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  • Can I get better? A diary of C4-6 problems The early days

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    Old 02-04-2005, 11:26 PM   #1
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    Can I get better? A diary of C4-6 problems The early days

    I am writting this post hoping it helps at least one other person. When I first started suffering I found researching information and hearing other people's stories helped me so much.

    Chapter 1. What's Wrong With Me?

    It was the end of June 2004 and I started having pains in my chest. The pain was centered in the right side and was also squeezing in the center. It started out harmlessly enough, just enough to be irritating. I went to my internist who immediately ordered an EKG, blood panels and proceeded to grill me on what I was feeling. Blood pressure fine, no obvious problems. Good news, those tests came back negative, so more tests were ordered. Meanwhile the pain continued in my upper right side chest. No pneumonia, pleurasy, no problems in the lungs, ultrasound on the gallblader looked good, even a blood test for a pulmonary embolism turned up negative. I was told Go home and REST, take it easy for a few days and see if it clears up, if not come back lets look further.

    Chapter 2. Take Me to the Emergency Room!
    Time passed and I continued to feel the same. It had been three weeks since I first went to the doctor. My husband and I decided to have a nice Saturday evening out, we went to dinner, a movie, and home for a good night's rest. It's 4:00 a.m. and I waken in an excruciating, bone chilling pain. In my shoulder, my chest, my should blade, and down my whole right arm. I can't breath, I start to hyperventilate. I tell my husband we have to go to the emergency room, something is very wrong.

    We get to the emergency room, they see I am in distress. I am immediately ushered to the back where they try to assess what is wrong. I am put in a room and a doctor comes in, talks to me, looks at my chart and decides I am having some type of muscle spasm! A nurse brings in a shot, first a muscle relaxer, no relief. A second shot arrives its demerol, I feel it go in my arm, but the pain continues. Ten minutes later another shot arrives, this time it is a double dose, still no relief. Finally after another ten minutes of me crying and practially climbing on the ceiling, they give me morphiene. I tumble to a light sleep. I awaken in about half and hour and my husband is standing over me telling me we have a script and can go home to wait to see my doctor.

     
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    Old 02-04-2005, 11:43 PM   #2
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    Re: Can I get better? A diary of C4-6 problems Waiting for an answer

    Chapter 3. You need an MRI
    Two days pass, I stay in a stupor. Finally I see my internist. She isn't there, her colleague sees me. What are your symptoms, he asks? I tell him how my chest had been hurting and how things had transpired over the weeks.
    1. Pain in right chest squeezing
    2. Pain in my shoulder blade like a knife is repeatedly and constantly being stabbled in me.
    4. Pain in my entire right arm.
    My armpit hurts
    A severe burning at the top of my forearm, having to ice it constantly
    My wrist is on fire
    Top top of my hand
    Down to my middle finger, where it is numb
    "Hmmm" he says. Sounds like you have "RADICULAR PAIN" He decides he feels I have a pinched nerve in my c-spine. He actually tells me he thinks it is C5. You must have xray and MRI.

    Chapter 4. It's Confirmed
    Condensed version
    Patient has congenitally narrow spine. At the C3-4 level there is moderate posterior disc osteophyte formation, especially in the paracentral region. Superimposted on the narrowed spinal canal results in moderate stenosis.
    At the C4-5 level, there is broad based, posterior disc osteophyte formation, with left neural foraminal stenosis. A moderate central disc bulge is present, with a herniation and fragment. At the C5-6 level there is broad based posterior disc osteophyte formation, resulting in moderate spinal stenosis, with moderate Spondylolisthesis.

    The doctor tells me I must see an ortho or neuro immediately. Phone calls are made and the next day I am seen.

     
    Old 02-04-2005, 11:55 PM   #3
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    Re: Can I get better? A diary of C4-6 problems What are my options?

    Chapter 5. Wait and See

    I see a Ortho Spine Specialist. "Some people get better." You defintely have problems, a conservative approach will be best. If that course fails, you will need surgery. I am given a soft collar to sleep in, I am told to rest, ice, take prescriptions. I am giving Neurontin to take along with the pain meds. I am told to start at 300mg the first two days and then gradually dose upwards to 1800mg per day. The waiting begins.

    Weeks drag by, I keep working, and am miserable. Instead of improvement I actually feel worse, long term pain, takes all your energy. I go through day by day hoping some miracle will happen and I would wake up pain free.

