Results 3 year MRI !!!

[kat]

Hi everyone

Today I got the results of my MRI scan which I only had just about one week ago ! I went to see my GP on another matter (Sciatica)
and as I limped in he said  "Hi you are here for the results from your MRI " Errrr..... no I said and expressed my surprise about how quickly they had come through since last year they had taken a record 6 weeks . Well.... as it turned out there has been no growth from last year which I am really very happy about but the thing that bothered me slightly was the fact that this time the MRI
scans were not examined by the specialist Mr Rowe from Sheffield where I had the GK and who had examined my last three MRI scans . I had gone to great lengths to get this MRI done with contrast and now the results were examined by the Head of the Neurology department in the hospital where I had the MRI . I asked my GP whether the MRI could be sent to MR Rowe in Sheffield
because he had examined all the others and also this MRI was done with contrast to determine if there was any necrosis also as MR Rowe was much more experienced with AN's and the effects of GK . My GP looked a bit embarrased and said that it might  not be that easy since the head of neurology has specially gone out of his way to get the results quickly since I had complained about the slow return last time . Also I got the impression that the head of neurology in my local hospital was a little short of GOD in the eyes of the profession .  Who am I to complain about such speedy delivery of good news ?

What should I do folks I have a very good relationship with my GP who was a great help in getting me to have GK when only surgery was on offer from my ENT specialist . Should I be happy with just the news of no growth ? I do not know what necrosis
even looks like on an MRI ??  Anyway here in UK on the NHS we do not get to keep our MRI scans anyway and I have not even seen the last two .  I have no symptoms at all from my AN at the moment so maybe I should be happy and just put up and shut up . After all apart from this damned SCIATICA I am feeling just great !!
(By the way does anyone out there have good tips with dealing with sciatica ? At the moment wine seems to be the only thing that dulls the pain )

Best regards   Kat

[JeWeL41]

Hi Kat, we are now allowed copies of all our records including scans. phone the hospital and they will direct you to the people who will give you the forms and help with the application. It is a bit lengthy and there is a charge but I think it was maximum 50GBP(sorry pound sign has disappeared from my keyboard!!) I think they are called patient link but the hospital will know. Once you have a copy you can ask your specialist to look at it without necessarily involving your GP. good luck

[kat]

Hi JeWel

Thanks for that . It seems like a good idea . In many ways I just wanted a definate result which showed that the AN
was dying so that I could get on with the rest of my life . I realise that when you have GK it means that you are on
another watch and wait just to see if it has worked . I have no reason to think that it has not worked since no growth has
got be pretty good news .

Regards Kat

[cheeka]

hi,
 i would get a copy of the MRI stating that it is for your own personal records
and then i would personally take it to the other doc.
or you can have dr. rowe call the MRI place and request a copy. maybe
but i would rather schedule an appt w/rowe and show him the MRI

[sgerrard]

I'm betting that Dr. GOD the head of neurology is right, and you have no growth, so congratulations on that, it is always good to hear!

If you get to look at the MRI, the necrosis is supposed to show as a darkening of the AN, where it was lit up (enhanced) before.

I think it is a smart move to get copies of your MRIs if you can, having those records might one day be very useful. Whether you want to get an opinion from Mr. Rowe is up to you, but if you get the chance, why not.

Steve

[HeadCase2]

kat,
  Congrats on the good MRI report.  Having your own copies of your MRIs on CDs is a good thing.  You can make your own non-professional judgement about any change in size or appearance of the AN.  And you'll have data in-hand in future years if you visit other doctors.   Not to mention that they're facinating to see.
Regards,
  Rob

[4cm in Pacific Northwest]

Kat,


I am happy to hear the things are looking on the up and up for you.

Just a heads up…

I had an MRA and MRI done at the local hospital close to me. I was very leery of the results. I made a copy and sent it to my original surgeon (out-of state) and he has his own neuro-radiologist went over it. Both have much more experience than “the localsâ€? here - that did the follow-up  MRI/MRA (who often don’t see many AN tumors and post surgery follow-ups.) Turned out the local interpretation, a local ‘neurologist’ was involved, was full of errors and artifact (i.e. computer generated image and/or static)…

Does ‘Dr. God’ (i.e.“ "head of neurology� )need to even know you are going over his head.?

