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Upset and don't know what to do.

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:19 AM in Neck Pain: Cervical
Well, I am starting to feel very discouraged about this journey. I was diagnoised in March (see below). After the diagnosis my PCP sent me to pain management, and my PM doc gave me an ESI in April, which didn't work. In early June he referred me to a physiatrist for more treatment (he really only does ESI's and meds). After a few weeks waiting to get it, she performed an EMG last Wednesday (no nerve damage, only muscle spasms). Now she wants me to go to decompression therapy. Has anyone tried this?

We briefly discussed the surgical option. SHe said since I don't have nerve damage there is no urgency for surgery. SHe did say I could get worse.

I have tried conventional PT and it didn't help. I am willing to do whatever she suggests, but I am getting discouraged that nothing is helping. I don't want to sound like a complainer, I know all of you are suffering just like me, and lots of you are worse off. But my life is changing, for the worse, because of this and frankly, I am getting sick of it.

When the PM handed me off to the physiatrist, he said that she would handle everything, including my meds. He had me on percoset, 1 pill 3x a day, which worked well in allievating my pain. The physiatrist seems reluctant to provide me proper pain relief. On my first visit I did a urine drug screen, and she gave me Ultram. The Ultram doesn't do much, if anything, for my pain. Mornings and night are the worse for me, pain wise. At my second visit, she gave me 30 hydrocodone, to last for a whole month! If this decompression therapy is painful, 1 hyrdocondoen won't cut it. As it is I am supplementing the Ultram with Advil and Tylenol, and my horrible neck/pain pain is still present. I understand the addiction potential of the pain killers, but if I didn't have this kind of pain I would not want to take pain killers. I would rather suffer from the side affect of pain meds than suffer from this daily pain.

Any suggestions?


  • Carly, I am so sorry you are having such problems. As a mother, I also understand how difficult it is to remain as functional as possible without the proper medication. I too worry about addiction and understand the doctors concerns. I use the medication as indicated only but I feel bad when I have to call the doctors office every week for a refill. They only prescribe enough for 5 days, sometimes it lasts longer if I am having better days. I try not to take the pain meds unless I really need to in order to go about my normal routine. I am getting to know the pharmacist like a personal friend. Like you said, just take one day at a time. Come here when you need to vent as we all understand what you are going through
  • I know that getting the proper diagnosis and trying all of the treatment options is very time consuming and the pain is still there the whole time.

    I went through this about 8 years ago with my lower back. Finally had fusion and was better immediately.

    Recently had problems with neck and went directly to the Nero (after PT) and had surgery.

    I would never tell anyone to rush into surgery and it does not solve all problems. I will never be 100% pain free after 2 fusions but I can function without pain meds most of the time now.

    Is it possible for you to get an appointment with a nerosurgeon and see what he/she thinks? It might be worth the time to establish yourself as a patient? I know that as a new patient it can sometimes take several months to get in to see a good Nero.
  • I would also suggest seeing a neurosurgeon. Honestly, if it ends up coming down to needing surgery, you'll need a neuro anyways, so why not start that process.

    My PCP and orthopedic always prescribe my pain meds, neither of my neuros or my PM ever did. My 2nd neuro, who did my c6-c7 ACDF on June 9th did prescribe me some pain meds after surgery, but it was what my other doctors had prescribe, but 1/2 the dosage, go figure, but he is old school, and a great doctor.

    Just like the other poster, I get 40 pills at a time, but only took them when I truly needed them, and since they always lasted longer than they were supposed to, I guess no one ever questioned my need for them.

    I have a small bulge at c3-c4 w/o symptoms, but my c6-c7 gave me all kinds of issues from finger pain/numbness, sore upper arm, killer pain in my right armpit, especially when I moved my neck to the right or backwards, pain in my upper back, neck and between my shoulders, going down my middle back... My EMG came back with no real nerve damage, but because nothing else help, and the problems I was having, surgery was my option.

    This coming Monday will mark four weeks post op, and I have had a great recovery so far, and only at times, will my one finger still feel a little off, so regardless of what the EMG showed, I must have had some damage? The doctor who performed my EMG did say that sometimes it will not always show, so more than one EMG might be needed.

    I'm going to AGREE with everyone that says surgery should be your LAST option, but where I, and my doctors differ, don't wait until you have too much nerve damage, as you will only get so much relief.

