4yrs post SAH follow up

[KelBel]

Hi everyone

I felt the need to come back on here after receiving some news this week from the hospital I was coiled at 4.5 years ago.

I had a follow up MRA on 8th March this year and then had a follow up appointment with a Neuro consultant 19th March.

I have been waiting since then to hear when they might repeat the MRA. In my mind, as there has been no change to my coiled PCOM aneurysm I had assumed I might get scanned again in about 3 to 5 years time...

When I was at my appointment on 19th March I happened to notice an email on the consultants PC that was about me (attention to detail or just nosey...) and it mentioned that the "ICA is less conspicuous now"...

I naturally asked what that related to and the consultant calmly advised that it was nothing to worry about, it is just a very small 'blister' in my brain that they have been keeping an eye on (what the hell???) and that it cannot cause another SAH so it is nothing to worry about.

I left feeling a little unsure about this explanation, as in my mind a 'blister' could also mean an aneurysm!? But I tried to trust the consultants judgement.

On Weds this week (08/07/14) I finally received a follow up letter from my appointment in March! (It has never taken this long before...).

It reads, and I quote;

1. "In Decemeber 2009 she suffered grade 1 subarachnoid hemorrhage and underwent coiling of a right PCOM. She is also known with a small cavernous ICA aneurysm"

2. "the patient has been well and has stopped smoking"

1. The spelling and grammar is atrocious! Also they are now telling me that this ICA is in fact an aneurysm!!

I specifically asked at the appointment what that meant and he specifically called it a 'blister'. He could have actually explained then that it is another aneurysm. I would possibly not be quite so stressed about it now!

2. That sounds like I have recently been smoking but have recently given up. Fact is I have not smoked since January 2007, which is actually 3 years before I even had my SAH in December 2009!

I have called the Neuro dept today and spoken to a secretary who was going to email my specific Neuro consultant (not the guy I saw in March as I tend to see whoever is available, I have seen my Neuro consultant once, 3 yrs ago).

The secretary was really good and completely understood my concerns and she hoped to get an answer today for me but I did not hear anything so I am hoping to get an answer on Monday now.

The letter does state that following their review they have decided to scan me again in 2 years, so I guess this 'small cavernous ICA aneurysm' is not a problem then... But I do need to have some questions answered.

Like; how long have I had it? How small is it? What could it cause if it gets bigger, if not a SAH? Questions I now need answered!

It's not devastating but it's not great is it?!

Kel x

[Tina]

Kel, how very unsettling for you to receive that follow up letter Bless you not great at all! xx
I hope that you hear on Monday as I would certainly want some questions answered too. Peace of mind that all is ok and why it was not mentioned to you before. Plus you can clarify how long ago you gave up smoking and put the record straight.

Very strange that it was not mentioned to you before, but maybe as you say it is not causing a problem so did not want to worry you. Mind you the Consultant should certainly have explained it better.

Hope you get all your answers soon lovely lady and you can relax and not stress.
Lots of love and hugs to you, take care xxx

[Super Mario]

KelBel, not news you want to hear but they will be keeping a close eye on it.

I suppose this "blister" could have developed and appeared since your last MRA.

Have you thought about complaining about the doctors blasé attitude, not good bedside manners and definitely no understanding of how such news would effect anyone, least of all a person who has had a SAH and already experienced the devastating effects and the struggle of recovery.

[Karen]

Hi Kelley,

 

I know how you feel, as I discovered that I have an abnormal artery that may or may not turn into an aneurysm (exact opposite side of the coiled one) ... this was just blurted out when my notes were being hastily read out aloud by an incompetent Doc at my local hospital..... I was so shocked that I just sat there....whilst he read my notes like a shopping list and basically just wanted to get home for his tea.

 

This was a few years ago now, but it wasn't what I wanted to hear at that stage of recovery. I followed it up with my GP once I felt more rational and yes, this information is on my notes .... now to be honest, I would have preferred to have been given this information from the start, rather than to discover it like I did.  My GP just basically dismissed my concerns and asked me why I thought it could turn into an aneurysm?  D'oh, because it can! grrrr! Maybe he was trying to be kind, so that I wouldn't worry ... who knows!

 

It took me a while to come to terms with the news and it's horrid to deal with.  It leaves a lot of unanswered questions that I feel I have a right to ask about ... I'm due back for my 10 year scan in 2015.

 

Sending hugs and love Kelley ... I know how you're feeling. xxx

[Daffodil]

Hi Kelley. I also have a second one they watch...I know how you feel as they should have told you but continue to let them keep an eye on you and keep doing your own best job of looking after your health.

I have decided to be amused by the second whatever it is as the docs argue whether it is an aneurism or not, it caused an almighty row once and I found out by casual comment too. These guys treat it so day day to day they forget it's rocking our world I think, anyhow we now refer to it as the blip. I guess I am either blasé or In denial because I genuinely don't feel I can worry about something I have no influence over, it's there and if it changes then I'll take that worry at that point, no point to adding it in now.

