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had ACDF 4/16/10 and pain is back in full force..why did I bother?

dolphinloveddolphinlove Posts: 21
edited 06/11/2012 - 8:44 AM in Back Surgery and Neck Surgery
Hi. I started a new thread as I was hoping to reach people who have had my surgery but are at least 6months-1 yr or more post op. Questions, worries, concerns...

I've been wondering over the last few days (things have been beyond bad on the pain scale) if having this surgery was even worth it. I've started PT and he overworked it on Friday as my NS now says I have a "frozen shoulder" which I don't even know what that means. And he acted shocked which killed me since I felt like screaming...."hello?? that's where the pain all started and I've been unable to use the damn arm for the last 8 months WTF" But alas, I refrained.

I've been planning our first ever family vaca to disney. I'm the only one who's been before (not for a million yrs though lol) and my kids can't wait to go. Originally was doing Oct of this yr but have now decided to push it back to May 2011. But btwn this pain and things I've read about others and their recoveries.....I'm wondering if a bit over a yr past surgery will even be long enough now. I mean, I want to ride rides and roller coasters and have a freaking blast with my family and my kids. We deserve it esp after these past 9 months and etc.

Any opinions on this.....should I plan it for even later, which I really don't want to do......I just don't know. I feel like I'm in a lifeless hell. I couldn't wait to get this surgery approved (workers comp) and yet here I am back where I started. I am a stressed out mess...I'm upset and crying and beyond words pissed off....I just can't take it anymore. I really can't. I want my life back. I can't live for the rest of my life this way. I CAN'T.

Pls, ideas, opinions, anything......thanks for listening. I so need a hug and can't even do that.

Tara in CT


  • Howdy Tara,

    Sorry to hear all this is happening. My first fusion was a 100% in my mind (see sig), and it almost got to where I almost forgot I had surgery or a bad neck! I then had the level below it go just past a year, and another fusion. I was good for the first 7 weeks or so, but since then I am losing more and more of my right arm, pain is back. I was diagnosed with 'severe chronic peripheral Neuropathy', but the cause is unknown at this time? I think it is from my neck as the pain does go all the way up to it! I will be seeing a Neurologist shortly that specializes in Neuropathy, so hopefully some answers!

    Are you able to get with another Neurologist to get to the bottom of this? The pain, loss of use etc. of an extremity is hard enough, the NOT knowing is the worst of it! *HUGZ* As for your vacation in 2011, unless something really weird is going on, you should be able to go on it - can't guarantee the rides though! (G) Please keep us posted. Support *HUGZ* your way!!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Yes i have had multiple surgeries as well. I also ended with a frozen shoulder following one of the surgeries. Now here is the kicker I always like you had the pain there. So when I didn't feel one of the surgeries was a success we finally looked harder at my shoulder. Long and short the pains are similar and can get confusing as the nerves run together. Once we relieved the frozen shoulder which really had a tear in the rotator cuff and the depcompression part of it, I could finally see the difference in the nerve pain and the shoulder pain. So i went like you the round about way. Have you had a emg study before or after this surgery? I am not sure how you originally got injured but for me it made lots of sense was a MVA while working. So the seatbelt did part of that and then of course neck injury itself. Try not to get to down. I would think you are good to go with the disney trip. It is not uncommon for one injury to be relieved and the other surface. Your nerves are still pissed off a bit and i am sure therapy maybe adding to it. Be sure you let the therapist know. Google frozen shoulder it basically goes through three stages sometimes they need to put you under to move it. Have you had a MRI of the shoulder? Keep us updated on what you do. If I can be of any help don't hesitate to pm me.
  • SpineAZSpineAZ WiscPosts: 1,084
    The hope would be that with an ACDF you'd be feeling much better by 6 months post op. I didn't have any physical therapy after so I may have spared myself some of that pain. The frozen shoulder needs some work though, it's possible the nerve pain and nerve impingement made you use the arm less and now that shoulder has to go back to normal range of motion

    If you plan your trip be sure to buy trip insurance. I thought I'd be able to travel from Phoenix to Minneapolis at 8 weeks post ACDF and I could not. I was barely out of the brace and had managed to sit and rest too much so I was very deconditioned. Luckily I had bought trip insurance.

