Going out of my head!

[butterflyhugzs]

Hope you don ‘t mind I just need to talk, I had my MRI scan a week ago and I am feeling anxious about the results I just want to know so I can deal with the situation.
I am in the UK so it was on the NHS and to me it seems like the left hand does not know what the right hand is doing, so much conflicting advice.
I only had a short MRI scan 7 mins without contrast as this is what the DR ordered. I was told before the scan that it will take a few days to review the pictures then who ever ordered the scan would get in touch with me to discuss the results.
Well on the day of my scan when it was over I was told to make an appointment within the next two weeks if someone did not contact me sooner, this is fast for NHS. I wondered why they had said this; would they have been able to see something straight away on the scan?
Anyway after a few days I phoned the ENT dept as they referred me and was told that I did not have a follow up appointment at all as when the Dr asked for the scan he did not expect to find anything and that she would keep an eye out for my results and give me a ring if I needed an appointment.
I think, as they have not contacted me, that could be good news. But then on the other hand my symptoms are so bad if it is not an AN what is causing all these symptoms that constantly plague me. They don’t like you calling as they are so busy at the hospital but don’t realise how anxious it is waiting for the results. You can’t keep calling as they get annoyed and make you feel like a nuisance
I do have an appointment at the masking clinic to help with masking the tinnitus in a week so I will ask if they know anything then.
Sorry for the moaning I just don’t have much faith in the NHS, last year my daughter age 20 was told that she had lung cancer about 3 weeks after her x-ray for a bad chest infection. Then they realised that the person with lung cancer had had a breast removed. Not my daughter. So she was given some other poor woman’s results. I wonder if this woman got my daughters results and thinks she is in the clear.
The NHS can do a lot of good stuff but I am just sick of getting the run around and needed to vent. I know a week not long; it just seems so long when you’re waiting.
Thanks again
Abbie

[Derek]

Hi Abbie from your UK pal...

Pleased to hear that you have had your MRI scan but the resulting cunfusion re the NHS administration process does not surprise me!

I presume that your GP initially referred you for the MRI scan? If that is the case it is normal practice for the referring GP to be notified of the MRI result in the first instance.

Leave nothing to chance and remain in total charge of this sitiuation. I suggest that you first contact your GP for advice and take it in logical steps from there.

Regards

Derek

[tony]

There`s more of us Brits around than you might think !
I share your observations re the NHS
- It really is the "good, the bad, and the ugly."
- When its good - its very good - When its bad - Oh dear...
Generally, bad news here tends to travel at "Light Speed"
If there is/was a problem you may already have had the call.
If it is nothing to report - a week - a month, is the going rate.
The short MRI (7mins?) puzzels me - I have never got out in
under half an hour. It sounds like your Doc is still looking for answers
At one level, he is being extra careful
- and at another - it sounds like early days yet
Depending on the outcome we, (brits),
maybe able to suggest some reliable contacts in the UK
Good Luck
and Best Regards
Tony

[butterflyhugzs]

Hi Abbie from your UK pal...

Pleased to hear that you have had your MRI scan but the resulting cunfusion re the NHS administration process does not surprise me!

I presume that your GP initially referred you for the MRI scan? If that is the case it is normal practice for the referring GP to be notified of the MRI result in the first instance.

Leave nothing to chance and remain in total charge of this sitiuation. I suggest that you first contact your GP for advice and take it in logical steps from there.

Regards

Derek

Hi Derek, Thanks for your response. How are you doing? It was ENT that referred me due to hearing loss and tinnitus and dizziness. They did not ask me about any other symptoms.
I did call my Dr’s but the receptionist said to contact the consultant’s sectary. I thick that was who I talked to last week so I don’t want to seem to pushy.
I feel totally deflated about the whole situation as I keep being referred to different people who seem to just take one of my many symptoms and refer me on.
Thanks again
Abbie

[butterflyhugzs]