RE "Anyway here in UK on the NHS we do not get to keep our MRI scans anyway and I have not even seen the last two . "

In the USA it is our patient right to have a copy of the MRI and report- not sure about Canada (where I am actually a citizen but I reside in the USA).  Try to obtain a copy of the MRI CD and send it with a covering letter to your “originalâ€? surgeon. Your surgeon will probably want to know, first hand, how you have progressed anyway. I also know that my PCP (i.e. GP)  is not near as versed as my neurotologist surgeon on my case specifics… and sometimes the “middle personâ€? can get in the way. My PCP is a generalist (knows a little about a lot of things) - my “neurotologistâ€? is a specialist (knows a lot about AN tumors and ENT issues specifically).  Either you neurotologist or your neurosurgeon are the ones that need to read these directly- with the assistance of their own neuroradiologists.

I would keep pushing this issue further.

Keep moving forward.

4

[Esperanza]

Hi everyone

Anyway here in UK on the NHS we do not get to keep our MRI scans anyway and I have not even seen the last two .  

Hi Kat,

Pleased to read your news although I think I would find a way to get hold of a copy for Mr. Rowe to put your mind at rest.  I am always a little wary of 'Dr. Gods' - anyway he's not the one who's opinion you are most interested in and that is what matters... 

I have managed to gain possession of my MRI scan films and a CD of it (they also gave me films from USS scan I had a couple of years ago after I had
peritonitis so I get to look inside my abdomen too if I like!).

x

[calimama]

Hi ,

I am newly dianosed AN in Toronto Canada.
I am considering GK treatment. IS your SCIATICA a result of the GK? I had a laugh (sorry) about the wine comment.
To what ails ya!

[kat]

Hi everyone

Thanks for your replies . I will contact the MRI department tomorrow and ask  if I can buy my MRI so that Ican send it to
MR Rowe who I am sure would like to see how I am progressing especially if it is good news . We will soon be on our travels in our motorhome (or RV as you guys call them in the USA ) to France and Italy for a few months so I will have to get MR Rowe to email his opinion to us whilst we are on our way .  I feel happier about it all now and have finally decided to celebrate tonight with a bottle of champagne since I am sure that the results are positive .

Calimama you cannot get sciatica from GK since it a pain in the leg caused by a nerve problem in the spine but (touch wood) it  has been a lot better for a few days now .

Regards to all Kat

[mema]

Kat,

I feel for you.  I have SCIATICA in my left  leg.  I've been to chiropractors the whole gammin.  Just recently I bought a pair of crocs .  A rubber shoe that looks much like a Dutch wooden shoe.  The reason I bought them is because someone told  me of their back and leg problems and how these shoes alleviated the pain.  O.K.  I was game to try anything.  They look like they have no support, they look too big, they actually look like the worse shoe a person with back or sciatis nerve problems could wear.  Well, they work.  I wear them all the time.  On occasion when I have to put on a pair of regular shoes I immediately within a few hours have my sciatic pain.  I know there are alot of immitations of them out there.  My husband  has a pair he bought at wal-mart, but he doesn't have sciatic or back pain.


                                                                       mema

[kat]

HI Mema

Thanks for that bit of information . I was thinking about buying a pair of crocks anyway for our camping trip because they are rubber and might solve more problems than than just what to wear on trip to the campsite showers and the beach . I will keep you posted as to any success with sciatica they might have .

Regards Kat

[kat]

HI Everyone

Just an update on my MRI . I did manage to buy a cd of my recent MRI scan which I have been studying and the only
thing that I can conclude form it is the fact that I do have a brain but I cannot even identify my AN for sure let alone any
signs of necrosis ! These things are obviously better left to the experts to examine !! I do know that a copy has been sent
to MR Rowe in Sheffield and I hope that I will eventually get his opinion on the scan .

Regards Kat

[ceeceek]

Congrats!,
I get copies of EVERYTHING>>>>drive my dr's nuts..but it has helped and now with the new programs on CD, I can actually look and see for my self..my follow up MRI, was without contrast,,and I guess that is standard..none of my Dr's were concerned about lack of contrast, so take the good news!
Glad all is going well.
Ceeceek

[ceeceek]

Also meant to add......try the sagital view...it is looking from the side, going in.....once you play around with it a little you can get used to reading them...I always start at the sinus area and work my way back...fun to see bulging eyeballs!! but gives a good point of reference.....just keep at it.
Ceeceek