    After my ACDF when I had some of the nerve pain symptoms return my doctor sent me for one more ESI to get the nerve that seemed to be irritated and it worked. The theory was that the nerves had been really bothered by the surgery and needed some help calming down.

    And I hate to say it, but I would never let myself get back on a roller coaster again. It's just not worth it after having gone through surgery. I have done some calm water slides where I could see the landing and see it wasn't too crazy, but that's about all I'll every do again (and I'm 43). To me it's just not worth it unless it's a relatively calm ride.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • Hang in there! You have gotten some really great advice and direction! I don't have much to offer other than support and encouragement!

    Plan your trip and look forward to it! You may have to modify it but we all do that based on the needs of our family members. Maybe plan a day at the water/beach park after a day of walking...

    Spring Break was 2 1/2 - 3 weeks after my 360 fusion which was complicated by pneumonia, pluracey, and 3 blood transfusions!

    It may have been a bit crazy, but we loaded me into the car, reclined the seat, surrounded me with pillows, blankets and away to the beach we went.

    We borrowed the hotel wheelcahir to transport me so I didn't have to walk through the resort property.

    I hung out in the hotel room with room service and movies while the rest did activities. It was a bit sad, but atleast I was there and not at home!

    The hotel was happy to let us borrow the wheelchair as long as we needed!

    5 years ago the night before our flight to Ca to disney, we found out my husband needed a C5-6 fusion. He said to our surgeon (who we know very well by now) "Either you tell my daughter that she is not having breakfast with Cinderella or we'll do this next week when I get back!"

    We went to disney, he was very careful and his surgery was a success!

    Go for it! Set your goals! Wishing you the best!
  • A perfect example of why not all people should go to physical therapy. It could lead up to frozen shoulder syndrome, etc. I am approaching my 13th mo of it - the final "thawing" stage three! It is sooooooo painful.
    Takes 11-35 mos to heal.
    I am so sorry.
    >:D< BIG HUG
  • thanx everyone....it's nice to have one place where I can be free to really say how things are and that there are people out there who actually understand.

    Few questions...

    SpineAZ...what is an ESI? Haven't heard of it before. And TamTam...oh where do I start~EMG study...I'm not sure what that is....is it where the put electrodes on your muscles and zap them to see their reactions or whatever?? I've had that done many, many years ago WAY before what I've been going thru now was even dust in the wind!

    Here's the thing, I am (was??) a photographer for lifetouch..taking HS kids pics. I was moving some of my equipment around in my car one day when I felt pain in my arm (this is Sept 2009). Thinking I might have just pulled a muscle or something I really didn't think much of it. Kept working and within the 2 wks that followed it kept getting worse to the point where I could not lift or do what I needed to do to set up and break down my equipment. Went to dr (ortho) and he put me out of work, did xrays and sent me to PT. At first PT worked and I felt better. Even went back to work a few weeks or something later on light duty. But couldn't even do that without pain returning (and mind you, light duty consists of handing a person a small card). So, back out of work and back to PT. Had MRI's done of shoulder...they said it was fine. Had MRI of neck where they found the alleged problem...I'll post the MRI result another time when I get my copy out. So, doing PT all this time.....going back to ortho...back and forth FOR MONTHS. Despite the fact that after a few months I told everyone it wasn't helping and I had no use of my left arm and it was awful. The PT guy knew it..I told the ortho and due to crappy workers comp they sent me to some moron for a second opinion. He was an ass plain and simple. Can't even get into that part of it. Short story...he said I would never need surgery just more therapy. Of course by this time (JAN 2010) I had also seen my NS by way of my ortho. Naturally WC went with their moron and I was screwed. PT resumed and I ended up canceling for a week since I couldn't even be touched that's how bad the pain was. WC sent me to another opinion. And another waste of my time. The finally approve some stupid shot in my neck which not only hurt alot but then caused pain to move to the entire back of my neck and all across the top of both shoulders. And that pain has STILL not gone away. Shot did nothing but make pain worse. Then they finally approved surgery. This was at 7 months dealing with this painful hell. Then when it was scheduled I had to wait another month so this is 8 months now. I'm currently in 9 months total, after having a surgery that I fought for since JAN OF THIS YR and for what? To still be in pain?

