Sorry but realy need support again

[Peter_Scott]

Hi,

You may remember I posted about my fears about a brain tumour I may have, and that a trip to the hospital reassured me not to worry, I have had daily headaches and twitching plus some numbness for 8 weeks now!

Well out of the blue I received a letter from my Neurologist and to be honest it does not sound too good, I have included it below. I have a 3 to 4 week wait for another MRI here in the UK, it is not going to be easy especially as if the news is not good and the thing in my head has grown which I fear, then there will be nothing they can do as it is on the brain stem.

As you can imagine I am very scarred, alone as the life long HA could well become my worse nightmare. Any words of encouragement would be very welcome at this desperate time,

Peter

Neurologists letter received the day after my hospital visit;

Dear Peter,
Thank you for your note. I am sorry to hear about your ongoing problems.
I would personally repeat your MRI brain scan. We do know that the brain scan that you had done previously was abnormal and although the reporting neuroradiologists thought that this small area was either inflammatory or related to blood supply there are always other possibilities which need exclusion. Whatever the mechanism that generated the first abnormal area may still be present.

As you can see I have sent a copy of this letter to your GP and would suggest that you get in contact with them once you receive this letter.

With kind regards,

Your sincerely, M*********, M.A, M.B, B.CHIR, M.D, F.R.C.P, M.E.W.I. CONSULTANT NEUROLOGIST

[ladybird64]

Peter,

I can appreciate how scared you are, I think anybody would be.

A couple of things strike me about the letter from your neurologist though. Firstly, he refers to your note so Im assuming you have contacted him yourself.
He was also aware that there was an abnormality on the initial scan but did he not see you for follow up after this was done?

It seems that the neuroradiologists did not feel that the abnormality was of high risk and I would have thought that although the neurologist has recommended a follow up, it is just to rule out any changes?

It sounds more to me like he is looking for the cause of the abnormality itself and his suggesting you go to the GP for referral doesn't sound too urgent?

Please don't think I'm belittling your situation in the slightest, I would be frightened and I don't suffer from HA!

I would suggest talking this over with your GP and trying to get some clarification but I honestly think that if the neuro had been very concerned he would have

a) followed up on your previous scan

b )referred you for an urgent scan himself rather than through your GP

I hope all goes well for you and you get the answer you need

Take care :flowers:

[busybeingmum]

Peter - please try not to get too worried about this - they are covering their arses! Did you write to them for them to respond with this letter? Am assuming they said the scan showed something abnormal but they thought was due to inflamtion etc. I think that if you wrote to them then they will have sensed your anxierty and this in turn worries them.....They therefore are encouraged to repeat the scan. Try to speak to your GP ASAP for clarification. xxx PS, letters from the professional can, in my experience, fuel anxiety as they can't afford to be comforting etc.

[Zee]

Hi Peter, I understand your worries as an HA sufferer myself but I do agree with "busybeingmum" above, that they are covering their own backs in response to your concerns.. They will have no doubt sensed your anxiety and seek to reassure you.
Im sure that people on here will continue to support you through this.

[Peter_Scott]

Hi and thank you for your encouraging posts.

Yes I did write to the Neurologist and I have added a copy of the letter below as this may make his reply easier to understand,

Peter

Dear Dr *****,
I don't know if you remember me but I have seen your several times over the years, the most recent time was March 2009. I was referred to you after what was thought to be Transient global amnesia. You arranged for me to have a brain MRI at the time which showed a small legion near my brain stem, but your thought it was nothing to worry about. I have enclosed your report from last year.
Any neurological symptoms that I had at the time have now gone which is good, but in about June 2009 I started to get nauseated, and completely lost my appetite, since then due to the nausea I have been surviving mainly on liquid food, ensure drinks. I did loose a lot of weight at the time, nearly 10Kg, but although I have not re gained my weight I have not lost anymore, and weigh about 88Kg. I am currently under a GI doctor locally who has performed many tests including an upper GI which was normal.
The reason that I am contacting you is that for the last month I have been getting daily headaches interspersed with weekly migraines, they are temporal headaches, mainly on my right temple and above my eye, but sometimes they move to my left. You did diagnose me back in 2002 with complicated migraines, and these seem very similar. I have seen my GP several times about these headaches and she thinks they could be migraines. You did write to my GP last year after you found the brain legion that a repeat MRI would be recommended if I had other symptoms, and these daily headaches are beginning to concern me.
I really do not feel up to travelling to London to see you again unless I have to, would it be possible for you to contact my GP here if you feel that I should indeed have a repeat MRI due to the new symptoms and the past abnormal MRI.


I really appreciate your help with this as I am getting very concerned.
I have enclosed a copy of the letters you sent to me last year.

Yours truly, Peter

[Rachel W]

I would like to say that it does not sound that he is too worried either, as he mentioned that the abnormality may still be there, but you are concerned that a few weeks may make a difference and he does not seem to think this. I think that if he was concerned they would get you in ASAP, ie straight away.

Please try not to worry, but as mentioned above we here would. You will be in my thoughts.

Bless.

[Maj]

Hello Peter,
I can understand why you would be worried after receiving this letter, but I think if that doctor was so concerned then he would have had a repeat scan done asap, without a doubt. If it is urgent then the hospital can always fit you in. It was noticed that one of my son's has a cyst on the base of his brain when he was having an mri scan but the doctor said it was absolutely nothing to worry about, although I got a shock when I was first told!! So, every lump and bump doesn't have to be serious and quite often it's only when we have scans done that they find any lumps n bumps!! Most of them are just part of us. I know it's difficult, but it doesn't have to be anything to worry about.
Myra x

[Peter_Scott]

Just to update, for the caring people on the board who replied to my post last week and to ask a question.

I just had my appointment date for the MRI brain scan with contrast this morning, I only went to my GP on Monday morning, for the NHS that is not bad going. Anyway it is for 10:15 on Monday 26th April.

First off I am terrified, one because what they may find, will it have grown since my last scan taken last March, if so it is very bad as it is on my brain stem.

Second I am extremely claustrophobic, I can never swallow and feel like I cant breath. I am an old hand at MRIs but this is the first one done on the NHS, all the others have been private, and they have always let me bring a friend into the scanning room with me which has helped a lot. does anyone know if the NHS allows this, they seem so worried about health and safety or being sued these days I am not sure they would help.

Does anyone have any advice about the feeling of dry mouth and not being able to swallow during a scan, and the claustrophobia thing.

Thank you,
Peter

[Typer]

Peter, 26th April is not that far away. I can see you are really freaked out now...but reading the letter from your neurologist I would say your last result was not unusual...that is, wont be the first time they have seem inflammation. My guess from his letter, he is playing it safe re your symptoms and to allay your fears but, many of your symptoms may be psychosomatic in nature.

On saying that it seems vital for your mental health and anxiety levels that you have an MRI and get the results a s a p.

If your symptoms seemed urgent, he would have arranged the MRI himself.

Hugs

[countrygirl]

I would give the scanning dept a ring and explian your severe anxiety re the scan and tell them that in the past you have had someone in the room with you and ask if same could happen again - they may not allow a friend in with you but you may be able to have a radiographer with you which is better than being all alone. I have had about 8 of these scans and am ver claustrophobic so know all about your terror.

I have a cyst on my brain stem that was picked up nearly a year ago on mri and was referred to a neurosurgeon who said its a tiny cyst and they come and go ( it is causing me pulsitile tinnitus they think) - he did say that no one operates on brain stems so I can understand your fears as they are mine too! he discharged me and didn't even want any follow up scan at a later date as he said he sees loads of these cysts in the brain and 99.9% of the time they come and go at will.