Followup treatment?

[Slim]

Hi Folks

Back Treading the Boards again. (its never ending)

I just received letter from my consultant saying coiling fine etc and thats it. no further treatment. (I would have like some sort of observation)

I had picked up on the site people are getting observed and Donald thought from Edinburgh they said observation first year and then check me again in 10 years time but he won't swear to this.

Just wondering what other peoples experiences are. I know we've spoke about this before but it justs gets jumble up with everything else.

The hospital that is treating me is not the one that did my coiling. But my results etc are apparently sent down to Edinburgh.

My Follow up

3 months Consultant Appointment.

1 year failed Angio, but MRI instead.

Thanks for you help. especially keen to hear from the Scottish Folk.

Aine xox

[Skippy]

Hey Aine

I was told that MRI last February - then last August and then this August. But they were so happy with the way the atery healed that they didn't want to see me last August. I've also been told by my consultant that if they're happy in August then they will discharge me - he never mentioned having another MRI after - will ask him though when I have my follow up.

Sami xxx

[Louise]

Hi there

I was back & forward Angions, MRI for just under 5 years got discharged one week before 5th Anni-vesary.

But I was discharged from the re-hab hospital far quicker which actually wasnt all that good I could have done with going to their outpatients far longer but hey old story I looked ok & seemed ok.....

L.xx

[Guest janey]

hi all

I had follow up angios at 6 monthly intervals from first SAH and then after second SAH found another aneurysm. I still had follow up angios every six months. After last operation , surgical wrapping, (if anyone has heard of this please let me know) told next check up would be 2 years.

I also dont feel this is enough, I want to be checked. My doctor said to me when I said I was worried about this happening again, "at least you know what is going on in your brain, I have no idea whats in mine". That did give a different perspective. But i still worry and probably always will, regardless of how often they check me. You just cant win.

I remember reading somwhere that if you had coils then you needed to be checked frequently, as it was a relatively new procedure . I was recoiled , so wondering if anyone else had heard this? janex

[Vivien]

I had a checkup after 3 months

An MRI after 6 months

I got back to see the consultant on thursday ( 9 months) and will let you know if and when I have to go back again

[Guest Portia del Carmen]

My first little brain "accident" (nice way for the doctors to describe it to each other, I think - must use it more often myself) was coiled. I had an angiogram a few days after the coiling (which I don't remember - hooray!) and then a follow up angiogram about 15 months later (which I do remember - boo!)

Fortunately the neuro-radiologist was quite happy for me to be discharged the same day as the angio, after lying down and not moving for x hours. The only follow up they wanted to do after that was MRI after about another 2 years. Sadly 2nd "accident" happened to one of the other annies before then, so they managed to get another angiogram by default!

I understand from my consultant that they originally said angio every 12 months when coiling was a brand new procedure, but they have been doing it for a few years now and are more relaxed about check ups, hence MRI.

Second accidentally exploded anni and its next-door neighbour were clipped - no follow up checks or treatment for those, because as I understand it once it's clipped it's done and dusted. Coiling is less risky as a procedure but the coils can compact allowing part of the anni to blow up again (bad use of "blow up" there!) which is why they want to check it, I think.

[Janet]

Hi

Yes I was clipped as well had my follow up appointment the end of February last year and was discharged there and then. The reason given was that I had my only angiogram after the operation so it showed no further abnormalities so needed no further observation.

Janet x

[Slim]

Hi Folks

Thanks for you feed back.

Like yourselves I had picked up that coils can compact hence occasional observations were carried out.

Situations like yours Portia are what I worry about. After Original SAH being diagnosed as Migraine I really don't have much faith and whilst I do need to get over this I would like to feel I am being looked after. Essential once there are symtoms that means something has gone wrong. "Prevention ..........."

I emailed NICE (something to do with good practice in NHS) (Can't quite remember just now) will let you know if they get back to me.

Aine xox

[Guest Portia del Carmen]

Hi Aine,

I have to say that I'd be very interested to hear what NICE have to say - I have no sympathy for the "doctor" who told me I had "food poisoning" in 2003 when I had the worst headache of my life, photophobia, stiff (i.e. unmoveable) neck - in other words all the classic brain-stuff symptoms.

I have slightly more sympathy with my GP in 2007, who told me I had an "ear infection" since I had no headache, no neurological symptoms and thought myself that I had flu... I then I have much much much less sympathy with the "doctors" in A&E (where I went after suffering vasospasm which stopped me talking, briefly, which hubby quite liked, secretly, I think) who (a) were not interested in medical history, ( in the case of the consultant, a cardiologist who, when I asked specifically what he thought was wrong said "well you've obviously had a stroke although I don't know what type, when, how, or why you can still talk and walk" © the other doctors who knew/understood/were interested in nothing about SAH - I knew a great deal more than them, frankly, and (d) discharged me home without getting the full lumbar puncture result... before then ringing me to say come back, no we won't help you transfer under your private health insurance to the National, wait for an NHS bed to be available, and frankly we don't know what to do with you here until then, so perhaps you can tell us???

I think I'm having a stroppy evening today...

To be fair, I knew I had other anuerysms before number 2 went, but they seemed to be on the borderline of treatment size - I have never felt that the one that went first might go again, and the angios agree with that...

[stephen]

Hi Aine

I have my first follow up on thursday after my coiling. I will let you know what the Southern General say to me. My wife and two sons have made up a list of issues they want to discuss, it is two pages long!!!