    Also..during the pt time after the MRI's they thought I might have a torn rotator cuff but apparently MRI ruled it out (??) Since having the surgery, and then the pain returning and after seeing the NS last time he said I have a "frozen shoulder"......maybe it was that all along and I had this surgery for nothing.....I don't even know.

    I'm just so past the end of my rope with this pain. I'd do ANYTHING to get it to go away. And if I could know that it would with help than ok, I could find some way to get thru it....but it's like no one...drs/PT wants to answer that. And that's not right. They had no hesitation at telling me I needed surgery and cutting me open and now that I still need them...they've moved on. That's how I feel.

    Sorry it's so long. TamTam, how long did/have you been dealing with the frozen shoulder thing? Is it resolved...how long did it take and what did you have to do?? First when they said that to me they told me I was going to have to be put out in the office where they would manipulate it (like you said) and then he did another MRI and CT scan at just 3 wks post op and sent me to PT instead. Should I ask for the other option? Was it any better??

    I want to wake up from this nightmare. I understand that it's been a long time for me and that the nerves won't be fixed overnight but was never lead to expect all this and then get no help with the pain. I don't expect to ever be 100% again...I live in the real world...but this...I can't live like this. I'm 39. I still want to have another child. I can't live this way forever. Thanks everyone. Love and hugs to you all. Talk soon.

    Tara in CT
  • like tamtam said, google "frozen shoulder" & check it out... I have seen someone in here that had a "nerve block" conducted for the pain associated with FSS, but they never came back here to let us know if it worked,,, guess you'll be busy trying to find relief for the pain, since no one out there will give you answers - so strange it is
  • Frozen shoulder is horrible, and I sympathize with what you are going through. Prior to my lumbar fusion I was doing some pool therapy (for L5/S1) and reached up to do a stretch and felt a sharp pain in my shoulder. I did not think much of it when it happened but the pain became progressively worse. The pain was so intense that I finally went to my Internist and he recommended PT. So great, I was doing PT for both my shoulder and my spine. Over the course of 6 weeks of shoulder PT which included exercises and the therapist manipulating my shoulder, I could not believe the pain. I thought my arm was going to fall off, and sleeping was horrible. I finally went back to my doctor and he ordered an MRI. I had two small tears in my muscles. Since my lumbar fusion was coming up and the PT for my shoulder seemed to be making things worse I just dealt with the pain. About three months after my fusion my shoulder froze. The good news is that the pain was mostly gone but I just could not use my left arm. I could only lift it as high as my collar bone, it was completely locked. I could not reach anything in cupboards, wash my hair, go through drive throughs, or anything else with my left arm. Finally I went to a surgeon and he wanted to give me a steroid injection. I said no thanks. The pain was mostly gone, I just could not reach with this arm. I decided to gently start working this arm. I would lay on the floor and try to reach over my head and touch the floor. My left arm would just suspend in mid air but I would ever so slightly stretch it trying to reach the floor. I did this for months and finally after 6 months or so I could finally reach above my head. Overall the whole process took nearly a year to heal/recover. I still have some shoulder pain but I can use my arm now. It is a horrible thing to go through especially with spinal problems. I am not sure that your situation is at all similar to mine but I thought I would share my story. I hope you can find an answer to your pain/symptoms.
  • I am so sorry you are having such a hard time! Hang in there my dear! There are answers, it is just like playing Where's Waldo to locate them! :)

    Right before my second surgery, I woke up in the middle of the night with excrushiating pain radiating down my right leg. My symptoms had all been in my left leg.

