Neuro Surgeon Appointment tomorrow

[Jan]

Hi All, hope youv all enjoyed the Bank Holiday. ?

I just want a little advice. I had MRI and MRA scans in June to check on my unruptured anni, I have appointment tomorrow for the results.

 

I have to admit I'm worried I case it's changed because I have been told it cant be coiled so I would need a craniotomy and would hate to go through that again. I know I could be worrying over nothing but that doesn't stop me worrying,

 

Anyway, more to the point, when the appointment came through a couple of weeks ago, I thought of loads of questions I wanted to ask , some about the original rupture and what it affected etc.

 

One obviously being short term memory loss but I cant remember the other 20odd questions ! How I wish Id written them down. So if any of you have been for an appointment for results etc. can you suggest anything that I should be asking?

 

Sorry to have waffled on so long

Love Jan xx

[Chris G]

Good luck with the appointment. I don't know what you should ask but I wish you well. 

 

Chris. 

[Winb143]

I am like that Jan. 

 

I can rabbit  for my Country when nervous (Not saying you do) oops !!! Sorry Jan no slight intended. 

 

I just asked what concerned me, so think back to your main worries and write them down.  Perhaps others will come to mind.

 

Now go and say all you want to know and ask hubby if he can remember your worries and his.  xxxxxx

Good Luck for tomorrow

 

Win xxxxxx what short term thingy  lol xxxx

 

 

 

[Gemma B-B]

Good luck with it all Jan. In terms of questions maybe:

 

How does the aneurysm size compare with previous scans - has there been any noticeable change?

 

If yes - is it significant and what are the next steps?

 

If no - what is the plan going forth in terms of management and on-going monitoring?

 

I would also suggest writing down your consultant's responses in the appointment for review later. If someone is going with you then they could do this so you are free to chat - my husband does this for me.

 

Hope it all goes well and you get the answers you want

 

Gemma xx

[Jan]

Hi Chris, Win and Gemma. Thank you for your replies ?

The good news is that my anni hasn't  changed size or shape

Thing is now, I have to decide whether to continue having it monitored or have a craniotomy to get rid. 

 

 

[Jan]

Since my SAH, decision making has not been one of my strong points so I would really welcome any advice or your experiences if you've been in a similar situation. When my surgeon said the anni had remained the same, I assumed that I would just continue to be monitored until such time that an operation was necessary, I didn't expect an operation to be mentioned yet.

 

He has told me that if we continue to monitor it, it has a 0.7% chance of rupture for this year. And that the numbers increase every year as I get older, although he did say that I was young (so that was nice!!)

 

Other numbers given were a 3 to 5% chance of stroke during the operation the cardiovascular radiologist seemed to think that coiling. Might work, Anni is 3mm with a wide neck Neurosurgeon would be happier clipping.

 

I know that this is my decision, but it's a huge one, . . Monitor.. Coil.. Clip?

I would love to hear about any of your experiences, good  bad or indifferent.

 

Thank you

Love Jan xx

[Susan]

Hi Jan

 

I had an MRA last Saturday to scan my unruptured 2mm aneurysm and I see my neurosurgeon for the results on 13 September. I was told that if mine hasn't changed this time I'll be scanned again next year, then in 2 years and then in 3 years. I really feel for you - I'm just hoping mine hasn't changed and I have no decisions to make.

 

If I had to make a decision of some kind I would probably ask my neurosurgeon what he would do if it was in his head. I suppose it also depends on how much you fear a rebleed and how much having an unruptured aneurysm is on your mind. I haven't honestly worried about mine since I last saw my neurosurgeon 6 months ago.

 

Personally if I was given the odds you've been given of a rupture against the odds of a stroke during the operation I would be opting for further monitoring for myself.

 

At least your aneurysm is stable - that has to be good news. Take care. xx

[kempse]

Hi Jan,

 

I don't like being faced with decisions - any decisions I find difficult to make these days, but quite recently I was faced with a similar dilemma - whether to go ahead and have coiling straight away or continue to be monitored.

 

My sah was in November 2008 and another unruptured 3mm one was discovered at that time.  The one that ruptured has a wide neck and is 8mm. After the first 3 month check, it was decided it needed more coils put in - I think it must have been suggested it was necessary as I don't recall having to do any decision making.

