Hello and Welcome to our Pain Management Community. I am so very sorry to hear about your painful condition. I can relate.
Although I am older than you I am having some "insane" neck, shoulder and deltoid pain. My MRI reveals tumors on the nerve sheaths of my cervical spine and several areas of over bony growth. Nothing and I mean nothing takes the pain away, although the most effective drug is Lyrica. Have you discussed that with your physician?
Have you had a recent MRI? There may be more changes and you need to determine if things have changed. If your current physician is not open to repeating an MRI find one that is.
Remember physicians work for us - we hire them and pay them dearly. In rrality they are no different than a plumber. If you hired a plumber to fit a leak and when he was done with his work and had collected he fee you strill had a leak what would you do? I hope your answer is fire him. So if your physician is not doing the job you hired him to so you need to fire him too.
You're too young to suffer the rest of your life. Find the cause of your pain and have it taken care of while you[re still young. It's not unusual for the disc to fail above or below the surgery - as puts more demands on the healthy discs. Truly you need a repeat MRI.
Please keep us updated - and feel free to ask additional questions. I'll look forward ti hearing from you again soon. I wish you the very best.
AntiSingleCoil, welcome to the Pain Forum.
I too showed early signs of DDD in my 20s. Fortunately, physicians at that time were not afraid to treat pain with effective pain medication.
Your surgical consult was correct, but you received some misinformation.
First of all, any surgery is not characterized as "minimally invasive." Perhaps your surgeon was explaining the worse of two evils.
Surgery should always be a treatment of last resort, only after all other conservative means have been exhausted.
This is a quote from one of the best orthopedic surgeons in my area, and is wisdom for back patients like us.
Surgery begins a cascade of surgery, as one disc fails and is removed, neighboring discs take on the work and they too fail. We've had posters here reporting 3, 4, or more cervical surgeries, and they're stillin misery.
There's a name for this condition -- failed back syndrome.
It makes it sound like it's your fault, but failed back syndrome actually means failed back surgery syndrome.
So keep your surgical options open, as a last resort.
Not knowing the extent of your herniation, it is difficult to offer you accurate advice on how to follow up.
One suggestion -- see a second or even third surgeon.
When I was around 30-35, I had a round of surgical consults for my neck. The first two guys were anxious about operating. The third guy explained the concept of surgical cascade, and also described what life would be like after surgery. He concluded, "if I were you at this young age, I'd avoid surgery for as long as possible as long as you can fight pain with medication. Wait until you are well into your 60s before subjecting yourself it this."
I am now "well into my 60s" and I've still avoided surgery.
I'm going to suggest that you have another consult with a board certified pain and spine doctor. These specialists are licensed physicians, with advanced training in anesthesiology and hold a diplomate from the American Board of Pain Management (DABPM). The understand the disease called chronic pain (which you are perhaps too young to have developed), treatment of pain with opioid analgesics and other medications, interventional techniques like injections and nerve removal, and other skills.
One technique for reducing disc herniation is intrathecal steroidal injection. New, disc healing procedures, like platelet rich plasma therapy, and intradiscal injection of hematopoietic stem cells are both up and coming therapies for early onset disc disease, like yours.
You can find these doctors in private practice (use the DABPM as a sign), or in university teaching hospitals, specifically in the interventional pain management clinic.
Now, let me tell you how to pick a pain doc-- there are a few types. Some are trained in rehab -- they believe exercise cures all, and are there to help heal you. This is a good idea when one has the ability to be healed. Since you're young, you fit into this category, but you may not be ready for this specialty.
The second type we call a "shot jock." These can be neurosurgeons, osteopathic surgeons, pain docs,or even internists with special training.
Shot jocks will continue to inject you, 6, 7, 10, 20 times whether or not you receive any benefit. Some use injections as the carrot on a stick to treat you medically. No shots, no meds. Yet patients complain of increased pain, no doubt from the inflammation caused by monthly injections.
Injections can help, but the general thinking is that if there's no pain relief after three injections, the therapy is ineffective and should be discontinued.
Then there's the decent, compassionate pain doctor, experienced and skilled in pain management through all treatment options at his or her disposal.
