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3 weeks post ACDF - shoulder pain, tingling hands, can't sleep on my back

dehoyos13ddehoyos13 Posts: 290
edited 06/11/2012 - 8:39 AM in Neck Pain: Cervical
Hi everyone. I was diagnosed with these herniated disks in 2006. After trying conservative treatment and therapy, the pain in my neck, muscle spasms and tingling in my left arm/hand become unmanageable. I'm 3 weeks post-op from ACDF c3-4,c5-6. My surgery was about 5 hours long. My surgeon said that I has a lot of bleeding during the procedure. At this point, I'm still needing the prescribed Vicoden at least twice a day with Tylenol in the middle of the day.

Since the surgery I've had my right arm (previously no symptoms). Also, depending on the position I sleep in, my hands are tingling. I cannot sleep on my back, partly because of the tingling, partly because of pressure in my throat. I've begun a walking regimen but when I get home, my throat feels as if there's a golf ball stuck in there.

Food tastes bland... I don't know anyone who's had this procedure and the internet doesn't really provide much info beyond this website.

Can anyone shed some light or share their experience? I'm so ready to be well, I'm following my dr's orders. I'll have my first xray on Dec. 16th.

Thanks, I appreciate it.
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Comments

  • Everything you are going through I also experienced after my ACDF. I had tingling in my right hand I had never had. Things do get better. I will probably always have numbness in my left arm because of permanent nerve damage. It takes time and some symptoms may never go away although the surgery did relieve a lot of my pain. Remember each person is different although some symptoms are the same, we heal at different speeds. Good luck and feel better.
  • After my two-level acdf, I had right shoulder and arm pain for 3 weeks. I had no right side issues pre-surgery so I was fairly concerned.

    Spoke to my Dr. who said to give it some time. It slowly went away and now ten weeks post-op all right side pain issues have gone away.

  • Yes, I have this. My hands are numb and tingly. Sometimes they are a bit better but now that I'm feeling better and doing more I have burning pain between my shoulder blades. I'm almost 4 weeks post c3/4 acdf. Currently fused from c3-c6. Never had the tingling before surgery so I too am hoping it will go away. I was told the same thing by my doc, just wait and see. VERY frustrating!
  • I'm only 17 days post-op from a multiple ACDF C 4-6 and experiencing ruthless burning and stabbing pain throughout my shoulders and pain in back and sides of my neck. I also have numbness all around the incision site where I have no feeling sensation at all. It concerns me and I talked to my surgeons nurse and she said the feeling should return in a couple of days, but it's still the same. I had left arm and hand pain b4 surgery and it has all gone away but the neck and shoulder pain has increased and is more widespread now than before the surgery and very painful and annoying.

    I was told I may have permanent nerve damage that's responsible for this continued intense pain that may never go away. If it doesn't get better by 2 month period, than it is an inclination that it's permanent for me.

    I wasn't able to lay down to sleep either, felt like I couldn't breath from the golf ball in the throat feeling too, but only for the first 5 days, but now I'm back in my bed laying down o.k. except for the stiffness I get in the a.m.
    I still feel the pressure in my throat and occassionally I choke on my meds and some types of foods. They say it can take up to 8 weeks for your throat and swallowing issues to go away.

    As someone else replied, we're all different in the healing process and it takes time to heal, if at all, but it's too early for us to tell at this point.

    Hope this helps you. To my surprise, there are so many people who have had this procedure done and the majority of us are still having issues that the surgery was supposed to "fix". As you research, you will find alot of people who have had failed surgeries with their cervical and lumbar spine.

    Just try to stay positive and hope for the best even with the statistics you have been given. I hope you get relief soon. I need some too!
  • Thanks for the posts. After 2 nights of sleeping well, I had another miserable night. I slept about 2.5 hours and then was wide awake and hurting. While I'm glad that the majority of my presurgery symptoms are gone, these recovery symptoms are no joke! I'm going crazy being at home so much. I was in the car last week as my husband drove and cried all the way home. I live in NYC and our bumpy streets were havoc on my neck.

    So I read that no sleeping is common. I used Tylenol PM for those good 2 nights, but last night it didn't work at all. While my doctor is world-renown and his staff is friendly enough, getting to his PA is nearly impossible! I don't know what I can and cannot do other than what I've read here. I can't drive yet...sitting for more than 30 or 40 minutes means pain for a good couple of hours. I'm glad for this forum...its gives me hope that this will get better. Thank you!!!!
  • Hi dehoyos, welcome to Spine-Health. It sounds like you need a lot of info so I'm glad you found us. The forum members are very knowledgeable, friendly and supportive. This site also has a ton of info outside of the forums.

