Hi all -
Many thanks for this message board as I've been perusing around quite a bit trying to educate myself on recent MRI results and subsequent Neurosurgeon consults. I have two opposite Neurosurgeon opinions on whether surgery is necessary or not; Neurologist is adamant that surgery is needed. So, now I am trying to get another opinion and am wondering if
1.Others have had these opposite opinions, and if so, what did you do?
2.Any advice on specific questions to ask the next doc (going to another neurologist and another neurosurgeon soon) – will ask about laminoplasty, thanks Jennybyc
3.It seems as if the Neurologist is the one who makes the ‘diagnosis’ of the severity symptoms, while the Neurosurgeon evaluates the MRI results for surgical intervention, so maybe the better second opinion is one of a neurologist and not a neurosurgeon? Anyone else think this?
4.I read in one post “the idea is do the surgery before the cord shows signs of damage.” Regarding stenosis v. compression (jennybyc). So how do you know when the cord shows signs of damage? how does one determine where on a scale of 1-10 we are?
I don’t want to be driven to surgery by fear, but I also don’t want to put my head in the sand and say I don’t need surgery, so any insights would be appreciated!! I’ve read that the earlier the intervention is in the deterioration process, the better the prognosis… BUT the risk of having damage to other discs and having to go through it again is scary too. BUT the idea of walking around knowing this is could get worse or I could trip and fall and be in a bigger mess is scary, BUTBUTBUT – all the same “damned if I do, damned if I don’t” feelings I’ve seen expressed in other posts here, so I guess no need to reiterate them : ) and I'm terrified of surgery.
Sorry in advance for the lengthy bit below, but for those interested, here’s the history w MRI @ bottom:
My first visit to a neurologist (4/2012) was prompted by numbness in my feet that I had had for about a year, which I had thought was related to ski boots that had been too tight - My dermatologist told me to get to a neurologist because I am on medicine (enbrel) that could have a side effect of MS.
-Lumbar MRI ruled out lower back issues causing numbness in my feet.
-MS was ruled out by brain/cervical/thoracic MRI ("there are no signal abnormalities identified to suggest a demyelinating process such as MS, myelitis, myelomalacia or a cervical cord syrinx at any level. There is slight prominence of the central canal of the spinal cord... The cervicomedullary junction is normal. The cerebellar tonsils are in normal position.").
-BUT I was told by the Neurologist that I have pressure on my spinal cord and that it was not a matter of if, but when I would have to have surgery - he said it was like "a ticking time bomb" and it was likely an incidental finding not related to my feet. Also, if I ever have loss of bladder/bowel, I am to get myself to the emergency room ASAP. He referred me for a Neurosurgeon consult…
I saw the head of neurosurgery & spinal trauma surgery at John C Lincoln hospital (Neurosurgeon) in Phoenix (and I really like him) to whom I was referred by the Neurologist.
- fellowship & residency: Barrow Neuro institute/St Joe's med center - orthopedic surgery of the spine and neurological Surgery
- he recommends ACDF on C5-C6 and told me to stop going to the gym and restrict my lifestyle (no eliptical, etc) activities, not lifting things, no running, be careful etc.
-on a scale of 1-10, I am a 7-8 in terms of severity
-sooner is better than later as something could happen or the issue could progress to a point where damage is not reversible with surgery (eg loss of bladder/bowel) which scares the heck out of me!
At the urging of my mother, I went for a second opinion – Saw the head of Neurosurgery at Mayo Clinic in Scottsdale, AZ. To my great surprise, he said he believed that I do not need surgery as I am “asymptomatic”. He said many people walk around all the time with Cervical Spinal stenosis, it’s very common, but since I am not in pain, there is no reason for surgery. He had the MRIs, EMG & bloodwork and the notes from my Neurologist visits. The numbness in my feet is not related to my neck but was likely a result of occluded blood flow to some of the nerves in my feet by tightened ski boots that caused some nerve damage. He would NOT put me on any activity restrictions and that I should be able to go to the gym etc. He would NOT characterize me as a ticking time bomb, nor do I have a ruptured disc. According to him, there are no exercises or anything else I can do to mitigate the progression and at some point if warranted, I might need surgery, just not at this point. When asked why such a different opinion from the other Neurosurgeon, he said it’s a different approach and he respectfully disagrees… Mayo is much more conservative when it comes to surgery (as in don’t operate if not necessary I guess) and doesn’t believe that the risk is great enough of something happening from daily activities that would warrant a ‘preventive’ approach.
