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Post-ACDF Concerns

Deb_701DDeb_701 Posts: 7
edited 06/11/2012 - 9:02 AM in Neck Pain: Cervical
I am five days post-op from ACDF at C5-6. I'm not sure if C6-7 was also done, as I cannot recall the doctor telling me if it was and it was questionable prior to surgery. My pre-surgery symptoms were pain in my L shoulder blade, pain down my L arm, and numbness in my middle and index fingers and thumb on the L hand.

Post-operatively, I have pain at times in my L shoulder blade and down my L arm but I have persistent pain in my L forearm and persistent numbness in the same fingers and thumb, worse in the index finger. In reading various posts, I am thinking that maybe this will improve. ???

Even more concerning, however, is I now have severe weakness on my R side, worse than the L, and I had NO problems on my R side before the surgery. My neurosurgeon tested my motor strength three days before my surgery, and I had weakness on the L but normal strength on the R. Now the grip strength on the R is so weak that I can barely hold a toothbrush. Typing is very difficult. I normally type very fast, but now I type like a beginner. Writing is even more difficult, especially since I am right-handed.

Just wondering if anyone has experienced similar problems post-operatively, particularly with weakness on the side that was normal prior to surgery. My doctor's office has called to check on me and I have told them my symptoms and that I am using a 3-lb. weight and squeeze ball to try to increase my strength, and they offer no explanation and just say to keep doing the exercises I am doing.

I am very worried and very discouraged. :(


  • I had an ACDF on C5/6 as well (March 2009). When I woke up from surgery I had no more numbness or pain in my right arm, which is the only arm I had issues with.

    You are just beginning the healing process being just five days post-op, but I do see your concern. I have heard multiple others say that it took time for there pain/numbness to get better. I don't know that I have heard of having pain/numbness in the opposite extremity, not to say it doesn't happen by any means. You have been cut open, parts removed, things are very irritated right now and need to time to calm down. I would make an appt to see the surgeon if you are still that worried. We can offer our experiences, but what we say is only that, personal experiences, and not the professional opinion of a doctor/surgeon. It is better to be safe and call until you feel comfortable. You may want to check out the "Back and Neck surgery" section of this forum. There are lots of posts in that section that have either already had surgery or will be having surgery soon.

    If you are worried or something doesn't seem right, call until they answer your questions. It is your body and you know if something isn't right.

    Take care and post your concerns any time.
  • Thank you for your input. My post-op appt. is scheduled for June 14. Hopefully things will be better by then. I will check out the forum you suggested. I guess I am really interested in seeing if anyone had severe numbness on the side post-surgery that was asymptomatic prior to surgery.
  • This forum, its more like a family. Everyone is so understanding and sympathetic. There is tons of info on SH. If you need anything or have questions, please don't hesitate to ask.

  • Deb, I had 3 Level ACDF on C4-C7 4/16 and before surgery my chief complaint was pain shooting down my right arm and numbness in my fingers as well as severe weakness in my right arm. When I woke up from surgery my right arm pain and finger numbness was gone but I had a host of pains I never had before.Pain in both shoulders and neck, my weakness in my right arm was still there and I am still working on that. You need to remember they opened you up and messed with all your nerves and took a piece of your neck out. You are very early in your recovery you need to be patient with your self. Ask questions until you get a response from the DRs, unfortunately we need to be our own advocates with these doctors, it seems they do the surgery and that is it.We are left with all sorts of issues and do not understand. Just remember to let your body heal. I still have pain that was not there before the surgery and I am nearly 6 weeks out. My doc just says the body takes time to recover from the trauma of surgery and it will get better. I asked him straight out is it unrealistic to expect to be pain free at some point and he said no but do not expect it for several months.So I will keep you in my thoughts and hope your arm gets better. Kim
    Kimberly Martin
  • Thanks, Kim. I am now 10 days post-op. My pain and numbness on the L side continue but I have noticed some improvement. I continue to have weakness on the R but there has been some improvement with that as well, as I continue to do exercises to strengthen my motor and grip strength. Some days are better than others. The fact that there is some improvement on both sides gives me hope. My post-op appt. is on June 14. I am hopeful I will be improved enough by then to return to work, as sitting at home is driving me crazy, but there will need to be significant improvement from where I am today. I don't have to lift anything at work but I do have to sit at a computer and type all day, using one screen to review medicals and one screen to type summaries. Today I type better than I did five days ago but it is still difficult and painful and slow, and I can only tolerate it for a very short while.