    I just want to remind you that you're still very early in your recovery. Three weeks is really a very short amount of time after such a major surgery. I had a 3-level and I can tell you that the recovery process is commonly very slow and, unfortunately, can be very boring, as well. Because you can't bend, lift or twist (aka BLT), you can't use the recovery period as a chance to get caught up on housework or anything else. This is a good time to get caught up on movies, books and games.

    Do you have a recliner? I found that sitting in the recliner in the reclined position to be a very comfortable way to sit. I also slept in my recliner for the first two weeks or so.

    You didn't mention if you're wearing a brace..are you? If so, is it a hard or soft collar?

    Cath
  • Cath, no. The doctor didn't give me a neck brace. It was never even mentioned. I wondered about it but I didn't ask either, which is silly. I know that a patient is supposed to ask questions. And while my surgeon is world renown, he isn't very forthcoming with information. I wasn't given any post op instructions other than no housework, no bending forward, no leaning.

    I called the office today after having such a bad night. His PA wrote out a script for Valium to help with muscle spasms and my lack of sleep. Does anyone know how well this works. Valium....sounds serious. I have learned through this recovery that I am not as patient as I thought I was. I'm trusting that when all is said and done, I'll be fabulous. But in the interim....I'll take it day by day. some days are better than others. I just wish I had a list of things I can and cannot do.

    YD
  • Really, a list of things not to do is pretty simple. You shouldn't lift over 5 pounds, you should bend over very much, and you really shouldn't move your head too much. You shouldn't do laundry, rake the yard, shovel the sidewalks, etc. etc. etc. This is major surgery and you have the added complication that it's your spine. If you're anything like me, you'll be aware of your neck every day and with everything you do for quite a while. I still am and I'm over a year post-op.

    I don't understand doctors who do surgery on your cervical spine and don't have you wear a brace and/or give you instructions on what you can and can't do post-op. It's common sense that you shouldn't jerk your head to one side or another when something startles you - but it's easy to do without a brace. You shouldn't use your chin to chest to hold a hanger while you put slacks on them either, but it's easy to forget that (can't tell you how many time it took before I remembered I can't).

    Oh, sorry for my rant there. Anyway, DY, please just use common sense when you do anything at this time in your recovery. You have a long way to go before you're going to feel fabulous again, so take care of yourself and take it easy.

    Cath

    PS - feel free to PM me if you have questions or want to vent. I understand how difficult and ACDF and recovery can be.
  • The problems with your throat are "known complications" from this type of surgery. Luckily, I didn't experience such things but it took me a long time to recover from surgery. If you had a lot of blood loss, you'll probably be very fatigued for a while and should try and get a lot of rest.

    I have spinal stenosis and had severe problems prior to my neck surgery (fusion of C4-C5-C6), with multi-level nerve compression, many large bone spurs, and severe spinal cord compression. I came close to paralysis, due to the compression. After the surgery, I had much less of my "usual" pain but many new and weird sensations (pains), perhaps from nerves "waking up" after long-term compression.

    Prior to the surgery, much of my pain was in my shoulders and arms. After the surgery, the pain was mainly in my neck and back of my head. I wore a neck brace for several weeks -- can't believe you don't have one -- and also required very strong pain meds (Percocet plus Soma) for the first two months. Without these drugs, I would not have been able to sleep at all. I required lower strength prescription pain meds for another 3 or 4 months, and two rounds of physical therapy. I was also given two rounds of steroids shortly after my surgery.

    I could not lift more than 5 pounds for several weeks after surgery -- not only did the doctor tell me this, but I simply couldn't do it.

    I'm about 3 years post-op, and it took me a full 15 to 18 months to regain strength in my arms, and also to regain hand dexterity that had been lost prior to my surgery. I still have some weakness and other problems.

    Most people probably don't have the severe problems I had prior to surgery, so other people probably recover from their surgeries faster than I did. Even so, you should expect a 3 to 6 month period before you can resume truly "normal" activities. Returning to work (if you work) probably depends on the type of job you do.

