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Servicing Schedule after SAH


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Firstly thank you all for your welcome to the site and the replies sent, I found it very informative before I joined, so I can only imagine more so as a member.

Still finding my way round the site, so if I miss a reply or anything, I apologise in advance, still a 'newby'

 

My first query is;

I would appreciate it if anyone could give me an idea as to when/how long after, I might expect my first check up. SAH was 20/5/16 (coil & stent).

 

Thanks in anticipation

Best wishes to all

Subhem63

 

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So far I've had scans at 6 months and 12 months. Not sure what happens next. The surgeon did offer me a scan at 3 months but he left before putting the paperwork through so I just got their standard 6 months scan.

 

I may need more coils so I'm hoping they'll do another scan in 6 months time. I've never met my neurologist...met the surgeon in hospital but never saw the consultant so I'm not sure if I will get an appointment with him or the surgeon at some point too.

 

Andrea

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After I had my shunt put in to get rid of Hydrocephelus  it was approx. just over a year they gave me the all clear.

 

Now if head hurts or I feel unwell I must ask my Doc to contact Kings College in London or dial 999.

 

Makes note do not take up golf Win xx

 

Good luck SubHem and Weedrea  xxx

Win xx

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Hi Subhem63

 

Were you at the RVI Newcastle? I had a non-aneurysmal SAH 8/1/2016, so needed no surgery, and had a follow up consultation at the RVI neurovascular clinic 2 months later. I have an unruptured aneurysm they are going to monitor and have an MRA appointment at the end of August with a follow up consultation in September.

 

I got the letter for the follow up September appointment way back in March but only received the letter for the actual MRA appointment this month.

 

I 've found that the neurosurgeon's secretary has always been very helpful if I've had any queries about appointments, DVLA stuff etc.

 

Hope you are recovering well.

X

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Yes usually 3 months.

If you've not heard anything say at 6 months stage get in touch with them, people do fall through the cracks...

 

My surgeon went to Australia just after my 2nd op but I was lucky I was seen my another...

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Welcome to site, I was at RVI too and think my follow up Scan was 6 months but guess it maybe different dependent on the individual and how well any surgery or recovery was.  I had aneurysm coiled but luckily no stent so yours may be earlier.

 

I was anxious and was pleased when I had my first Scan don't have another one until next year.  Hope you're recovery goes well and look forward to hearing how you get on

 

regards

 

Sharon 

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Subhem,

My wife Irene had her SAH abroad a year ago, but on return to UK we had to go through hoops to get her into the NHS system. UK neuro wanted to do an MRI after 6 months, but were prevented by her having a pacemaker so they did a CT scan then and tested her VP Shunt.

 

This was followed up recently at about 12 months after bleed by an angiogram with which they are satisfied, such that her next check up will take place in two years time. They are considering just a CT scan to see if that gives them enough info.

 

Both of us hope you are recovering well from your experience.

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Hi Everyone,

 

This is what it's all about.

Put in what might appear to be a simple question, and wow, the hints, the advice, the general concern and well being, just comes bouncing back to you.

 

I know that many of the things we ask each other may appear simple to anyone who is not a 'Subba' if I can put it like that. I for one admit that if I'm having an off day, or should I say when.

 

However, reading the replies just perks you up ready for the next hurdle, perhaps it's because we know we are not alone in this.

Thank you all. Be Well.

 

Subhem63

SAH 20/5/16

 

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My SAH was 2001. For the first 5 years after I had 6 monthly angiograms at the General. Then yearly till 2013 I had checkups. I did take part in the national ISAT trials but this has now stopped,finished in 2013 .

 

However if I present at my GPs with a headache I am immediately sent south to Newcastle ( I live in Berwick) This has happened 4 times over the past 15 years and 3 times has been a false alarm.

 

Only once did it mean a hospital stay with a suspected new bleed,another false alarm. The NHS takes amazing care of you.