    I'm 39, could function if I didn't do anything, but for me the risk of surgery actually changing my life for the better, was worth the risk, and I hope as I type this I am fusing... I so look forward to being able to actually lift things again, and do things for more than a few minutes at a time.

    Find a neuro doctor, get a second opinion, and trsut in your doctors, of course, this may sound corny, but always keep a positive attitude, it truly can only help you!

    Wish you the best, this stuff really does suck.
  • Carly,
    I have to agree with Ewaight. Perhaps it is time to get another opinion from a NS or even a OS if you can. It is not fun dealing with pain, and since you have tried PT, it may be time to explore other options. I was lucky that my problems came about rather quickly, and needed to be surgicaly taken care of right away. Good luck and hope that things start getting better in the near future.
  • I never even knew it happened... Woke up with a little pain, went away, came back, went away again. Started to get more frequent after I started a new job, then one day at work slipped and it never went away again, only got worse. Funny thing, when I slipped, it really didn't hurt either right away.

    When I was doing my online research, I read about a person with something like a 9mm herniation, never had a symptom, went in for something else, and then found out. Not sure how often that happens, but I hear a lot of people have mild bulges and never know.

    Guess we are just the unlucky ones, that have the disc actually pushing on something.

    Take care, keep everyone updated.
  • It is so nice to come here and vent and talk to people who understand. My family is supportive and caring, but they don't know what I am going through, although my dad had an ACDF about 11 years ago. But he lives in Alaska, and I live in Arizona, so I don't see him alot. After I found out about the herniation and bulging we talked quite a bit about his experience. He did PT, had an unsuccessful ESI, then finally had surgery. Said it was the best thing he ever did and hasn't had a problem since.

    Yes, I think I will make an appt with a neurosurgeon or and Ortho. From all the reading I have done on this subject if you don't respond to conservative care in 6 weeks or so surgery is an option. This has been going on for ALOT longer than 6 weeks! I also think about driving, what if I got into a car accident? My neck could go from bad to worse if that happened. I live in outskirts of Phoenix and commute 40 miles round trip to work. A car accident isn't likely, but who knows?

    My physiatrist said that after about 1 year and a half your body reabsorbs the herniated material. She said that you are likely to have arthritis where the herniation occured. Great huh?

    Also from the reading I have done, apparently after the disc herniates there is a period of acute pain that only lasts for a few days. For those of you with herniated discs, do you know the exact minute your injury occured? I also read that some people are unaware that they have disc problems until they are discovered by mistake. I find that hard to believe!! All I know is that my situation is differnt that what I have read it should be. My pain isn't going down, if anything it is getting worse. I have pain in my arm, but the absolute worse pain is in my neck and shoulder blades. I am so sore in the morning that it hurts to move, and at times it feels like I am being stabbed in the back. This sucks.
  • I've had some herniations when I knew the exact moment of injury and others that sort of snuck up on me. I don't think it matters much in the long term. I ended up getting them all fixed surgically. One thing I wanted to mention: my doc told that if you have a great deal of neck pain then a fusion is probably your only option surgically (or ADR). My latest was a foraminotomy and because I had very little neck pain he thinks we won't have destabilized the area too much. Apparently with a lot of neck pain it indicates more instability at the location of the herniation. I had only 5% of my pain in the neck this time. The rest of the pain was in my upper arm, under my shoulder blade and in my pinky. I agree with above posts about seeing a Neuro or Ortho. It sounds like it's time. Best of luck.

  • I would skip the ortho and go straight to the neuro. If you have tried the conservative approach, and you are still in this much pain, you MAY be a surgery candidate. In my case it didn't help all of the pain, but I have a lot of other problems contributing. If you are otherwise healthy, I think you would be very likely to experience the best outcome possible. I would do mine over in a minute. Good luck, and let us know how you are doing.

