Author Topic: Advice needed  (Read 8370 times)

Derek

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Re: Advice needed
« Reply #15 on: July 10, 2006, 05:40:24 pm »
Hi Butterfly...

I am also UK based residing in the North East of England. The cost of an MRI scan with contrast at the Nuffield Hospital in Newcastle upon Tyne is £395.

Hope you get sorted out ASAP

Best Wishes

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Obita

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Re: Advice needed
« Reply #16 on: July 10, 2006, 07:27:19 pm »
Hi Butterflyhugzs:

I see Derek gave you the cost info.  Is that a Euro 395 - about $500.00 american dollars?

I just looked up my last MRI cost - $3700.00 (for both with and without contrast) and my insurance co.
paid only had to pay $2000.00 because they get a discount.............

Are medical costs that much different in England than the USA?

Wishing you good luck,  Kathy

ps:  there was a woman on this board a month ago that was POSITIVE she had an AN because of her symptoms.  She did get a MRI with contrast and it was negative......I sure hope you are as lucky as she is.

Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

butterflyhugzs

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Re: Advice needed
« Reply #17 on: July 11, 2006, 11:18:53 am »
Hi Phyl
Thanks for your post; I will make sure they do a contrast this time.
I feel the NHS is kind of like pass the buck; no one wants to take responsibility for any of the patients and will refer you on. When I went to see ENT dept they said they don’t need to see me anymore so I have no idea who will get back to me with the results.

Hiya hugzs! :)

Yes, all of my MRI have been with contrast (usually, the start the process without constrast to get a regular view... then come back into the scan room to inject the contrast... you don't feel the contrast at all as it's doing its thing).

Oh, many of my UK friends also share with me their being passed around in the NHS system. I have a dear friend with gyn issues... passed around, overlooked, gets appt, goes to dr office to find out they left the office without informing her, she goes home, blah blah blah.  I know many go to the UK for the NHS (free medical) but I have to say, for my friends that have been passed around, my heart goes out to you all. Hang tough, being a royal pain in the arse and be persisitant to get that MRI.  I have faith in you to stand your ground and get the medical attention you need. :)

Phyl

Thank you Phyllis for your reply
It is good to talk to someone who also has fms, when you had MRI did you have the contrast? My first MRI  I did not have contrast but did have some of the symptoms but not as bad as they are now. That was 18 years ago. The NHS is a bit of a nightmare, I am not really under any health professional at the moment they just refer me from one dept to another, pass me around and ask me the same questions but don't do anything. I am amazed that they are actually going to do an MRI
Thanks again

 
Hi Butterfly... welcome!  You are no bother. I am also a sufferer of FMS (fibromyalgia syndrome) but I understand your concern.

the true/only way to determine if you have an AN is through the MRI. Now, I have had some dealings with the NHS in the UK (my beau lives in SW London/Herne Hill and have had to first hand experience A&E and NHS) but Tony, on this site, is from the UK, rather versed and may be a best supply of reference in dealing with the NHS to help get you an MRI sooner than later. I also know the British Acoustic Neuroma site is not as active as this one but may have some info there as well.  I have had some of my English friends weed their way through the NHS recently and have gotten into dr appts and tests much earlier than originally booked.  I'm not sure if you are currently working with an ENT (ears/nose/throat) dr or a neurosurgeon, but like you, many brushed off my situation due to my FMS... I was the persistant one and hoping that your persistance, a little guidance (from Tony?), etc, will get you the MRI sooner.

Before you start to worry, let's see if we can get you that MRI first. No need to worry until the test is done and unless it comes back showing an AN. There could be many reasons for your symptoms, but we are good ears here as well and a good start to gaining your diagnosis.... (we give huggles too!).

Hang in there....
Phyllis

butterflyhugzs

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Re: Advice needed
« Reply #18 on: July 11, 2006, 11:19:55 am »
 Hi Jim
Thank you for your post, it is difficult to get anyone to listen to you.  I recently had an appointment at the rheumatologist department and the Dr asked me loads of questions done a brief examination and then said I think you may have fibromyalgia. (I had been diagnosed years before) what a waste of time.
I have been told try not to take tablets and just cope with the pain. 
My daughter age 19 had a terrible chest infection had a chest x-ray and was told it was cancer.  They then said they got her results mixed up with another woman. My husband has had an on going problem with his eye, he says he feels like an eye inconveniently attached to a person.

Butterflyhugz:

My wife (age 53) has suffered with fibromyalgia for the past dozen years and so, I have some understanding of your problem.  The fibromyalgia is either ignored by some physicians or else it's used as a 'catch-all' diagnosis by others.  Maddening!  Frankly, she has never had most of the symptoms you mention, such as tinnitus.  Occasional (rare) facial pain, yes, but no dizzyness or ear problems.  However, as we are all individuals, it isn't wise to make direct comparisons to others, even other people with fibromyalgia...so I won't.   :) 

It appears as if you have already decided to get the MRI scan, which it seems is the best course of action for you, now.  Too bad that you have to wait so long to get it.  Acoustic neuromas may grow slowly - but they can also have 'spurts' of growth - which may be what is happening in your case.  The MRI test will  solve the mystery. 

I have no idea how the U.K.'s National Health System bureaucracy 'works', (a relative term) but can you apply for a waiver of some sort to get 'moved up' on the MRI-candidate list?   If so, I would do it....or find a physician to recommend you receive an MRI scan, as soon as possible.   When it comes to diagnosing AN's, time is not necessarily on your side because removal (via radiation) is much easier when they are small.  I only wish I had responded to my symptoms and been checked out years earlier than I was. When I eventually developed symptoms severe enough to drive me into a doctor's office, the resulting MRI my doctor ordered (and the diagnosis of an acoustic neuroma it clearly showed) necessitated a surgical removal due to the size (4.5cc) of the tumor.  Fortunately, the surgery was extremely successful and I am well on the way to a complete recovery, sans AN, with the only permanent damage being a total loss of hearing in my left ear, which was expected - and manageable.  I suggest that you try to get the MRI as soon as possible.






butterflyhugzs

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Re: Advice needed
« Reply #19 on: July 11, 2006, 11:34:31 am »
Hi Derek
Thanks for the price, I Live in Norwcih, I will have to start saving. :)

 
Hi Butterfly...

I am also UK based residing in the North East of England. The cost of an MRI scan with contrast at the Nuffield Hospital in Newcastle upon Tyne is £395.

Hope you get sorted out ASAP

Best Wishes

Derek