There`s more of us Brits around than you might think !
I share your observations re the NHS
- It really is the "good, the bad, and the ugly."
- When its good - its very good - When its bad - Oh dear...
Generally, bad news here tends to travel at "Light Speed"
If there is/was a problem you may already have had the call.
If it is nothing to report - a week - a month, is the going rate.
The short MRI (7mins?) puzzels me - I have never got out in
under half an hour. It sounds like your Doc is still looking for answers
At one level, he is being extra careful
- and at another - it sounds like early days yet
Depending on the outcome we, (brits),
maybe able to suggest some reliable contacts in the UK
Good Luck
and Best Regards
Tony

Hi Tony
Thanks for your post, where are you from in the UK? I live in Norfolk now but am originally from Essex.
I was initially told MRI would be 15 mins but then was told it would be only 7 mins as they were looking in one place, looking for AN. 
I have had fibromyalgia for over 18 years now, kicked in bad with my last pregnancy but had symptoms before this so I thought all the symptoms I have been experiencing were fibromyalgia. I did have MRI scan years ago which did show something and then later was told it was clear so still a bit confused over that one.
My symptoms have got gradually worse over the years and now I find it difficult going our due to strange feelings in my head drunk feeling along with fatigue I have not left the house alone for about two and half years.
The symptoms are driving me crazy all my left side, tinnitus really high pitched and loud, daily headache and head pains when I sneeze etc hearing loss, terrible facial pain and of course the drunk feeling without alcohol. But I am told just take pain killers. I am just feeling fed up today so sorry to vent but as I am not taken seriously I find myself handing around forums trying to see if other people have had similar experiences. Thanks for listening
Abbie

[Derek]

Hi again Abbie...

I am fine thanks...just sorting out a few problems with my medical insurers prior to embarking on proposed GK treatment at Sheffield albeit I intend to continue with the 'wait and watch' procedure until my next scheduled MRI scan in April.

From what you say it would appear that you should endeavour to make early contact with the consultant who authorised your MRI scan in order that the results can be made known to you which usually takes about 14 days at most following the actual scan process being carried out.

Please don't hesitate to ask if I can assist in any way.

Best Regards

Derek

[Battyp]

I would start back at square one and ask for an mri w/ contrast. 
The wait is the hardest part!  I'm so pushy I go pick up my films the next day with a typed report to hand carry to my doctor even if my appointment is weeks away....but I'm sure the us has different procedures than the uk.  Best of luck to you!

[tony]

I am in the Reading area - 20 miles due west of London.
Your symptoms sound like a potential AN - But only the MRI can really confirm this
Suggestion : in future when you are having an MRI done - ask, and pay for, your own
copy  - it will be much easier to meet with A.N. other Doc/surgeons
for second opinions once you have these.
You may yet be able to get a set of the recent ones (£50?)
Originally my list of symptoms was put down as a sinus infection
- then the MRI came through and we all knew better.
Finally I wrote a "Ten commandments" of what to do when you
are NF2, and on the NHS (I dont think you are NF2,
but some of the stuff is quite rel for you)
Let me know if you want it
Best regards
Tony

[kat]

Dear Abbie

I am also from the UK . When I had my MRI over 2 years ago it was over one month before I had the appointment
telling me the results (NHS of course ) I had very few symptoms and was not worried enough to hurry the results along since I thought that it was just routine check to see why my hearing had not got back to normal after a perforated eardrum earlier on in the year . I knew it was not good when my ENT specialist said " This is not what you wnat to hear "
and then went on to tell me that I had a 2.2 cm AN . It is now 14 months after I had GK in Sheffield and so far so good
I could not really fault the treatment that I received on the NHS but it was a long and confusing road to finally get refferred
for the treatment of my choice . Since you are having such unpleasant symptoms I hope that you will get a definate diagnosis from your MRI scan soon . Perhaps you should discuss your fears with your GP  about getting a wrong diagnosis
following the dreadfull mix up in your daughters case and get your GP to hurry things along . I wish you luck and If it turns out to be an AN I am happy to share my AN experience with you .

Best Regards Katarina
 

[butterflyhugzs]

Hi Derek
Thanks for your reply, I hope you sort out your problems with the medical insurers and you can move forward in your treatment. Is it difficult to have to wait for you next scan when it is so far away? how do you cope with this?
I have a friend who is a nurse at the hospital where I had the scan and asked her if she is allowed to look up results. To my surprise she said that she had already looked and they were not in on Sunday. She is not working this week but I am want to ask her to look again but don’t want to put her in an awkward position. I will let you know my results either way. Thanks again
Abbie

Hi again Abbie...

