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Frustrated

Had ACDF C6-C7 surgery in May of last year due to a severe herniated disc that caused me to start losing function in both arms and affected my legs. Cervical myelopathy, muscle weakness, and lots of other things were caused by the bad disc. The fusion is healing well, but still having neck discomfort daily. In November and December of 2017 I was going to physical therapy to try to get more strength and movement in my right arm. Physical therapist said something is definitely wrong in there. It was recommended that I contact and see the neurosurgeon who did my surgery. I saw him and had an MRI and x-rays done. The results he gave me was a new disc herniation at C5-C6, but not bad enough for surgery. He said I really do not want another surgery so soon unless it is absolutely needed. According to the radiologists report my MRI done back at the end of April of 2017 there was a slight herniation to C5-C6, but was told the neurosurgeon reads things different than the radiologists. At this time (January 2018) I had no more appointments with PT. Just recently had an appointment with my regular doctor and asked if she could print out my results from my MRI and x-rays from December. I wanted them for my files. She did that for me. According to the letters and reports from the radiologists who did the MRI and X-rays C5-C6 has a right central protrusion with mild neural foraminal narrowing on the right similar in size and appearance from previous exam in April 2017 with mild degenerative disc disease, slight grade 1 retrolisthesis, with joint space loss and osteophytes. C7-T1 has a small central disc protrusion similar to previous exam in April 2017. So even though the radiologists reports say nothing new, it is all new to me as I was never told by the neurosurgeon that these other discs had issues. He didn't see anything back in April that was cause for any concern with these discs and was focused on the severe herniation. I understand that. I'm just getting really frustrated with everything. After 9 months post surgery I still have muscle weakness and discomfort in my right side. I don't have full range of motion in my right shoulder and upper arm and also my right hip and thigh muscles get irritated. I can't do any heavy lifting, any repetitive motions for long, sit (on harder surfaces) or stand for long periods of time, ride in a vehicle for very long, walk up stairs normally, takes longer to do any day to day tasks, takes longer to do household chores, drive, basically most anything without discomfort. I've told my doctors and physical therapist all of this. The neurosurgeon said because of how bad things were before surgery and the damage that was done to my spinal cord and nerves that I may only see a 70% improvement. I've come to terms with that and know that is all I will see. I was scheduled for a cortisone injection in January, but cancelled it. Didn't want it to just mask the discomfort and do something to screw my neck up any worse. I was the one to suggest to the neurosurgeon about the injection in the first place after we talked a little bit about it. My regular doctor seems to think I could go back to work if I have the injection, but it isn't going to fix the muscle weakness and range of motion issues. I was told by many people to try for disability and I'm working on it. Was denied, but have appealed it. I would rather be able to work than have to be on disability, but my body has made a different decision. Sorry this is so long I just need to get things out and figured some of you on here would understand more since you have went through similar situations. It is nice to hear from others with similar issues. People I talk to just don't understand and some think I'm faking everything. I have made other posts that have more info of what I've been through. I know there are no professionals on here. I've read many posts and articles on here. I've done a lot of research on everything going on with my neck. Trying to stay strong with all this, but it is starting to get more frustrating as another month passes by.

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1

Comments

  • nutcase007nnutcase007 United StatesPosts: 672

    @slh76 - I share your frustration with my own case.  After I had my second ACDF in March of 2014, my neurosurgeon told me to expect it to take 18 to 24 months for me to recover from my myelopathy at C3/C4.  My neurosurgeon told me after surgery that he had never seen such a   bruised spinal cord that was not severed in his career. Unfortunately, I didn't experience significant recovery and I had my third ACDF this past January.  I'm now fused from C2 to C7.  My current recovery is very slow and painful (if any). 

    I am on disability, but would rather be working like your self.  Each of our cases is unique.  My only advise is to understand as much as possible of your case and own your decisions of the treatment(s), which sounds like you have done. 

    Both of our cases are difficult.  I understand too well the faking statement.  Yes, it is frustrating!  Please feel free to private message me if you want.