 

After a few cancellations I finally had more coils put in 11 months after the bleed.  I was then monitored annually until 2012 when they said neither aneurysm had changed, so they were happy for my next scan to be in 3 years time.

 

That scan was Aug 2015 and when I was called in for the results in October they told me the one with the wide neck had changed slightly and I could either proceed with even more coiling now or be scanned again in 6 months.  

 

That decision was actually easy to make because the day they told me, my husband was a few miles away in another hospital, in intensive care having had, two days earlier, part of his aorta replaced and a new aortic value.  Thinking about brain surgery as well as heart surgery was just too much, so I opted for another scan in 6 months.

 

Following that scan earlier this year, I saw my consultant who, partly because he was about to leave that hospital, suggested I had an appointment with the bloke who had done my two previous coilings.   It was after that meeting that I was left with the decision to either go ahead and have an angiogram to see if I would need a stent put in to hold more coils or be scanned again in a years time.

 

Like you, I was given statistics about the chance of a stroke during the procedure and for me, that was what I based my decision on to not go ahead, but be scanned again in 12 months.  Even though I turn statistics round from say 5% of possibly having a stoke to 95% of possibly not having one, I felt easier not putting myself at any risk whilst being physically able and leading a very busy life.

 

 I did also take account of him saying he was happy whichever choice I made.  He appeared quite laid back, saying it was up to me - he'd done hundreds of the procedures and it wasn't as if he needed the practice!! 

 

The down side is that I may be faced with similar decisions either next year or in future years - I just have to hope and pray that it doesn't change any more.

 

Thankfully the 3mm one has not changed in nearly 8 years although I have been told in the past that if that needed treating, it would have to be a craniotomy and if I had to make a decision on that I would find it very difficult indeed as for me it would be completely unknown territory.

 

It's not easy making such serious decisions, but I hope you can reach a decision that you are comfortable with.

 

Sarah

 

 

 

 

[Colleen]

Hi Jan,

 

I can say I wasn't really given a choice following my ruptured aneurysm in Nov. 2008.  While the ruptured anni was coiled immediately, a second, wider-necked aneurysm was found during all the scans and angiograms.  I don't remember the size it was, but my neurosurgeon was quite firm about needing to do a craniotomy to clip it as soon as the blood from the rupture dissipated from my brain.

 

So two months later I had the surgery.  Since the two aneurysms were close together, the dr. went ahead and clipped them both.  I had follow-up angiograms at year one and two post-bleed, then a few CTA scans over a period of four years.  I've been told I no longer need monitoring as the clips aren't going anywhere.

 

I was very nervous about having the craniotomy and my interventional radiologist at the time told me there was no need to worry, that Dr. Kim had done this surgery so many times and he is very good at what he does.  Turned out it was much easier recovering from the surgery than the SAH.

 

Even being reassured that the clips make me aneurysm-free, I am paranoid whenever I get any out of the ordinary weirdness in my head.  I definitely do not regret the clipping surgery.  However, if your doctor is giving you a choice, he must not be seeing your unruptured aneurysm as an imminent threat.  I guess it comes down to how much it stresses you to continue with monitoring.

 

Best wishes, Colleen

[subzero]

Many thanks for your responses to Jan`s question.....

 

Just on the %`s of something going wrong during a procedure. The medics know that there are potential risks in all medical procedures and find it their duty to make this clear to their patients.

 

I recall five years ago when Mrs Subs was awaiting her coiling....the neurosurgeon mentioned that in addition to the possibility of a stroke during the coiling, even with the angiogram prior to the coiling there was a one in a thousand chance of blindness.  Small odds, but I remember being concerned about this too in `my`  fragile state ! 

 

Thankfully all went well.

 

Subs

[Winb143]

Feel for you Jan, but when I was having just a shunt put in the Surgeon said if it was his wife he'd give her the chance. Hubby was scared of me going under again.

 

Speak to people and ask Surgeon what if it was his/her Partner, what would they do?

 

Good luck and I hope you make the right decision for you and family.  But mainly you !!! xxxx  xxxx.

What about the new pills/drugs out?  

 

Good luck  ( I couldn't make a decision ever, anyway )  Clipping is less invasive I think,  but they might bring something out new and modern.

