should I go for a second opinion?

[jrem2002]

Hi have just joined this forum and looking for advice. I am a female

aged 61. Initally went to GP about hearing lost on right side who

referred me to ENT. Had hearing test, also my hearing was slightly down on right side.and been experincing dizzy spells. ENT advised an MRI to rule out anything untoward. My results showed a swelling and he referred me to Royal Hallamshire neurology. I saw them in Dec who said I have a Right paraclinoid ICA aneurysm 16mm diameter. It went to a MDT meeting for discussion and they wrote to say they are going to leave it and rescan in 12 months time. Because of the size and length of time being left before my rescan I am worried scared.to say the least. They reckon I've proberly had it for years. Should I go private and get a second opinion on way forward? Cons I'm under is MR Choudhan at the Hallamshire who must be fairly new as nothing on hospital web site regarding him. Any advice recommendtions would be appreciated. Thanks

[Navillus]

I’m so sorry your going through this scary time. I had a 8.5 mm aneurysm fusiform at M1 junction. I had to wait a year to have that surgery as it was deemed non-urgent so I completely understand why you feel scared. I am by no means an expert but thought I’d explain what happened with mine. It was initially going to be monitored only and I was told those that are under 4-5 mainly get monitored anything over that usually get operated on. 16mm is definitely bigger than that but they may believe yours is in a difficult place to operate with a greater risk to you if they do. They perhaps feel monitoring it may be better option because if it’s always been there, never grown, not likely to grow then it may have a low risk if rupturing and could live life without surgery or the damaging effects of surgery. That said I know that still is a ticking time bomb for you and it’s not easy to not worry. I certainly did for a year. Every twinge I panicked. Upon surgery a year later they said it hadn’t grown or changed shape and possibly wouldn’t have ruptured. The only difference maybe why they decided to operate on mine is because it engulfed the joint and three main arteries they said I wouldn’t have even made it into an ambulance if it had started to bleed because the blood pressure rates were high there. Maybe if yours is on one vessel they believe leaving it as then no surgery, no other damage and no risk to life. My consultant did say if I was older he would have been less concerned as it would have been there long time and less likely to rupture (Im 41). They seem to measure the size over length of time and I was given a percentage rate risk of it rupturing. Were you given that. Was your consultant a Neurovascular Neurosurgen. If he wasn’t then to alleviate your concern perhaps ask for a specialist for their opinion too. If you still have concerns perhaps put those in a written letter and if the neurosurgeon can’t answer him then he may refer you to another who may be able to answer those concerns. I asked about Private and was told don’t as it can be astronomically expensive and insurances may not cover it all. I would write down all your concerns and ask for answers in a letter and see what their response is. Perhaps they might decrease the time before checking it or get you another consultant to review. I hope you get the help you need to alleviate some concern. If you get a bad headache phone an ambulance immediately and tell them your history as that is the sign it may have started to leak.

[jrem2002 in reply to Navillus]

Thanks for your reply. I phoned cons Secretary today to ask if I was OK to fly long haul. We have a holiday booked to Vietnam and Cambodia next month. I also asked if instead of waiting 12 months to see cons I could have an appointment to discuss prognosis and options. She did speak to cons who advised no problems with flying also no need to see me happy to watch and wait!! She says annies are 10 times larger before they consider going down the surgery route!! Looking at forum here and size of theirs don't feel reassured in the least!!.

[Navillus in reply to jrem2002]

I flew to Vegas 6 months after diagnosis with no ill effect at all. I wouldn’t do anything verbally but would put in writing. I’ve found they’re more thorough if it’s there on paper. I would get a second opinion or ask for an intermediate scan to make sure no neurological changes. Good luck and do let us know how you get on.

[jrem2002 in reply to Navillus]

Thanks for that. Looking at letter it appears the cons is Neuro surgeon although CT scan results went to Neuromuscular at the MDT meeting. Do you know if the Dvla stop you driving? Have just sent the forms off to them informing them. On the web site it says they can fine you a 1,000.00 if you don't inform them. Don't have problem falling to sleep at night but wake up anytime between 3-4am and can't get back to sleep. Last night when it happened I gave myself some reki which seemed to work. Going to try and concentrate on forthcoming holiday.

[Navillus in reply to jrem2002]

I’m afraid each case is very different. I had my licence revoked but they told me that because I was having surgery. I don’t know what DVLA will say if not operating. That’s the trouble everyone is so different in each case even if same type of Annie can have different symptoms. It’s still early days of diagnosis. Took me a good few months to stop panicking. Lots of contact and reassurance on here helped me and hope it helps you too. Lots don’t change and lots don’t burst. They’ve found it and you’ll get it monitored. I just tried to concentrate on the positives. The slightest snippet of bad headache just go straight to Doctors/Hospital. I had waves of being ok and then waves of panicking. Keep going with Reki helps.

[twicker]

Hello sorry to hear that. Apparently if it has been there for a while there should be a build up of calcium - ask your consultant if they spotted this as it’s an indicator. If you have access to utube perhaps watch the seminars by mayfield clinic and dr Neil Martin on unruptured aneurysms. Doctors also use ucas calculators which you can find online . I think I would try to get a second option, if I could. Very best of luck and please do let us know .