  • I suffered for 2o years. If there is anyway for you to go to Jackson Memeorial hospital in Miami and see a neurosurgeon by the name of DR. Wang go. you will not be sorry. If he can help he will and if it is not surgical he will guide you. I am starting a site just for people like you who suffer and are to often mis-diagnoised. I went from being non surgical to almost paralyzed. Do not stop looking fo answers.
  • I went to 3 orthos and 1 neuro, all orthos said surgery (I knew they would) the neuro said I was old! You need to find a "Doctor" you feel comfortable with and that has a good reputation in your area. I have had neck problems for 20+ years so I new "Mr. Flashy" (neuro) was wrong when he said I was just old. Actually I was kind of surprised he didnt do the surgery, he could have bought some more flashy jewelry or a new car for what he would have charged for the surgery! Sorry....
  • carly is you disc compressing your spinal cord? do you already have arhtritis in that area? if its involving your arm then there is some nerve irritation there by the disc or a bone spur. Did you look at the report? some doctors don't tell you the whole picture. Some disc can reabsorb but if the herniation is that large then i really doubt that it will and you should probably by looking for a surgeon to discuss your options.He may say it not operable but at least you'll have a surgeons opinion and may feel better about what your doing. Most surgeons will have you try everything that you already have though. good luck. I went right to the neuro.
  • HI Carly, I am sorry to hear you are in so much pain. I have experience with conservative treatments, but no surgery, yet. I have done PT, chiro with decompression traction, ESI's, pain management, massage therapy, etc. The decompression felt great when I was on the table. It gave me a really nice stretch. So, no, it wasn't painful for me, actually sort of pleasant. But I went for 2 months or so and at the end of that time, I had no lasting benefit. The ESI's did not help me, either.

    I don't understand why your dr does not want to treat your pain. They always like to write tramadol, rather than the narcotic pain meds. But sometimes, it is just not enough. You need to get with him and explain that with that much pain, you are not functional to work or take care of your family. Also pain and lack of sleep can make you physically sick, and very cranky, too! In the beginning, my drs (PCP, then later the PM dr) gave me a muscle relaxer to take at night. Then you can get at least a few hours sleep. If not, try sone tylenol PM at night. And I also supplement my tramadol with tylenol during the day. My drs have OK'd this.

    Good luck with the decompression, if you decide to go that route. You could try it, but still line up an appt with a neuro or ortho surgeon for your second opinion. I sure wish you the best. And keep us posted. Hugs, Marti
  • Carly
    I had an ACDF with plating in Nov. 07. I have had a hard time with the fusing part but I would also suggest going to a neuro. I live in Tempe and went to Barrows in Phx. If you would like to talk to me please PM me and I would be happy to talk about my doctor and share my experience with you. One of the docs in the practice where I went at Barrows, was the surgeon that operated on Jessica Lynch. He was flown to the Military Hospital to do her surgery. Thats how good he is. She walks today because of him. I have been thru all of the pt, injections, meds etc before I had my surgery. I had cord decompression which had begun to affect my bladder. The pain was horrible and so is the long process that we have to go thru to get better. I have been very slow fusing (only 30% in 6 months) but thats not my neuros fault. I also have a great PM doctor if you need one. He just did 2 facet injections in the last month and they are helping. Well my message is all over the place cuz I'm tired but if you need to vent or talk please pm me and let me know. I would be glad to share. Cary
  • Tammy - my MRI says the herination is effacing the cord, looking at the films it looks like the herniation is barely touching the cord. Definately not denting it or anything. I do have arm symptons, but they are very mild. MY EMG came back negative for nerve damage but I understand it is not always accurate. My phsyiatrist says my body will gradually reaborb the herniation (over 2 years) and I will be left with arthritis in that area. My biggest complaint is the neck and upper back pain. It is horrible.
  • The tramadol is ok, but definately not all the time. I have muscle relaxers too, Zanaflex. The most effective muscle relaxer I have tried is Soma, but my old PM said it is getting popular with addicts so he didn't want to perscribe it. :( I know narcotics are a no-no for long term but I am upset how neckies are treated differently that lumbar pain patients. It seems doctors are more willing to provide relief for low back pain that neck pain. PAIN IS PAIN!!!!!!!! If I can't live my life the way I want to because of pain I think I should be allowed relief. After all, wasn't that what pain meds were invente for??? Damn addicts.
  • with my physiatrist for tomorrow to discuss my medication. I would like to be able to take more than 1 hyrocodone a day!! Wish me luck, I think I am going to need it.

    Thanks guys for your support!!
  • I had L4-L5-S1 fused in 1989 and lost feeling in the outside of my left calf and other areas, years later had more neuro issues EMG was negative. Went to a different doc and the neurologist did the EMG and guess what, the nerve damage on my legs showed up! I asked her how I could have no feeling on parts of leg and it be normal, "depends on who does it". What she did different was start at the spine and go outward, every other EMG they had just tested the mucles on my legs/arms.
    Decompression is traction and there are some machines that can be used (look to spend about $100 per session, many sessions as insurance does not cover). I have read mixed opinions, you might want to post on that subject.
  • She tested both arms and neck during my EMG. It only showed muscle spasms. She is a relatively young doctor (late 30's I would guess) so I assume she rec'd the latest and greatest training. I can uderstand how each doc might do things differently. I have heard that a discogram is the only way to truely tell how damaged a nerve or disc is. Painful test, from what I understand.
  • Hurts like hell, but they help with that after...I woke up from mine and burst into tears...But I have heard some far more pleasant stories and in all honesty am glad I took the test...I'd been yelling for 3 years that something was WRONG and I hurt all the time but it wasn't until the discogram that we found out that I was right and there was a bigger problem than I had realized.