I am fine thanks...just sorting out a few problems with my medical insurers prior to embarking on proposed GK treatment at Sheffield albeit I intend to continue with the 'wait and watch' procedure until my next scheduled MRI scan in April.

From what you say it would appear that you should endeavour to make early contact with the consultant who authorised your MRI scan in order that the results can be made known to you which usually takes about 14 days at most following the actual scan process being carried out.

Please don't hesitate to ask if I can assist in any way.

Best Regards

Derek

[butterflyhugzs]

I would start back at square one and ask for an mri w/ contrast. 
The wait is the hardest part!  I'm so pushy I go pick up my films the next day with a typed report to hand carry to my doctor even if my appointment is weeks away....but I'm sure the us has different procedures than the uk.  Best of luck to you!

Thank you for your advice. I do find it difficult in NHS; the consultants think they are so important that we should be grateful when ever they decide to tell you anything. They seem to tell you the minimum of information on anything and you have to gradually piece things together. For example they referred to my left ear as my� bad ear� and said I have some hearing loss but did not give me anymore information than this its not until you get home you regret not being ready to ask them to tell you more information. I wish I was pushier but hate to offend people so I just worry alone at home and post on this forum to get the support that has helped me get through this.

[butterflyhugzs]

I am in the Reading area - 20 miles due west of London.
Your symptoms sound like a potential AN - But only the MRI can really confirm this
Suggestion : in future when you are having an MRI done - ask, and pay for, your own
copy  - it will be much easier to meet with A.N. other Doc/surgeons
for second opinions once you have these.
You may yet be able to get a set of the recent ones (£50?)
Originally my list of symptoms was put down as a sinus infection
- then the MRI came through and we all knew better.
Finally I wrote a "Ten commandments" of what to do when you
are NF2, and on the NHS (I dont think you are NF2,
but some of the stuff is quite rel for you)
Let me know if you want it
Best regards
Tony

Hi Tony
Thanks for your post; I did not know they would let you buy your MRI Pictures.
Who do you ask? I don’t have NF2 is this what you have? Do you have AN both sides? I would be interested to see your 10 commandments.
Thanks again
Abbie

[butterflyhugzs]

Dear Abbie

I am also from the UK . When I had my MRI over 2 years ago it was over one month before I had the appointment
telling me the results (NHS of course ) I had very few symptoms and was not worried enough to hurry the results along since I thought that it was just routine check to see why my hearing had not got back to normal after a perforated eardrum earlier on in the year . I knew it was not good when my ENT specialist said " This is not what you wnat to hear "
and then went on to tell me that I had a 2.2 cm AN . It is now 14 months after I had GK in Sheffield and so far so good
I could not really fault the treatment that I received on the NHS but it was a long and confusing road to finally get refferred
for the treatment of my choice . Since you are having such unpleasant symptoms I hope that you will get a definate diagnosis from your MRI scan soon . Perhaps you should discuss your fears with your GP  about getting a wrong diagnosis
following the dreadfull mix up in your daughters case and get your GP to hurry things along . I wish you luck and If it turns out to be an AN I am happy to share my AN experience with you .

Best Regards Katarina

Hi Katarina
Thanks for your Post it really helped me, My friends and family are saying it must be good news as you have not heard anything but my symptoms are a constant reminder that something is not right. My headaches and head pains are getting worse and I have had two migraines this week and its only Thursday. Yesterday had terrible stabbing pains in my left eye with the migraine. It is terrible that you had to wait a month for your results, I hate this waiting and it’s not even been 2 weeks yet. I just need to be patient and if all comes back clear I like your idea about going back to the DR and seeing if he would refer me to have MRI with contrast and tell him my concerns about a about getting a wrong diagnosis especially after what happened to my daughters. Thank you for your help I will post when my results from this MRI comes through as everyone has been so kind and understanding. Thanks for offering to share your experience with me this would be helpful especially as you have had dealings with the NHS.
Thanks again
Abbie