SO, went back to my neurologist Firday… he had the notes from the Mayo dr. and he completely disagrees with the Mayo (2nd opinion) Neurosurgeon’s opinion and proceeded to explain that
-Since pressure is on the front of the spinal cord, I will have no pain, but that it doesn’t mean there’s not a problem
-The symptoms that I currently have are hyperreflexia (?) and weakness in my upper body muscles associated with c5-6 cord compression
-He said it was “not a matter of if but when” I would have to have surgery. When I asked about ‘when is ‘when’’, he responded “yesterday”
-I further inquired about knowing how much compression there is or what % loss in strength that I was looking for some quantitative data (such as the mm compression figures I’ve seen on some of the other MRI postings etc), he said there’s no way of knowing or measuring that and it doesn’t even matter because I have symptoms and an MRI with cord compression – basically it sounds like he views it as very black and white – any symptoms of cord compression require surgery regardless whether there is pain or not.
-Asked about getting a myelogram to get an understanding of the degree compression and again he said it won’t matter what the myelogram would say because the fact that I have these symptoms means that surgery is needed
-Surgery will allow me to resume normal activities and I might regain the arm strength I’ve lost, but all surgery carries risk blablahblah.
For those interested here are the Cervical MRI results:
c4-c5: there is degenerative spondylosis with posterior disc-osteophyte complex effacing the ventral thecal sac without cord compression or central canal spinal stenosis. There is moderate bilateral neural foraminal stenosis due to bilateral uncovertebral spurring and facet hypertrophy.
c5-c6: there is a small right paracentral disc protrusion superimposed on posterior disc-osteophyte complex effacing the ventral thecal sac and resulting in moderate right-sided cord impingement and moderate central canal spinal stenosis. There is moderate left and marked right-sided neural foraminal stenosis due to asymmetric right sided uncovertebral spurring and facet hypertrophy
c6-c7: there is posterior disc-osteophyte complex eccentric to the left side effacing the ventral thecal sac and combining with the posterior ligamentum flavum thickening to result in mild central canal spinal stenosis. There is mild right and moderate left sided neural foraminal stenosis due to asymmetric left-sided uncovertebral spurring and facet hypertrophy.
Thanks for the quick reply Webdozer! and after digging through my neurologist's notes, it appears that I have my first questions for my next dr. visit with a different neurologist -
re: upper body weakness... I didn't think I had any until my june 22 revisit with the neurologist where he expressed his disagreement with the Mayo Neurosurgeon.
-In his april 25th notes he notes "on brief reexamination, there is full strength in the lower extramities. Knee Jerks are 3's, ankle jerks are 1-2's".
-In his May 25th notes, he wrote "there is no strength discrepancy from her perspective and there has not been on examination. Bowel/Bladder function are normal. Ambulation normal."
-During my June 22 visit, (unfortunately I do not have his write up from this visit) he went through some resistance excercises with me - pulling my fist into my shoulder while he provided resistance, rotating my forearm/wrist with a locked elbow while he resisted the movement, pushing my hands down while he pushed back, pushing my legs up while he pushed down, etc. I actually came to the conclusion of upper body weakness because I couldn't counteract his resistance on the bicep or rotation of the wrist/forearm, whereas I could on the hands, legs and feet. Now I am rethinking this as I don't recall having a difference between left or right ability to counteract - maybe a little weaker on the left side I'm thinking?? so maybe I am NOT weak, or just weak on both sides? I personally have not noticed any episodic-type weakness.. definitely something I need to get a better answer to.
re hyperreflexia - knee jerks 3's, ankle jerks 1-2's is all I have from my 4/25 visit which was prior to the Cervical MRI. but he did write "examination and workup has not disclosed a reason for foot parasthesias and with her increased reflexes I am suspecting a central process..I am ordering " a cervical/thoracic/brain MRI.
