new "area of concern" found on MRI

[worriedwife]

I learned throughout this process to get ask for copies of my husbands mri's to keep at home. I do this for two reasons. One, I have it in case I ever need them to show another doctor, and two, i have them to refer back to because I tend to forget as time passes. They are amazing. Now, you can pop the disc right into your computer and read them. Being the obsessive compulsive person I am, I have studied hours on end about his condition and viewed and reviewed the mri's over and over. I was never sure what I was looking for, but the basics i understood.

This time, something stood out. It was his next 6 month mri, and they added the cervical spine. He hadn't had a cervical spine in 18 months. I was particularly interested in this as the last one was 1 1/2 years ago and at the time, there seemed to be what they described at the time as a "nonspecific focal lesion." That never sat well with me. We did a nuclear bone scan back then, and it was inconclusive. Needless to say, now I am in my home, reading the current written mri results that say nothing about the c-6 area where that lesion was, and I'm looking at the mri on my computer and I clearly see "something" there. I go back and compare the pictures from the mri 18 months ago. Its obviously much larger now. I called the radiologist and he basically hung up on me and told me that I'm not a dr, and I shouldn't be looking at the films. I then called the neurologist who ordered the films. I had him paged. He returned the call, and was shocked. He never had a call like mine. I was adamant that I saw something.

He believed me and asked me to drive all the discs I had down to him. He reviewed them, and long story short, now we have what is called "an area of concern." It was brought to the tumor board, and it appears that there IS a tumor inside the bone of the vertebrae at the c-6 level. It seems its been there all along, but now its much larger obviously. The radiologist who read the films this time never even mentioned it at all. had I not looked at them and said something, another 6 months would have gone by. He is now going for the infamous PET scan I have been fighting for since the original diagnosis 2 years ago.....and we shall see. Please advocate for your sick loved ones. The doctors work wonders but no one is perfect.
Say a prayer.................

[caregivingsis]

Keeping you in my thoughts and prayers.
Maureen

[Todd]

Interesting tid bit of info my doc said very frustrated in passing when he was looking at my MRI report at the time of my diagnosis. He said they had been having a problem with the radiologists actually looking at the scans. He said that they were having the techs look at the scans write up the report and the radiologists were just passing those reports on.

If your radiologist wasn't actually looking at the scans, he certainly would have missed something that you saw. Techs aren't trained to look at scans and it is malpractice for them to be doing so. The MRI places get so booked up sometimes, they cut corners.

not saying this is what happened in your case, but it's worth considering.

one thing is for sure, the secret that everyone needs to know about healthcare is that we have to be proactive in our own healthcare if we are going to get the results we want.

todd

[abprops]

Hi

The Radiological Institute in the UK insist that a standard statement that there is serious wear and tear on the lower spine is attached to all X-Rays of men over 60.

My medical center GPs took this as proof that I had sciatica due to serious wear and tear and that the PTs conclusion that I had a stiff lower back due to lack of exercise was correct. Despite the fact that I was hill walking all day for seven days while the sciatica like symptoms increased slowly when in bed that week.

Fortunately a gastroenterologist was telephoned to asked about blood tests which showed that I had a highly inflamed liver. My GPs conclusion I was an alcoholic. The GE looked at my medical file to see why I was claiming there was nothing wrong with my spine, denying being an alcoholic and asking to see a psychiatrist. He spotted the X-ray ignored the standard statement and looked at the image. Authorised a series of CT scans. When I arrived for the scan I noted others being warned not to leave for some time. Others going in being asked if they had anyone with them etc. I wondered why I was simply asked to come this way and was informed don't worry you will be a quick in and out. When I asked about contrast no that will not apply to you. Fortunately the Consultant GE turned up and directed the process so the technician and nurse were stressed and I had the full works.

Referral to CNS, MRI scan. Same technician at MRI fortunately what do you thing is being done says he, full body scan say I, no says he mid abdomen to mid thigh. But what about my knee and my inflamed liver says I, I can adjust the start point to taken in your lower liver by starting at the brest bone.

Nov 2008 CNS can you come and see me urgently, you have a SPT but boy are you lucky had we scanned 1/2" lower as planned we would not have found the tumour and I would not have seen you.

March 2009 out patients clinic, an enhanced image from the scan shows a small tumour in the lumbar area of your spine but don't worry we will monitor it with six monthly MRI scans.

My recovery goes well until June 2009 then reversal symptoms change problems.

August 2009 second outpatients clinic what second tumour never heard of such a tumour. Six monthly scans you will be lucky to have one more 12 months from now.

Sept 2009 meeting with Consultant Neuro surgeon yes there is a second tumour all a mistake. Was not on medical records because there was some debate as the second tumour only shows up in one view or 'cut' from the MRI scan. However general medical team consensus is that the tumour is there.

Interetingly when the PT found my lower spine to be stiff perhaps it was the effect of the second tumour in the lumbar area of my spine?

I ask about a full body scan as I understand Schwanomas can appear anywhere and my MRIs thorocolumbar only. Yes but would know from symptoms. But what about the 1/2" error says I, well true says he but generally I would know!

Symptoms increase cannot sleep, constant cramps symptoms previously never below knee now in lower leg and foot then in shin muscles. I feel like I have run a Marathon or two during the night some mornings. But I cannot describe my cramps, to me cramp is cramp in the dark. I am back to not knowing the words just as in 2008 when I battled to prove I did not have sciatica.

I find that if I move around put my limbs in various positions and twist my upper body I cam stop the symptoms so something is moving inside. The position of legs arms etc never the same. Perhaps this is why I run the marathon must nights.

CNS shows me the MRI scan with the single image of the tumour and the the three other images with varying degrees of black squiggly lines he believes these have something to do with the disappearing tumour. I ask if the baulk of the tumour does not have a blood supply hence it Santo be seen.

Worried abprops
Could my tumour or part of it be inside the bone? What does the "area of concern" look like? Worriedwife???

What is a 'nuclear bone scan' and a 'PET scan'?

Morris

[Vicki-NewZealand]

Worried wife... thoughts and prayers are with you.

I too have learnt over the years to get copies of every single record from the hospital that relates to my son's health. We have a relatively small health system here when compared to many internationals and this can be challenging when faced with problems that aren't as common here such as NF2, IIH and now my boys mengingioma and ependymoma.

Keep demanding answers and don't rest until you have an explanation that makes sense and have been heard. It's blimin hard work and feels like you're going into battle every day. Stay strong - our thoughts are with you.

V

[abprops]

Hi Worriedwife

What happened about the area for concern?

Morris

[worriedwife]

Nothing.....being monitored with full set of MRI's every 4 months.
He seems fine right now....guess thats all I can ask for.
Just had another set a few weeks ago-nothing was mentioned about it AT ALL......just said see you in 4 months.