    I wish you the very best with your recovery! :)
  • Hi, I've just joined and this is my first post..I had my second follow up appt with my surgeon after a ACDF C6/7. 3 months later I have pain, extreme and tingling numbness down both sides, especially on little and ring finger. He says all looks good on X-ray but sent me for another CT scan today and ordered a nerve pain study in a month. I am concerned and have read enough forums to understand there are normally another level affected and a second ACDF is required sometime later. Is this the case? Also I have noticed twitches in various muscles, pecs, biceps and fingers cramp often? Any help here??? It seems normal but after 3 months an no end in sight is it time for a second MRI or even a second opinion????
  • Deb, I had 3 Levels done and I also sit behind a desk on a computer, My doc said 4-6 weeks recovery to go back to work and that was not the case, I am due back at work June 18 and am confident with that date. Which would be over 8 weeks. Just do not be too hard on yourself if you are not ready..being on a computer is tough on the neck and may cause stiffness. There was no way I could do my job at 4 weeks but I had 3 levels done. Just be patient with yourself and let your body tell you what it is ready for. Jason you should single out your post to get alot of responces but it is not common to need another level done, right after each other. My doctor told me the chances of another disc going out in the next 5-7yrs is 20% that is not high at all. You need to remember alot of the posts are sometimes worse case scenario's.So it is based on your diagnosis and the condition of your spine. It is not hopeless and I have had great success with my surgery. If your body is telling you there is something wrong get to the bottom of it and talk to the DRs and we will be here for support. Best to the both of you- keep us posted on your recovery. Kim
    Kimberly Martin
  • I'm not sure anyone will ever read this but I thought I would post an update as to what happened after my first ACDF at C5-C6. My pre-surgery symptoms did not improve. My doctor's office kept giving me more steroids and said it would get better. It only got worse. When I went to my 4-week follow-up, the doctor immediately set me up for a CT myelogram the following morning, which showed a rupture at C6-C7. I was in surgery the next day or so for an ACDF at C6-C7. The doctor apologized, saying he was sorry he missed it. I should have known then to run, run, run, but, instead, I tried to rationalize the situation, thinking maybe it was a blessing and that maybe something might have gone wrong had he done both levels the first time and that God was protecting me. I am a Christian, and I was impressed with his friendly personality and bedside manner, and the fact that he said "God bless you" at the end of every visit and gave me a hug and a kiss on the cheek. The nurses at the hospital also told me that he prayed in the OR before each surgery. Gee, was I fooled. After the second surgery, my L arm pain improved but I continued to have the symptoms in my L thumb and L index and middle fingers. I still have those symptoms to this day, almost three years later, so obviously the mistake he made resulted in permanent nerve damage. I also did not regain full strength in my R arm, although it was much improved and adequately functional. Still, he offered no explanation for the severe R arm weakness following surgery.

    In February 2013 I developed severe neck and R arm pain and, unfortunately, returned to the same neurosurgeon. He recommended PT, but I asked for an MRI instead, knowing that my symptoms were consistent with my past ruptured disks. I was right. The MRI showed a very large rupture at C4-C5. He was not as quick in scheduling surgery, making me wait for several days. A couple of days prior to surgery, I began experiencing weakness in my R arm but I was still able to function, including driving, self-care, and typing at work. I told him about the weakness prior to surgery. On exam, he tested my strength. I could raise my arm but had difficulty maintaining my R arm strength when he applied pressure to my arm. He proceeded with surgery and when I woke up, I was PARALYZED in my R arm. I freaked out and went into a major panic attack, so the doctor prescribed a heavy dose of Ativan and they knocked me out. I stayed heavily sedated for my entire hospital stay and cannot even remember dressing and going home. It's funny that my hospital records show that he prescribed the Ativan for "insomnia," which is ludicrous, given that I was just coming out of anesthesia. I then had to ask to be referred for PT and for a repeat MRI and for an EMG. It's funny that he sent me to a neurologist across the street from his office, and it was the poorest EMG I had ever had and I was told it was radiculopathy. I researched and found a specialist for neuromuscular disorders and asked him to refer me there, and at my first visit the doctor did an EMG which showed no activity in my deltoid muscle and decreased activity in my bicep muscle, all related to an axillary nerve injury sustained during surgery.

    After I realized that the neurosurgeon's negligence caused this injury resulting in R arm paralysis, I looked into his background and found several paid claims with the Board of Medicine, as well as numerous lawsuits against him, past and present, for malpractice, with a couple of them resulting in death, one of which happened close to the same time I had my surgery. I was SICK when I saw this. Never before had I not researched a doctor before engaging their services, but everything happened so fast initially and he came recommended by my PCP's office. I trusted their recommendation and was fooled by his bedside manner. STUPID ME.

    I did a lot of research about nerve transfer surgery, knowing that it might be an option if I did not improve, so I could at least hopefully regain some functioning in my arm. I asked him about it, and he said that these were not really done and not to believe what I read on the Internet. He did offer to give me whatever pain meds I needed at any time ... "whatever you want, you just let me know. " Needless to say, I severed my relationship with him, albeit two surgeries too late.

    I found a surgeon out of my area who did in fact perform nerve transfer surgeries with another neurosurgeon and had my neuromuscular specialist refer me. I met with him and he flat out told me it was obvious that my doctor "bagged" my nerve during surgery. He was ready to proceed with setting the surgery up, but I had to return to work before my short-term disability ended and then go 45 days with no treatment in order to keep my job. He said I should be safe to wait that time period but no more if I had any chance of the surgery being successful. I returned to work and stopped PT but continued to exercise at home. By the time the 45 days passed, I began to have some improvement in my R arm, with an EMG now showing some, although very little, activity in my deltoid muscle. He then referred me to the neurosurgeon in his office who performed the nerve transfer surgeries with him so that he could handle the follow-up for my neck since I was no longer seeing anyone for that after severing the relationship with my neurosurgeon.

