1st MRI, a comedy of errors...???

[michelleislay]

well, this may be a bit confusing, but i'll try to explain it as best as i can.

the neuro i saw at the beginning of august ordered an mri of my brain and head --written on the requisition was "to rule out m.s."  she referred me to a great learning hospital setting for them (this--even though she thought i had only a back injury and anxiety!!lol!) anyway, these were ordered and the one of my head is booked for this upcoming monday--the one for my spine, not until jan 28th!!  i'm assuming they will be done with the proper M.S. protocol i've read here about.

my family doc, disappointed at the jan. 28th date, put in a referral to our local hospital for an mri of my spine, which i had done on wednesday.  and now i have the results...

so, comedy of errors begins.  she only ordered my T and L spine done, mistake number one.  

mistake number two, i know she mentioned she was looking for disc issues and demyelination, but from my interpretation of the results, it looks as though they were only looking for disc abnormalities.

the summary is as follows:

no evidence of cord abnormality, central canal stenosis or neural foraminal narrowing to account for this patient's clinical presentation.

the report before this is very long, but just talks about more of the same...nowhere can i see evidence that they were even looking for demyelination or anything related to ruling out m.s.  i know it was a 1.5 machine.

what do i do with these results?  i suppose i take them in combination with results forthcoming from the head MRI (monday) to the neuro...will the spine mri then atleast suffice to rule out back injury?  or will she try and tell me my spine is just fine and doesn't need to be investigated any further?

any advice welcome!!!

so dreading seeing this neuro again--though i will this time plead my case a bit better and insist that anxiety is not an issue.

xo michelle

[tailback34]

Michelle, for 4 years (age 12-16) I experienced massive headaches and unbearable cervical spine pain. When my doctor finally ordered the scan I was 15 years old and he said the scan was normal and it was muscle pain. One year later, in my high school football game, I hit someone and instantly lost all feeling from my neck down. I was rushed to the hospital and, after an MRI, was diagnosed with a rare spinal cord tumor between C1-C2. I was immediately flown by helicopter to U.C. San Fransisco where I was operated on by one of the top neurosurgeon's in the United States. He performed a C1,C2 and C3 Laminectomies and partial Craniectomyto remove the tumor. It was succesful and I regained all sensation/movement as the swelling subsided. I had to have a C1-C3 fusion five years later and now am awaiting my third cervical surgery to stabalize my spine.
    I guess I should get to the point,lol. I've learned a lot since then about spinal cord issue's and my general health. The most important thing to remember is that you are in charge of your health and the doctor's, while giving advise/opinion's/diagnosis, actually work for you. Be pushy if need be, or search for a doctor until you find one who will listen to you and take your concern's and expectation's seriously. I dont know if you have access to care here in the states but U.C. San Fransisco is as top notch as it gets for spinal/brain diagnosis, research and treatment. They work with Stanford Medical Center on research for the spine and brain . They also offer many trials although I do not have much info. about that.
   I hope you find the care your looking for and get a accurate diagnosis. Just remember that you are in control, you have to ask question's, express any doubt's, be pushy and dont back down. My tumor was missed by my first doctor and I almost paid with my life simply because he felt that I should be perfectly healthy at that age. I hope there is nothing wrong with you, but if there is I hope you have a clear diagnosis ASAP. You deserve that at the least. Good luck and I wish you the best.

- Seth

[michelleislay]

oh, and i will get all of my imaging on disk, but sadly, my neuro isn't interested.  i guess she doesn't know how to read them.  

just reread all of these posts, so much great info!!!  truly, you are all wonderful!!!

