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View Full Version : Cervical Myelopathy – benign imaging


mmglobal
03-29-2006, 02:27 AM
I’m in Germany now with a client who had a 3-level cervical ADR procedure done today. While she is not someone who posts, she has been reading the forums voraciously for years and has given me the OK to share her story.

I’m not really posting about her surgery. I’ll leave that for her in the days to come. The purpose of this post is to tell about the difficulty in getting a good diagnosis and how the tests that we rely so heavily on can fail us.

Her symptoms include various numbness and weakness in her upper extremities, shooting pains in shoulders and upper arms, pains shooting up into head and behind one eye. These symptoms can be exacerbated by specific movements. Also experienced are intermittent occasional wobbly legs, gait problem and inability to hold her urine. It should be noted that these intermittent problems clearly coincide with worsening of other symptoms.

Her case was presented to many local (deep south) spine surgeons, neurologists and pain management specialists. All were unable to correlate problems between her cervical spine and these issues. While her imaging does show some pathology in her c-spine, it is all viewed to be too minor to be causing the symptoms described.

When I presented her case to some of the top spine surgeons including Dr. Bertagnoli, I received similar responses, but instead of a dismissal, we received instructions to rule-out other causes… brain MRI, thoracic MRI. After ruling out other obvious causes, he (Dr. B) would consider her case again. After further review, she was scheduled for a likely 2-level (possibly more) cervical ADR.

Upon arriving in Munich, we went to a Neurologist that I particularly like for a comprehensive neuro review (something that she had not gotten in spite having paid for three with neurologists who dismissed her before fully evaluating her.) As I watch test after test demonstrate lack of proper function in certain muscle groups, inability to walk properly, severe pain generated with certain movements, etc…. I kept looking at her mother and asking if anyone had done that???? Has anyone done that??? The answer was usually, ‘no’. It was so frustrating knowing that this poor woman had been dismissed… the doctors label her as a doctor shopper, never give a complete evaluation or offer any help. They wonder why we wind up going to doctor after doctor as if we are simply seeking attention, meds, etc… I’ve experienced this first hand as a patient myself, and now several times with clients as well.

It was quite confounding for the doctors looking at the films that showed so very little. She had full sets of flexion / extension xrays that showed no instability. She even had a functional MRI with series in flexion and extension…. showing NO instability. Fortunately for her, there was one CT scan that showed minor instability at a level that had never been considered. If this film was not present, or if this CT was done in such a way that is showed the instability to be less or none, as had the other imaging that normally shows instability; we would still not know about a serious pain generator. Because of the single image and because of the comprehensive neuro review, it was decided to discogram that level, even though the disc looked healthy. In all the prior treatment, this level was never even discussed. In addition to a traditional cervical discogram (if there is such a thing), Dr. B also did a functional discogram… putting the segment in question in flexion and extension, while under flouroscopy, after the contrast was injected. This clearly demonstrated the instability. Injection of the contrast at this level also recreated some of her symptoms in a big way.

The fact that many of our doctors dismiss us inappropriately because they can’t figure it out… it must be our fault…. we are drug seekers… we are malingerers… we are doctor shoppers…. THIS IS NOT NEWS TO US. I’ve just never seen it demonstrated so clearly. The neuro who did the wonderful workup was not taken aback by the lack of dispositive imaging. He says that it is not uncommon for surgeons to discover pathology that does not show on the imaging. The neuro workup clearly demonstrated cervical myelopathy and radiculopathy, consistent with complaints of the patient, consistent with the location where pathology shows (even though it is not thought to be severe enough to be responsible for the symptoms), consistent with patterns expected for the type of injury she sustained. Imaging is not the be all, end all of the diagnosis; it is just another one of the tools used. Doctors who label their patients early and close their mind to a complete diagnosis will fail to do their job in cases such as these. Sadly, they ‘rat out’ the patient to the next doctor… sending an intro letter that clearly states, “here comes a doctor shopper”. This intro causes the next doctor in line to close his mind and label the patient before he or she even gets started. And they wonder why some people keep going to doctor after doctor.

Mark

Tbackpain1
03-29-2006, 10:35 AM
Mark,

Doesn't it just gall you when you see things like this? How many times have folks come looking for support here that have imaging that's relatively benign, but have symptoms that point to specific problems? Its doubly frustrating that so many physicans diagnose the films and not the patient. We see and hear it all the time, from Dr. W and Chirogeek that the films are only a part of the puzzle.