It's not great news no but they are obviously happy it's stable and not changed since last scan so focus on that and get the questions answered you need. Take care. Oh and congrats on the job!

[KelBel]

Hello lovely ladies

Tina!

I am sure everything is fine, I am just annoyed that he did not explain it thoroughly whilst I was there at the hospital in March! Especially as I specifically asked about it x

Penny - exactly! There didn't seem to be any thought about how this news might affect me x

Karen - I am sure they are happy that it is being monitored and did not feel the need to tell me about it as it could cause me undue stress. The fact I noticed these details and questioned it should have made them explain it to me in laymans terms. It would have made it much easier for me!x

Daffodil - I do keep trying to tell myself there is nothing to worry about... But I do need my Neuro consultant to put my mind at rest x

Thank you all.

I will update once I have further info

Xxx

[kpaggett]

I read about a '1mm out-pouching' in my left cerebellar artery.  I was NEVER told about it.  They also never told me about some nodes they discovered in my throat.  I read that too and then followed up with that.  It was nothing, but the docs have to cover every little thing that could possibly be wrong.

 

 No one really knows how many of the 'normal people' walk around with minute strange things in all parts of their body.  They can't really do tests on 'normal people' because first they do no harm.  No one is perfect so therefore my body isn't either.  I'd just wish they'd have explained all this to me when I was freaking out about it.  I hope you get the answers you are looking for.

 

~Kris

[KelBel]

Hi all,

A quick update;

 

As of last friday it had been 3 weeks since I initially contacted the hospital with my concerns and I had not received any callback.

 

On Monday it had been 3 weeks since I had chased it up and I was told they would get back to me as soon as they could, but they are busy. 

I sent an email on Monday evening entitled Complaint and on Tuesday morning I had a message left on my work phone, an email reply and a call on my mobile. The secretary could not believe I had not had a reply and was getting on it straightaway

 

I recieved a further 5 missed calls today (whilst I was in an all-day meeting at work) plus an email to say they have booked an appointment with my Neuro consultant on Weds 20th August. He didn't want to send another letter to me as he would like to explain it all to me face-to-face

I look forward to getting some answers this time!

 

Kel x

[Winb143]

Hi Kel,

Scary stuff this anni business, I really think all will be well but you'd think Nuero would have confirmed this to you.

They say not to stress but not knowing is stress, (Win pats Kel and says you'll be okay).

 

When I went to hospital I said to nuero surgeon "Why did I get all the germs"  he said when brain is opened it's more prone to germs.  I half believed him but the Doubting Thomas in me did not. 

 

Hope you get good news and go for a meal afterwards.

 

Good Luck Kel 

WinB143 xx xx

[Macca]

Good luck Kel - write some questions you want answering on a piece of paper before you go so you don't forget to ask and tick them off as you get answers (the questions not the doctors lol).

 

 Take a pen to hospital with you and add some more if they say things that trigger off more questions, as they are talking to you.  Otherwise you will forget and regret you didn't ask all that you could have.  It works for me - short term memory and all that! You don't want to come away with any questions in your head!

 

I wish you well.

Macca

[Karen]

Good luck Kelley and hope that you get all of the answers that you need. xxx

[MaryB]

Sorry Kel, This is not what you wanted to hear at all. I know it is so unfair on so many levels when they do straight shoot with you. I just do not understand. My surgeon who I love told me on my 3 or 4 month check up that I had a small brain tumor. No one mentioned it prior to that. It really makes me mad that they cannot give you all the facts. I now have all my scans printed and in a file. I had to switch family doctors recently and it is a nightmare of explaining what you have and how you became the way you are bla bla bla. Anyway GOOD LUCK!! Big hugs to you, maryb

[poppy1]

Good luck Kelley, I too would want answers. Neuroscience has progressed such a lot over the last 10- 20 years, even if the docs don't have all the answers, it would be good to have them explain the reason why they don't know. Instead you are left in the dark and more importantly a degree of mistrust will be hovering. I agree with Macca, write the questions on a piece of paper. It totally helped me.

Poppy xx

[Macca]

Kel,

I hope you got on ok on 20th.  I go for my four year MOT on Friday - fingers and toes crossed.  It doesn't matter how many times I go, I always feel anxious beforehand, as they always use language and abbreviations I don't understand.  I feel cheeky asking sometimes but I'd feel terrible at home if I didn't ask because I would fear the worst when it was probably not very much at all.  The only daft question is the one you don't ask in my humble opinion. Get your answers Kel to finally put your mind at rest.

Good luck 

Macca

[Winb143]

Good luck Macca for tomorrow, you'll be okay xx

 

Kel,  Have you heard anymore from your hospital ??  xx

 

Good luck one and All xx

[Tina]

Kel hope you got on ok ? xx

 

Macca good luck for tomorrow xx

[Louise]

Hope all went well Kel?

 

Good luck today Macca..