right or wrong to push back on neuro's decision?

[doublevision1]

My new-ish neuro ordered a follow up/monitoring brain MRI with contrast to be done in six months. I called his nurse to ask why not c-spine too,which resulted in the most frustrating conversation.

Me: why not c-spine too?

Nurse: after dx, we normally just do brain for follow up. Patients tend to have more brain lesions than spinal.

Me: Actually I only have one brain stem lesion but several on spine. The spinal ones are what cause my worst probs and my current relapse is spinal. In fact my previous neuro was so concerned about so many spinal/so few brain, and ON episode, that he tested me for NMO (neg).

Nurse: Oh, well in that case, I'll talk to the DR about the MRI order.

calls me back

Nurse: Talked to DR, he says, nope, don't need to do spine, once dx is made, they're not that useful in that they don't really tell us much that would result in any change of treatment. We already know you have spinal lesions, we want to see if there are clinically silent brain lesions, to assess how you're doing on your treatment.

Me: so hypothetically, say I DID do spinal, and they find changes (more, larger, etc). You wouldn't consider change in treatment?

Nurse: Well no, we go more by how you're doing clinically, not how MRI looks.

Me: Wll then why does it matter if I have clinically silent brain lesions? Since you go by symptoms and not MRI?

SILENCE

Me: I'm not trying to be difficult,I'm just trying to understand the rationale as what you just isn't logical. My previous neuro always ran brain & spine to compare past and present. Why the difference?

Nurse: well, different clinics do have different practices.

Me: in the same province? Is MS in Calgary different than MS in Edmonton? [ok, that was snarky but I was frustrated].
I am concerned if we don't do spine now and things are worsening on MRI AND clinically [current sensory relapse on is in areas of my right side, which is new, and in addition to long standing pain on left side] that this may result in more permanent damage/pain than I already have. How can he fully assess efficacy with only part of the picture? I just want to understand his rationale/evidence to back up his course of action. Eg: literature.

Nurse: Ummmmm, I'll call you back.

That was Thurs. Still waiting.


I'm truly not trying to be difficult,I'm just trying to understand. I don't love lying in a closed in tube any more than the next guy, but if my previous, bright, well regarded neuro thinks its useful, I'm going to want to do it. I don't know this new guy well enough yet so I haven't had a chance to develop confidence in him.

Does his plan make sense to anyone and am I off base on pushing back?

To give credit where it's due, the nurse was really professional and not defensive when we spoke. I would not enjoy a go between role like hers.

[doublevision1]

Lizzie - here is the pic:

http://www.medhelp.org/user_photos/show/448655?personal_page_id=875869

I love Westies almost as much as Standard Poodles :)

[cubbiesfan918]

DV- where did you hide this puppy picture? LOL It's so funny, I never thought I was going to have a human baby and still treat the Westie like he's a kid even with a real one now. I totally get puppy love :)

[doublevision1]

Kyle, thanks for the book recommendation.  Sounds great!

Lizzie - puppy is wonderful, adorable, healthy, and growing like a weed. I just posted yet another pic. :)

[cubbiesfan918]

Thanks for the update, I'm so glad it turned out to be positive in your favor!

PS - you never told me how your puppy is doing :)

Lizzie

[kwarendorf]

It's called The Empowered Patient and was written by Elizabeth Cohen. It's a great read for people like us, especially those in Limboland.

http://www.amazon.com/The-Empowered-Patient-Diagnosis-Insurance/dp/0345513746/ref=sr_1_1?ie=UTF8&qid=1378992072&sr=8-1&keywords=EMpowered+Patient

[kwarendorf]

There is a great book by a network news person. It's all about being your own health care advocate. She doesn't put up with Dr's BS. I'll find it and post the link.

Congrats DV :-)

[doublevision1]

Update: a different nurse called back yesterday to tell me that my C-spine MRI is scheduled to be done on the same date as my brain MRI.  No discussion of why neuro changed his mind. I suspect he just wanted me to go away, lol. Whatever the reason, I got what I was looking for. Pushing back pays off. Don't let anyone else take charge of your health care....only you will put you first!

[doublevision1]

Thanks for the input, everyone.

Quix, I also looked to the 2009 guidelines and agree they aren't crystal clear on this point.  That said, I DO have clinical disease activity refer able to the signal cord. All the old stuff, plus the new stuff from ths relapse (sensory; burning, chafed feeling through my right arm, armpit, shoulder and upper back). I do have MRI evidence of disease activity in the brain, but it's minimal, and ONLY in the brainstem. No major clinical evidence of the brain stem lesion, jut theold residual diplopia when tired, minor swallowing triouble when tired.

So it seemed to me that c-spine imaging for follow up on my case made sense, coupled with the fact that my previous neuro ordered them, and he could be pretty stingy about running tests on a routine basis unless there was a specific reason to do so. In fact, he had ordered brain/c-spine for me to do in Feb of this year, but as we were in the midst of moving, the nurse agreed I should cancel it and have my new neuro order the test. Now I wish I'd just stuck around long enough to get it done.  

I still haven't heard back from them yet. If they come back with a firmer No, I do have the option of private MRI. I'd have to ask my GP to order one, which hopefully he wouldn't mind doing given I'm paying out of pocket for it. I looked into it, it's about $900, not astronomical as I thought it might be.  However, if it's full of changes and I bring to neuro and they use the info to change the plan, I will for sure be asking to be reimbursed.

Note, I'm in Canada so there are no insurance companies looking to save money, but I'm sure physicians here are likewise under pressure to be cost conscious in our provincially funded system,. That said, I've never believed that cost considerations were prioritized over my own health care by any of my docs, who make all medical decisions, not any insurer or government body.

Will let you know how this evolves. Thank you again!

