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Completely Frustrated and in constant pain

I had an Anterior Cervical Discectomy and Fusion with plates, screws and cadaver bone of C6-C7 in November 2011. They found that the disc above the fusion was also bulging even worse after the fusion so they went back in and fused C5-C6 in February 2012. I have severe tenderness to teh touch on the back of my neck and severe muscle spasms. My left arm has shooting pain and constant pain in neck, shoulders, mid back and I have trouble swallowing. I used to sing before teh srgery and now, I can't. I have three children, 16, 13 and 10 all of whom are very busy with Marching Band, Football and Tae Kwan Do. I spend half of my day in the car running them from place to place trying to keep a smile on my face even though I feel like crying. My husband has tried to be understanding but now tells me to get in a better mood and that I act like I do not love him anymore which is far from the truth. Everyone tells me I am too thin or that I need to get out or that I need to exercise. My orthopedic surgeon sent me to see a pain management doctor early this month. They did Trigger point injections which was pure hell and then did 4 Facet injections on the 3rd of August. I still have NO relief. I was scheduled for 4 more facet injections on Aug 23 but something went wrong between the orthopedic doctor and the pain management doctor. I got a call from the orthopedic saying that I was NOT to see pain management doc any longer because he "wasn't doing what he was supposed too", and that they were sending me to another Pain Management doc. I hadn't hear from anyone so I called the orthos office and asked them who they were sending me too. She said, "They haven't called yo yet?" "I am SO frustrated with their office because I talked to the head RN and told her all about your case." So I called the new docs office, informed them that the head RN had the details and they said they had not gotten anything from the ortho's office. I get a call this morning from new pain docs office and they said they did not have an opening for over two weeks but that they could let me see the PA in the office on Thursday to see "if I Qualify for any of their services." I am SO frustrated and in tears. I am being bounced around IN PAIN with NO answers and RUDE office personnel. My husband is saying that I am ALWAYS negative and to try and get in a better mood. I want to EXPLODE. I was a facility medical administrator and I have lost that. I used to be athletic and I have lost that too. I used to love fishing and camping and I can't do those without extreme pain. I run my kids around in a car with no AC, barely tolerating this TX heat, trying to keep a smile on my face while my neck and body are screaming at me. I am in bed when I am not taking them places. There is so much that has changed in the past year. I have lost at least 20 pounds. I weigh about 106 lbs and I am 5'2. My muscles spasm so bad that I look like I have a webbed neck. No one understands the pain or the "mood". I feel alone. I am pissed off and I want them to fix this instead of bouncing me around until my health insurance runs out. I try to exercise as much as I can. I try to be positive and I try to be the way I used to be. I want ME back.

Thanks :)


  • Joe241JJoe241 Posts: 185
    edited 08/20/2012 - 4:04 PM
    Hi and welcome to this forum, there are many people who know what you are going through and the pain you feel. I am six weeks post op and still in pain, X-ray looked good but still have pain. I can tell my wife is getting tired of doing the laundry and going to the store to get heavy items. I am to start pt as soon as I can get appt, I usually do the laundry and other things. I am sorry about your husband getting frustrated there are plenty of post like yours, I am having problems with my dad and siblings because I can't do much. Unless you are a spiney there is no way anyone can understand what we feel, also use this forum as a vent to get things out. I am a 47 yr old male who is now on SSD with limitations, I was a firefighter for 25 years, worked two jobs and worked out. I was up at 5:30 am for work but now what sleep I get is minimal and I am usually awake till 2, 3 or 4 am and crawl out of bed at 10 or 11 am. Look around this forum and you probably will find someone who is going through the same and maybe another women who can completely understand your situation. Take care and God Bless our fellow spiney. Joe
    ACDF C5-6 July 10, 2012 with plate and screws.
  • KarenDKKarenD Posts: 742
    edited 08/20/2012 - 4:08 PM
    It is ridiculous when we get jerked around by different doctors' offices. They should understand the pain that we go through on a daily basis. It's awful that we just have to keep going and pushing to try to get relief. I saw something on the Chronic Pain area and one thread called Guilt and Frustration around my Invisible Chronic Pain helped me read through recently to understand I wasn't alone. One person even said he was going to print it out for his spouse.

    Singing was important to me before ACDF. I had a lot of swallowing issues and couldn't sing - and then when I could sing at all I had lost my upper register. I went to an ENT who saw that one of my vocal chords was partially paralyzed. It has since corrected. I understand if the last thing you want to do is try to see another doctor.

