A lot of people on here are saying" iv'e just had my 2nd 3 rd coiling" etc does this mean it's likely to happen again?im so scared please can someone give me some advice thankyou x
i want to know the same thing.
Hello Charlotte.
Welcome to BAF. There are some great people here, always willing to share their experiences and answer questions. It is important to remember though, that those aneurysm patients who sail through treatment without complications or psychological problems are not likely to join a forum like this as they are managing fine. We are a self selected group, people who have problems or anxieties after treatment or need repeated treatments. So, just because there are people here needing repeated treatments it doesn't mean you will. In fact, my understanding is that need for repeated treatments is quite small (especially if you were clipped). I'm also in the UK, had coils and arterial occlusion for an unruptured giant aneurysm just over a year ago and have been left with a few cognitive problems that mean I have been unable to return to work. I'm now retired and enjoying the freedom.
Judith
Thank you for reminding me too that its unlikely that I will suffer another. This was starting to worry me because of all the discussions of people having more aneurysms. Its been 4 years almost since my rupture and have not been back for a follow up angi, which worries me too. Unfortunately I was laid off after the rupture and life, economics, disability etc just got priority. I'm now getting disability and am wanting to get busy on neuro to see where I am as far as clean of anymore and my mental status as I seem to be losing a lot more memory and several other things I've noticed in recent months. I was very lucky to survive per the neurosurgerns at the time and had no physical complications all mental, which have been very difficult especially since no one can 'see' your disability. Thanks again for support and help!
Thankyou for the reply,this is all new to me so it scares me a lot as its only 5 weeks since it happened and i had coiling. Xx
Hi Charlotte. When I had my first coiling I was told by the surgeon that there was a chance that the coils could compact and that I might need further surgery at some point. It was a large aneurysm with a wide neck. I can't remember what percentage need re-coiling but it is low. My experience here in UK (operation at QMC, Notts) is that the monitoring of patients after a coiling operation is pretty good. At the hospital I go to there are also specialist nurses at the end of the phone that you can ring if you have any concerns post op so I am sure you will be in good hands.
Thankyou x
Hello Charlotte,
You have come to the right place for sharing your anxieties, we have found BAF a great place to ask questions and get answers since my wife's SAH 18 months ago. Are you talking about recoiling the aneurysm you have or the chance of getting another one. We were told that coils once in place will not move out of the aneurysm but they might settle into the space within the aneurysm which means more coils may be needed, around one in five patients may need further treatment. I don't know when you had your operation but Sue had a follow up angiogram after six months and she has just had her second one everything was fine, she has a second aneurysm which is being monitored. We were told that main things to watch is your blood pressure and cholestrol and definately no smoking and no heavy lifting. Sue was headache free for about 8 months but they have returned not sure whether thats anything to do with the aneurysm or not. Hope you are making good progress with your recovery, we also live in the UK Bedfordshire, the only disapointing thing we found was the after care is not very good in this area . Best Wishes John & Sue
Hi Charlotte...I think it is important to remember while many of us share aneurysm's...many of us have different health issues...I was coiled 2 years ago...and it didn't go well at all...yet so many pass through and have done so super...everyone is different...~ Colleen
Thanks for the reply,i had my operation on the 14/1/13 and had to go back on the 16/1/13 as they said i was close to having a stroke, (something to do with vasospasm's)so this is all new to me, i guess im just really scared at the moment and have lots of questions.I hope your wife is doing well and thanks once again,Charlotte ..
Charlotte,
It's understandable your scared and it's normal that you should feel this, after all you have had a massive trauma to your brain. It helpful to talk about worries and fears there are some good support groups around like the Stroke Association helpline 0303 3033 100 or Headway brain injury association helpline 0808 800 2244 if you phone them they will give you your local branch. Also if you have a chat to your doctor they may have a neuro support team. It's worth taking advantage of these services as they are all free.
Charlotte, it may be worth checking whether the hospital where you had your operation has a team of specialist neuro-interventional nurses. The hospital where I had my operation has such a team and they run a helpline. They are very helpful and will always take the time to discuss any queries and provide reassurance or seek additioanl information and get back to you if they cannot immedaitely address your concerns. It may be worth checking whether yr hospital runs a comparable service that could give you some additional back-up as well. Caro