    A new MRI was ordered and 3 days later I was in surgery as planned.

    When my surgeon came out to talk to my husband as I was in recovery, he told him that there was much more damage then they had originally thought and planned for and I would need a fusion or ADR.

    I needed to heal from that surgery, build my immune system and strength. I also wanted to wait as long as I could to see if insurance would approve the ADR.

    I spent 2 years going to PT, getting injections, nerve blocks, etc~rehabing to do it all over again!! :(

    I can understand your frustration! A frozen shoulder can be overcome, but it isn't easy and you will have to work hard at it. But, the results will be worth it!

    Hang in there and know we are here for you!
  • It sounds like you already had an ESI..epidural steriod injection. They help some people but not others. From the symptoms you have described I wonder if you had just a regular MRI or a MRI\arthrogram. The MRI\arthrogram would show things a regular MRI might not such as a labral tear. Just wondering because your symptoms sure do sound like something is wrong in your shoulder.
    Now I am not a doctor but did work for an orthopedic surgeon..and have seen a labrum tear not show up on a MRI but did on a MRI\arthrogram. That is why I brought it up. I am sorry you are dealing with this frozen shoulder thing. I have not had neck surgery but had a lumbar fusion 11 weeks ago.
    My doctor stopped therapy because I was in too much pain after each visit. He said maybe it was too soon. I think physical therapy is a great tool in all of our recovery. The trick is to find the right time for therapy. Let your doctor know if you are in pain after therapy.
    I think it is normal to be sore but you shouldn't be in severe pain.

    I think all of us on this site can empathize with you on dealing with daily pain. And dealing with the way it affects your life and those around you.

    Thinking of you >:D<
  • Tonya...thanx..and u r correct, now that I know what the letters stand for I did have the injection in my neck. It was supposed to be an epidural one and then they changed it...so I honestly don't remember the "type"...all I know is the pain stopped for a few days but then I had that new pain in back of my neck and all across the top from one shoulder to the other on backside of neck/shoulders. That pain I still have now. And after that few days, all the rest came back. And I was not going to get the next two in the "series" as they put it. That's when I finally got the ok from WC for the surgery.

    I'm not sure about the MRI...all I can tell you is they both were different. The MRI was with and without contrast and same for the CT scan. I'd never had either with contrast before and still have the bruises on my arm from them trying to find a vein.

    My next drs appt with my ortho is either 6/1 or 6/2 and I will def be talking to him about some things. Can't even get my NS to call me back most of the time. My husband tried today and here it is....5pm office is closed and no return call. Meds are almost gone...not working anyways...asked for something new plus want to try the Lyrica and I can't even get a return call. I really hate that office. They don't even care.

    I'm tired of hearing myself whine about it. I've just been so beyond upset lately and frustrated and this is the only place I have where someone will not only listen, but gets it. I need a dr to do that.

    How are you doing? Sorry to hear your therapy was making it worse. I hope something changes that soon for you. I agree, therapy should be good. Here's what I don't get....before the surgery, I could just barely use my arm to dry my hair and put on deod. NOW, since the surgery, I can't do either. I know there are no quick fixes out there. I guess I just wish that my NS had actually told me that there was a chance my pain would come back so at least I could have known that. I may have opted not to do the surgery had I known. He told me that it was normally about a 3 month recovery time frame and that it could get me back to 80%. Nothing like what I've experienced so far was mentioned.

    Thanks Tonya....even though I have this site and every single person who has responded to me has been so supportive and fantastic...it's so hard because I feel so alone. And not even being able to hug my kids and such....it's so awful.