    Best wishes,

    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • sunshinebry2000ssunshinebry2000 Posts: 81
    edited 08/20/2012 - 6:40 PM
    Oh I am so sorry you are going through this but I can tell you are not alone. Friends and Family do not understand I know because mine have been scarce as well. I had 3 level ACDF C4-C7 on 4/16/12. I had many dark days that i questioned my sanity and I was depressed like you. There will be many things you will not be able to do anymore but your life is not over and I was told it takes 6 months to one year to recover from this surgery, you are not done from first or second at this point. You need to give yourself a break, this is difficult under normal circumstances and you had 2 intrusions to your neck in few months time. it gets aggravated. Did you follow up with PT at all. Initially it was hard but I fould it to be helpful with pain believe it or not. Movement is important even when you are in pain. Now with the MDs, unfortunatley we need to be our own advocates in healthcare these days noone seems to be in your corner. You need to stay on top of the docs and demand care and demand what you need, you should be able to be in a pain free state that is your right. Please know that we are here for you to vent anytime, somewhere on the forum is a letter for families that may help your husband understand what you are going through. They think that after the surgery it will be business as usual they just dont get what this does to our bodies. I hope you find some relief because being in constant pain makes everyone crazy I know I have been there. Please keep us posted . We are here for you. Blessings Kim
    Kimberly Martin
  • Your welcoming comments mean SO much to me. I appreciate them more than you know. I did read the letter to "Normals from a person with chronic pain." I cried because that is exactly how I feel. I want my husband to read it. He has neck problems as well but not near this extent. He tells me, "My neck hurts too so I understand." I want to say, "No, you don't. You actually have no clue." I am so glad I have found this forum to vent and cry and be with people who understand. It is a HUGE weight lifted. I know that sounds corny but it is true. Thank you all so much and I look forward to sharing with you!

    Yes, I did PT, two times per week for 4 months and then when they referred me to the pain doc, they told me to hold off on PT because of the Facet Injections. I am really not looking forward to this new doc/PA that I have been referred too on Thursday. They have had me on Hydrocodone 10/325 2 tablets 4 times per day and Soma 4 times per day and then the new pain doc, that they told me not to go back too, prescribed Lyrica 75mg twice a day and Zanaflex. They told me not to take the Zanaflex and to continue with the Soma. I have been on this Hydrocodone and Soma ritual for almost a year and I am concerned about my liver and that it is doing damage. It also does not work as well as it used to. I have no idea what to tell them. I do not want them to think that I am just trying to get stronger pain meds. I just don't want to have to take medicine anymore. I just want it fixed!
    Thanks :)
  • Joe241JJoe241 Posts: 185
    edited 08/20/2012 - 8:23 PM
    I am happy we could help you Stacy and now how you feel about asking for stronger meds. I belief this site saved my sanity as here it is 2:17 am and I'm still awake. I can't lay down in bed to go to sleep until I can barely keep my eyes open and as soon as I lay down my neck starts saying, no you don't you are staying awake with me. I pray things start to change for the better, remember we are all spineys so come here anytime to vent. I have done it myself quite a few times and it does help. God Bless, Joe
    ACDF C5-6 July 10, 2012 with plate and screws.
  • Good Morning or afternoon whatever time of day it may be when you read this TX;

    Reading about your struggle sounds exactly like so many of our own. I finally got called a hypochondriac by My Mate the other day when I told him I was starting to flare-up. I was extremely angry I replied with a " F you , you dont know what pain is and the last thing you would have any understanding of is how bad my pain is. went to my bedroom and slammed the door ( surprised I didnt break the glass). I am in full blown flare-up and have moments where I think I may be suffering a heart attack due to the pain mimicking one. Thats my anxiety acting up. ( I hope) Im on 30 ml of oxycontin, 15 of oxycodone, 5 ml clonazepam for anxiety and 10 ml serax for sleep. I also have been told my breathing might be causing me problems due to polyps in my nasal passage so its not something to cheer about. Its looking like I may need surgery to remove them. But yes I do understand how frustrating it is when you feel so alone and your body feels as if its going to EXPLODE. Its bad enough that were terrified already by what we are going through and when a new symptom appears that we dont understand..... makes us feel like OMG this is getting worse, is our first thoughts. Then out of the blue the partner starts with his/hers putting words in our mouth that are not true but so very untrue , its even worse. Talk about adding to our pain. Its an overwhelming physical / emotional battle to try and save ourselves from drowning and losing what we have left. Reading about your pain and struggle made me cry. I was doing well for a few months and a couple of weeks ago I started to notice the flare up coming up slowly due to a new exercise my physio started me on , I pulled the trigger on the gun and now here I am reading back at the site of how many of you are dealing with your pain once again. Your story really got me though cause I can sympathize with it totally. Now the good news is that My Mate did apologize and hes back in mama mode until I can get back on my feet without any complaints from him. I can only hope that some relief comes to you soon so that you can feel some kind of comfort in your life even if its for a bit. PS: know how you feel about the pain meds ,started feeling side pain where my liver is located the past couple of days and stopped taking the oxycodone and lowered my intake of oxycontin also . I am relying on cold packs and heating pad to see me through my pain this time around along with my anxiety pills cause without those whew my BP will sky rocket from the pain. Going to have my liver checked out next week at my Docs. Let us know how things go with your new Doc or just to let us know how you are. ( smile)

    Dear Joe: Thats funny cause my neck talks to me also and says the exact same things...LOL no you dont you are going to stay awake with ME!

