Does one need regular scans?

Concerns specific to those in the United Kingdom

Does one need regular scans?

Postby Bella » Fri Oct 01, 2010 9:24 pm

Hi - it's good to have a forum here and I hope it proves useful to the UK members.

My son was diagnosed with multiple cavernomas (familial form) last year and had surgery in Sept 2009 to remove a large cavernoma from his temporal lobe. He has made a fantastic recovery, and at our annual check up recently we were told that the hospital don't wish to scan him (his symptoms are now practically gone) despite him having several other cavernomas. I wondered if other members have also been advised not to have regular scans? As a parent, part of me wants to monitor the other cavernomas closely, but equally I understand the surgeon & neuro's decision that unless any symptoms occur, there is no need to scan. Any thoughts??
Bella
 
Posts: 13
Joined: Fri Oct 01, 2010 9:13 pm

Re: Does one need regular scans?

Postby tallpaul » Fri Oct 01, 2010 10:46 pm

This has been discussed before, I think at the Cambridge Caverhub but I could be wrong. In essence the doctor who was speaking at the time people were asking about it put it like this: unless cavernomas are symptomatic the best policy is to leave them be. So one has to ask what the point is in using a valuable resource (the MRI scanner) and putting patients through extra stress (both having the scans and waiting for the results) when the reality is that nothing very useful is going to come out of an MRI scan unless the patient's currently symptomatic.

As someone with broad shoulders and so who barely fits in the MRI machine at Addenbrooke's this is a policy that I'm very happy with :D
Paul Oldham, cavernoma in pons, bled 2002
Webmaster of Cavernoma Alliance UK
User avatar
tallpaul
Site Admin
 
Posts: 7
Joined: Sat Sep 25, 2010 9:46 am
Location: Cambridge, England

Re: Does one need regular scans?

Postby kirkmc » Sat Oct 02, 2010 7:25 am

tallpaul wrote:This has been discussed before, I think at the Cambridge Caverhub but I could be wrong. In essence the doctor who was speaking at the time people were asking about it put it like this: unless cavernomas are symptomatic the best policy is to leave them be. So one has to ask what the point is in using a valuable resource (the MRI scanner) and putting patients through extra stress (both having the scans and waiting for the results) when the reality is that nothing very useful is going to come out of an MRI scan unless the patient's currently symptomatic.


Hmm, I think that's a tough call. I think it's a good thing to follow up with regular MRIs, even if you're in "wait and see" mode. It shows whether there are evolutions and whether new CAs show up. In the case of asymptomatic people - where a CA is found incidentally during an MRI for something else - I'd say that's safe. But for someone who has had documented bleeds, it's probably better to keep an eye on them. In addition, in anyone with multiples, especially who'd had surgery, I think it would be safer to do regular MRIs.

I've been having MRIs since my bleed and diagnosis in 2005. In two weeks, it'll be the fifth year I'm having them yearly. Mine have grown a bit, and my neurologist is particularly interested in whether the larger of the two I have will grow enough to be accessible surgically.
Two brainstem CAs in the pons. Big Bleed in July 2005, previous, undiagnosed bleeds in 1982 and 1987, and several smaller bleeds in the past few years. I live in a town in the French Alps. http://www.mcelhearn.com
User avatar
kirkmc
Site Admin
 
Posts: 469
Joined: Sat Sep 25, 2010 8:15 am
Location: A town in the French Alps

Re: Does one need regular scans?

Postby Libby » Sat Oct 02, 2010 10:55 am

Forgive me for answering on the UK board.
I agree with you , Tall Paul. I have had 8 bleeds. I only have an MRI when I have symptoms. There is just no reason to check it if it isn't doing anything. Even if one of them is bleeding, due to location and the other complication, they aren't taking them out anyway. I don't need to travel and have an MRI if I am not having any trouble. (Now I understand if for some reason the size would matter for the operation) but normally a little size change doesn't make any difference. The researchers certainly can't tell by the size if it will bleed.
So I am with you Tall Paul. I have enough pictures unless I have new symptoms. I go talk to the neurologist once a year, but other then that I see no reason to go unless I am in trouble.
multiple ccms in brain including thalamus and in brainstem. 9 bleeds . Large venous angioma and multiple large veins in the brain. Various lymphangiomas and hemangiomas in head.
User avatar
Libby
 
Posts: 571
Joined: Sat Sep 25, 2010 3:08 pm

Re: Does one need regular scans?

Postby Bella » Sun Oct 03, 2010 8:12 am

Thank you for your replies and opinions. I think my initial reaction to hearing that they don't want to scan my son was that it was for cost reasons. I thought we may have a further scan to check the healing of the cavernoma which was removed last year, and this would provide a chance to check on the other ones. I wouldn't put my son through a scan if it was traumatic, but at 9, he is not phased by them at all and would not see the results himself. I do trust my surgeon's decision on this, but wanted to explore opinions.
Bella
 
Posts: 13
Joined: Fri Oct 01, 2010 9:13 pm

Re: Does one need regular scans?

Postby ianstu » Mon Oct 04, 2010 9:17 pm

Unless your cavernoma is symptomatic, I see little point in being scanned. Neurorsurgeons in the the UK seem to abide by an unwritten law that they will not remove an asymptomatic cavernoma. For me, like Kirk, I was diagnosed with a pontine (brainstem) cavernoma. Having lived with it for over 20 years now, I have given up MRI scans. What's the point? Even if it gets bigger, they 'aint going to operate on it.
ianstu
Coordinator, Cavernoma Alliance UK
 
Posts: 11
Joined: Mon Sep 27, 2010 8:08 pm

Re: Does one need regular scans?

Postby anthony08 » Sat Dec 11, 2010 9:31 pm

Bella,
First, I love your name. My oldest daughter's name is Isabella but we call her Bella. Second, my son has multiples and we wouldn't have known if it wasn't for the follow-up mri's. We found his first one by accident and it had bled and hemorrhaged and we had no idea, no symptoms. I know alot of people think that if you don't have symptoms then you shouldn't bother with scans and if it was me that had them, I probably wouldn't get mri's without symptoms either but with your child it's different. Our neurosurgeon told us that he wants regular mri's cuz our son is so young and cuz after his surgery he had none and then 3 months later none and then 7 months later, 5 angiomas! They just came up out of nowhere. 3 are in his original surgery site but alot deeper and one is in his left frontal lobe and one by his ventricle. His doctor said these things are so unpredictable that he wants to keep an eye on them with mri's. I would rather be safe with the mri's than have my child die cuz he had one in his brainstem that hemorrhaged that we didn't know about. Not trying to scare you, just giving you an opinion from another mother of a child with cavernous angiomas.
-anne
4 1/2 year-old son, AJ with multiples and a DVA who had brain surgery at 17 months.
anthony08
 
Posts: 84
Joined: Tue Sep 28, 2010 7:11 pm


Return to United Kingdom

Who is online

Users browsing this forum: No registered users and 1 guest