In watch and wait, should I opt for procedures considering insurance changes?

[sweet t]

Hi all,

I am extremely thankful that this forum exists!  I unfortunately am not new to online support through hard health situations (had 3 ovarian tumors - largest size of grapefruit - with one borderline cancerous - all removed - and went into early menopause three years ago).  A forum for early menopause helped me tremendously.

Now, I find myself with new health struggles and although I know that I am a strong person - I wish that my strength was not tested this harshly again.

Just a little history of what brings me here now - I have been having constant numbness in both my hands for the last year and a half - last month started to have more weakness - carpal tunnel tests were negative - pinched nerves were negative - however, within my neck (cervical) mri they found inflammation in my spinal cord - which led to a brain mri to check for possible multiple sclerosis (radiologist and neurologist disagree on whether or not my brain lesions are of concern) - during the brain mri - they found somthing not related to my original symptoms and the reason that i am now on this forum - an acoustic neuroma.

I have an appointment with my neurologist next week to find out more - including the size of it (I was shared the news over the phone - so, I have yet to see my mri films). The radiologist wants to do a closer-up MRI to look at the tumor, but my neurologist wants to wait another 6 months to do that mri. 

However, within the next couple months, I am more than likely resigning from my current job to go to grad school - and my insurance plan is going to change dramatically!

Should I ask my neurologist to order the closer-up MRI now and possibly talk procedures so that I can get covered in my more comprehensive insurance plan?  Or should I just count my blessings that the tumor is not life threatening and just go through the watch and wait and maybe just live with it for years to come unless it becomes a problem?

Any thoughts on this matter would be appreciated and thanks for reading my lengthy post.

With care,
T

[novagirl]

Hello Sweet T and welcome to the forum!
I am sure others will be chiming in with their welcomes very soon.
I've been in watch and wait since July of last year so my two cents are: (1) take a deep breath, you are correct it is not an emergency situation. (2) ask for the radiologist's report to be faxed to you so you can read it for yourself and see how big the tumor is.
Do you have a doctor's appointment to discuss the results of the MRI? I think it would be a good idea. You also need to make sure the doctor is knowledgeable about ANs, and if not, try to see a different specialist, get copies of the scans for yourself so you can consult several places if necessary. Was your MRI taken with contrast? I am not sure what a close-up MRI means, but getting all of this clarified by a doctor (starting with the size and location of the tumor) is a good start!

Where are you located?
Best wishes to you!

[sweet t]

Hi Novagirl,

Thanks so much for your welcome and post - extremely appreciated - and also sending ya good thoughts for your watch and wait.

I have an appointment with the neurologist next week to look at my mri films closer - and hopefully get a copy of them (great suggestion on even getting it faxed).  I will also ask for their specific experience with ANs.

As for getting a closer-up mri - I guess I'm not really sure what he meant by that either - I just figured that there was some other kind of mri that would look at the tumor closer?  but when I look at other people's mri's on this forum, it seems that they are all from about the same distance - so, i'm confused about it and will definitely ask my doctor more about this at my appt.

As far as getting an mri with contrast - what does that mean?  would i have to take something orally to change the contrast in the picture? does it significantly change the information that specialist would be able to get from the scan? 

I hope that asking all of these questions is okay - I'm definitely new to the whole brain mri/tumor world and quite overwhelmed with it all (in conjunction with finding out whether or not I have multiple sclerosis or something else that is causing my other symptoms).

Oh, and I'm located in Oakland, California.

[novagirl]

Hi Sweet t - I am glad my comments were useful .  By contrast I meant - did they give you an injection about half way through the MRI? Basically, they'd need to pull you out of the machine and give you an injection and then put you back in for more scans. The substance that they inject makes the tumor better visible (shiny) on the scans. My undestandinging is that it is pretty hard to see an AN on an MRI scan taken without contrast unless you already know it's there, in which case it is possible to see a shadow of it on the scans.

You can ask for the radiologist's report to be faxed to you even before the doctor's appointment. The report is just a page write-up of the radiologist's reading of your MRI. It is useful to have. Most centers will fax it to you right away as long as they already sent it to your doctor. You can ask them to make a CD of your scans at the same time.

Being in CA, you have great AN specialists available to you. Stanford is great. Dr. Chang is the authority on the use of cyberknife radiosurgery for AN patients. And then there is also the House Ear Clinic in Southern CA that performs more AN surgeries than any other place in the world (from what I understand). Both places will review your scans if you e-mail them and even consult you over the phone. This forum has a wealth of information. And everyone is extremely helpful. I am in Noverthen VA myself, but have heard only good things of the hospitals that I mentioned. Keep us posted.

[CHD63]

sweet t .....

Welcome to this forum, although I'm sorry you found it necessary to find us.  As novagirl said, having an AN is one time you want the most experienced medical professionals treating you.  As she said, you can send your MRI to several major facilities who will give you free consults.  More info on that available if you decide to do that.

An MRI with gadolinium contrast (they do a scan first, pull you out, inject the dye intravenously, put you back in and scan again) is the only way to definitively diagnose an AN.  The AN will show up prominently as a white blob.

You need to find out how large your AN is and exactly where it is located.  If your symptoms are not related to the AN (numbness in hands is unusual), then the AN may be an incidental finding, which would logically put you in a wait and watch mode.  Obviously, you still want to know what is causing your symptoms and have appropriate treatment for it.

You are in an excellent location for great medical facilities.  Stanford has an excellent radiation treatment center, if you should need to go that route.

As for the insurance, I would certainly hold off on making any changes until you have a definitive diagnosis and recommendations for treatment.  Changing insurance in the middle of a medical issue can be a problem.

Ask away with the questions and please let us know how you are doing.