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Subhem63

 

I had my first check up at about 3 months, I think by that period of time they can determine how well the coils are doing their job, how well they've packed the aneurysm and stopped the blood from entering it.

 

In some cases there may not be enough coils or they've become compacted, so more coils are needed. Apparently that's happens in about 1 in 10 cases (I just happened to be the 1!)

 

I'm not sure if there's a standard 'servicing schedule' after that initial check up, or whether it's based on individual circumstances. Whilst some are discharged at some point, others have to be monitored for longer.  I've had annual MRI scans since 2008 - apart from a 3 year break 2012/15, but now I'm back to scans every 12 months.    

 

As your 3 month mark is approaching and if you've not heard anything in the next week or so, I'd be inclined to give the hospital a ring to find out when your check up will be.  

 

Sarah

 

 

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Posted on behalf of Subhem63

Hi Peter,

I hope that all is working for you both as it seems you have been through it a bit trying to get the treatment you deserve.

 

Half the battle is knowing that everything is organised, and you sound like the type of guy who is organised, you and Irene obviously make a great team.

Good luck to you both. Be Well

 

Subhem63

SAH 20/5/16

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Posted on behalf of Subhem63

Hi Sharlua,

Thanks for your reply, Like you say it seems to be relative to the individual and their recovery, regarding the follow up, everyone seems to have a different time spell, but they are all with a few months of each other.

 

At least I have a reasonable idea when to expect it. It's handy that others on the site have been to the RVI, chances are we have all been under the same people so will know how they work.

Thanks again. Be Well

 

Subhem63

SAH 20/5/16

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Posted on behalf of Subhem63

Hi Kempse,

Thanks for that, yes indeed a day I hope I'll never forget, at least that way I know the brain cells are working, which won't be too bad , they never worked before, so I'm improving already. I hope the two lads enjoyed the 49 balls, I'll have to try and find out who they are when I get back to managing to hit a golf ball again.

 

Thanks again. Be Well.

Subhem63

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Posted on behalf of Subhem63

Hi Louise

Thanks for that, that was one of the reasons also that I asked, I received a letter from the DVLA saying they had not heard from my consultant regarding my driving licence, paperwork was apparently sitting on his desk.

 

Guess what , he was on holiday as well., so I thought if I could get an idea when the check ups would be I could tackle him about my DVLA form as well. Method in my madness, you never know it might work., worth a try don't you think.

 

Thanks for replying. Be Well.

Subhem63

SAH 25/5/16

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Posted on behalf of Subhem63

Hi Susan,

Yes I was at The RVI, but I had a SAH, coil and shunt fitted, 20th May 2016, my story (I know where tomorrow is...) I have to agree they were great, but I really like to know what  I can expect and when to expect it., thus the query.

 

I think one of the biggest problems about our illness is the not knowing what to expect. This is one of the reasons I like this site, because of all the people like you on it, who can help each other with all the questions that go through your mind. Thanks again , be well.

Subhem63

SAH 20/5/16

 

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Hi Subhem

My SAH was 11/5/16 and the aneurysm was coiled. I didn't require a shunt. I have been informed I will have a repeat scan at six months followed by an outpatient appointment. 

Good luck with the DVLA paperwork. Mine sat on the consultants desk for 4 weeks. It has finally been completed today!

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Same here three month follow up, but they did say as I was discharged if I hadn't had an appointment sent through after a couple of months then I should chase it up as there was a fair chance they would "forget" to invite me in. 

 

In the end I had to chase it up as they did forget, sometimes the system just needs  a little bit of help!

 

greg

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21 hours ago, Nicola D said:

Hi Subhem

My SAH was 11/5/16 and the aneurysm was coiled. I didn't require a shunt. I have been informed I will have a repeat scan at six months followed by an outpatient appointment. 

Good luck with the DVLA paperwork. Mine sat on the consultants desk for 4 weeks. It has finally been completed today!