[kwarendorf]

DV- I've always thought that without significant change there is little value in continued MRI's. That may be do as I say, not as I do :-)

Until the end of June I received routine, 6 month head MRI's in conjunction with my Tysabri use. I recently had  a a c&t-spine MRI with and without contrast. I am guessing that it was ordered to establish a new baseline, in conjunction with my switch to Rituxan. This was two years after my DX and with no significant clinical change.  The MRI showed no change from original MRI.

So while I don;t object to the Tube Time, I'm not sure the c&t-spine MRI told us anything.

Kyle

[tingletingle]

It used to cost $350 out of pocket for each MRI which was definitely a burden but fortunately we have a new image provider in town and as long as I get a referral from a neurologist as opposed to just a plain old GP (primary care) then it is free!

Well, thanks for validating me Quix. Glad to know that my righteous indignation was justified.

Blessings
Alex

[Quixotic1]

Depending on the setting, Docs can be under enormous pressure to keep diagnostic imaging costs down.  I know, I was constantly monitored for it and received nastygrams when I went too quickly to an expensive test.  In certain settings the MD's reimbursement can be tied to his costs to the insurance companies.
Q

[PastorDan]

I doubt it saves the neuro any cash.  Insurance company, yer darn tootin'.

Oh, but my first neuro owned the lab to which he sent me for all the tests, including the MRI.  Declining anything would've cost him, I suppose.

[Quixotic1]

IMO, you should have regular follow up on your spinal lesion.  Anything that large should be monitored.  Perhaps we are talking about saving $$.?

Q

[tingletingle]

Fab answer Quix, thanks.

Yes, I had too had wondered and felt the same sense of frustration and anger as DV. My neuro refused to do the T-spine and yet that is where my biggest lesion sits!

When I was in the process of diagnosis, because of bilaterial symptoms and the size of the lesion at T5 the neuro suggested that I may have a tumour or Transverse Myelitis. After a month he then settled on the second possibility and told me that everything would clear up in six weeks. oops!

Well, imagine my frustration recently at being told no, you don't need another MRI on your T-spine when they discovered the rapidly growing tumour in my head!  I can't help thinking what if his initial diagnosis was actually correct and the lesion in my spine is also another tumour?

Anyway, you've now answered my question. He is mindlessly following the guidelines. But surely the patient's wishes and anxiety levels should be taken into consideration?

The other side of me thinks nope it couldn't be a tumour because I wouldn't be walking or at least my symptoms would have gotten much worse rather than stabilised or even slightly impoved. So I'll get back in my box.

Blessings
Alex

[HVAC]

I had the same problem with my MRI this year. I wanted the whole series since I had never had a spinal MRI. The nurse said the Doctor said no only Brain MRI. I saw the doctor and he said I think we should do a spinal MRI. They did and found spinal lesions. I have PPMS which usually means more spinal lesions and no one had every done a spinal MRI.

I know the nurse did not convey my message, I knew the first thing the Neurologist would say was I need a spinal MRI. In the end I got a spinal MRI and yes I have more spinal lesions than brain lesions.

Don't get me started on how miserable an Oncology nurse can make your life. I have one word for the one I have now "Idiot". The beauty is she gets paid no matter how many mistakes she makes in a day. I wish I had a job like that.

Alex

[cubbiesfan918]

Oh my goodness, you were very helpful :) I think you answered everything that I was going to question in one lump sum!!! You are brilliant!

I hope that Double gains as much from your post as well. I completely see why everyone loves you!  :)

Have a great evening!
Lizzie

[Quixotic1]

Well, this IS something I have read about recently.  The newest (2009) MRI Protocol recommendations published by the Consortium of MS Centers states that your neuro is strictly within the guidelines.

"A brain MRI with gadolinium is recommended for the follow-up of MS patients:
•    To evaluate an unexpected clinical worsening concerning for a secondary
diagnosis.
•    For the re-assessment of the original diagnosis.
•    For the re-assessment before starting or modifying therapy.
•    To assess subclinical disease activity should be CONSIDERED every 1-2 years.
The exact frequency may vary depending on clinical course and other clinical features.

A spinal cord MRI with gadolinium is recommended for the follow-up of MS patients with clinical evidence of disease activity referable to the spinal cord and who do not have MRI evidence of disease activity in the brain."

There are two ways to interpret that last statement.  That is doing the spinal MRI if a patient has signs and symptoms referable to the spinal cord AND/OR only has lesions in the brain.  The other way may be how your neuro is interpreting it: that you must fulfill both criteria.  I can't tell which is the correct way to read it.

In my medical mind, however rusty it may be, I would want to re-examine the spine MRI if signs or symptoms referable to the spinal cord are changing - especially if they are worsening.  But, spinal lesions are much less likely to be silent than brain lesions.  This means that if those signs and symptoms are stable, it is pretty unlikely that the lesions are markedly growing or that there are new ones.  

So, if a Neuro's rationale for the re-examination is to look for "silent" disease, the brain is the place to look.  As I think about it, your Neuro is being rational.

OTOH, my neuro, of who I think the world!!, always checks both.  My brain lesions, like yours are few and piddly, but my brainstem and spinal lesions are much more remarkable.  I also am more comfortable having both done even understanding the rationale for doing only the brain exception in the scenario described.

Have I muddled?

Quix

[cubbiesfan918]

Double, I was thinking the same about C Spine and why I'm getting a 6 month brain follow up as well.

I cannot give you an opinion as to whether pushing back is correct, I will say I was going to present very similar questions to my newly referred Neuro. I understand this isn't helpful to you, mostly wanted you to know I'm experiencing the same and am going to hear a 2nd opinion.

I will let you know if I found out anything beneficial, my appt is later this month though and I truly hope you have resolve soon!

PS Hows the puppy?

Lizzie