    My spinal stenosis isn't limited to my neck. In March of this year, I had another surgery to fuse my lumbar spine at L3-L4-L5. I discovered that recovering from neck surgery is much, much easier than recovering from back surgery. No matter what problems you're still having, it probably doesn't compare to the after-effects of lumbar fusion surgery.
  • Cath...I don't know how to send PMs. I'm new to this forum but I'm so glad for your responses. The hard part about all of this is that since I don't have any written guidelines I have to kinda hit and miss whether something is ok or not. Yesterday for instance, I sat for probably 4 hours (changed positions a few times). OH MY WORD!!!!! I was in so much pain last night that even 2 Vicoden only took the edge off. I almost went to the ER but thankfully, I finally fell asleep around 3am. Had to get up at 7am so needless to say I'm tired.

    Rockfish...thanks for sharing your experience and boy and I sorry to hear about your lumbar surgery. I cannot imagine anything worse than this. I think a lot of doctors don't give neck braces because of the plates they put in...supposedly the brace is for support but I would have appreciated a literal reminder of what I can not do....not the painful reminder however. And while I'm so glad that my doctor is good and what he does, I'm disappointed that his office is not as easily accessible as it should be. He's great, his surgical coordinator...not so much. But I finally got her yesterday and she left me an rx for Valium. So hopefully I'll sleep tonight.

    I didn't know it would be this hard to recovery. Most websites that I researched for this procedure gave the impression that it wasn't so hard. It took weeks before I found this forum. I wish I had found it before the surgery. I would still have done the procedure after 3 years of serious pain but at least I would have been better prepared.

    I'm glad now though that I've found it. It helps to know that there are others out there who have been here and understand the frustration, pain and boredom.
  • Hi Everyone,
    So like all of you I am scheduled to have the cervical surgery next month in California. I had no idea that I needed the surgery or that anything was wrong with my neck until after diving into a pool on vacation I had the shock sensation in my right arm. I thought that I had pulled a muscle from not stretching enough but it did not go away and the Dr. was suspicious and so an MRI was ordered. The images came back showing some impingement on the cord and I was referred to a NS up in the NW for a consultation.
    I have researched and interviewed 4 surgeons thus far and think I am having ACDF, but understand that I am not getting plates but replacement disks like an ACR? I went to UCLA, Cedars-Sinai, Swedish Hospital in Seattle and an independent spine health surgeon who has written many books on back pain for consultations. I have no real symptoms that are bad, I have some numbness in my right thumb pad and index finger pad, a little weakness-heaviness in my upper right arm, and at the end of the day after sitting at my computer (I work in technology) the sides of my neck ache a little. What perplexes me is that none of these symptoms are constant, they seem to have their own schedule and nothing I do makes them worse or better. The symptoms will appear for periods of minutes or hours and then go away completely. Three of the surgeons have recommended that I have the surgery and that it will prevent any real nerve damage from happening, I was told by one surgeon that I may have some damage at c5 anyhow. I am looking for advice from the folks that contribute to this board; I have a major job and really can’t afford to be away from work longer than 3 weeks. Am I going to be sorry that I had the surgery? I see a lot of negative posts on here of exasperated pain and symptoms after surgery, is this going to be my case as well? One thing that I don’t see posted here is how much better someone felt after the surgery and how easy it was for them to get back to normal life. What is the success rate for this surgery? Am I going to have worse symptoms, paralysis and loss of my voice and not be able to resume my work responsibilities? So as you can imagine I am pretty scared right now, I have small kids and a family dependant on my income and ability to work, etc. Looking for some insight as to what to expect from all of you good folks, Thanks in advance!
  • dehoyos13 said:
    Hi everyone. I was diagnosed with these herniated disks in 2006. After trying conservative treatment and therapy, the pain in my neck, muscle spasms and tingling in my left arm/hand become unmanageable. I'm 3 weeks post-op from ACDF c3-4,c5-6. My surgery was about 5 hours long. My surgeon said that I has a lot of bleeding during the procedure. At this point, I'm still needing the prescribed Vicoden at least twice a day with Tylenol in the middle of the day.

    Since the surgery I've had my right arm (previously no symptoms). Also, depending on the position I sleep in, my hands are tingling. I cannot sleep on my back, partly because of the tingling, partly because of pressure in my throat. I've begun a walking regimen but when I get home, my throat feels as if there's a golf ball stuck in there.

    Food tastes bland... I don't know anyone who's had this procedure and the internet doesn't really provide much info beyond this website.

    Can anyone shed some light or share their experience? I'm so ready to be well, I'm following my dr's orders. I'll have my first xray on Dec. 16th.