So in your search, ask questions. Ask about a doctor's injection practices (say you'd been to a doctor who injected you a dozen times without any relief from pain, and you don't want another doctor who doesn't listen.) Ask about their training and experience. And finally, ask about their prescribing practices. Do they prescribe pain medications. Sometimes you can discover this from their website -- look for a controlled substance agreement.
Another way to recognize some docs who will prescribe for pain is through the propublica.com (or org) website. They have a section on medicare billing. If a doctor is a medicare provider, you can search their prescribing habits.
All of this does cost and arm and a leg. Welcome to the world of chronic illness. A fellow I know says that "chronic pain patients are exhausted physically, emotionally, and financially."
One last tip -- the more you know about your condition (DDD, herniated disc, possible central stenosis), and the treatment options, some of which I mentioned above, the better care you will receive. Its a learning process, and its time for you to go to school.
Start with sites like spineuniverse.com or spine-health.com (which has active back and spine forums). They have informational sections all about spines and their diseases.
If surgery is right for you (and sometimes it is), visit the sites of Dr. William Dillin in southern california (www.drdillin.com) and Dr. Donald Corenman in Vail, Co. You'll have to look up his website as I don't have it memorized.
They both have excellent informational websites about spine surgery for all conditions, with images and animations.
Youtube also has a wide variety of videos showing some of these procedures. When you've learned the names of the procedures (like anterior cervical discectomy and fusion or ACDF), you can find a video of this procedure.
You are always welcome back here with your questions and concerns.
Best wishes and get to work. You've got a lot of learning to do.
Thank you both for your help, sorry for the delayed response, but I did read it when it was posted.
A friend of mine in her 50's had unbearable back pain to the point where she could not get out of bed. She had 4-5 cortisone shots that didn't seem to help for long. She then tried a new doctor who did the shot in a different place and she's been pain-free like it never happen for over 3 years. She's going to give me the name of the doctor, maybe I'll try it. On a side note, I opted for the surgery because I was told be a few different doctors that no treatment would be anything more than temporary at best while the nerve was still compressed. The surgeon said the nerve was inflamed and bright red - one of the worst he had ever seen. Now that it's relieved, I suppose I have a better chance at something else working. I don't per say regret it, but I was hoping the surgery would be most of the result I wanted, and anything additional would get me close to 100%.
I appreciate the time and care put into the responses, good to know others are out there. Admittedly, this condition has greatly added to a pre-existing hereditary depression. On top of feeling awkward around others, it hinders my level of physical activity. I used to body build and loved it, but now 15 minutes in the gym starts making it more painful. It has also made me question my morals in life, wondering why this had to happen to me, especially so young. It just feels cruel that as soon as I am in a position to enjoy life with a career and financial backing, I can't. Childhood friends have planned trips and I've had to refuse because I know that I'll be a ball and chain when I have to go back to the hotel to lay down at 9:00 pm.
I will look at the other sites and get second opinions, as well as get another MRI as suggested, feel free to add anything at all.
I am glad you are going to check out options - as well as obtain the name of another physician from your friend.
I've seen n heard about similar situations - where a person loved their doc and saw them for a long time but never seemed to have great results or improvement. Then the person saw another physician - for whatever reason and had amazing results. We can hope that will happen in your case.
I don't believe that "moral" had anything to do with your medical problems. Indeed bad things happen to good ppl - for no reason. In fact there's a great old book with that title. I highly recommend it. It's called, "When Bad Things Happen to Good People."
Hang in there our friend in pain. Keep in touch and take care - and try to smile.
A bad case of nerve or spine compression requires decompression surgery -- there's just no avoiding it. You made the right decision.
I just noticed your name -- does it come from a preference for double-coil pickups?
Thank you Tuckamore! I'll have to check out that book too! There's this little part of me that feels like there's just one thing out there that will help, but I just have to find it. Truthfully I don't know how I'll handle it if nothing ever changes. I am hesitant to even think about starting a family because I just won't have the energy to keep up a long-term marriage and raise kids at this point. Part of me things the only solution to life is to find a girl that also has pain and fatigue and just exchange massages all day! Everything else in life is good *knock on wood!* but this seems to be my big Achilles heel. I hope you find a way to help your pain as well and will certainly post if I find a solution, or anything close it!