-On the May 25 write up he noted my 'increased reflexes' and that he was sending me for neurosurgeon consult "for consideration of intervention" and that he counseled me on "Cervical Stenosis, potential neurological symptons as a sequelae thereof". (this was the appointment when he told me I was a ticking time bomb and that it was a matter of when, not if, I will have to have surgery)
-During the June 22 consult, he showed me the hyperreflexes were about a difference in response of right vs. left - as in it's asymmetrical, but I don't remember exactly which side. I'm vaguely thinking that it was my left side that had a higher response. When he bangs the knees, my whole body startles. When he did the triceps response, they seemed to be the same. When he was doing it on my hands (resting on my knees relaxed) as he hit the tendon in my arm, it seemed like it was my left hand that sort of moved into a more 'clawlike' position (the first and middle fingers pulling into my thumb action)... BUT this is all from my memory. Unfortunately, I had forgotten my cell phone and thus didn't have the chance to record the appointment (rats, won't do that again).
What I do remember very clearly was that he said that Neurosurgeons are not the clinicians and don't know how to properly diagnose the symptoms. Which is why I am thinking I need a Neurologist second opinion on symptoms....
It all just seems so vague to me and the differences seem subtle (I'm a numbers person) and having read so many posts where there's measurements of the cord and I don't have that kind of info. AND two different highly qualified NS's have totally different opinions doesn't help me with a level of comfort to have or not have surgery....
Anyone else NOT have pain and gone through this? I've read so many post-op messages where there's pain left-over and/or several years later needing another level fused, or the fusion 'not-taking' and having chronic problems from that. scaredscaredscared.
I am currently scheduled for surgery July 9th, but am thinking about putting it off until I get some other input. I'm supposed to go tomorrow for the pre-op bloodwork, xray, ekg, etc and am thinking that I should cancel that today sometime....
I'm sure the neurologist did a pin test of your extremities. Do you remember one side being more sensitive than the other?
Test yourself. Sitting down, cross one leg over the other, then whack the upper leg just below the knee with the side of your hand. Keep doing this until you hit the sweet spot and you get a reflexive knee jerk. Then do the other side.
One side react considerably more than the other? Perhaps, did BOTH sides overreact?
LOL, now that my knees are whacked up... both sides seem to have a strong reaction, but I'm not sure what constitues strong... but at least I don't have the whole body jump that I get when the neurologist does it.
I managed to get an appt with a neurologist at Mayo clinic for July 31st, so I am going to postpone the currently scheduled July 9th surgery.
In my voracious reading, I've come across a number of times how important the diagnosis is and evaluation of the different reflex responses and strength/weakness evaluation - amount of response, symmetrical or not, amount of change in symptoms over time, etc. along with things like gait and balance. Since I don't have pain I'm thinking it's important to have a good solid evaluation of whether I do have symptoms and to what degree before going in for ACDF.
I'm just so scared of the surgery and potential after-effects on adjacent disks, so I guess to feel more comfortable with a 'go' decision I'd like less difference of professional opinion/diagnosis.
Neurologist did do a pin test, hot/cold and vibration for which he wrote "Pin ***** is diffusely normal in the feet. Vibration is mild to moderately impaired at both great toes." EMG was done and that was normal. All my blood tests were fine and my B12 was fine as well. The numbness in my feet is greater on the right than the left foot and is on the outside ~1/3rd of each foot, and on the outside of each big toe. Neurologist and 1st Neurosurgeon said they don't know what the foot numbness source is (lumbar MRI was negative) and could not say that it's related to my neck issue. Mayo Neurosurgeon said the foot numbness is NOT related to my lower back nor neck and is highly likely due to ski boots that were too tight cutting off blood flow and causing something like 'ischemic' nerve damage (numbness started almost immediately the night after skiing and has stayed pretty constant over the past year).
I am not really concerned at this point about the foot issue as it 'seems' to be unrelated to the neck, can't be treated/changed even with Surgery, is painless and given all 3 of their opinions. So, I've put the foot thing on the back burner and am focussing on the neck issue unless another doc feels it's relevant - I guess I will find out after that appointment July 31.
Anyone else have such differences in diagnosis or surgery recommendations?