  • @nutcase007 From what I was told from my neurosurgeon my myelopathy may never completely go away. I had it throughout my whole body. I still feel it mostly just in my upper body. I'm getting used to it so it doesn't bother me as much unless it comes on strong. I still have discomfort in between my shoulder blades doing most anything. That is what triggers the myelopathy to come on stronger at times. I was told by my neurosurgeon early on that only time will tell if the damage to my spinal cord and nerves will be permanent or not. When I saw him in January he said it is probably as good as it is going to get. I was at a very high risk of paralysis with over 50% central compression on my spinal cord. Very frustrating when you can't do things like you used to do. The first few months after my surgery I felt like things were getting better. At my 12 week follow up I was released from all restrictions and told to do things as I felt comfortable. Like my neurosurgeon said your brain will say keep going, but listen to your body and stop. I was doing all my normal things, but had to take multiple breaks. I have to take multiple breaks no matter what I'm doing. I've tried shoveling snow this winter, but can't do much at all and the little bit I've done took me 3-4 times longer to do. Around 5 months after surgery I noticed more discomfort from doing things so I made myself slow down and rest. Thought maybe I was over doing it and needed to rest more. I was not getting any  improvement. Went to physical therapy and the physical therapist would barely touch me to massage my neck and shoulders and it hurt. She said I'm very tender and sensitive. Trying to hold off as long as I can for the next surgery. My husband has been a great support through all this and understands why I can't work. He helps me as much as he can. With only one income it is getting harder each month, but we are somehow making it through. 

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  • nutcase007nnutcase007 United StatesPosts: 672

    @slh76 - Wow, I'm trying to figure out if it has been coincidence or if there is a pattern of your symptoms and my symptoms.  I had good recovery for five months after my second ACDF at C3/C4 in March, 2014 and like you was released from all restrictions.  After the five months, I had ongoing decline until I had my third ADCF this January at C4/C5.  I blamed my decline on undiagnosed "structural issues" which it ended up being the cause.  I had excessive horizontal movement of my facets at C4/C5 which triggered all kinds of crazy osteophyte growth and eventually collapsed the C4/C5 disc.  It was only with the disc collapse that I passed protocol for surgery.  My neurosurgeon said that when he opened my C4/C5 area for the hardware implant, what once was the disc was "mush".  My recovery, if any, is now very slow and painful.  My neurosurgeon is blaming the pain on myofascial pain since I no longer have any movement in my mid-cervical area.  I'm now fused from C2 to C7.

      

  • @nutcase007 From reading many other posts, others started physical therapy a few weeks to a couple months after surgery. My neurosurgeon never recommended physical therapy. Wondering if that would have helped before I was released from all restrictions especially since I had so much muscle weakness and muscle related issues from everything. Before I was finally diagnosed with the severe C6-C7 herniation I almost lost full control of my arms especially my right arm. I started having issues walking. Only reason I had physical therapy in November and December was my regular doctor set it up after I contacted her. I asked the neurosurgeon at my appointment in January if I should continue physical therapy and it came across to me like he didn't think it was going to help, but said to continue the exercises I was already doing. I try to do what I can. Wish I could do more than I do. 

  • nutcase007nnutcase007 United StatesPosts: 672

    @slh76 - I went back and checked my records when I had my physical therapy after my second ACDF in March, 2014.  The physical therapy was ordered by the neurosurgeon two months after surgery.  On this surgery, I had a carbon fiber implant with plating.  Over the next six weeks, I had 11 PT sessions.  I cancelled the PT, because it was doing more damage than good.

    Question - Did you ever have neck trauma?  If you did, how many years ago.  I had severe whiplash that I lived with and only had minor issues and then at 19 years post trauma, the pain got intense and now 21 years later and three ADCF surgeries, I've been disabled for three years.   

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  • @nutcase007 The only neck trauma I can think of is when I rolled my car in 2007. I didn't have any neck pain from that though. Of course my whole body hurt from that, but my lower back and legs hurt the most. I asked my neurosurgeon if it was possible if I could have had a herniated disc since then and he said yes. I started working at a hotel as a housekeeper in 2015 which was a lot more physical work than I had since that accident. I never felt anything in my neck till I got a really bad cough in March of 2017. I think a mix between the job and cough brought on the symptoms. The neurosurgeon said it was the cough that caused it.