    Thank you for listening. Talk more soon.

    oh and huge PS. Thank you to everyone else as well. Didn't mean for it to seem like I'd not heard and been thankful for all the other advice as well.
  • Tara,

    As far as my shoulder issues go and my neck issues I was very naive entering into this whole process. I was a business person and new nothing about the medical field. Sure I have had my share of injuries and surgeries, huge sports person, but doc say you need surgery I wake up ok good to go do some therapy and back at work. But spine surgery as I soon learned was not the same process, well not for me. My shoulder itself was injured in the accident in dec of 05. Finally in dec of 07 did they really look at it. The original Mri showed a issue with my shoulder but nothing to major that they thought physical therapy wouldn't help. Long story short by the time a doctor saw me for the shoulder it had dropped several inches. It was very visible. So there was no need to do the shoulder manipulation at that point they scoped it first found the tear and did a open surgery to address it and the compression. They did address the frozen shoulder before starting the procedure. I can say following the surgery I knew pretty much within a week the difference between the on going issues with my neck, radicular pain and what was my shoulder pain. My neck issues turned into a larger under taking than I could have ever imagined. But what happened in my situation is not normal.

    The emg is where they stick you with needles, to test the nerves. If I was in your shoes I would let them do the manipulation and be done with it in place of waiting it out. Then if your still having pain I would have them look further into your neck. But the obvious is the frozen shoulder. That definitely could be putting more stress on your neck with having improper body mechanics.

    I have seen where members following surgery have had a block of sorts to kind of reset their neck in aid in the healing process, but for now I would address the shoulder and see what happens, if I was in your shoes.
  • OMG...it seems like every day now there is a new hell for me to deal with. And believe me, I am NOT able to handle ANYTHING right now.

    My husband calls the NS office back to either get me a new med since the ones I have been on aren't working, or up the dose and I wanted a script for Lyrica. THIS is what I got........NOTHING. NS doesn't want to up my dosage so he gives me yet another script for the same crappy percocet that haven't been doing a damn thing. He won't give me the Lyrica as he claims it's contra-indicated which I don't see how since I've heard others being on it.

    SO, here I sit...again, in tears with a stupid bottle of pills that DON'T HELP THE PAIN. And what am I supposed to do with that????!!!!!!!!!!!!!!!

    I want to leave my family as this pain has not only destroyed me but now it's destroying them. I feel terrible and beyond guilty and I'm so damn angry I can't even breathe.

    I'm sorry. I don't mean to bother everyone here with my problems and my zero life. I am past the end of my rope and don't see any help in sight.

    Gonna tell my ortho that I want the manipulation done and that I'm not interesting in waiting anymore since no one is willing to help me or help manage and get rid of my pain. Had an EMG a million yrs ago but not for this. gotta go.
  • Hi Tara,

    I feel your pain and frustration. I also felt like giving up at times and feel the frustration of everyhting affecting the family. I hang in there however and slowly things are getting better. Still bumps here and there but patience and perseverance helps!. I had C5/C6 ACDF in Feb of this year at the top hosipital in NYC. Soon after the surgery all my pain was gone, however the shoulder pain was still there and peristed for two months. The fusion was going well, but was confused with the shoulder pain. The surgeon mentioned because of all the stretching during the surgery that the ligaments were distrubted and hence the pain. I told him however that I had the same pain before the surgery. He suggested that I may have a shoudler issue too...However that was not the case. Prior to my surgery I had MRI. cat scan and nerve conduction test of the shoulder and it was perfect. He concluded that I need to wait a few more months to see how the shoulder pain will improve. It's approximately four months and I can tell you now that my pain is almost 60 % gone. All I am taking is one vicadoin a day. I am hopeful that by summer it's going to be totally gone. I am saying all of this to say that similar to you I was frustrated with the pain after surgery. I decided to give the surgeon the benifit of the doubt and wait a few months to see what happened. Patience was key during those waiting months and I think it helps. Also, he recommended walking for 1/2 a day as it helps the shoulder to move. That I think helped a lot. We all need to patient..We all need to inspire ourself to persevere. I think we all have it in us. It's not easy but it's doable..! BTW, my commute does not help, 2 hrs each way to NYC to work. I think I would do better without the driving..

    Hang in there and you will be ok...

  • You are only about 5-6 weeks out right now. You may be feeling worse because the meds they bathed your spine with have worn off now. That's usually closer to 3 weeks but we all react differently and the docs use diff meds.