    Chapter 6. Twelve weeks are up
    From the day i went to the emergency room to now, it has been 16 weeks. I go back and am worse not better. The surgeon wants me to do some mild PT as I am losing my strength and in hopes of giving me relief while I make up my mind what to do. "Lets do four weeks"

    The PT isn't quite sure how to help me. Any movement hurts, and I cry through my first couple appointments. We realize PT isn't helping, it is making me worse, I can't get out of bed.

    Back to the surgeon, who decides I need an epidural because I haven't made up my mind to do the surgery. It is now November and off to the center I go to meet with pain specialist to get the epidural. I feel immediately relief, like a bus is taken off my shoulders. It wasn't too uncomfortable proceedure, maybe five minutes of bad, for a week of good. It doesn't last but it helps me break my pain cycle enough to think clearly about the next steps.

     
    Old 02-05-2005, 12:13 AM   #4
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    Re: Can I get better? A diary of C4-6 problems I want surgery

    Chapter 7. I decide

    After months of reading forums and boards, researching and reading. It is late November 2004 , I decide to have the surgery. I go see the surgeon. He tells me I am to have a two level Anterior Cervical Discectomy Fusion with plating and donor bone C4-6. Just an overnight stay, I'll wear a collar for 4-6 weeks probably, and I have a good chance of a great outcome, but he has not any guarantees. I ask many questions that he patiently answers. We talk risks, there are many, I read the RELEASE, it is scary, but he comforts me in that he does these all the time, he is a spine specialist with an excellent reputation. He has good success with his patients, but reminds me he can't guarantee. He tells me it is early in my problem, that he finds when a patient acts early the nerve damage is less and has a higher change of recovering well. I tell him, I can't imagine how anyone would wait longer than six months to get relief. He tells me some people wait years or never.

    1. Why donor bone? His results are very similar his patients get better faster without the second surgical site. He gives me a slight percentage difference because I never smoked and was relatively healthy. The plating and collar (Miami -J 24-7 except when showering) will greatly improve my fusion. DO WHAT THEY TELL ME TO, be a good patient.
    2. What can I do after? I am told the plate will be very securely holding things together. My best outcome will be from No lifting, no strenuous activity, bending, careful with the head, no turning etc. Lots of rest. Gradual walking.
    3, What about work? Probably not for about 6 weeks. No driving. He doesn't like the idea of me spending hours on the computer. (Later I found I didn't really have the energy to do much computer anyway for a few weeks)
    4. What about a scar? It will be on your left side, front of neck, only a couple inches. We will hide it in a neck line. You won't notice it much after a year.
    5. there are many other questions and answers. I am told after the surgery, his Nurse Practitioner is available any time to talk to.

    We set the date, December 29th.

     
    Old 02-05-2005, 12:41 AM   #5
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    Re: Can I get better? A diary of C4-6 problems The early days

    Chapter 8. I feel different!

    It is Decembe 29th, I wake up in the recovery room, I am grogy and the nurse is saying something to me. I try to grab the tubes from my nose and they tell me I am ok and everything is fine. I am wheeled to my room and I see my husband in the hall, he has a big smile on his face. I feel relief, I must not be paralyzed!

    The nurse is constantly working with me, checking me and asking about my pain. I tell her I feel around 5, she tells me that's good. I say yes, knowing that I walked around at about a 7-8 level for months.

    I get cocky, I am doped up from the anethesia and the anethesiologist had told me he would provide me extra pain support in the surgery because I had taken so much pain med prior. I am curious how things feel, I refuse offers of the morhpene. BIG MISTAKE. Gradually I am settled in and it is evening, I send my weary husband home and hope to drift off for the night. Not to be, I should have taken the pain med, the surgery meds are now worn off, and the percosette I did take isn't enough to calm my pain. I increase to an 9. However, my my arm feels good! I spend a miserable night trying to catch up to the pain, I don't sleep a wink, the hospital is a noisy place. The ice chips are good and sooth my throat which is sore. I can speak fine. My neck hurts like heck. I didn't expect it to hurt so bad, but why shouldn't it from the drilling and such! It is a different pain than the nerve pain, I'll get through it.

    The surgeon comes in the morning, he says I did fine. I am able to get out of bed with no help, and am adjusting to my collar. He asks if I am ready to go home, I tell him I think I will be fine. Later that day, 24 hours from surgery I leave for home on my journey to my old life!