Yours is an interesting case. Sixteen years ago, I had a "sore" right shoulder, was losing some dexterity in my right hand - if I went for a long walk - and had hyperreflexivity on one side. The neurologist, when he saw that, got me in for an MRI THAT AFTERNOON. He called the radiologist for the results and, when he heard them, had me drive to the hospital the next morning, pick up the radiologist's report myself, and drive it straight to a neurosurgeon, with whom he'd made an appointment. All in ONE DAY. I snuck a look at the report on my way over, but all I remember is the word "severe". The neurosurgeon said I had a severely herniated disk that needed an immediate ACDF, which is what I got a week later.
I have only partially recovered since then, although in terms of symptoms I fortunately did not have much to recover from.
I think there's something about hyperreflexivity that sets off alarm bells with neurologists. Mine said that I had a case of Brown Sequard Syndrome, although he must have meant "partial". The oddest thing about your case is that the MRI (or, at least, the radiologist's report) does not seem to support the need for immediate surgery.
hm, maybe that is why the Neurologist is so adamant about me having surgery - the 'alarm bells'. I'm wondering in your view what it is about the MRI report that *doesn't* support immediate surgery. Something missing that you'd expect to see that's not there? One thing I had not posted on the radiologist's report under the 'impressions' section that basically reiterates the previous stuff says 'slight prominence of the central canal of the spinal cord is likely an incidental finding in this patient. A six month followup 3T MRI of the cervical spine could be performed to confirm the stability of this finding"
The 1st Neurosurgeon counseled surgery 'sooner rather than later' but didn't seem concerned when I mentioned the sep-oct time frame. He framed it as more of a preventative "you're young and active and living in a 'bubble' right now, so the surgery is a way to get you out of the bubble and back to normal daily life activities"... I'm 44, by the way - relatively active, I guess, started a workout program 3x week last september - 15mins on eliptical and 30 mins of weights - which he told me to completely stop. and I have. Now I'm too paranoid to be active....
Mayo Neurosurgeon said I don't need surgery at all, right now, and don't have to restrict any of my physical activities and could go do things like ride on a jetski... but with no pain and 'asymptomatic' = no surgery.
One other thing I just remembered... First Neurosurgeon said I had a herniated disk that was torn and leaking (? I think that was what he said), whereas the the Mayo Neurosurgeon said my disc was NOT torn and not herniated, no 'leaking' and was typical slowly progressing DDD. When I asked how a different Neurosurgeon saw a torn disc and how he didn't see that, he said he respectfully disagrees with the other Neurosurgeon and that it's a matter of interpretation of the MRI image.
Weird. So now my mission is to determine if I really am asymptomatic, I suppose. I have a Barrows Neurosurgeon appt for July 9 and a Mayo Neurologist appt for July 31. if I can get another Neurologist appt earlier, I will do that, too.
I will keep you posted. If anyone has suggestions of questions to ask of the Docs on my next visit, I would appreciate it.
My list of questions so far is -
1. what is my level of hyperreflexivity, in which nerves and on what sides? is it symmetrical or not? what cervical discs does that correlate to?
2. what is my level of muscle weakness and in which muscles on what sides? what cervical discs does that correlate to?
3. what is the amount of compression on my spinal cord? what is the diameter in mm?
4. could gravity account for spinal cord impingement from when I was lying down during the MRI?
<< Something missing that you'd expect to see that's not there? >>
The word "severe" for one thing. "Indent" is another one.
<< it's a matter of interpretation of the MRI image. >>
Unfortunately true. The radiologist didn't seem to think there was a herniation, either, or at least he didn't explicitly say so.
As for your questions:
<< 1. what is my level of hyperreflexivity, in which nerves and on what sides? is it symmetrical or not? what cervical discs does that correlate to? >>
Not sure how important that is. I would ask if he thinks it's evidence of cord damage, or if it might be something else.
<< 3. what is the amount of compression on my spinal cord? what is the diameter in mm? >>
Or, more important, could a seemingly minor impingement on the cord still cause damage, and still require surgery?
<< 4. could gravity account for spinal cord impingement from when I was lying down during the MRI? >>
I think the answer to that is no, but it's theoretically possible, I suppose.
I would add another question... If the disk needs to be removed, how will the surgery address the facet and uncovertebral hypertrophy?
Am I correct in thinking, though, that if you hadn't had the original foot problem you never would have even had an MRI? If so, I'm kinda on the side of the Mayo guy. My opinion in this kind of thing should carry no weight, of course. I'm just saying.
