I need it. Felt strange at first but it supports your neck for you when your neck muscles become so tired. You might what to look into that. It really works!

    Just had a really bad scare. While writing in my journal I heard what sounded like someone coming in my front screen door. My dogs went crazy staring at the front door barking and growling. This sound at the front door happened about 3 times and my dogs-Praise God- I feel scared the intruder off. Called 911 had 3 police cars here and searched my property and the neighborhood with flashlights. Then they saw someone down the street and all 3 police cars took off after that person. Also, called my neighbor directly across the street who looks out for me and her and her daughter came over with a baseball bat. My husband works night shift and of course that leaves me alone. He has been doing that for years and I have never been the type of person afraid. But this experience has really shaken me especially being disabled and alone. Do you ever have any issues living alone? My neighborhood is a lovely one the people so friendly and always safe at least I thought so. But crime seems to be everywhere not even the country is free from crime.

    Living with chronic pain as you know is really a challenge. I have been trying so hard to not take my pain medications secondary to severe constipation, just plan loopiness, and trying to rid myself of them or at least lower my dosage but as you know since you can't take them when you work the pain becomes harder to control. It feels like such a dilemma. I would so love to not take pain medicine to know the rest of my life I need them is overwhelming at times. Right now it's very late at night and I haven't taken one all day. I am in such agony with shooting pains, deep aching pains, neck, shoulders, arms, lower back, and feet. Do you go through periods of trying real hard not to take them to see how you will do or if you can get off of them and just deal with the pain with advil or something? I am taking 2 percocet right now and it's raining which makes the pain worse. I get so made at myself for being so stubborn and pig headed sometimes. I want to believe sometimes somehow I'm normal like everyone else. Crazy hah! You want so desperately to be the you you were. The real you. Hard to accept reality even when you live with it every day.

    Well going to bed finally after a scary night. The police promised to keep checking my house and my husband is coming home early. This weekend we will be putting up additional locks and I want to purchase curtains that are not sheer for my front window. My husband told me when I bought them everyone can see in not to buy them. As usual I didn't listen but you live and learn.

    Goodnight
    Kathy

     
    Old 08-16-2010, 10:47 AM   #15
    kelliek1010
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    Re: chronic spasms 3 yrs after ACDF 5/6-6/7

    LOL – I hate it when that happens!

    Omg – the antibiotics were HORRIBLE!!! My stomach felt like it had a cage around it and I had the most horrible taste in my mouth for 10 days. I still have some discomfort so am still eating a pretty bland liquid diet. On the upside I have lost 8 lbs .

    Yes, the pharaoh’s tomb was definitely one for the memory books. And yes, I am not the best photographer but I try to get photos on all my trips. My last trips to Nigeria and Malawi were really whirlwind and I did not get to do any sightseeing, so unfortunately I only have some hotel pics from those countries. But I am supposed to go to Uganda in October and I am trying to squeeze into a tour going to see the gorillas. I will def bring my camera and video camera for that! I

    Sorry you have not been rafting . It is a ton of fun and lots of adrenaline. My father was a white water instructor for many years so I was lucky to be able to do that. I have rafted all kinds of rivers and they are all different. But with my neck I just don’t have the upper body strength I used to - so I still will go but can’t really be counted on as a strong paddler The donkey trip sounds like fun and it is on my list to do if I ever get to the grand canyon. Sorry you missed your trip! I hate it when medial or family issues interfere with plans and fun!

    Hmmm. Where did you get the cuff for your neck? I still have my soft collar which I can wear. Usually if I lay down flat for 10 minutes it helps. Or, sitting up straight with a pillow propped behind my neck. Sometimes even the collar really doesn’t help.

    What happened with the intruder? That was really scary! Good thing you have your dogs! Did they catch the person? I have had my dog Cody since my husband passed and I have been single. I have always felt very safe with him (and now Stella too). But with Cody going thru cancer and getting more deaf and decrepit each day I am feeling a little less safe (as in he may not hear an intruder anymore). But Stella is still alert. I think just having a pit bull is usually good enough to scare anyone off with bad intentions (even if he doesn’t have an aggressive bone in his body). Plus his bark is pretty loud. Luckily I live in a pretty safe neighborhood and my neighbor is also a cop (so that makes me feel safer). But with a scare like that I think I would buy some other kind of protection like maybe a stun gun. And I agree about the curtains. People may think I am a recluse but my curtains are shut as soon as I get home. With open or sheer curtains, esp at night, people can see the whole layout of your house, where you are, what you have, etc. I just don’t need to advertise that I am alone and own flat screen tvs and a laptop, etc.

    I hear what you are saying about the chronic pain. I am lucky in that sometimes I can go for days without needing medication (either have no pain or it is minor enough that I can deal). But then I go thru ‘episodes’ where it gets really bad. I took pain medication today at work because my neck is just spasming really bad and it started out of nowhere. With the recent abdominal issue absence and a facet block and injections this Thursday/Friday, I am at almost zero sick days left. Guess you gotta do what you gotta do. No one can tell when I am on medication (generally) so I am not worried about that. My dilaudid is only 2mg so 1 tablet does not really produce a big change. But needing to take a 2nd will def show a change. I hate the meds but they are the only thing that gets me close to a normal life and able to do and enjoy the things I used to. I am not addicted since I do not need them every day or all the time. But I think if/when it come to that – how can you not be? I guess as they say there is a big diff btwn dependence (which we have) and addiction. I think addiction is when you are taking the meds when you don’t need them – just to achieve the high feeling. I think if you are in pain then you need to take your medication. We just have to realize we are not normal, and barring any major advances in medicine, pain medication is going to be a part of our lives (just like insulin is for a diabetic). I gave up trying to tough it out a long time ago… have you seen that post about people living with chronic pain I copied it and have given it to a couple friends. I think it does a good job os explaining how we feel and what we go thru every day.

    I hope you are feeling better. I am really hoping that THIS TIME, my facet block and botox injections will actually give me some relief (fingers crossed). And, in an effort to migrate to warmer climes I applied for a job in the British Virgin Islands over the weekend. Can’t hurt!

    Take care and hope your week is off to a good start!
    Kellie

    Last edited by moderator2; 08-17-2010 at 03:14 PM.

     
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