 

Hope the DVLA have sorted out their paperwork backlog....they had the response from my consultant in October 15 and took until March 16 to confirm I was clear to drive again (though my GP had said it was fine so I was driving anyway).

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I am 19 months down the line and am still waiting for DVLA approval - despite the fact that they have had my paper work for almost 10 months! I think the backlog is still well and truly in place though to be fair I think my case is quite a complex one, which is why it is taking so long (I have already had to go to a medical and a disability driving test). I think it is definitely worth chasing up with the consultant, as that held up mine at the start and the DVLA will not even start to look at it until they have everything.

 

Also echo what people have said on here about check ups. My first one was around 6 months and then I have been back twice since then to have scans and check the shunt is working. I think I am now going to a yearly check up.

 

Gemma

 

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  • 2 weeks later...

Hi Everyone,

 

Apologies for not answering all your messages earlier, I'm afraid I was heavily involved in work problems, accounts, stocktaking etc, etc, and unfortunately I paid the price of not sticking to all your advice, and it all got a little bit too much.

 

The family took the computer away, rest was the order of the day. However, I am back, and feeling pretty good considering.

 

Thanks for comments from Kukashika,  Kempse, Louise, Susan, Nicola D, Greg, Weedrea, Gemma B-B, and special thanks to Tina., for keeping me right when I sent everything to the wrong place and you put it right.

 

In relation to my check up, well probably just as well I rang the hospital, they actually said I would have check up in September. Changed their mind and then said November., they eventually decided October. So I think I'll give them a gentle reminder in September and see what happens.

 

The positive part of the phone call regarding the DVLA., who had previously asked for a letter from my consultant to verify my fitness to drive, the paper work was still sitting on his desk by the way, proved that the DVLA have their wires crossed. The letter they require is actually from your GP, as they are the people who see you, know you, and are able to advise as to your fitness to drive.  The very next phone call was to my GP who had the letter typed and ready for collection in two days.

 

Stress, what stress ?

 

Again many thanks for your support.

 

Best wishes, hope you are all as well as you can be.

 

Subhem63

SAH 20/5/16

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On 8/1/2016 at 16:15, Tina said:

Posted on behalf of Subhem63

Hi Louise

Thanks for that, that was one of the reasons also that I asked, I received a letter from the DVLA saying they had not heard from my consultant regarding my driving licence, paperwork was apparently sitting on his desk.

 

Guess what , he was on holiday as well., so I thought if I could get an idea when the check ups would be I could tackle him about my DVLA form as well. Method in my madness, you never know it might work., worth a try don't you think.

 

Thanks for replying. Be Well.

Subhem63

SAH 25/5/16

 

So sorry didn't see this.. Hope all's sorted now..

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Hmm, things definitely are different across the sea.  My GP wouldn't have a clue about my SAH status, other than that I had had one.  If I needed an assessment of my capabilities, it would have been my neuro specialists to make the determinations.  They also decided when scans and rechecks needed done.  I basically go to my GP to keep the referrals up to date.

 

Colleen

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Hi,

 

I was coiled after my SAH 1/9/2010.  I had a bleed in the left anterior communicating artery and it was said to be a larger than usual aneurysm and irregularly shaped as well.  At the time, they were worried the coiling might not last and that they would have to clip me instead.  However the coils held and clipping has not been necessary. I was seen every quarter for the first couple of years and now I am still seen every six months.

 

I think they are just reassuring themselves as much as me that there is a risk but they are still monitoring it.  I don't worry about it now as I am more than five years out and whatever will be will be, as they say. 

Whatever happens at least you know people are trying their best to help you.  There are many places around the world where it isn't the case and I am thankful that our country at least gives us a chance.

 

I have had a remarkable recovery and although there are still some problems they are but nothing compared to the wonderful care I received and continue to receive at the hands of our superb NHS at Salford Royal (Hope) Hospital.

 

Good luck in your recovery

 

Macca

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