[michelleislay]

thank you all so much for these great and informative responses!

on your advice, i've just gotten off of the phone with the centre i'm having the mri done at and...it's only a 1.5 tesla, and...the neuro only ordered without contrast.  boo.

i wish i could change a few things around, but i fear in canada from all i know, we are at the mercy of our doc's as far as these decisions go.  if my neuro were a bit more attentive, i'd try to push her, but she only thinks i have anxiety and a back problem!  thank goodness, my mention of what might have been an ms hug grabbed her attention and for this, she did order the mri.

however, having said that, it is also easy here to get second and third opinions.  my doc. and i have already discussed sending me somewhere else after i get these results in.  we are thinking if something obvious shows up on the mri, then i could get referred to a local neuro here (who a girlfriend i know goes to for her m.s.) and if needed, i'm sure i could from there get new mri's ordered.  **and we wonder why there is such a long wait in canada for MRI's lol!!

or if everything still remains a mystery and the current neuro still won't take me seriously, i will try to investigate a good neurologist either in toronto or london, which have great neurology docs. and facilities.

thank you so much for all of your input!  i can't tell you what it means to get some solid advice from those who have been through it!

it is great that atleast the c-spine still hasn't been imaged at that last hospital, i don't think they are very good for mri's and better yet, like you have all said, atleast my neuro won't be able to tell me she thinks my numbness is due to back problems anymore--the physio i've been seeing will attest to her position on this as well.

i will keep everyone posted when i get the results from the next mri.  i doubt i'll be able to get these so expediently as the last, so a week or so from the holiday monday i'm guessing.  (i had a bit of a connection at the local hos!)

huge hugs to all and hope you are all having a good start to the long weekend!!!

xoxoxo michelle

[twopack]

Well Erin, I was told the same thing in 1990 (not  3T of course), a stroke or degeneration in the brain stem.  CCF reassured me too.  I have those old images on a CD now.  My MS specialist pointed out lesions clearly visible in several areas of my brain and many of my present symptoms can be traced to brain stem involvement.  MS is a tough diagnosis always.

Michelle, let me clarify my thoughts.  There are many quality 1.5T MRI images.  Some are simply better than others because of the superior software programs supporting them and the techniques/skill of the techs.  It's certainly the best many of us can get.  

I'd still take a 3T if it's an option, especially on the more difficult to image spinal cord.  

I cancelled an exam upon arrival at an imaging center when I learned the scanner was open rather than high resolution.  THAT just wasn't worth anyone's money when looking for MS lesions anywhere.

Mary

[Erin0313]

  Well at least the doctors are ordering MRI's. That's a start because even if they do say all is normal you have a baseline for down the road.

  Everyone seems to mention the machine strength asking if you will have a 3T on Monday as well as not thrilled with the 1.5 you had the spine on. It is true that 3T is awesome but they are not the majority yet. Most facilities even great ones still use a lesser magnet.

I have had lots of MRI's done and only 1 was on a 3T. All of my lesions show up on the 1.5. I think the more important question is did they do the spine MRI and are they doing the brain MRI with & without contrast? It is very interesting and diagnostic jackpot when the lesions light up like a Christmas tree with the gad (contrast). If you have the order for the MRI take a peek and see if it says with & without. If not I would call the doc that ordered it and request that they do both.

Good luck and keep us posted on the brain MRI and what the doc has to say
Hugs,
Erin :)

twopack: Mary, Hi! The Cleveland Clinic does have a 3T as well as lots of 1.5's. That is where I had my one and only 3T. They only use it for clinical studies and the 1.5's for everything else. The stinkin thing "said" that I had a stroke and then the neuro said that was b/s and that she wanted the report changed - so basically it was a waste of time.
:)

[Lulu54]

Michelle,
Sorry it seems to you that this was a waste, but I agree that this is really a good thing.  The possibility of disc problems have been eliminated with this MRI.

Now your neuro can get on with having the Cervical spine imaged.  

I'm glad your brain MRI is happening next week - maybe that one will tell your doctors more.

Good luck,
Lulu

[twopack]

Do you just have the report or did you get a copy of the spinal MRIs on a CD?  The neuro will (hopefully!!) want to see the images and not only the report.  She may decide on her own that these images are not satisfactory for what she wants and reorder.  But insurance may balk at another imaging order immediately on the heels of this one.

A lumbar spine MRI wouldn't show lesions because the spinal cord ends before the bony spine does.  So yes, that MRI is 'useless' for directly diagnosing MS.. But since MS is a diagnosis of exclusion, it can be useful to see if there is anything going on in the lumbar spine to explain symptoms.  The unnecessary thing is to use contrast for the lumbar MRI since there are no potential lesions to enhance with contrast.