    I continued to have neck pain, in addition to shoulder and arm pain, and the new neurosurgeon sent me for a CT myelogram which showed continued nerve compression at C5-6, and he proceeded with a cervical laminectomy in June 2014. The surgery went well, and although I continued to have the symptoms in my L thumb and L index and middle fingers which he said may or may not improve given the length of time the nerve had been compressed, my neck pain and ROM were much improved and I felt better than I had since before my first surgery in 2012, although I continued to have R arm weakness and significant R arm fatigue with activity, related to the prior nerve injury.

    I continued to do fairly well until approximately December 2014, and I began having neck and increased R arm and shoulder pain. It became so severe that I had to go out on medical leave again in January. I have had more MRIs and another cervical CT myelogram, and have had several steroid injections in the neck, R shoulder, and R bicep tendon, with no real benefit. I have also had more PT and additional dry needling for painful trigger points which continue to develop due to muscle damage related to the prior nerve injury. Tests show four collapsed vertebrae in my cervical spine, as well as bone spurs and severe stenosis, a tear in my rotator cuff, and bicep tendinopathy, as well as some other abnormal findings. My neurosurgeon advises that I will need a four-level corpectomy with a cage anteriorly and then rods posteriorly, but I need to take care of my shoulder and bicep problem first. I see the shoulder specialist next week. I am told I will continue to have muscular problems resulting in pain regardless due to the continued degeneration but that an implanted stimulator may be a possibility if I am allowed to have that after having the corpectomy. I have been told that I will continue to require pain management and periodic treatment with PT and dry needling for the rest of my life.

    So this has been my journey, better described as my nightmare which I suppose will never end. I am so tired of the pain and limitations. It is wearing me down. I am just so thankful I now have some excellent doctors and therapists, and I did want to mention that I have thoroughly investigated the background of all of my doctors and found no issues, thank goodness! They are all very experienced, with nothing but outstanding reviews.

    My advice to anyone with neck problems is to be proactive in your care and do your homework so hopefully you can avoid an experience such as mine.

    Sorry this is so lengthy but I felt that my story needed to be told. I would greatly appreciate any prayers regarding my current situation ... medically and financially. I fear that my career is now over so that is a huge financial burden. I am facing bankruptcy, and my future looks bleak. I am trying to stay strong emotionally, but I have my moments. I am blessed to have a supportive and caring husband for which I am very grateful. I would really appreciate prayers related to my future corpectomy. I am scared to death about that surgery. I know there are significant risks, and some of them terrify me. I forgot to mention that one of my verterbral arteries is totally occluded ... another injury courtesy of my prior neurosurgeon. With a corpectomy, there is the risk of injuring a vertebral artery which could result in a stroke. You only have two, but since one of mine is already damaged resulting in total occlusion, I have been told that should the other one be damaged, I would definitely have a stroke and very likely not survive. I just have to place it all in God's hands.

    God bless each and every person in this forum who is recovering from or facing surgery. I hope each and every one has a better outcome than me. I know my situation could be far worse, so I am truly thankful for where I am today. All we can do is have faith and hope and take one day at a time. God bless, and thank you for reading my story and for any prayers.
  • ReadyforchangeRReadyforchange Posts: 90
    edited 04/26/2015 - 5:22 PM
    I recommend a lawsuit. Most lawyers take money if and when your case is won. The man needs to be done. May God grant you a new good surgeon, pain management and a finacial miracle.
  • I wish I could have sued him, but I could not afford to pay thousands and thousands of dollars just for attorneys to review my case, with no guarantee they would take it, and then pay even more for a medical expert to review my records thereafter. My new neurosurgeon is excellent, although the trip to his office is an hour and a half one way. It is well worth the travel though to know I am in good hands. My pain management physician is also good, although finding pain relief is challenging with my existing problems. I do pray for a financial miracle since my financial future looks bleak, but if I can achieve a better quality of life than what I have now after the corpectomy and what the shoulder surgeon decides to do, then losing my home and going bankrupt doesn't seem so important. Thank God my husband is supportive and understanding. Thank you for your well wishes. I needed some encouragement today. God bless.
  • Oh my I am so sorry to hear your story :( Your first doctor should be banned from ever seeing another patient after what happened to you..I have no magic solutions or words but will keep you in my thoughts and prayers..It is so difficult to face each day with pain but we all must continue forward in the best way possible..I too suffer from chronic pain and had a 2 level ACDF 5-7 in 2009. I am in pain 24/7 on my left side only and only with the taking of pain meds am I able to work full time. Good luck and take care. Amy
  • Hi Deb, I can't believe what you have gone thru. Please keep us posted and stay positive.
    I wish there was more I could do or say to help but my thoughts are with you xx
    Kirsti x
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