 

[Jan]

 

Thank you all so much for taking the time to share your experiences with me  and Thank you Subs for looking after me! I started posting this at 5.30 this morning but because Id been awake since 3am, I deleted it and decided to try later.

 

Colleen, I admire your bravery and understand totally how good it must feel to be Anni free.

 

Sarah, how on earth have you and your husband got through the last few years? You must have an amazingly strong relationship.

 

Susan, ill be thinking of you on the 13th, heres hoping theres no decisions to be made?And yes, I prefer th % for monitoring! ,

 

Subs, as you say, small odds maybe ( re angiogram) but not what you want to hear when your loved one is about to have an operation.

 

Win, I will ask the surgeon what he would do if it was his wife/partner. 

what are the new pills/drugs that are out? I dont know about them.

 

Thank you all again for your advice and support, I don't know where Id be without all you lovely lovely people

Love Jan xx

[Gemma B-B]

Dear Jan,

 

That is a tough decision - you have my sympathy. It is always difficult when faced with decisions about something like this. As odd as it is it makes me greatful that my brain haemorrhage left me in a coma as then it was not me who made the decisions about surgery - it was my husband.

 

To be fair though as others have said on here that was a tough decision for him, however at the time it was my only chance for survival so he had to go for it regardless of risk. Same when I had my shunt fitted a few weeks later.

 

More recently I too have faced the prospect of more surgery. This for me has been in the form of spine surgery to decompress the arachnoid cysts that are pushing on my spinal cord. These formed as a result of the haemorrhage and have left me with loss of feeling/walking issues etc.

 

When I first saw the spinal specialist he had only seen my scans and from them thought I was going to need surgery almost immediately. After meeting me he agreed to wait on this. Partly as I was still walking around with the aid of a stick and also as I had just taken a year off work after the haemorrhage and had been back at work for less than two months.

 

I went in for more scans etc. and last saw my spinal surgeon in June. We both agreed to go for conservative management i.e. monitoring over the next few years. This was because my scans had not shown the cysts were any worse and my walking etc. had not deteriorated.

 

I am happy with the decision for conservative management. The spine surgery carried a lot of risks - those in terms of the surgery itself and the potential for me to lose more feeling or even ending up paralysed. I also have additional risk due to my heart condition and I had my brain haemorrhage in heart surgery, which makes me somewhat nervous of surgery!

 

There are also risks to leaving it though. I may get suddenly worse and if I do I might lose the ability to walk completely. Any spine surgery I have is unlikely to make my any better so the risk I run by doing this is that my walking will deteriorate and then even if I have the spine surgery it is unlikely I will gain back the ability to walk. I have decided to take this risk though.

 

In terms of advice for you I am not sure what to advise. I would probably try to weigh up and pros and cons for each option and think about if you can live with the potential risk of rupture or if you would rather have the surgery and run the risks with that. It is a very tricky choice though.

 

I have also been told that I need an angiogram so they can have a check on my brain and try to work out the cause of my brain haemorrhage. Once again I was fairly reticent to have this done due to the risk of stroke and also as I get somewhat tired of the amount of time I spend in the hospital.

 

I saw my neurosurgeon though and he spoke to me about what they want to look for (an AVM) and what my risks were if I had one and it was not found (quite a high risk of another brain haemorrhage as it turns out). In this case I decided to have the angiogram done even with the risks attached.

 

Take care,

Gemma

 

 

[Sharlua]

Jan I really feel for you and having to make such a decision, I had a 10mm aneurysm and when discussing with consultant he outlined the risks of the coiling (due to where it was  he felt coiling was less risky) and these sounded awful - he did try and put them in perspective and explained that he felt the risk given its size of bursting was greater - so it was an easy decision given that they highly suspected it had bled given the thunderclap headache, vomitting and awful popping sound I had.

 

Given the size they did not do lumber puncture as they said they would have to treat regardless.  My sister has 4 unruptured ones but they are very small, they have stopped monitoring now which worries her.

 

Not sure what I would do in your situation apart from asking more questions and good advice about asking if it was him or wife what would he choose.  It is good that age is on your side and like subs says there is risk in any procedure even when I was having bowel surgery they told me the odds of dying and other complications -  in this claims culture they have too.  

 

I do do hope you are supported to make the right decision for you.