    They usually only do those before a surgery or something, I believe, but what do I know, I'm not Dr.? But it might help them get a clearer view.
  • dilaurodilauro ConnecticutPosts: 9,842
    Hi Carly, you sure have been going through a rough time recently, sorry ti hear about this.
    It is so frustrating when you have a bunch of tests, some come back positive, some negative and then you get shuffled around to doctors and one gives you nothing more than candy to help manage your pain.

    There has been so much of this on the boards here I am totally amazed at home Pain Management and Psychiatrist work. Here, my Psychiatrist IS my Pain Management doctor and has total control of my condition. Emphasis is placed on identifying what the underlying problem is.. Without getting to that point, its difficult to put together the correct action plans. Many times, its not the medications that is going to make the difference but some form of treatment. Each case is so unique, it would be doing an injustice to say what those treatments could be.

    The role of a Psychiatrist is to use all medical resources at their disposal to figure out whats wrong. If existing tests do not indicate one form of treatment over another, than more tests should be done. I doubt there are people with spinal problems that after having all possible diagnostic tests still do NOT know what is the root problem.

    Problem is , this doesnt happen overnight, so meanwhile you are suffering. Here again is where the Psychiatrist should be putting together a medication makeup that will at least manage and control your pain.

    Good luck and I hope they do get to the bottom of your problems and find ways in providing you with some relief.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Your posts are always so supportive, and this one is no excpetion! Actually, I made the decision today to fire my phyisatrist. I have seen her 2x now, the last time when she performed the EMG she said she wanted me to start going to decompression therapy. She scribbled the names of two PT offices who perform this. Well, I tried to find both of them on the Internet with no luck. Then I called her office to tell her I couldn't find them and nobody has called me back! Plus I feel like she doesn't take me seriously and I feel like she really doesn't care. Plus, each time I have seen her I have waited a LONG time.

    I did some research and found a pain clinic close by that does EVERYTHING on site - they don't send you anywhere else for treatment, they have a MRI, PT, Chico, decompression therapy, etc. all in one place. They manage everything - meds included. I am going to make an appointment with them today.

    I'll keep you guys posted... as always, thanks for caring!! :)
  • This article might shed some light on the difficulty of getting appropriate pain relief.
    Lots more on the internet.
  • Just wanted to chime in and say good luck with the pain clinic.I know its hard when you have pain and the doctor doesn't want to give what you need.Its very frustrating. I hope you find what you need there.
  • Thought I would give you guys an update on this as things are looking up. To make another long story short, I fired the phyiatrist my PM doc referred me to b/c I didn't feel like she really cared, she never did the things she said she would do, she provided crappy pain relief and so on.

    I made an appt with my PM to let him know what was going on. I don't think doctors like to hear other doctors bashed (especially drs they referred you too!) but I really wanted him to understand where I was coming from. So I laid everything out for him and told him the entire story. He was SO kind and SO sympathetic that I wanted to jump over the table and hug him! He actually said that he has gotten complaints before about that particular doctor before! He said that was why he didn't refer me to her first - the physiatrist he wanted me to see orginally had a 2 month wait so his office gave me a list of other physiatrists in the area and she (lame dr) was on that list. He said that he completely understood where I was coming from and didn't want me to see her anymore. Hallejulah!

    He reviewed the reports she had sent over and asked how the Ultram was working. It was funny b/c the say he said "ultram" I could tell that he didn't think much of it! I told him that it wasn't cutting it. He then wrote me a script for the percoset that he had been perscribing for me, 90 pills. I never cancelled the appt I made with the physiatrist he wanted me to see in the beginning, that appt is 8/11. He wants me to keep that appt and see her, he really feels strongly that she can help. I feel so happy that he believed me and that he took me seriously!

    I am leaving on vacation to Alaska on the 30th and was really worried how my body would hold up without proper pain relief.
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