MRI Results

[Bs1524]

Me again!

We have just received a letter from the GP to say he has been informed that the scan showed some changes in the brain that they believe are alcohol related and my husband is being referred to a neurologist. What does that mean?

[ThreeSmiles]

Hi Pam

What type of scan was it - guess it must have been an MRI scan. I had that a couple of years ago. Did you see the scans - very intriguing mine were. Lots of white fluff looking stuff which the Neurologist attributed to neurovascular disease.

My brain was also slightly smaller than it should have been at my age. That, of course, elicited a few knowing smirks from the family. 😁.

He didn’t tell me at the time but I later found out from the Hepatologist that they were looking, in my case, for Parkinsons. Since then that particular MRI scan was never mentioned again I’m pleased to say.

That’s all I know about brain scan (mine that is).......

Good luck

Miles

[Bs1524 in reply to ThreeSmiles]

I didn’t see them I only know it was a brain scan. They don’t seem to be in any hurry it said it would take some time for the referral. We will probably see the consultant before the neurologist. My husband speech was a bit slurred but his dentures don’t fit properly they needed sorting before he lost lots of weight. I can’t believe the doctor sent that letter O got back to him terrified said he thought he would need to find a gun. I have said it is nothing as it said changes are probably through alcohol but he isn’t a brain doctor so better safe then sorry at our age it would be a miracle if there wasn’t any changes

[ThreeSmiles in reply to Bs1524]

Pam, It is indeed naughty to send that and then make you wait 👎🏻. However I think you would hear pretty darn soon if there was anything badly wrong....

Miles

[Bs1524 in reply to ThreeSmiles]

Well we are home from endoscopy and it revealed a couple of grade 2 varices and that he has gastritis. How many grades of varices is there although I am guessing as no one is rushing they are not of too much interest. They have not bled.

[AyrshireK in reply to Bs1524]

There are 3-4 grades of varices depending on the description used.

Grade 1 - Small, straight esophageal varices

Grade 2 - Enlarged, tortuous esophageal varices occupying less than 1/3 of the lumen. (The lumen being the hole or space within the tube of the esophagus).

Grade 3 - Large, coil-shaped esophageal varices occupying more than 1/3 of the lumen.

Grade 4 - Giant

[Bs1524 in reply to AyrshireK]

Thanks when I asked the nurse he said he didn’t know how many grades there were.

[Hidden in reply to AyrshireK]

Firstly, Bs1524, I am so sorry to read of the trials you and your husband currently face.

I hope that things improve at your end for you and for him. He sounds very fortunate to have you!

Wouldn't it be wonderful not to allow others' moods to affect our own so much.

I have a question about varices.

AryshirK mentions the grades for esophageal varices (EV). My husband has the gastric version. At this point, we are unaware of grade of it. From the picture diagram I've seen, it appears to be IGV-1 as per Dr. Google.

Does anyone have experience with these? I've read that they are not as common and can be more serious. We were told that they cannot be banded; rather glued if it starts to bleed. Is there also staging for gastric varices? Can they go away on their own?

TIA.

Take good care. Hopefully your husband will wake up feeling a lot sunnier in all ways.

[Bs1524 in reply to Hidden]

I am new to this disease so I cannot help I know as from last week he has varices they haven’t bled and they said they are grade 2 but other then that I have no experience whatsoever. I am sure there are some very experienced people here who will have a much better understanding then I.

Thanks for your kind wishes, I am crossing my fingers.....

[Hidden in reply to Bs1524]

Hi again, we are very new to this too. Plenty to learn. And, Hope to uncover.

I must remember to have my list of questions ready adding this one for the next visit with the GP.

I forgot to ask the gastroenterologist for copies of some things such as the results of the ascites fluid sample and staging of varices.

I hope that this day was a vast improvement for you over yesterdays!

[AyrshireK]

There is an alcohol related brain damage known as Wet Brain, Wernicke-Korsakoff Syndrome or alcohol related dementia and is caused by a deficiency of thiamine/Vitamin B1 due to excess alcohol usage - information about this at:- addictionresource.com/alcoh...

Hopefully if it is this and has been identified timeously enough they can put treatments in place.