    As I mentioned before I'm trying for disability. I was denied, but have appealed. I mentioned this to my regular doctor and she straight out said I won't get it. She said because there are other options besides surgery to help such as injections and physical therapy that it won't be approved. Yet she didn't recommend me going back to physical therapy when I asked her about it. I understand injections can help with the pain, but they aren't going to help with the muscle weakness and repair the herniated discs. I know it is hard to get disability and it doesn't help when I'm only 42. Would much rather be working than going through all this. 

    Just don't know what to do?


  • nutcase007nnutcase007 United StatesPosts: 672

    @slh76 - Most PCP/regular doctors do not really know much about spine issues.  Thankfully, my PCP admitted that and turned me over to the neurosurgeon who struggled for years until he came up with a diagnosis (my neurosurgeon specializes in complex spine issues). 

    If you can find a way to pay for it, I highly recommend you "play the games" of injections and physical therapy, but have it directed by a spine specialist.  Us with spine issues that are not diagnosed with "conventional diagnostics" are treated like fakers until we exhaust all the non-surgical options.  I don't know if it is protocol or what is for all the delays.  If we don't keep bugging a spine specialist, nothing gets done. 

    From my experience, most neurosurgeons and orthopedic spine specialists blow off the concept that a car accident can develop spine issues years later, especially if aggravated by something little like a cough or a physically demanding job.  I had severe whiplash in 1978, so severe when I was found my medical personnel at the scene of the accident, they thought I was dead.  It took 19 years until I started having nasty spine pain and another 10 years after that until I had my first ACDF (torn disc)  .  It took another seven years with very nasty pain and at times having "quadriplegic periods of time" (30 to 60 minutes) until I was diagnosed by my current neurosurgeon.  He found a ripped facet joint and performed my second ACDF.  Five months later, I was back with more severe spine pain and I was left to deteriorate for another 40 months until I was diagnosed with "gross cervical instability".  The some neurosurgeon claimed that he could not get my case to pass protocol for surgery until my disc collapsed and then I had my third ADCF.  During those 40 months, I had ten second opinions, where the doctor doing the tenth second opinion, identified the problem.      

  • @nutcase007 My regular doctor has talked with my neurosurgeon and the physical therapist I was working with. They all work together. I trust my neurosurgeon as he is the head neurosurgeon and has been doing this for almost 20 years. He has listened to me through everything and answered all the questions I've asked. The doctors know I'm not faking things it is family, friends, and others that do. I could have injections and physical therapy as much as my insurance would approve, but they only pay so much. I asked my neurosurgeon the last time I saw him if I should keep going to physical therapy and he said to just do the exercises I've already been given. My physical therapist was the one who recommended I see my neurosurgeon again, because she was running out of ideas to help me. They can all only do so much if your body isn't responding to some of the treatments. My neurosurgeon told me to call him right away if I start having any of the symptoms I had last time or any other changes. He is not opposed to doing another surgery he just doesn't recommend it at this time.  He didn't say to have injections he just said it was an option that could or couldn't work. I feel like I've lucked out with my doctors after reading many posts by others having to see so many doctors before getting any help at all. 

  • First, when u get an mri, tell the tech you want a disc of your images, and the day after your X-ray, mri, the report is ready...get a copy for your files.

    Always get a second opinion in a different field- if you went to a neuro go to a spine specialist for your 2nd or vica  versa. I’m not a fan of neuros. Anyway, your neuro, spine specialist could move cross country (like what mine did) and why you need to keep your own records. 

    3 neck fused,bars,DDD thruout
  • nutcase007nnutcase007 United StatesPosts: 672

    @3fusecervical - Totally agree with you about getting CD copies of diagnostics like MRIs, bone scans, myelograms, x-rays, CT scans since they have been digitized.  I've used mine for multiple second opinions.

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