I agree that you should get busy and investigate the set up for your brain MRI.  Hopefully, you can avoid repeating the spinal MRI scenerio by not accepting assumptions that seem very reasonable..  I was just informed that the Cleveland Clinic (which is a major teaching and research hospital with a MS specific clinic) does NOT have a 3T MRI.

How much choice do you have in Canada?  Maybe another northern community member can help you find the testing center you need.  Although already diagnosed, I'm on a similar search down here in Ohio.  Good luck to you.

Mary

[MsWobbles]

You have my complete sympathy!  Sadly, in most of my medical dealings these days, I have experienced a similar comedy of errors!!  Nowadays, you absolutely must be on top of everything medical being planned for you and no longer can you assume that the medical people, be they doctors, nurses, or techs are doing anything correctly (except getting your insurance numbers accurately).  I have learned this the hard way, the way you have - by experience and disappointment after many of their screw-ups. It pays to get on your computer and thoroughly research/investigate any planned medical inquiry so that you can choose the best facility, the best team, the right time - so that you can get answers and the best value for your money spent. But even that's not foolproof.

I can understand your doctor's valid concern about the distant date - January - for your spine MRI - if you were having a flare now, January wouldn't be soon enough!  And, on the bright side, your doctor's mistake in only ordering the T and L-spine (L-spine is  never ordered for suspected MS) is actually a big point in your favor!!!  Hip hip hurrah for your doctor for making that mistake!!!  Because your doctor did not order the C-spine to be imaged, you can now research imaging  and have your very important C-spine images done at a better place than your local hospital - and with a 3 Tesla machine with contrast!!! So all is not lost because your C-spine MRI may actually show lesions!

And also in your favor is that you are smack dab in the widely accepted age group, among doctors, for MS diagnosis!!  So you may, indeed, get your answer.

In younger MS patients your age, lesions are often found on the brain MRI (which I understand you are to have done on Monday).  It is important that you now research that "great learning hospital" where you are scheduled to have your all-important brain MRI. How "great" is that facility really?  Do they have a 3 Tesla?  Will the MRI be done with contrast and with MS protocol?  What is the rating of that facility?  If not satisfied with the answers you find, you could always decide to have it done elsewhere - somewhere that registers better answers to your questions.

Use this medical snafu as a learning experience that makes you a more aware and hands-on patient.

Best of luck to you in escaping the dreadful clutches of Limboland!!

WAF

[michelleislay]

you are so right paula, it is really a good thing that nothing turned up!  i just hope in the absence of evidence that someone will still take me seriously enough to keep looking for answers!

initially i was just wondering, were they even looking for lesions during this mri?  but as jen said, i suppose if something was there they certainly would have mentioned it.

so, once again, like us all, i wait!

xo michelle

[figuerpa]

Did your doctor say she was going to send a copy of the report to your neuro? If not then maybe your neuro won't know about it and will keep on schedule of the spine MRI in January with the right machine strength. In any case I really hope it all works to your advantage.

If your neuro mentions the MRI just make sure he/she knows that it was done on 1.5T so that he/she will know that you need a stronger one. No lesions on your spine is a good thing though so you should be happy about that.

Keep us in touch about what comes of your brain MRI on Monday.

Take care

Paula

[michelleislay]

yup, and i can just imagine that the one of my brain will be "fine" too.  which leaves me who knows where??!!  anyway, i suppose i'll wait and see what monday's mri brings...
thanks jen!

[jensequitur]

Even without contrast, an MRI will pick up lesions in the spine.  Your typical radiologist will mention everything that seems out of the ordinary, and everything that seems ordinary.  So if he/she didn't see any lesions, then there weren't any on the MRI.  

However, with the 1.5T, it's possible that it missed the lesions.  

Your neuro is going to tell you that your spine is fine - that's the problem with getting it done on a machine that's too low.  Whether it's fine or not, now you have the report in your records.  Sorry!