Just received another letter from NHS for another MRI with contrast dyes. Scared

[iz2014]

Hi

I was diagnosed on Thursday, I had a short MRI about a week ago. I didn't manage to stay in long enough for lots of pics. Turns out I stayed in long enough for them to see an AN. My doctor contacted me and was very quick to tell me I was to see a neurosurgeon and have surgery as soon as possible. I did as I was told and my new doctor (I have just moved) has referred me to Broomfield hospital. I am waiting for another letter from the nhs neurosurgeon to ask me in to see him or her. But I literally have just received another letter telling me I need another MRI with dyes they inject into your bloodstream to show up your blood flow or anything else in your brain. Don't know if  I'm meant to  to skip this as it was obviously sent before my doctor made his mind up about me having surgery... possibly a communication problem between hospital and doctors. But I'm thinking of going anyway as it may help with my treatment options.

I'm just really scared now as I'm worried they think something else could be wrong. Is this sort of recall to the MRI department normal? Are there other scary problems associated with an AN? Could I be in more trouble than I realise? I look at my 20month old daughter everyday and worry myself silly... feel so shocked all the time. My symptoms are mild which makes me think it's small... some slight tinnitus in left ear, only heard when it's silent around me. Occasional feeling that the floor is moving... only once a month I'd say. Deafness in that ear. That's all... surely that's a good sign, right?

[arizonajack]

I suspect that the recall for the MRI is because the first one was incomplete and may not have gotten far enough along for the contrast dye to be administered.

A complete MRI with contrast is of critical importance in diagnosing and treating of ANs and you are destined for several in your future. (I've already had 4 with another coming a year from now.)

You seem to have some claustrophobia when it comes to being in the machine. Talk about that to your doctor and to the Radiology people. They'll give you something to make the experience more easy to handle.

Meantime (I'm serious) practice by finding a barrel or drum that you can lie in with your head, neck and torso covered (or improvise wrapped in a blanket) while playing sound files of an MRI machine for a half hour.

https://duckduckgo.com/?q=sound+files+of+mri+machines

[Hokiegal]

Agree with Arizona Jack.  Clear imaging is essential.  All of my MRI's were done with contrast.  I don't think it's anything to worry about

If you are claustrophobic, in addition to Jack's suggestions, you might want to try some relaxation techniques.  I use yoga breathing, and the technicians always comment on how still I am in the machine.  Basically I just slow down and deepen my breathing and visualize inflating and deflating a balloon.  Sounds kinda flaky if you're not into that sort if thing, but it helped me and I'm an engineer

[iz2014]

Thank you both for your replies. The practicing sounds good. And relaxation technique may help me loads, so I'll definitelytry it.

And now I know that the MRI with contrast is part of the routine examination and investigation of ANs I feel much less worried. I was so concerned that it meant something else was up, but now I know not to jump to conclusions. If it's going to help my treatment then I'm sure I can stick it out.

Thanks again :-)

[Alison]

Hi iz1014,

I'm in the UK and used to live near Chelmsford, so know Broomfield Hosp, if thats the one you mean in Essex.

Sorry to hear you have an AN. I was treated with radiosurgery in Dec 2012. I've posted lots about the UK experience for us those of us on this side of the pond. Please ask anything, and I'll try to help. Did they say how big the AN was yet, and are you looking at Addenbrookes or London?

Alison x

[iz2014]

Hi Alison,

Thanks for your message. At the moment I'm waiting to be called to Broomfield in Essex to see a neurosurgeon. I hate waiting for these NHS letters, I like everything to be done yesterday! I don't know how big the AN is yet, I guess the contrast will answer that. My GP said I needed surgery otherwise the AN may pop out of the ear canal and cause pressure. Thing is I don't know if he's saying that from experience or because he can see that's what is going on in my ear. Really hoping the AN is still inside the ear canal.

How big was yours? Did you get to choose what treatment you had? How long did you have to wait for treatment?  It's really good to hear from a UK citerzon as I don't personally know ANYONE who has gone through this before, especially in the UK. I may be tapping you on the shoulder for the next few weeks lol, sorry! How many MRIs do the NHS call you up for after your treatment? Would love not to have to go into surgery, if it's treatable with radiation I'm probably going to go for that. 

[Alison]

Hi again,
glad you got back, it can be v lonely if you don't know anyone in the UK. There is a UK support site I'm on which is a closed facebook site you can request to join. I'm not on facebook but use my sons page to chat on there. I can give you the link if you PM me.

I'll try and answer your questions, but firstly what your GP is saying sounds highly questionable, even rubbish to be frank! Most ANs are already out of the ear canal (IAC) and protude into an area called the CPA. They all cause pressure of some sort.

GPs know little about ANs in my experience as they are so rare. I know someone in Southend on the UK support site who saw a neurosurgeon at Addenbrooks and he decided for surgery. As far as I know Broomfield is not a centre for AN treatment and you may be referred elsewhere. There are only a few centres in the UK that treat ANs either with surgery or for radiosurgery, so most of us have to travel. Who are you actually seeing at Broomfield? You need to see someone with experience of ANs.

My history is I now live near Bristol. I had bad imbalance/ dizzyness and saw the ENT guy first who ordered the MRI that found the AN. I was ref to a neurosurgeon in Bristol (the major Brain Tumour centre for the South West) who said he only liked to operate on 3cm or larger as there are risks with surgery, and he referred me to oncology for radiosurgery. I was terrified of surgery anyway and wanted radiosurgery. My AN was 15mm approx then. It took 3 to 4 months till treatment (it was cancelled once, as often happens).

My symptoms got worse since, with bad tinnitus and gradual hearing loss in the AN ear, also imbalance is much worse. My AN has got bigger prob swelling, and I have to wait another year for the next MRI. But surgery can leave you with other side effects, and always carries risks. So its a difficult choice. A good neurosurgeon will go through all treatment options. It all depends on the size of the AN and your age and your own preference. Sometimes people watch and wait if the AN is small.

Your GP should have the radiologists report on your MRI, I'd ask him the size of the AN. As I say he can't possibly know the prognosis unless he is an experienced neurosurgeon!

Alison x

[Alison]

PS forgot to say I didn't have contrast and the AN was found on MRI.

Alison x

[iz2014]

Thanks for your message Alison.

I imagine I'll be referred to Addenbrooks then. Looks like I could be looking at a year of different meetings with neurosurgeons and all the rest. Thanks for letting me know about the FB group. After I have seen the neurosurgeon and have more information I may well decide to join.

Thanks again.