All the best,

Katie

[Bs1524 in reply to AyrshireK]

He is on thiamine but I will mention this to gp I just can’t believe they would send the letter without some explanation he is losing his will to fight this

[Hidden in reply to Bs1524]

Hi Bs1524,

Please note that nobody here is qualified and able to replace the doctors providing your healthcare. However well meaning it isn't appropriate for anyone to suggest a diagnosis as this may cause unnecessary concern.

If you are worried as I know you will be, please contact your GP or the consultant. You may consider calling the British Liver Trust telephone helpline. There you will be able to speak to a registered nurse with qualifications and experience in liver care.

You can call 0800 652 7330 between 10am and 2.45pm Monday to Friday (not bank holidays) or email [e-mail] (emails can be sent at any time and are answered during helpline hours).

Best wishes,

Volunteer moderator

[Thehermit]

I had this scan after being admitted to Hospital and was told that I had " some damage due to the alcohol abuse, but, don't worry as long as you cease drinking over time your brain will rewire itself". Best wishes to you both.

[Thehermit in reply to Thehermit]

By the way Pam, that was a few years ago and as far as I,m aware ( yes, friends would beg to differ lol ) my brain has indeed rewired, or built new pathways.

[Bs1524 in reply to Thehermit]

Thanks, I am guessing that the Consultant is pretty sure it is down to alcohol but needs to be certain there are no other underlying causes. Him receiving a letter like that while on his own when he is suffering major depression wasn’t the best move from his GP.

I know we are supposed to let the health care people know of any changes but how? We are waiting for next consultant’s appointment and when we went to A&E they pushed it back to the GP who pushed on to Consultant and so round and round we go.

[Bs1524 in reply to Thehermit]

Hi just had copy of the letter the consultant sent to the GP and it states advanced involutional and deep white matter microangiopathic changes and seemed to indicated were incidental to matters relating to alcohol. So now even more confused. Have they any idea of the confusion and worry they cause?

[LAJ123]

Pam,

That was well put by Thehermit and I hope it helped.

We shouldn't discuss the worst case scenario without considering the possible impact on who we are replying to, especially in the age of Google where there will be an immediate search of the internet.

In my (unqualified) opinion, not being fast-tracked could be seen as a positive indication. I Hope you do get to see someone soon to put your mind at rest as you have both been through such a lot recently.

Don't forget yourself in all of this, make sure that you are getting support as well. As a carer for Jim when he was unwell before his transplant, I know how hard it can be. I found this group to be of great help as well as a network of friends ('Facebook hidden group') who were there when needed.

Take care and best wishes.

Lucy

[Bs1524 in reply to LAJ123]

Thanks so much Lucy it does feel that you are left very to your own devices by the doctors even work colleagues have noticed mainly as they how I take time off work to take him to appointments which are noticeable by their absence.

There is an invisible FB group?

Thanks

Pam

[LAJ123 in reply to Bs1524]

Hi Pam,

Yes you can set up a Hidden FB group. When you go into Groups, it gives you a menu and you can choose for it to be private so 'posts' only go to group members and 'hidden' so it won't show up in your list of groups. The only place it can be seen is under 'groups you manage'. As Jim and I both use each other's computers, I called it something very innocuous and crossed my fingers he wouldn't go do any more than look at the groups list on my home page. He didn't.

It was really helpful for getting through the difficult bits where you need a friendly ear.

Good luck!

Lucy

[Wass71]

Hi Lucy,

In the past Dr's didn't share information with the patient, at that time things were 'done' to patients, without them having any options. Thankfully we've moved on from that, and it's been proven that being involved in decisions about your care can help patients get better, or cope better with long term diagnosis.

I hate the idea of Dr's discussing things about me without me being able to check the information is correct etc.

However, you have the choice, and if you feel it would be better for him to not see these letters you just need to ask the Dr's, please don't include me in the copying of letters. For some it causes more anxiety and stress, especially as you say when you are left clueless and waiting..

I hope you get the results clarified, and that they are nothing too sinister. As others have said an urgent follow up would happen if they were very worried.

Wishing you well.

Wass