You know, another thing you might try (probably easier and cheaper than seeing a neurowhatever). Send your images to a different radiologist and get his reading. I've never heard of this being done, but you seem the enterprising sort...
Last edited by WebDozer; 06-25-2012 at 06:20 PM.
The Following User Says Thank You to WebDozer For This Useful Post: taralynn67 (06-25-2012)
Grreat advice... thank you so much!!! I will follow up once I get through those appointments... and, you are correct -the whole thing started with the foot numbness and wanting to rule out MS as a potential side effect of being on Enbrel... now I'm a panicky mess - every time I go to the bathroom, it's like - wait, did I lose control? was that a hesitation? how many times have I gone today? didn't I just go 30 minutes ago? LOL.... sorry, that's probably TMI, it's just that my anxiety level has gone through the roof since I was told I was a ticking time bomb and every sneeze takes on a whole new meaning... but I do feel there's not enough consensus, so I will go forth with my research... I like the idea of another radiologist write up... hm, I'll figure that out.... : ) I have already blown through my deductible and am now gunning for the maximum out-of-pocket, why not?? wonder if my anxiety is causing hyperreflexivity?? maybe I just need a xanax... egads. If this whole thing ends up being a wild goose chase, I will be annoyed, but tremendously thankful. Scratch that "annoyed", i'll just be thankful : )
After reading all these messages oon the board, I trulytrulytruly hope that everyone here suffering with this can find what they need to feel better - it's so hard to live with pain and not have good answers/solutions!!!
hi - I am 5 days post op so will keep this short but you guys have symptoms close to mine so wanted to chime in a bit...to start - 36/female/active/no medicines/no historical medical issues of any kind.
woke up 5/11/2012 with a slight numb feeling to right foot and some slight ankle pain - nothing in memory to attribute issue to. Nothing was disruptive, but realized throughout the day/days that is was 24/7 so called internist and was seen on 5/18...diagnosed with inflammation and told to take aleve and stay off heels for 2 weeks. Over the next week, symptoms grew and had faint numbness throughout right side of body (arm/shoulder excluded). Called dr again, told to give it one more week. Thinking an ankle X-ray would help, went to an acute care place and repeated story....along with mention that I now had temperature sensitivity (cold hurts, hot doesn't feel hot - again, not sharp but noticeable). Acute care dr got me into a neurologist within the week, and pin*****s test showed I was not receptive to pain....ordered MRI.
MRI results came back, saw neurologist again, showed severe cord compression at c5/c6 (words severe and urgent were often used with me). Along with disc issue, also showed me two pockets of syrnix. Consult with neurosurgeon next, recommended surgery, also added diagnosis of brown-sequard...his opinion is that the cord compression is causing the syrinx, the syrinx is causing the brown sequard and that is causing the nerve issues. He thinks by correcting he disc (via acdf - no time to consider artificial disc), the body will adjust and self-correct...though no way to know how long (or if) nerves will repair.
I think my story is a bit similar to both of yours in that I was not in pain...I see that most people reach acdf as a means to end pain, not so for me. Also, everything moved fast (both increase in symptoms to response/reaction from surgeon). So, be ready of that in case your symptoms grow. I also wish I would have had time to consider artificial disc but I didn't, so that may be something to check into and understand options.
I also saw a Mayo surgeon (who is now private practice) for my second opinion. He has a reputation for being very conservative and he also recommended urgent surgery.
Surgery was last week, pretty good recovery so far. I see a lot of postings about complications and trouble but mine has been pretty ideal. I also feel I had an excellent surgeon so maybe that makes a lot of the difference. He also didn't require a collar postoperative so that has been nice for me.
As far as change in symptoms, none yet but expected that. Not sure how we're going to measure success around reduction of the syrinx but that's to come. I was worried about my original symptoms growing worse so feel good to hopefully be on the other side of that.
Did I mention this would be quick? Oh well, hope it helps a bit. Good to see others with acdf consideration for non-pain management issues, I haven't found a ton of us. Happy to answer any questions as well. Take care.
Acdf - I can't tell from your handle if you had a one-or two-level ACDF. One, I guess. And no collar? That's awesome. I think you should create your own thread so that other people here will pick up on that.