Shanti Posted June 4, 2008 Share Posted June 4, 2008 Hi everyone Just copied this from the Green Room as wondered how everyone else got on at this stage: Received a letter post MRI scan yesterday from Hope Hospital: "Concerning the MR scan you recently underwent, just to let you know the appearances look entirely satisfactory. As a matter of routine, we will get a further and probably final check MR scan 2 years after your treatment in Nov 09." (No mention of a follow up appointment). So I emailed them asking what about the other untreated aneurysm I've got, that the neuroradiologist mentioned last time would have to be clipped if it became a problem, as they couldn't get at it and coil it. Awaiting their reply. Thrilled they are happy with the results of the MRI scan, but a little unnerved by no mention of the other aneurysm. Anyone else just got a letter and no follow up appointment to discuss findings? Big hugs Lesley xxx Quote Link to comment Share on other sites More sharing options...
ninja Posted June 4, 2008 Share Posted June 4, 2008 Hi there I had an MRI scan 4 months ago and they found that I had a spur growing from the original aneurysm. They told me they would be having a meeting the following day to see what was to be done and I should hear from them within a week to 3 months!!! To date I have received nothing and they had told me I would probably have another angiogram. We have contacted the hospital on numerous occasions just to be told I am on the waiting list, it is now 4 months. At the appointment following the MRI scan the neurologist told me they may have to do more coils or just monitor it and thats the information I have been left with. In fact my wife is ringing the hospital again as I am typing this as your message reminded us. As you will probably appreciate from the original misdiagnosis to the stress of this current worry is rather distressing and I am starting to lose faith. By the way my wife can't get hold of the neurologists secretary we shall keep trying!!! Cheers John Quote Link to comment Share on other sites More sharing options...
Guest pam Posted June 4, 2008 Share Posted June 4, 2008 Hi Lesley I understand how you feel, even though its great news that all is well. I had to tell my neuroradiologist that I would prefer to see him for the results then get a copy of the subsequent letter to my GP, otherwise I think I would have just got a letter with no follow up appointment. Seeing him gave me the opportunity to discuss my small untreated aneurysms which I think if I hadnt brought up wouldnt have been discussed. I too was told that if my next MRA scan shows all is well,(scheduled for 2010 that will probably be it be it, no more MRA scans (which to be honest worries me as these small ones are untreated). I too have been told that the small aneurysms cant be coiled and would have to be clipped, if they became troublesome. I think if I was you I would ring the neuroradiologist secretary and ask if you can have an appointment to see him to discuss more in depth the scan results I did find that when I had a chat with my neuroradiologist I found I was reassured as he was able to explain things, show me the treated larger aneurysms on the scans and show me how small the untreated ones were in comparison to the treated ones. Its worth making the call and trip to the hospital for some peace of mind. Take care Pam Quote Link to comment Share on other sites More sharing options...
Shanti Posted June 4, 2008 Author Share Posted June 4, 2008 Hi there John: thanks for your reply. Not surprised your getting worried. I would be to. Especially as you've got a spur (which I suppose is an offshoot) from the aneurysm. I think perhaps there is a lack of funding/cutbacks here too. (Just replied on Marie's 3 months post SAH message above). I emailed my neurosurgeon's secretary - her email address was at the top of the letter. You could try that. Though saying that, I haven't had a reply yet. Pam: thanks also for your reply. My other unruptured aneurysm was diagnosed as small so perhaps they only get stuck in if its above 5cm. Or should that be 5mm. Can't remember. Anyway I will continue to pursue this because I don't want to be worried about it all the time. Thanks for the responses Night night Lesley xxx Quote Link to comment Share on other sites More sharing options...
Guest yasmin Posted June 5, 2008 Share Posted June 5, 2008 Hi John I too have a spur growing from the original aneurysm when I went back the last time they said they would just monitor it and my next scan is Jan 09, they said they would confirm in writting but I too have never had a letter my apppointment was months ago now, I'm not too worried they are positive that it won't re bleed so I can only take their word for it. I think my hospital are short of staff and some of the consultants don't even have regular secretarys(excuse my spelling time for bed) Yasmin Quote Link to comment Share on other sites More sharing options...
Shanti Posted June 10, 2008 Author Share Posted June 10, 2008 Hi everyone Quick update. Received a letter in reply to my email: It says the smaller aneurysm on the right, measures approx 2mm in diameter looks unchanged. The risks of this causing a future brain haemorrhage are very low and we think lower than the risks of surgical clipping. This small aneurysm looked entirely unchanged on the MR scan. We will perform a final check scan in Nov 09 and if appearances remain unchanged, then we can discharge you from further follow-up Well, what can I say!? Suppose I'll just have to try and carry on getting better and try not to worry too much. They didn't comment on whether or not I can fly abroad. Suppose I'll just take my courage in both hands and go for it. Hugs all round Lesley xxx Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.