 

Regards

 

 

Sharon x

 

 

[Jan]

Hi Gemma & Sharon

Thank you so much for your replies what difficult, complicated lives we lead.

I sometimes look at my sisters with complete envy, I just think 'you havent a care in the world'

Actually, to be honest, I look at a lot of people like that

 

Its only the people who have been through these experiences that truly understand the worries, the fears the uncertainties etc.

Thank Goodness for BTG.

Love Jan xx

[Colleen]

Sharon is quite correct about the healthcare folks being required to fully inform us of details and risks.  I remember when I was being prepped for the craniotomy a young resident physician came in and began to detail all the steps of the surgery.  

 

When I told him I didn't need to know the details he insisted I must hear them and still consent to the surgery. I'm may have run down the hall if I hadn't been all hooked up to tubes and had my husband to keep me from leaving!

 

Try not to stress too much; that definitely won't help anything.

 

Colleen

[Susan]

Hi Jan

 

I hope you are well and not worrying too much.

 

When I first came to BTG I read a lot of the posts on the untreated aneurysms forum -  I know there are some with similar dilemmas to your own. I decided early on not to read any more because I wanted to put the aneurysm out of my mind - there was nothing I could do about it for at least 6 months so I figured it was better not to think about it. I know if I ever do need to make a decision on it though I will go back and re-read all those posts. I'm guessing you are already doing the same.

 

As far as the statistics are concerned, I know they are not everything.  If I was given those statistics and told my aneurysm was stable I think I could live quite happily with that for another year, but if I was given similar statistics and told my aneurysm had changed, even slightly, I think that would be much harder to live with. 

 

What is important is what you yourself can deal with psychologically.  There is no right or wrong answer - we are all individuals with different personalities and concerns. I have always had the tendency to beat myself up over making the wrong decision (though less so since the haemorrhage). My own fear is to make a decision, have a bad outcome and find it difficult to move on psychologically from that.

 

I suppose that is why for myself I may find it hard to have the aneurysm treated unless I am given clear indication, as Colleen was, that the treatment is recommended. I know ultimately the decision has to be down to us, but it does seem unfair that we can be placed in such a quandary.

 

Try not to worry too much and don't lose sight of the positive fact that your aneurysm is stable and you have time to make the decision that is right for you. Wishing you all the best. Take care. X

 

[Jan]

Hi Colleen and Susan, thank you for your messages,  A big thank you for thinking about little me, it means such a lot

 

Ive had my appointment date to see my neurosurgeon 25  Oct, so I still have some thinking time. At the moment, Im thinking that Ill go for the monitoring option, get myself physically and mentally stronger.

 

My physical recovery since Sah has been good(apart from the left sided weakness, but even that is improving slowly.Im not ready to go back to square 1 and have to start all that recovery entails again

Love Jan xx

[momo]

Hi Jan.

 

I too have an untreated aneurysm that is being monitored ( I also have another blip, not an aneurysm). I had a consultation last year regarding this aneurysm and the outcome was that they put it at very low risk and that they didn't recommend treatment.

 

It's very small in a relatively safe area(if there is such a thing!) and the risk of rupture is just 0.1%. They first discovered it when I had my original bleed eight years ago.  It has been scanned several times during the years and it hasn't changed at all.

 

But what they didn't know was that I had already decided no more surgery for me...seems strange I know but I just couldn't go through it again..

 

If however this aneurysm had changed drastically had become unstable and the risk of rupture had been much higher say 10 - 12% then I would have gone along with what they would have suggested. 

 

As long as there is a 99'9% chance of nothing happening I'm happy to be monitored and take those odds.  (Add on to this the fact that I'm a complete coward and the thought of anymore surgery terrifies me..)

 

 So although they made the decision for me I had already decided before I even walked through the door.

 

Good luck with it all Jan get all the facts and try to make the right decision for you..I understand completely how you feel..

 

[Jan]

Momo thank you for your message and your understanding,I,like you am a complete coward. I know that my surgeon saved my life last year, for which, I am obviously forever in his debt.Actually,I only realised this when I came home. (Whilst in hospital I had no idea of the severity of what Id been through)

 

I do know that I hated every minute of my hospital stay. I was a terrible patient, always asking 'when can I go home? I'm sure some of the nurses (who were lovely) were pleased when I was discharged ! 

Love Jan xx