Grrr...seeing stories like this makes me glad that my docs took the time to examine me, otherwise my T-spine probs would have been blown off as a mild sprain! :eek:

Theresa

Cervie Barb
03-29-2006, 04:10 PM
Excellent testimonial, Mark! You state beautifully what I've long suspected. I'm interested in hearing how much relief she gets from her symptoms in the weeks to come. Please post an update when you can.

Sigh. Why can't I find (and afford!) docs like Dr. B and the other supporting docs over there?! Wish more docs in the states would be curious and caring enough to dig for the answers.

Thanks again!

rob_zzz
03-29-2006, 06:10 PM
The problem is the medical system is set up in such a way that failure's by Dr's to do proper clinical assessment and diagnosis are not highlighted and recorded as part of the process.

The Dr's that missed this diagnosis will never know that it was missed, will not be given any kind of notification and advice on how they should improve their clinical skills, but instead will continue on with ignorant arrogance about what geniuses they are while continuing to treat patients badly.

Second opinions should be an integral part of the medical process - i.e. mandatory and not just 'if the patient wants one'. All decisions and outcomes should be subject to review so that problems with diagnosis and treatment can be picked up and fed back into the system so Dr's can be educated on how to improve their diagnosis and treatment of patients. This is what would happen in any other industry. Too much power rests with individual physicians and there is no process for ensuring physicians maintain a certain standard of knowledge about their field etc. etc. Some do and some don't.

And if they can't pick something up on a test then the patient must be the problem.

If I can't treat you and/or diagnose you then you are not sick, seems to be the philosphy.

dachin
03-29-2006, 06:52 PM
After having had 4 cervical surgeries (4 fusions, 1 double corpectomy, and 1 posterior foraminotomy), my surgeon has finally admitted that I'll probably have the "pain" for the rest of my life--this after 3 yrs. of waiting for the pain to go away. I'm not angry, just am realizing that it's a crap shoot--when you try to think of these things objectively, how on earth can you think that someone can honestly tell you that the pain will disappear! How else can the surgeons convince you to have the surgery in the first place--they always state the statistics, but I think they have no idea how an individual will react to any given surgery. There's no one to blame, and hopefully someone will come up with the right "cocktail" to dull the pain for future patients! The hardest thing for all of us is to reach deeper and deeper into our minds/souls/hearts, whatever to find the small beam of light to keep us thinking that the pain is smaller than more important things........

slipnslide
03-29-2006, 09:51 PM
BRAVO MMGLOBAL!....and thank you for stating what so many of us experience. Please do encourage her to post her progress.

nopain
03-29-2006, 11:02 PM
Thank You for the post - which once again shows the dismal treatment patients receive from the "average" american Doctor. I've been to 4 Neurologists - what a joke. One day I may find one who will do more than test a few reflexes and say I don't know.

Until MRI's can diagnose we are stuck with 15 minute evaluations and $400 bills with zero follow up. None of the 4 Neurologists I went to even read my MRI's - they only glanced at the reports. I can read the reports myself, and for less than $400 an hour. Unfortunately I don't have the resources to travel to Europe. It's sad there is so little effort made to truly diagnose complicated cases, You're just sent packing or told to go to a psychiatrist

Please keep posting on your German experieces - good and bad.

ChiroGeek
03-29-2006, 11:16 PM
We would still not know about a serious pain generator.

Although completely believable, it may be a bit premature to make any conclusions on pain generators or fixes until after / or if she has obtained good relief from the fusion (at least 20 on Oswestry).

I've got my fingers crossed that Dr. B can help out here; however, let's just wait and see how this all pans out before condemning our system of medicine, for there are many many excellent docs here in the good old USA.

mmglobal
03-29-2006, 11:56 PM
Although completely believable, it may be a bit premature to make any conclusions on pain generators or fixes....

Doug,

Nobody is condemning our system of medicine. I'm just noting that some doctors will dismiss some patients based on notions conceived in something other than an honest attempt to attain a true diagnosis. This phenomenon is not isolated to the US... I've seen it in Germany too... I've seen it vicariously in patients from many other countries. We are not special in this and this post was not about a country or a system.

No spine surgery is guaranteed and especially with 3 levels involved, we do not know how good she'll get. The purpose of the post was not to tell about the surgery, but instead about the difficult diagnosis. I do not think that the message conveyed depends upon the surgical outcome. With the absence of one slide that had been overlooked or unavailable to the early doctors... C3-4 was never suspected. The injection of the contrast during the discogram shot pain into her head and into her eye.... absolutely concordant pain... exactly what she feels when she is in episode. This pretty clearly demonstrates the pathology at that level. Other levels generated other familiar pain patterns, but not this one. While it is possible that there are ALSO other pain generators for this pain, I believe that it was demonstrated that this level was generating that pain.