    No matter what you need to give yourself time to heal. Sounds like your husband has your back (hehe had to say that) so relax and allow yourself to be the patient. That's so hard to do when you are used to doing everything.
  • I just don't. Been dealing with this pain for going on 10 damn months. I would love to walk but I can't DUE TO PAIN in the back of my neck. Can't even walk around a groc store or anything. It's so past frustrated there isn't even a word for it.

    Today has been a little better. Using heat on my shoulder and ice on my neck. Still in pain and plenty of it. Can't run an errand or hug my kids....

    But thanks. Gotta get off this thing. Been on awhile and it's killing my neck.

    Tara in CT

    Ps. I can't be a patient when I now basically have to take care of myself and my kids and I can't. My husband has had to go back to work...vaca time spent...and all I want is just ONE pain med to help. Really done with drs right now. They never listen. And they aren't helping. I know it's only been a short time out but since I was NEVER told the pain would/could come back I'm really pissed/upset. I can't even sit and play playdough with my 5 yr old. It's pathetic.
  • I know the feelingt's. It's tough..

    I feel bad at times also to not be able to play with my kids. I went back to work four weeks after my surgery and still had the neck pain. For me, the neck pain went away after the third month. Sleeping on the back helped me!. Also, I had some valium prior to the surgery. After the surgery, my GP told me to take it to relax the muscle. I found that helped the first three months. If you think chatiing with someone will help, PM me.

    God Bless
  • Sounds to me that you really need to see a pain managemnet doctor first to get your daily pain level down to where you can somewhat function. I believe you stated this is a workmans comp claim so you need to find out where they want you to go or just go on your own and try to make it work. In my opinion a lot of the things you have mentioned should be on the back burner until you get the pain issue under control. You are not far from you ortho appointment so maybe he can give you some insite on what to do..

    There are a lot of doctors out there who want to do the surgery and be done with you. You are not unique with having this happen. I feel that you should be calling the doctor and not your husband. You are the patient and the doctor worked on you not your husband. The fact that your husband is doing the calling could lead the doctor to think you are just looking for drugs. You need to turn youself into a squeaky wheel so you can get greased. While you are waiting to see a PM doctor I would call every single day and if you don't get a response call 2 times a day. Maybe go to the office unannounced and tell them you need to see the doctor. Be forcefull which shouldn't be to hard considering the pain your dealing with. If you have to go this far I would also write this doctor off as a future provider of care.

    It is a very long haul to get back after most types of back surgery's and the doctors should tell us this but most don't and we find out after the fact that we have a very long time before we might start feeling like we should. I waited for close to a year to have my latest surgery due to insurance issues so I know very well what you are going through. I don't have any issues with a locked shoulder so I don't know what your going through in regards to that.

    There are ways to hug your kids without killing yourself and trust me they know that mom is hurting.

    I hope you can soon find some help for your pain and also find out what else might be going on.

  • Today marks my 13mos anniv. from cervical foraminotomy C5-6,C6-7. Frozen Shoulder set in immediately following surgery (burning). Stages 1 & 2 were "take your breath away pain" & stage 3 (thawing) still has its ups & downs, where I will be couch-bound for hours, or a day, due to spasms. But at least now I can almost taste the end of this.
    I take 1/2 vicodin a.m., 1/2 in afternoon, 1 meloxicam a.m. & 1 flexeril at bedtime. These do not stop the pain, just manage it enough to move & groove better. It is a long recovery & you must remain positive. I have experienced a few days of depression & have my pity parties because of so many days of relentless pain. After I googled frozen shoulder, 6 mos post op my PT told me, it answered all the "unknown" & made it a little easier to deal with.
    Anyway having said all that, once you know what you are up against & what to expect, & that you are normal, I think the recovery begins. You'll lighten up some, & relax.
    Its a scary journey because frozen shoulder can mimick the very same symptoms that you had the surgery for. Adhesions pressing on nerves, etc.
    Sorry to hear when anyone gets this.
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