    Thanks, I appreciate it.
    We've started a Dec. surgery thread on the surgery board. Even though you're 3 weeks out, you are more that welcome. I'm sure others will jump in who had had this happen, and at the very least you'll get some post surgical support.

    Hang in there, and I'm sorry you're having problems.
  • Although I asked a million questions to my surgeon (who is also world renown), I got very few answers that could help me during post op. My issues started about 18 months ago when I woke up with what I thought was a stiff neck, after trying everything out there, from laser acupuncture to PT to very expensive massages, botox injections and cervical epidurals I opted to do the surgery when I started loosing strength in my hands.

    I had a 2 level ADCF with instrumentation and donor bone. I woke up from the surgery in a Miami J hard collar and in extreme pain . Since all of this began I have been unable to lay flat on my back so I was desperately asking the nurses to raise the bed. Once they did the pain eased up a bit. The surgeon came by when I was agonizing and told me that I should not be in any kind of pain as this was a pain free surgery. He made me feel horrible, it was upsetting to hear someone say that when I was in horrible pain. I was in the hospital for 55 hours and all of that time I was in extreme pain. Twice the surgeon came to see me and told me that I was making it up and to be positive. I wish there was some sort of machine to detect pain so that I don;t get labeled as a looney. I told him that if I was not supposed to feel any pain then he must have done something wrong. Also, why the hell did I wake up hooked up to a morphine drip. The nurse later told me that he was just being sarcastic. I was very annoyed. I too experienced difficulty swallowing and did not eat solids for the first week and a half. I am not eating normal food but still feel discomfort. I developed bronchitis a couple of days after being home.

    The first couple of nights home were horrible, I finally decided to rent a recliner and I have been sleeping on it since. I have not had many good nights but I am more comfortable there than on my bed. I am wearing the hard collar for a total of 8 weeks and I am not allowed to drive during that time.

    Before surgery I was experiencing a lot of neck, shoulder, shoulder blade, arms and hands pain. With loss of strength on left side. My right side feels better but I feel like my left shoulder and arm and my neck hurt more than prior to the surgery. I am in a lot of pain, I was first prescribed percocet, then vicoding and now neurontin and flexeril, as nurse feel it is more nerve pain. But nothing seems to work. I am super bummed as I was hoping to be one of those that wake up and never have to take a pill again.

    I am very scared that I am going to have to live the rest of my life in pain, If I walk or sit up for too long without some support to my head, I pay for it with more pain. I feel like I am becoming depressed from all of this as I don't know what else to do. I just want to feel better and be back to normal self.

    Dehoyos, I totally can sympathize with you. And pray that our current situation gets better and that it is just too soon to tell!
  • First let me say welcome to all of you that are new to spine-health. I do want to caution you all on one thing. I have been around her for a few years and seen many successful surgeries. Those members have long left the boards and returned to normal busy lives. But I can remember that when they first arrived here following surgery they felt as many of you do. While many don't understand but spine surgery is major surgery and it will take your body sometime to heal. It is true that everyone heals at a different rate as well but also keep in mind that this surgery is performed for many different reasons. So someone else may heal faster as the degree of problems may not have been as severe. Try to measure your success in weeks not day to day. The most important thing i can stress is walk and when you think you have walked enough walk some more. You will help your core body strength to build back up. I only tell you all these things as someone who has been through cervical surgery multiple times both anterior and posterior, and looking at more surgery in the future. I am as well a multi-level. If you suspect your pain is abnormal or to high don't be afraid to call your surgeons or if you feel something that you don't feel is quit right.

    But welcome to all of you posting here for the first time and If i can be of any assistance don't hesitate to pm me. Just keep the faith that it will get better in time.
  • Piolin...I'm sorry you're in so much pain. I so completely understand. On top of the pain is the frustration about how long this is taking. I get it...I really do.

    Tamtam...thanks for your post. I have days where there is so much hope that its improving. Walking is super painful for me. I'll walk around my house (which is gettin boring) and I'll walk to the nearby river. Its about 15-20 minutes. I rest when I get there and head back. By the time I get home, I'm drained. If I sit too long, the pain gets bad again. For the last 2 days I've had to go back to taking the Vicoden every 6 hours to stay ahead of the pain. I'm not sure if I'm doing the right thing but I know that I have to stop hurting. The doctor gave me valium which I've taken twice. The fist night it didn't work. Last night was better but that's because I'd taken Vicoden all day but didn't allow myself to fall asleep during the day at all.

    the pain now is a bit different. There is still a burning sensation in my upper arms, shouder area. But there is now also a constant, achy pain at my c-spine. I still can't sleep on my back. It feels as if my necks going to break. I know this surgery was worth it. It is just hard to process the recovery time. Today I feel down but I believe its the Valium because I haven't felt like this before. does the pain really get worse before it gets better? And is it normal for the pain to change like this? I don't see my surgeon again until the 16th and that will be my first xrays as well.

