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Back again!!!!

MelWMMelW Posts: 427
edited 06/11/2012 - 8:40 AM in Neck Pain: Cervical
I know it has been a while since I have posted. Life has been busy, busy. My son is doing really well now. He actually has been sticking with things since he got out of the hospital and on his new meds. He is absolutely fabulous on his guitar; sometimes I can not believe it is him playing :). And he is back into wrestling and loves it!!!!

Okay now on to me, which is not so chipper.... :( So I had my ACDF on C5&6 back in March 2009, which helped my arm pain, tingling and numbness but am still having a lot of pain. As of now I have had countless epidurals, which did not help, rysotamy (spell???)aka nerves burned, then was sent for a myleogram which was horrific; the hole didnt close up and I leaked csf for a week I ended up having to have a blood patch to get the massive migraine to go away and get me to stop throwing up, not to mention a trip to the ER because I didn't know what was going on and the nurse at the diagnostic imaging place said she "didn't know what the problem is, and it does not sound like I had a csf leak" even though every symptom was that I was leaking csf, it was a total nightmare. Anyway, went to my neuro last week and he said I am not a candidate for another surgery and that he thinks it is all nerve related and since I am fused it is putting stress on my upper levels, which I was told it could on either the upper or lower levels. Needless to say my surgeon thinks I am taking way too many narcotics, which I am but that is really the only way I can function, I am only just getting ready to turn 30 and am married and have two kids, half the time I do not even want to do anything but sit around the house because if I do too much I start to hurt and have trouble getting it under control. My PM has me back on Percocet and muscle relaxers. My neuro suggested an SCS possibly, which sounds kind of radical and invasive really but he said this is a last resort.... I go to see the PM this afternoon to see what his recommendation is; last time I talked to him he said there was no other injections he could do. So with the neuro saying he does not think any more surgery is going to help and the PM saying he can not do anymore injections, I am not quite sure where this leaves me other than taking pain meds, which I am totally sick of depending on, or this stimulator that sounds kind of insane. Not to mention I do not know how much more my work is going to put up with this. They have been really cool about all of it for the most part but I am so afraid of losing my job, I love my job! And my poor husband.... he couldn't take seeing me cry anymore and called my PM and neuro and was a little heated, my hubby does not understand how complicated things can be with the neck and back and thinks I should have been fixed and I should not still be in pain. My doctors are good at what they do and I do trust them a lot. I am a nervous wreck! My husband does not think an SCS is the right thing for me, but then again he has not been in pain for a year and a half and if he was he would realize people will try almost anything to get the pain to go away or even take t away a little. I feel 90 in a 30 yr olds body!!!!!! :( I had to miss my company Christmas party because I was still on bed rest from my blood patch, and I was upset but not real upset, it was almost a relief because if I would have danced or stood too long I would have paid for it for days to follow. I know things will never be "normal" again but I would at least like to not have to worry about everything I do putting me in pain, it is quite depressing really. My kids are constantly asking me what is wrong because they know I am in pain and I usually lie to them and my husband because I do not want them to feel bad for me anymore or not go out and do things because they think I can not go and do it; I just lie and go do whatever it is and take more pain meds so I do not ruin their time.

Sorry this is soooo long and depressing. It has been a while since I have gotten to vent! And yes I am on an antidepressant :) I would be more of a mess at this point if not.


  • Hi Mel,

    What was the results of the myelogram? Remember once you do a SCS you can no longer have MRI's. Why does your surgeon not think you are a candidate for more surgery? When you had your first surgery did you not experience any relief at all? Have you had a emg study since your surgery? If it were me I would get another opinion, and a fresh set of eyes on your case. What do they say is causing all the pain? Do you have a ten's unit and are you getting any relief from using it. I notice you didn't say anything about taking a nerve medicine, something you may want to look at. Keep in mind all of those come with side effects and takes sometime to work with them. Have you tried trigger point injections. Those all seem to help and me and the massage afterwards as well. Although the relief is not permanent it does break the pain cycle. I do hope your pm doc has some answers for you today. Take care and keep us posted.
  • My neuro said my fusion looked good, I have some bone spurring on c3 and 4 but it is very mild and would not cause me this much pain. The other thing I forgot to mention was that ever since surgery I have had this lump on the back of my neck and it seems to be where some of my pain is as well, the lump is not where I had surgery though, it is higher up around c2, 3, and 4. I told my neuro about it when I saw him last week and he did not know why I had the lump. Nothing showed up on the myleogram, but I am now scared to death of having any more invasive testing done after that nightmare. He said he does not see anything right now that he can surgically fix. I did have some relief after surgery; the numbness and tingling in my arm, tingling and numbness in my fingers are gone and have not returned since surgery so I am greatful for that. I am not sure what an emg is.... At this point they are being honest and saying they really are not sure what is going on and the only thing it is is my nerves are all jacked up and the fusion on c 5 and 6 is causing stress on the upper levels. I do not have a tens unit but have heard a lot of people that have used them and planned on mentioning it to the PM today. I do not take any type of nerve meds. At one point he presribed me one but after looking into it I was afraid of all of the side effects it had they sounded pretty horrible and I know a few people that had taken it and they said they would rather die then take it again, i can not remember what it was now though. In the beginning, before I even had my ACDF, I was prescribed Lyrica (which the doc gave me samples of and it helped me) but my insurance will not cover it unless you are diagnosed with fibromyalgia, which is such a crock of poo. I have also had the trigger point injections, with no relief, I forgot to mention those previously. I will let you know how the appointment goes. I think at this point the most frustrating thing is that they are not seeing anything to know where the pain is coming from. Would there be any possiblity that I am allergic to something they used when I had my fusion, like my hardware???? Or would the reaction be more severe??? Could I have an infection or would the symptoms be different? I have tried to think of everything/anything that it could be! I am so miserable :'(