Clarice

[leapyrtwins]

T -

in my opinion, you should have treatment before your insurance changes.

Treatment for an AN, whether it's radiation or surgery, isn't cheap and you need all the insurance coverage you can get.

Also, in light of the upcoming changes brought on by "Obama care" you never know if you'll be able to choose your own doctor in the next year or two.

So my vote is do it now even if your AN is small.

Jan

[HeadCase2]

Hello T,
  By "close-up MRI", they mean that the MRI's "slices" will be closer together, so that there will be more slices to examine through the inner ear and skull base region, where AN's can be found.  This would help them take a more detailed look at your AN.  Others have already commented on the use of a contrast agent to help make the AN stand out on the MRI.
Regards,
  Rob

[sweet t]

Wow! Novagirl, Clarice, Jan, and Rob! 

Thank you so much for your comments!  Your insights, comments, words, and thoughts are much needed and helpful! 

I was not aware of the contrast MRI option until all of you explained it so well.  My MRIs have not been with contrast, although they are positive that I have AN, which makes me even more curious as to what they saw and how they came to that conclusion. I just tried to get my neurologist appointment pushed up to this week, but with no luck yet - placed on a cancellation list.  Otherwise, my meeting is next week on the 18th.

I will also ask about getting an MRI with contrast - it seems important to view it through that lens.

Thanks also for your thoughts regarding getting procedures done before my insurance changes.  Timeline wise - this means within the next couple of months.  Whew, so much to consider and think about.

My current (and thankfully comprehensive) insurance plan is under the Kaiser system, so, it seems that I would be restricted to practitioners through that source - however, it is extremely helpful to hear that I can get more specialist opinions from Stanford and other places re: radiation (especially because I'm hoping that I do not have to have open skull surgery - that scares me too much!).

Just trying to take one day at a time right now - as well as plan for what is to come.... Eek!

Thank you again for all of your words and sending you all good thoughts with care as well,
-T

[sweet t]

some updates after meeting with my neurologist...

well, seems that in addition to the acoustic neuroma (6.6mm x 13.9mm) - I also have transverse myeletis (neurological disorder) that caused inflammation in my spinal cord in 3 places - which is the source of the constant tingling in my hands.  Because of that with a combination of some lesions in my brain - I am now also on watch and wait for a possible diagnosis of multiple sclerosis (MS) (working on taking deep breaths).  I will go back for MRIs in 6 months and if more lesions are present, more than likely MS is in the picture.

As for the AN - I have an appt. on Friday to get a hearing test with the audiology department so that I can have a baseline test to compare future tests to.  I am also getting an MRI with contrast on Monday morning so that it can be sent with a referral to Kaiser's Neurosurgery dept. in Redwood City. 

My neurologist is also concerned about my insurance changes and wants me to talk with A neurosurgeon about possible treatments and time scenarios.

I am still working on digesting everything.  I was extremely fortunate to have my sweetie with me during the appointment - at some point i went numb - was able to ask questions but didn't have any ability to write the answers done.  thankfully she took amazing notes!

I also wanted to just thank all of you for being on this forum.  Reading your support of one another, your struggles and hope, and your knowledge - has already helped me immensly! Thank you so much!

taking one day at a time...

[CHD63]

Whew!  Probably not the answers you wanted ..... but at least you are moving forward through the process of appropriate diagnosis and subsequent treatment.  I can identify with the numb feeling at your neurologist's appointment ..... I went alone to my post-diagnosing-MRI appointment and was knocked off my feet with being told I had a 2+cm acoustic neuroma.  Like you I asked questions and to this day I have no idea what questions nor the answers ..... the answers all came later when I re-read the papers he handed me and started doing mega-research.

Many thoughts and prayers for accurate diagnosis.  Let us know the results of the MRI on Monday.

Clarice

[sweet t]

thanks everyone for your replies.  it's been a while since i've posted on here.  lots of doctor appointments, MRIs and consultations.  the updates are that i am going in for appointments next week (with radiation oncologist, CT scan for mask making, and closer-up MRI) to prep for cyberknife treatments.  i will have the actual CK treatments through Kaiser in South San Francisco on July 21st, 22nd, and 23rd.

for a few different reasons, i decided that i wanted to do treatments now rather than watch and wait:

-my insurance will be changing
-my symptoms baseline from the AN is good now and would rather either keep my baseline or have the risks occur from a good baseline, rather than wait and have new symptoms arise and work from there.
-am a candidate for radiation now and would rather not have surgery be the only option later

i'm sure that there were other things that weighed into my decision, but those are the main ones that i can remember now

just wanted to take a moment and send love and thanks to all of you for sharing your lives and information over this forum.  it has made a significant different for me to feel empowered with knowledge during a time that at times feel extremely powerless.

much love!

[Jim Scott]

Hi, Sweet T ~

I apologize for somehow missing your original posts but I'm thankful for the update and learning that you're going to have CK treatment now, instead of waiting.  I would have suggested that you do that, had I read your original posts but ultimately, the treatment type and timeframe is your decision.  We always support a patient's decisions and this time, I can do so with complete confidence that you've made a prudent choice.  I trust the radiation procedure will go smoothly and that it will be successful with a great recovery to follow.  Thanks for the kind words for our forum contributors and please know that as your CK date approaches, you'll be in the thoughts and prayers of many. 

Jim

[CHD63]

So glad the decision has been made and you are moving forward with a treatment plan.  You have chosen wisely and you will do fine.  Just be sure to let us know how it all progresses.  We are here for caring and support.

Thoughts and prayers.

Clarice

[leapyrtwins]

Thanks for the update, Sweet T.

Good luck with the CK.

Jan