    Thanks for the posting, folks.
  • Hi Beary -

    Not sure if you're still checking in on this site or not, but would love to connect with you. I'm scheduled for a two-level ACDF here in LA, and my symptoms, thus far, are manageable. This would simply be a preventative procedure.

    Did you follow through with your surgery? Who did you use?

    Thanks,

    Amy
    37-yrs-old
    C 6/7, 5/6 herniated discs
  • Not sure how everyone is doing that is on this thread. I totally agree with everyone that I was not prepared for the pain and problems with recovery. I was in the hospital for 5 1/2 days due to pain and swelling. Hod problems swallowing for a very long time. Only recently within the last week do I feel I can eat most foods. I still do not bother with a sandwich, or a bagel. Bread products seems to still get stuck or just slow to go down. I am surprised how many people were not even given a soft collar. I would have been lost without mine. I would suggest getting one from the surgical supply store. It gives the much needed support and takes the pressure off. I still wear mine when I sleep. When I try to sleep without it, I wake up in pain. Why bother? The type of pain is probably different for everyone. I know that I do get the burning sensation across my shoulders and in my shoulder blades. I also get stiffness and a achy feeling on the side of my neck and at the base of my skull going down my spine to where the C6-7 is. I slept in the recliner for at least 8 weeks, although I tried sleeping in my bed with the pillows propped up. I got more sleep in the recliner. There are days that I still need to take a flexeril or a hydrocodone. Early on it was important to stay on top of the meds. Hope everyone on this thread is doing well. Love to hear personal stories.

    ================================================
    12/9/2010 ACDF C5-6 C6-7
    DDD, severe arthritis
    4 hours with a bone stimulator per day
    no bone growth yet
    PT starts Monday had eval (painful)
    Went to work as a teacher 2/14/2010
  • I started this thread 3 weeks out of surgery. I am now at almost 16 months. It took me months to recover. I am a childcare provider and it was almost 4 months before I was back at it. I didn't have PT directly after surgery. My surgeon suggested it a few months back but the evaluation revealed that there were still some problems. Doc sent me for a CT myelogram that showed no new problems but the 2nd level of fusion had not closed completely. This was the source of my problem He said that single level fusions heal quickly but multiple levels take much more time.

    It didn't help that I was in a car accident and had whiplash in January. The pain is much more intense now but there are better days.

    I've noticed that the pain level for me changes with the weather as well as with sleep position. Today being a double-whammy! Must have slept wrong AND its raining. haha! I'm not complaining though...this is all soooooooooooooooooo much better than before surgery, when I was in pain management for shots every 2 weeks.

    I hope things continue to improve for you!!!! Do you love spine-health as much as I do? I've met some amazing people in the last 16 months! Take care!!!!!

    Yvonne
  • alepatmataalepatmat Posts: 12
    edited 06/20/2015 - 6:12 AM
    Hello all, I am at 2.5 weeks post op after surgery for levels C4-C7. I am only on 1,000 ml of Extra Strength Tylenol a day right now. Over all the pain isin't bad, sometimes I will have episodes of pins and needles, burning sensations in my hands and arms. I have read that this is a sign of healing. I was reminded by a friend of mine who is a retired nurse, that this was major surgery and it does take time to heal. I am learning through experiences, that when I start getting a headache and feeling fatigued if I give into it and rest I feel better later. I had to have this surgery due to congenital issues. I was born three months premature so my spinal canal is much smaller than most. The wonderful surgeon let me know afterwards that he kept having to remind himself that my spine was an adult one. He thought he was working on a child! :)
    During the first visit, I was told that unless I did this surgery I would eventually become a paraplegic so I am very grateful to be walking around the block even if it's difficult at times.
    Does anyone know when it is safe to sleep flat again? I do have the followup appointment next week but just thought I would see if you have any info. Thank you for your posts they are extremely helpful and it is nice to rub shoulders with others who are struggling through as well!
    Laura
    Laura
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