    Chapter 9. Weeks Pass

    Week One: I spend most of my days and nights in the recliner, sipping drinks, eating light soft foods, and sleeping. I have trouble swallowing my pills, they feel like they are stuck. Every bite of food takes a swallow of liquid, I have to work hard to push it down. I switch to popsicles and such. I can't really sit upright without pain, so I take advantage of the recliner. I don't need as near as much pain meds after the surgery as before. I am on 0 Neurontin.
    Week Two: I begin to improve, moving around more, I venture out with a friend for a one hour lunch up the street. It takes most of my energy to get dressed, my husband helps dry my hair. She brings me back home and I spend the next day resting. I want so much to be well. I am down to 4 percosettes a day, with an extra set of tylenol interspersed. Way better than the 8-10 percs a day plus ibuprofen round the clock and 2400mg of neurontin I was on prior to surgery. I spend the rest of the week gradually moving around the house more, I walk to the mailbox each day. I miss the bed, the recliner is getting old. Swallowing is improving, now only some foods get stuck, I keep liquids handy when I eat. The pills still go down hard.
    Week Three: I am feeling better every day, I walk around the block. I am down to o percosette, just two vicadin a day with extra tylenols. I start working a couple hours a day from home. I go to the grocery store with my husband. I can almost do my hair by myself, I like to wash it every day it is shoulder length. I keep increasing my sitting up. I am up to three hours at a time upright with no pain or fatique. We went to walk the mall. I made it inside and we have to leave, I am too tired and my neck hurts. My arm feels great!
    Week Four: I hit a couple days of depression. I have overdone. I slow down and give my body a chance to bounce back. I am down to random pain pills, not a regular dosing schedule. A day here and there I skip the vicadin and only use Tylenol. I feel confident the bones are healing! I am building my energy store, feeling better, no naping, I didn't know I had been so sick. Now that I am getting better I see how horrible the past 6 months had been. I must have been on autopilot.

     
    Old 02-05-2005, 12:52 AM   #6
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    Re: Can I get better? A diary of C4-6 problems My Follow Up was today

    Chapter 10. Almost Well!

    It is February 4, I have my follow up today. I slept in the bed for the first time last night, I stayed there all night. It has been 5 weeks and 2 days since my surgery. They take an xray. They show me what the plate looks like, it is bigger than I expected, about the length of my index finger, it has six screws. It will stay there forever, unless something happens.

    I am healing well, the bones are beginning their fusion. I am told I can wean off my Miami J collar! Go Slowly over the next two weeks , I don't have to sleep in it! I can drive when I feel comfortable. Wear the collar in the car for a little longer, loosen it so I can turn when driving. Wear it while I am up moving around until I wean off, take it off when sitting around. DON"T DRIVE IF I CANT TURN they say! We talk about how I feel. I am almost off the pain meds completely, they are happy. My arm pain is negligible, it flares up a bit when I overuse, (like tonight on the computer). But it is not excruciating pain, it is mild and goes away with a little break. I am told I need more rest, the nerves need time to heal. I ask about work, should I go back? I am told wait and go slow, maybe next week a couple hours a day, then following week part time, week after that decide how you feel. Your nerves were torn up, they need rest to heal. I am told don't set youself back by overdoing. Work up gradually, you waited this long a couple more weeks won't hurt, it will only help you permanently.

    I begin to cry as I describe how I already feel better even though I am not quite ready to hit it hard. I am emotional, the surgery looks like it will give me my old life back, the one where I was active and happy and pain free!

    GOOD LUCK TO YOU

     
    Old 02-05-2005, 05:40 AM   #7
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    Re: Can I get better? A diary of C4-6 problems The early days

    Great Stuff! Congratulations and I hope you continue to improve.

    Dont get too dissapointed if you have a bad day here and there. I know my body tells me when I am overdoing it, I just have to listen.

    Enjoy your new life !

     
    Old 02-10-2005, 06:01 PM   #8
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    Re: Can I get better? A diary of C4-6 problems The early days

    CONGRATULATIONS!

    Hope you continue to recover and get your life back! Thanks for sharing your story and please continue to post and let us know how you are doing.

     
    Old 02-12-2005, 09:56 AM   #9
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    Re: Can I get better? 6 weeks post op

    It has been six weeks post op and I started sleeping without the collar, I did that for two nights and by the third day I was starting to hurt in my neck, shoulder and arm. No weird sleeping positions, propped up with all my pillows. Dr. also told me I could take it off while sititing around the house. I did that here and there also. As excited as I was to not wear it, I found that I don't think I am ready to not wear the collar. So I put the miami J back on, and sometimes I alternate with the soft collar. I can feel the nerves are irritated but they don't hurt like before.

    I am not taking much of any pain meds, including tylenol of any kind during the week, I think that has something to do with it also. I had increased my walking trying to build energy to go back to work.