There is no assumption about fixes here... time will tell.

I agree that there are many excellent docs in the US. I believe that most are excellent docs. I even believe that the neurologists who dismissed this patient as a doctor-shopper, drug-seeker are probably excellent docs. However, all the docs are often faced with people who are doctor-shopping, drug-seeking malingerers. We must accept the fact that they will be wrong a certain percentage of the time. They will absolutely give meds or surgery to someone who they shouldn't. They will absolutely deny services to someone who really needs their help. I was dumped inappropriately by a pain doc that I think is excellent. They will be wrong some of the time and for people like us, the results can be devastating and humiliating.

The point of this post is that if a doctor is to dismiss a patient as a head case, it should be based on an honest attempt to attain an accurate diagnosis. All too often, an early impression completely eliminates any possiblity of getting that honest attempt.

Mark

mmglobal
03-30-2006, 12:02 AM
One side note... the neurologist told me that he believes that a complete neuro exam cannot be done in less than 90 minutes. This exam was 3 hours and included EMG, NCV, and SSEP.... all cervical AND lumbar. We wanted to have a baseline for these tests so that if she has ongoing problems, we'll at least know where she was going into the surgery.

miss_lissa
03-30-2006, 01:34 PM
Mark,

Very encouraging testimonial. I've been experiencing ongoing pain for almost two years and have seen numerous doctors, including specialists. They all sent me to physical therapy and gave me narcotics and sent me on my merry way. I lost two jobs due to frequent absenteeism and am currently worried about losing a third. :(

It is ridiculous how [some] doctors treat people. I am very young (25) and I've had several doctors tell me that I'm TOO YOUNG to possibly have any kind of serious back problem.

I'm still looking for my answer.

Take care!

StillSmiling
03-31-2006, 10:23 AM
Wow Mark!
Does Dr. B. normally do such a thorough (3hour) exam with all of his patients? I've had exams lasting 1 1/2 hours, but 3 is really amazing.

There are good docs in this country-my Neurologist spends so much time with me and looks more to how my exam and symptoms correlate to what I say, as well as reviewing films. None of my docs look at the reports from scans.

I DO have problems with surgeons though. Most of them prefer for me to stay in Pain management rather than tackle the myriad of problems that are within my spine. They feel they can offer no benefit.

I truly wonder. Mark, Does Dr. B do consultations with only films, any reports that he would need and a symptom list? You can PM me. I hate being disabled and on SSDI.

Thanks! Mark, you do a wonderful service for so many people. How lucky this woman was to connect with you!

love, lynnie

mmglobal
03-31-2006, 06:23 PM
Lynnie,

The 3 hour exam was with a neurologist that is not connected to Dr. B. I have found him to be incredible, so we went to another town just for the meeting with him and it was well worth it. He did a workup on me a couple of weeks ago and I could not be happier with how thorough he was and the quality of the info that I received. (Yes I do have cervical myelopathy causing the feeling of worms crawling on my face, pin pricks all over... but he believes that it is at a level that makes my decision a quality of life choice... not something that I must do because I'm afraid of permanent neuro deficit.)

Mark

mmglobal
04-04-2006, 12:29 AM
1 week post-op yesterday. Things look great. We don't know how good she'll get, but she is already so very much better than preop. Gait returned to normal... zingers in arms not gone but at a level that is a small fraction of what they were, feeling returning in hand, most importantly, the shooting pain into head and eye gone. Hopefully, she'll continue to improve. This is incredible.... leaving for airport in a few minutes, but here is what's been happening here in Straubing.

http://globalpatientnetwork.com/stories/0603-Ginger/

Mark

Suede
04-04-2006, 07:34 AM
Mark, Thanks for sharing another great story with us.
It's so nice to see that there is hope.
It's amazing to look at Ginger's pics before and after, it's so apparent the relief from pain in her eyes and face.
By the way thanks for the beauiful pics too, they are story like..
Linda

Cervie Barb
04-04-2006, 12:39 PM
Wow, thanks Mark! "holding the camera without shaking...walking without bumping into things..." I wonder if people without these problems know how exciting that its?!

The pics are great. Incredible how much disk height is given with the ADR. I imagine one would experience some muscle spasms while adjusting to that kind of change.

But, the archetecture is what really got me! Where's my plane ticket? lol.