    I hope he has some answers too! As much as I love my job there have been so many times I just want to quit because the pain is so much worse the longer I sit at my desk. The only thing that has kept me from not quitting is knowing how much we would have to give up financially; my sons guitar lessons, taking the family out to dinner, athletics, any extra stuff we like to do more or less, and I feel selfish even thinking of doing that to our family. My check supports all of our "extra" stuff for the kids and my husband and I. Not to mentionMy neuro said I have one of the worst possible jobs, a desk job....
  • So I saw my PM yesterday afternoon and it did not go as bad as I thought it was going to. He seems so concerned :) I mentioned the TENS unit and he was all for it. He wrote me an order for PT (massage, ultrasound, and moist heat) and said if the TENS unit works for me in PT then he will order me one. Much better than an SCS implanted into my body, which he said will be a very last resort if none of this works we will then discuss possibly implanting the SCS. He said he would do a trial for sure because a lot of times the SCS works better when there is leg or arm pain associated, and I do not have arm or leg pain now. He is also sending me to see a chronic pain specialist to manage my pain. He said he has done everything he can at this point and his office does not deal with chronic pain, well they do as long as what they are doing works and it has not for me. I feel like I am going in the right direction now, hopefully :)
  • You need to do some homework and find a reputable doctor for a 2nd opinion! You have no clue how many possibilities could be causing your continued pain. First of all, nerves can take 6-12 months to settle down after fusion surgery. Secondly, doctors have diagnostic tools to determine where the pain is coming from. I find it hard to believe that a good competent doctor can't locate the pain source, instead it sounds like the doc is simply "guessing" when he says that maybe it's coming from the adjacent levels. Also, if it indeed is coming from the adjacent levels, then you very well may need surgury , or have needed surgury at those levels also from the start and they just missed it! Also, it's possible that while they removed the disc, maybe the doc did not fully decompress your nerves by fully removing/cutting out bone spurs. One procedure they can try before giving up is a corpectemy. Corpectemies Remove the vertebrae alltogether which totally frees up any potential compression and they yield just as positive results. I'm just thinking of all these possibilities based on what I've seen and learned. But you definitely need someone top notch, not just a doc someone referred to you. I mean, everyone is convinced that their docs are the best, but most can't prove or explain why they think that. Do your homework and go get a solid 2nd opinion before giving up and resorting to scs or assuming big time pain meds are the only options. And the comment about how bad the nerve pain meds are is way overblown. I take neurontin for my bipolar disorder and it just so happens to be one of the top meds for nerve pain relief. And I have yet to notice any unpleasant side effects. I find it relaxes me and calms my anxiety. Anyways, Please don't make the mistaken notion that all doctors are created equal. They're not. And the way they completely botched the mylogram really scares me about the quality and competency of care you are getting. I also had a mylogram and they gave me a pamphlet and had me sign disclosures stating the possible side effects and symptoms of a csf leak and to report it immediately!!! And there is a extremely severe nerve pain disorder that one can get due to blood patches. I forget the name of it, arachnadices or some weird name like that and it can show up as late as 8 months after a blood patch and this was never disclosed to me and I guess it's because it's so rare but I don't think it's as rare as they say it is. Anyways, that's my 2 cents worth.
  • Thanks for the info. I am to the point where I am going to get a second opinion. My husband has been begging me to for months now. And the doctors have more or less said they do not know where the pain is coming from other than telling me it is stress from the upper levels, arthritis, and DDD, and they are sending me to a chronic pain doc and therapy. I think they just hoped it was going to be cut and dry, which from the sounds of it most of these types of surgeries are not always, but I think they just do not want to bother with me anymore, I ask too many questions I guess. I am so stressed at the thought of having to go through surgery again!

    And after checking into the scs, I would not do it unless it was seriously the last resort. And as far as pain meds go, I do not want to be drugged out my mind, which is what I am afraid is going to happen. I am really good about doing research and I thought I had done pretty good research before surgery....apparently not!

    After my surgery it is hard to believe they always find everything. I am starting to become very skeptical. The doc came out to talk to my husband and mom while I was in recovery and told them he found a huge bone spur on me, which was not found on any of the xrays or MRI's, and said for my age he was suprised to find one that big. It is scary to think you have pain and a doctor can not find it, you are supposed to trust them and hope they can find what the heck is wrong. Not to mention I think one of the doctors was trying a scare tactic to get me not to get a second opinion, told me that I was welcome to go somewhere else but I may just find a doc that wants to cut on me. UGH!

    As far as the blood patch, they did not tell me anything about the rare disorder you discribe. They told me what the complications could be and that if I have any of the symptoms to call and of course I did and they said my symptoms did not sound related. I seriously thought I was going to go insane from the pain I was having in my head. I had EVERY symptom and they told me to wait until the end of the week and if it did not go away to call back. SOOOOO frustrating!
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