I have a very interesting experience to share regarding the correct viewpoint, I think, that an MRI is only a part of the picture or package that determines treatment options. Brief personal review: 2006 cervical MRI shows stable herniation at C5-6 with mild flattening of the cord. 2009 MRI shows the same but EMG testing indicates nerve impingement. Also, symptoms are growing to include spasms, neck pain, arm pain, weakness and so on. Symptoms are getting worse. My PM clinic doc has no doubt it's time for a surgical consult. I resisted. He stressed, as have members of this board, that it's the whole picture that adds up to surgery. So, I am in process of getting surgical opinions and I call Dr. So and So's ofc today (spine specialist, highly regarded) to ask the basic questions about getting a referral. And I'm told, "All you need to bring is a CD of your recent MRI, he'll decide on the basis of that....no, you don't need to send or bring the EMG report. If he wants anything else based on the MRI, he'll ask for it."
So, here I sit wondering why this keeps happening. Do I run from all these docs. These are highly trained spine specialist. Despite what I have experienced in the OR, and despite what so many patients and other medical people advise, the reality is...these surgeons only care about the MRI. I have 2 other consults lined up. I can't say for sure what they will tell me. But so far, based on what I've been told, their opinions will be based on the MRI. One doc will only agree to book the appt.....based on her review of ...the MRI. Truth to tell, I find it all quite frustrating and discouraging. SQ
Hi Suzy-Q..how are you today...confused? It really is confusing but I think I can figure this out for you.
Your MRI showed that you had nerve impingement and the EMG confirmed that. But what is more important to the spine surgeon is the flattening of the cord and what symptoms that is producing. Yes, they will fix the impinged nerves if they are so badly impinged and they are in danger of permanent damage but cord damage is silent and shows up with reflex problems and other signs. I bet your pain management docs have noticed a change in your reflexes as well and other signs the cord impingement is getting worse. That is why they think surgery is warranted.
The docs will decide based on the MRI and the exam and the recommendation of you pain management docs who will probably be sending a referral report with their findings. It will have the EMG report in it.
But I know my doc used the MRI and my exam to decide if it was time to operate or not based on the amount of cord impingement...they take that very seriously. Nerve impingement was secondary.....very secondary.
So the confusion is really about nerve versus cord...you need to know what is happening to both, not just one. Why? Because you have a risk of coming out of surgery paralyzed so if you don't really need it, they don't do it. These docs pay enough in mal-practice insurance and they don't want to do anything to make it higher.
Does that help? What else can I try to answer or research for you?
That does help - a lot! Thanks so much. Nerve versus cord. I begin to get it. And my PM doc did say the pain I have in my neck and arms is secondary - which sort of upset me, at the time. I spoke with my PCP today and told her of my frustration. She is always very patient and accepting of me being fully engaged in my health care decisions. She suggested I go see this guy and base my decision on that and not get too tied up in what the front office says. What she told me supports your advice completely, "He's going to have a report from me and your PM along with test results so just focus on what he says and how you feel about him." Good advice.
And you've made it crystal clear why this surgery is to be avoided until the risk of waiting outweighs the risks of complications. Well done.
My referral to Dr. So and So is on its way. They are booking into December for consults. I've got one other thing I'd love opinions about. I also have a bad situation in my left SI joint. Due to lumbar fusions, the joint is degenerating and very painful. Plan is to burn all the nerves in the joint (ablations in 2-4 procedures) followed by intensive PT to rehab the joint once the pain is gone or reduced.
PM doc will do all the SI joint procedures and I'll use a local PT (with SI experience). Here's the thing-he says I can be doing this SI treatment plan and have the ACDF, too. Concurrently. How does that strike you? I guess I don't know that I can reasonably put either off much longer. Both situations are a problem for me at work. Both have been going on for years and both are really painful.
Well, I can and should look on the brighter side. I've started taking Norco in the afternoon and at bedtime. It is a huge help. I'm still adjusting so I'm very groggy but I'll likely get over that in a few days. Docs feel I have a good chance to resolve both problems even if not too easily. But that is also reason to be grateful. And I am. I'll do a little knitting tonight to celebrate that. You're very generous,Jenny, and I am grateful for you. SQ
I've never had an ACDF so I'm not qualified to say just how easily you'll be able to do both at one time but from what I gather, it's a 1 day in the hospital surgery(if that) and the recovery is quick and relatively painless in comparison to posterior surgery(which is what I had). So I see no reason why you should be able to have both going on at the same time....get it all over with!