Philnoir, thanks for the reassurance on the surgery decision, I thought it made sense but it's good to hear some validity from someone non-biased. And yes! The name comes from the days when I first started guitar and only wanted to play metal, which required humbucker/double-coils. The noise from distortion on the amp drove me crazy and I installed humbuckers and vowed to be "Anti-single coil." Of course, years later, I learned other styles of music and learned to appreciate them, but granted no one else ever seems to pick this username, I just stuck with it! Nice observation, people usually look at me like I have two heads when I give them my username, e-mail, etc., but little do they know I can't have two heads if my neck can't even handle one ;D
My friend, that's why we (I) always insist on second or third opinions in matters of surgery.
Now, I am not a qualified physician -- I can't offer a medical opinion. But I've been in pain long enough from skeletal pathology to know the ropes, and I give friendly advice (sometimes not so friendly.)
And I remember a time when I worked with a Les Paul Standard around my neck (no wonder I have back problems.) I used to love that sound, but can't take the weight. That's why Clapton plays a Strat -- the Gibson is a pain in the neck!
There's all kinds of guitar music, certainly, from Julian Bream's brilliant Bach Chaconne to Mundell Lowe's great jazz guitar on this album:
Ain't the internet great for gathering information.
Fender makes a great Strats with double-wound pickups. They aren't a 1957 Gibson Humbucker, but they sound pretty good, and with a couple of effects pedals, you can sound like Carlos Santana (if you got the chops.)
Fare they well, man.
I do hope you'll check out that book. It was a life changer for me - many of the thoughts and beliefs I read in the book I carry with me today. I was given to me by a Social Worker in our Medical Team. He had been a Protestant Minister - the book was written by a Rabbi. No it's not a religious writing - maybe a bit maybe a bit spiritual at times but no preaching, etc. It talks about how to deal with life when bad things happen to good ppl.
Sorry I didn't pick up on the screen name. I am far from and expert in guitar - though I have had the pleasure of hearing in person the late BB King - and on the opposite end of my musical experience, my favorite, Leo Kottke. What a Awesome treat - in the front row.
Plz don't dismiss love, life long love from your future. There is someone out there for you - chronic pain or not. But first things first - get your pain under better control. Don't give up. We've all struggled with some huge challenges that often accompany Chronic Pain - some of us are still surmounting obstacles.
Hang in there. We're here if we can help - and we hope to hear from you often.
Peace My Friend in Pain.
You never mentioned ice packs. Have you tried ice packs?
This is an interesting post. I am 34, male. I had some kind of neck pain on both the left/right side going down to my right shoulder and into my lower bicep since I was 14!
I have been to so many doctors it is dizzying. Tried every method possible. Shoulder surgery, cortizone injections, acupuncture, structural integration, chiropractics, ibuprofen regiments and lots of PT. Pain levels ebb and flow but never go away.
Right now I am taking about 1200mg of Neurontin a day, which is a pretty low symptom nerve pain reducer but it does not do much.
My recent MRI shows disc herniation around C3 and C4, but it is too minor to do any surgery on it and my Neurologist referred me to a PT specialist and suggests I continue Neurontin.
The OP speaks to me as I am constantly cracking and stretching my neck with no avail. It is a sad existence. Sometimes I feel like my neck/shoulders/arm all burn at once and it is hard to escape the pain that seems to come from the inside.
Quite a desperate situation indeed.
Thank you so much for the support everyone!
Les Pauls are not for those in chronic pain! But even if I wasn't in this situation, I still prefer my Strats :) Luckily *big knock on wood* the pain hasn't affect my music, and I pray it stays that way no matter what happens.
Tuckamore, I will check out the book, thank you for the tip. I was almost about to see BB and decided a show on a late Sunday night was too difficult to make and I would catch him next time...talk about life regrets!
Rkd80, I'd never thought I'd say that I'm sorry to hear there's someone else out there just like me! You have no idea how much I wish I could help, but unfortunately you and I are in the same lost boat. I don't have any pain in my arm, just some slight numbness and minor fatigue at times, but overall it's negligible compared to my neck. Quite amazing how similar our issues are, although I admit it's disheartening to hear that you've been dealing with it for 20 years. The doctors gave me Gabapentin (also a nerve suppression med), a muscle relaxer, and oxycodone for a brief period. The Gabapentin seemed to do nothing but keep me up at night. The muscle relaxer is nice in the sense it knocks me out and I don't wake up is extremely bad pain (although still painful!).