    Wishing everyone here a good day:)

  • islandstylistiislandstylist Posts: 307
    edited 08/23/2012 - 10:10 AM
    Totally relate to you,

    I am a mother of 3. My youngest baby is 10 months old and has been cared for by my mother and future mil since he was 2 mos old as I have been told not to care for him myself because I am not allowed to lift him. I am post acdf c6/c7 myself 5 weeks out. My c5/c6 is also bulging so I pray that wont need fixing down the road. So sorry that happened to you.

    I feel pretty guilty not being able to care for my family and get frustrated that my house is a mess. I kind of feel like a burden to my fiance and hope this all passes soon. I can tell he longs for the fun me to come back. I too weigh 105 lbs and am 5'3 and get anorexia comments from family members. Wtf...I am in pain and stressed and trying to cope.

    I am sorry that you are going through all this. Just wanted to let you know that there are lots of us out here that understand. We are here for you.

    Missy, 1 level ACDF C6/C7 Monday July 16th 2012.

  • You have come to the right place, as we all are dealing with the same issues, Pain, Lack of Sleep, Just wanting to be as we were prior to having these horrible issues. Our family and friends, saying Get Over it Already! I always come back with Like I really wanted this to happen to me, and I am always trying to put on "The Happy Face", but sometimes it's just not possibe. So I just go off and do what makes ME feel better, and that is what matter's most to me.

    I also shed a tear reading the post, because I am so tired of having to "defend" myself in front of my own Family and Best of Friends. Anyway I am so glad you found this forum, everyone here is Family even though we have never met in person. It just feels good inside to know someone Understands! :)

    ACDF C4-C7 5/13/2010. Synthetic Bone Graft Failed Fusion.
    PCF C4-C7 8/13/13. Rods and Screws Fused in 3 Months with Autograft.
    C6-C7 Spineous process Surgically Shaved Off 3/11/14.
  • Do you know why they don't want you to take the zanaflex? I take zanaflex and hydrocodone, I find it works well together. I have taken hydrocodone and soma together, it makes me feel extremely drunk. My pain doc says she never prescribes hydrocodone and soma together because it is a really abused combination and there are other just as effective if not better medication combinations. I am also surprised they don't want you to take the lyrica. You probably need a nerve med.

    Anyway....... I know how you feel. I HATE when people say oh I have a bad neck too, and when I ask them about it they get a sore neck every once in a while. Its not like they have bad discs or things like that. "neck pain" is different from "pain from your cervical spine"!
    ACDF C4-5 June 23rd, 2011

    Another surgery in the near future. I am 26 years old.

    Current Meds- Norco 7.5/325, Cymbalta 60mg, Gabapentin, Adderall 20mg
  • After I read your first post I started reading it to my wife but she as always interrupted me and started saying I don't understand that she is doing all the work around the house. I tried to get her to read the letter but she kept saying I do not undertand that she is picking up the slack, I told her three times I do understand but it did not register. She just kept saying that we do not understand what they go through. I'm used to that as every time I tell her something or answer a question she will not believe me, one time it was a question about our cell phone plan. After explaining over and over she went to our account on the Internet and even when I showed her what it said she still questioned it over and over. I should be used to it as she told me every thing I think, say or do is wrong and she knows whats going on in my mind better then I do. What do you say to that? Almost 19 years of marriage and most things have not changed, especially the physical aspect, she says she doesn't like it but has over 100 romance novels on the kindle. Sorry for rambling if I didn't have kids I would have been gone 15 years ago. I don't drink anymore, I don't smoke, I am always home I have never hit her or cheated on her but I get treated with no respect. I've been told that every thing is my imagination or I'm wrong when I ask her certain questions. Joe
    ACDF C5-6 July 10, 2012 with plate and screws.
  • Im so sorry Joe that you are going through this. It is hard on a marriage when one partner is sick or has chronic pain. Both me and my husband have health issues, his heart related and mine back related. I take my marriage vows very seriously and would never think of leaving him but he has always treated me good. We have both put each other through alot since we have been married but since almost losing him last yr. I don't even sweat the samll stuff anymore. I can't imagine living day in and day out being put down and talked down to. I admire the fact you dont drink or smoke or cheat. She does not realize how good she has it. There are many women I know who would love to have a man who will treat them that way. Just hang in there and know you can always come here to vent

  • Kelli, I also am lucky with my husband as he has chronic pain as well. Actually his problems began way before mine did so we've always been able to work things out. I am the one who goes to work, but i have a desk job and a fantastic boss so i can get up anytime i want or need to and wonder the office as i see fit. My husband is a stay at home husband, he's not able to work, not just physical issues but mental ones as well. He was feeling really down the other day because he felt like he doesn't contribute because he doesn't work, i explained to him that BECAUSE he stays at home and takes care of the house that allows be to be able to still work. He never realized how much him staying at home helps me and that i appreciated HIS sacrifice.

    Sorry for the long story. Joe i hope things turn around for you, your wife definitely doesn't understand how good she has it and that men like you are VERY hard to find.

    TX-Mom, also, try to keep your chin up. I know its hard to do but maybe sitting your husband down (or even writing him a letter so he can't interrupt) and explaining that you hurt and your doing everything you can and to just be supportive because once your in pain management, your doctor will be able to help you and that yes its a long process but be patient?

    Good luck and gentle hugs to all of you.
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