I know it's hard to think that all that pain is secondary but the cord problems really are the biggie. If the blood supply to your spinal cord is compromised in any way, you are looking at paralysis from that level down. At C6, that's waist down including hands. At C5, that's chest down. At C4, that's neck down including breathing. And if your cord is compressed, that could happen with something as simple as whiplash from a fender bender or even looking up at a shooting star. I needed gall bladder surgery and was told no way, not until they fixed my neck as even being intubated for surgery could paralyze me. So although you don't want to rush into anything as it could also happen in surgery, you also don't want to wait and take chances of it happening from a simple accident or wrong movement.
You can decrease the chances of it happening during surgery by having the best spine surgeon you can get. And you can decrease the chances of having it happen by accident by being aware of it and watching your movements and wearing a soft collar in the car.
The nice thing, they will fix the problems with the spinal nerves when they fix the cord compression.
So remember, there are 2 areas to be concerned about...the spinal nerves and the spinal cord, the cord being the big one and the very painful nerve compression, being secondary. And a 2 month wait for an appointment is not unusual at all. There aren't that many spine docs. I have to make my regular check-up appointments 6 months in advance with my doc...as a new patient, you need a referral and then there's a 4 month wait unless he thinks you need to be seen faster than that....I got in within 3 weeks and was in surgery less than 4 weeks later...guess I needed my neck fixed
Suzy, From the little Ive heard about the procedure you've mentioned there should be no reason you cant have both done. Is the procedure by chance called a Rhizotomy? Ive heard from other patients at my PMs its been a huge success for many & not a complicated procedure but one that has to be repeated as the nerves grow back, if we are talking about the same thing here & I believe we may be.
As far as your question about the MRIs, yes doctors tend to go off priamarly that one test, but also they receive as mentioned by Jenny any other info from you PM & consider all other methods tried before surgery. My surgeon went off the MRI & all other methods used to try to obtain relief, as he felt I exhausted enough methods & took into consideration my symptoms. I was getting worse with no relief. Indeed other things were found during my surgery not seen in my MRIs & the same was true for my shoulder surgery, discoveries made not found on that MRI, so Im not a huge fan of using MRIs alone.
I think you going about this best way you can, seeking other opinions. The one thing I wish I would have done. I needed the surgery without a doubt but I would have liked to speak to other surgeons. I was just to exhausted & desperate to care at the time. I wish you the best of luck, Sammy
Jenny and Sammy - thank you both so much for the support and wisdom. As is probable quite evident, I'm struggling. It's been a hard few years and I've had so many setbacks and complications. Truth to tell, it's taken a toll and my confidence in providers and even in my own judgement is at a low ebb.
OK - I've made a few decisions. I've decided to nix one of the 3 consults - for now. Why? Because my #1 consult (New England Baptist neurosugeon), the surgeon who did my revision lumbar fusion has reviewed my tests, emailed me his initial thoughts, and said it's time for me to come back down to talk surgery. I'll have Xrays done that day (the first ever for my cervical spine, I think). This doc is far and away my first pick. He is very surgically conservative so I know much simply from the request to see me. He has carefully and completely gone over the latest test results. And what he says would interest you, I think.
He notes the abnormal EMG - though not dramatically abnormal it documents nerve impingement at C-6 and correlates perfectly with my MRI. EMG is not relied upon, he says, to quantify severity but it can support a diagnosis. Mine does that and it is always helpful when it does.
My MRU - again, is not strikingly troubling. The disc/osteophyte complex at C5-6 indents the cord and specifically narrows the passage for the nerve as it exists the spine. The MRI does not look terrible but "it is what it is." He tells me if I were a new patient presenting with this MRI and EMG, he would advise me to avoid surgery (music to my ears) but given the years of pain, he says "considering surgery at this point is certainly not excessive." Gotta love that kind of careful, don't ya? He notes the tests are not the dramatic problem my lumbar spine was but an ACDF is also a lesser surgery and recovery. But surgery all the same and results can't be guaranteed, he cautions.
And I admire this doc tremendously exactly because he is thoughtful and methodical, with no hint of a snake charmer or car salesman about him. But he's in Boston and that is a real problem. Every apt is a day out of work for me. He is busy, busy. Busy practice and 3 tiny kids. But once you have him, he's all yours and nothing and no one can rush him. No PA, no middlemen.
I'm still going to get opinion #2 (top pick of of PM doc and closer to home). But for right now, i'm stopping there. Between the SI ablations (yes, I believe it is rhizotemy) and this surgery stuff, I'm full up. If these two docs differ dramatically, I'll rethink things.