    I am going to try to go back to office two days this week and see how it goes. I am so ready I am not sure what to expect of my body and if it is repaired enough to keep up with the grind. I won't know until I try!

    Take care,

     
    Old 02-20-2005, 07:54 PM   #10
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    Re: Post C4-6 ACDF week 7

    Week 7
    I went back to work 2 1/2 days in the office, and the other days from home. All together almost 35 hours of work for the week. I felt really good at he beginning of the week, but by end of week I was exhausted and hurting. I took a down day Friday and am better by Sunday.

    I needed to push myself over the hump because I felt I was stuck for the past two weeks, so I stepped up my walking and really started making myself not wear the miami j. Today was first day I kept it off most of day. I have some discomfort in my arm, some in my neck in the bone, I am sure it is healing though because I can lay in positions I couldn't before. No pain meds still, just tylenol. I even slept on my side. Trying to get used to the idea that it may take a while to feel really great. I rode in the car without the collar, and today I drove to the grocery store, first time driving all by myself since surgery. I am stil happy every day that I did the surgery.

     
    Old 02-27-2005, 10:00 AM   #11
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    Re: Can I get better? A diary of C4-6 problems The early days

    Week 8

    I am driving myself to work and other places, I have pretty good mobility in my neck. I feel a little naked (nervous) without the collar in the car.

    I find I still needed the collar the more I am active. Toward the end of the week I have gotten it pretty much off. Only wearing it one or two hours a day now.

    My neck hurts in the bone, but not horrible. My neck never hurt prior, it was always my arm/chest, I am waiting for it to go away. My middle finger is still numb at the top, maybe this will be permanent. My arm nerves get irritated from use, but it is not painful like before, rest helps. My energy level is improving, I still get really tired and beat up after busy days. Overall I can see I am doing so much more than three weeks ago, and feel more normal.

     
    Old 08-13-2005, 03:06 PM   #12
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    Re: Can I get better? A diary of C4-6 problems The early days

    Aznativ,

    I just read your diary...I guess I am a voyeur. Thanks, it is very helpful. I hope I have the strength you had throughout the process. As you have read in my other thread posts, I am scheduled for surgery on Aug 24. I am a "simple" operation, in that I am having ACDF on C5-6, donor bone, with hardware. I do have a bone spur to be removed as well, but dr seems unconcerned. You have given me hope.

    Frank

    Last edited by frank0678; 08-13-2005 at 03:10 PM.

     
    Old 08-14-2005, 08:06 PM   #13
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    Re: To Frank0678 from my Can I get better? A diary of C4-6 problems The early days

    Frank, it was the best thing I did for myself. I am now 8 months out from my surgery. I have been getting better every month, I am great now. I flew about 12 weeks after my 2 level. My advice is wear your collar if you have one. if you don't have one -- at take off and touch down just put your hands up and support your head/neck. If you get only one level I think it will be easy recovery. My doctor was conservative on 2 levels, more restrictive. Fusing is harder with multiple levels. I was so sick it took a while to come back after the surgery, but I would do it again in a heartbeat. Good luck

     
    Old 08-16-2005, 01:39 AM   #14
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    Re: Can I get better? A diary of C4-6 problems The early days

    Hello everyone - reading your diary has been great for me, I had a 2 level ACDF done on July 9th here in London, my neurosurgeon used artificial discs ( PCM ). I am going back today for post op- x-rays and to see him. I pretty much feel the way that you did. I had levels C5/6 C6/7 done. I still feel quite TIGHT around the scar and swallowing still seems a problem sometimes, or my throat feels dry. I wonder if it could just be that I feel anxious that makes the sensation worse, but sometimes even when not eating, just swallowing, it feels as if there is something in there. Did you feel the same. My left side was the problem, and I still have nervy twinges down the left arm, so am going to stop typing now. Any info anyone can give will help. I too have my recliner, and dont know what I would have don without it, although I am getting a bit sick of looking at it now !!. Best wishes to evryone. Mary.

     
    Old 08-16-2005, 09:18 PM   #15
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    Re: Response to Mary T. Can I get better? A diary of C4-6 problems The early days

    Hi Mary, glad to hear you are progressing. The swalllowing continues to improve over time, I was told it was from internal swelling. The nerve tinges and residual stuff eventually disappeared for me for the most part. Your nerves get pretty torn up prior to surgery, hopefully in your case they will heal also. Do talk to your doctor about your symptoms, I bet they tell you that you are right on track. Good luck , keep everyone posted. The support network is great for all of us.

     
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