At this point, my pain isn't on the nerve itself per say, but just all the muscles, joints, and tendons around it that are constantly tight, and cracking it brings strong relief for about 5 minutes, slight reduction for maybe an hour at most. But it only relieves that one area, other areas in that 5-inch area still hurt.
I'm not sure if this applies to you, but my neck seems to have a mind of its own. The pain I get comes and goes in different severity, but also the sensation, location, and type of pain changes by the week/month. You're definitely right about it being a said existence, and I'm sure you are just as concerned about me about potentially facing this the rest of your life.
As I'm sure you (and all of us) can relate to, it's hard to carry through life with this because very few people understand, and they think you're just a freak in some regards. I have to constantly concentrate on not moving my neck in certain settings to avoid bad impressions. It's an overwhelming burden to carry. I swear it also affects my thinking processes and overall ability to function cognitively.
I can't make a recommendation as far as surgeries, and from what I know, they nerve may be so damaged at this point that surgery my be like releasing a prisoner from jail that's already dead.
I will absolutely keep everyone posted and hopefully we can find a solution for a better life sometime soon. Again, thank you all for the support, and as always still open to any comments, suggestions, or tips!
Greenleaf, apologize I didn't address your question! I have tried ice-packs and while they do provide some temporary relief, it doesn't seem to stick. I iced it very consistently after my surgery and continued to for some time, but it didn't seem to help much. Also, you can only ice it for 10-20 minutes at a time, and of course can't walk around with one strapped to my neck.
All the things you mention about chronic pain we get. Unless a person has chronic pain they just don't understand. I think it's beyond their comprehension.
Keep the music going - it'll help you keep your sanity. :o)
I play a bit of piano - I get lost in the music - it can take me away for at least a little while. I'll bet you find the same!
This comment of yours:
"my neck seems to have a mind of its own. The pain I get comes and goes in different severity, but also the sensation, location, and type of pain changes by the week/month. "
is typical of the disease called chronic pain syndrome.
Sometimes you find that the pain even changes sides, or jumps a level or two, meaning that if you have a disorder effecting the C5/C6 nerve root, you may have temporary pain symptoms that are typical with disease in a different level of the spine.
Theorists believe that these phenomena are due to changes in the spinal cord called neuroplasticity, and are a sign of central pain, ie, chronic pain syndrome.
This is when constant pain changes the nervous tissue so that your disease has now spread to the central nervous system (from the peripheral nervous system.)
I experienced this strangeness for many years when my cervical spine disease was active. A year or two of severe pain on one side of the spine, followed by pain on the other side -- for no apparent reason.
Well, the men who torture little white mice and then cut open their spines to look at their spinal cords under the microscope have discovered changes in the first synapse in the outer layers of the spinal cord, where the peripheral nervous system joins the central nervous system.
If you search for neuroplasticity and central pain, you'll see the research in this area.
Thanks Tuck, yes the music definitely helps, even a minute of getting your mind of it is worth a million, keep it up too!
"Dear Humbucker" :) I wasn't sure if such changes were so common, but I suppose it is! I very rarely get pain on the other side, but when I do, it's like worrying about a papercut when you're limb just got shot lol. Well I hope some day the little white mice no longer die in vain and they find a solution!
So much to learn...when I first was told my disk was bulging out, I said, "Well, can you push it back?!" If only things were that simple...
Yes, don't look to surgery to treat pain.
Surgery causes more pain, usually. Only, with exception, does it treat pain. In spite of the stories you hear from the "converted". I've been hearing them all my life.
It's better to understand your disease. Then, with your doctor's help, you can make the proper decisions.
But with surgery, "just push it back", never trust one doctor. In my experience you have to speak with at least 4 surgeons to get the truth, and you have to ask difficult questions.
When all you have is a hammer, everything looks like a nail.
What do you think of that opening chord to "A Hard Day's Night" -- brilliant?
Have a look at My Spine Solution. They have Great Dr.s and you can get a disc replacement.