But this is the biggest piece for me - some small part of me has been holding back thinking it was possible my Boston guy would tell me I should not consider surgery. He will leave it up to me to make the decision to opt for surgery after I've heard the pros and cons-the risks and benefits. But his telling me that he'd like to see me is the last nail in the coffin. I'm done. Resistance is futile. He's not offering me more epis or any other treatment. It's not complicated at all, really. If I am unwilling to accept ongoing pain and increasing limitations, I must opt for surgery and the chance for improvement. No guarantees. Risks, yes. But a good chance for improvement, too.
For my past 3 big surgeries, I insisted on many months of pre-op time. I just couldn't move quickly. I had to visit the hospital, research every last detail, and organized my life and mind entirely around the surgery and recovery. I thought all the effort would make things easier. And I can't say it did. Regardless, I'm not doing it this time. I can't. I'm out of steam. This time I'm going to make the best decisions I can on surgery and surgeon. And then I want this thing done. ASAP. Heck, hubby and I are practically First Responders! We'll roll out the post-op gear and switch into recovery mode before you can say Bob's your uncle!!! Thanks for reading this book. SQ
I remember my surgeon saying youve tried this & that & so on... Without success, the choice is yours. Its not going to get better on its own & there is no promise with surgery.
I sat & thought about my quality of life & knew it could get worse & it did. I opted to wait till after Christmas, which put my surgery off just shy of a month. I continued to work & get ready for the holiday. If I would have had the surgery when the surgeon advised I would have saved myself the worst pain Ive ever experianced in my life.
I did not apply common sense which I knew there were injuries but just kept pushing, doing stupid physical things I should have avoided. Ended up being the worst christmas ever. I had surgery the day after but spent most of my time in ER & bed & so on...with very little relief.
Noone wants surgery but at times there is no choice. I was so bad that I begged for surgery but could not get in any sooner. The surgeon & my PM did not think my sudden onset of headaches were coming from my spine due to the MRI but indeed during surgery its was discovered in all probability they were. These hit me all at once while waiting for surgery & as long as I live I dont ever want to experiance that pain again.
In that short amount of time things had changed in there & other problems existed without evidence on the MRIs.
As far as EMGs I dont know of one doctor that thinks of it as a full proof test but as a possable diagnositic tool that is used in conjuction with other tests. If your EMG confirmed the same problematic area as the MRI that would be enough for me personally. Its actually a blessing when the 2 tests show the problems in the same area as its confirmation of the injured area.
Often the EMGs can be misleading. Ive had 2 & both showed something different, neither matching with my MRIs. Its like trying to put a puzzle together with the most important pieces missing. So your a step ahead already.
The only good thing to come from my waiting was I was so bad I was not one bit nervous & just wanted it over with.
I think its smart to proceed with one more opinion but if they are of the same I would not delay. I just dont see where delaying when the proof is sitting before your eyes is wise, giving my experiance.
I dont think anyone should rush off to surgery but if its something you know you will need better sooner or later. I honestly believe choosing the later could up the risks. Not to mention the stress while waiting.
Sounds like your a veteran when it comes to recovery so thats a big plus to. Im the opposite with the cervical problems starting first & the lumbar following. Not fun dealing with both. Im not a huge success story but I dont regret my fusion as I know it could & would have lead to worse without the fusion.
Good luck & please let us know how it goes with your appointments. Sammy
I really wanted to reply to a post you gave someone about endplate spondylosis, modic type II endplate changes, and Bilateral mild foaminal stenosis. I have an MRI that says I have all of those things. But the nurse practioner is convinced that I do not have the compression fracures that are even apparent to me on my x-rays. She also confirmed the compression fractures. Now she wants me to go to a pain specialist. I just want someone to tell me I am not crazy thinking it is a bit more then that. I have had degenerative disc for 19 yrs. I have never had anything like this happen after a fall. I want to go back to work but am afraid that my cooking and catering might pose a problem that can not be fixed in my back if I move the wrong way. PLEASE HELP ME!
Im so sorry, as I can hear the desperation in your post. You may get more opinions if you put a post up of your own. Give it a try.
I would go ahead with a pain specialist as a good one will continue investigating your condition & know how to deal with the complexity of spinal problems.
That is your NPs opinion another doctor may be of a different opinion & it cant hurt to see a good PM. Yes in your line of work you should be careful & thats another reason to get into a good doctor who knows how to deal with spinal problems.
If Ive learned anything at all from all of this its that we know our own bodies. Im sure your not crazy as even with all the testing out there it can be hard to determine every little thing going on in there with our bodies. I wish I would have had someone tell me to get into PM alot sooner then I did as my PM was the one doctor that listened & said no matter what the previous tests stated there was something going on with my spine & he was right.
Good luck & think about putting your own thread up. Sammy