Sorry to see the dons lost ( i did want them to win) Celtic in the Granite City on sunday.

Could i please say that Portia has me in giggles with the Boos and Hurrahs. It does put a smile on my face.

[Guest Portia del Carmen]

(Boo!!) no, my head's not working, I meant (hoorah!)

It's rare these days for me to make anyone giggle, least of all myself... it's a treat to read I made someone smile which put a smirk on me too...

[Slim]

Hi to the Night Owls,

Donald currently on the way home. They left early. By sound of things the deserve to be beaten. Donald a fly boy didn't mention The Bhoys were in Town on Sunday. He'll have a busy weekend. My Bro a Celtic Season ticket holder, so there will be some tormenting going on.

Portia don't think you are having a bad evening, you have every right to be angry. I think your treatment was appalling and worst still it isn't a rarity. if this sort of thing was a freak occurrance I would understand, an apology a least. Grrrr.

Will let you know the craic from Nice.

Nite

Aine x

[Shanti]

Hi everyone

I've just had a 3 month check up with the surgeon/radiologist who performed the coiling of large aneurysm at Salford Royal (Hope) Hospital near Manchester.

I have a smaller aneurysm which he said they can't coil and would have to clip if deemed necessary.

Told I will be called for MRI scan in May and again in November this year.

Must admit I would be really worried if I'm discharged later this year without follow up checks especially on the untreated smaller aneurysm.

Even without worrying about the untreated one, I think I would feel more confident if they checked me at least once a year for say, 5 years. It is a life threatening condition after all.

Love and hugs

Lesley xx

SAHs early Oct and early Nov 2007 post comm aneurysm coiled 13 Nov 07.

[Guest Portia del Carmen]

Shanti, do try not to worry. I know that's a lot easier to type than to put into practice!

I found out with my first SAH that I had 3 other, smaller aneurysms, none of which could be coiled. The surgeon wasn't sure whether or not to treat because they were small - there are "rule of thumb" guidelines for when they think the balance of the risk of treatment against the risk from the aneurysm makes it worthwhile to do - although those guidelines seem to change on a regular basis, and I think vary due to where the anuerysm is. Did they tell you how big your remaining aneurysm is? If not, then ask!

As it turns out, of course, for me the guidelines weren't perfect, since the second one "went" last year. I still have one untreated one left, which will be clipped later this year.

I have days where I worry constantly about it. But mostly I think that at least I know it's there, (which most people with aneurysms don't of course) and when it is fixed then I will know that my head is even more perfect (and metallic) than it is now!

The best thing to do is ask question after question of your consultant until you're satisfied that you understand their approach and the reasons for it.

Actually, the very best thing to do is probably to smile, laugh a lot and go on as many holidays as possible, so try that one first!

[Shanti]

Morning Portia

Thanks for your reply. You're right of course, I do just try to get on with it, its only now and again at the moment that I worry. But have to take into account my SAHs only Oct and Nov 07 so I'm still being watched over as it were by the hospital. This fact alone gives me confidence that I would be fast tracked if something further happened.

Also Portia just like you I get really down days when I could thump the wall and get really ratty with everyone. I think a lot of the time it's because I've got more time to think. Before all this, I ran around like a headless chicken fitting in running a home and working 40 hours a week at a stressful job for nearly 40 years. It isn't only the SAH and worrying that the smaller one will rupture, its all sorts of leftover emotional stuff from years ago is coming up for processing. Better out than in I suppose, its amazing how small and not as important as it seemed at the time major stuff from the past seems looking back at it over a space of 20 or 30 years. Its good to process it all and then file it away instead of carrying it around. Just a bit painful whilst processing it all. But for the most part I must admit I'm just happy taking my time and smelling the roses. Glad to be alive! ''

Morning Aine:

I really appreciate how worried you must be about this. How about writing back to the consultant and stating that you would feel more confident if there was an annual follow up. Or alternatively asking your GP to write to the consultant requesting the same and that your local health practice would fund the MRI scan or whatever. Just a thought.

Its early days for a lot of us on here, so we're all going to end up at the same stage as Aine at some future date. I might ask my GP next time I go in to see him.

Makes me laugh all this internet stuff: in the old days people chatted over the garden fence. Its amazing how nice it feels to just chat away. Well, must put the vac round, its sunny this morning and I can see the dust from here!

Paul's new car being delivered at midday so perhaps we'll go out for a trial run this afternoon. Would love to go for a spot of lunch somewhere nice, but must admit don't fancy sitting there with this black patch on and everyone looking at me. Even worse I have to put my ordinary glasses on top so I can see what I'm eating! ''

Lesley xx

[Guest Portia del Carmen]

Hi Lesley,

Reading your reply made me feel as though I'd written parts of it - although not the "I'm going to do the hoovering" bit!

I've also felt like I have a lot of old things to process since being ill - things that have been there for years and never dealt with. It's almost like the brain suddenly thinks to itself, "right, dealt with the big serious thing, now let's get on with the other stuff knocking around in here!" On top of all of that stuff, I also got married in May, which was obviously fabulous but stressful to a degree at times!

I like your description of wanting to thump the wall - ditto here! I've recently been prescribed anti-depressants, which seem to have brought the smile a bit closer to the front of my face, and am half way through a CBT course of treatment which I also think is helpful. Much of it is very much along the lines of common sense, but it doesn't half help to be reminded of it all!

Right, well if you're doing the hoovering, I need a cup of coffee!!

[tennissmithy]

Aine,

I'm reallt sorry I can't remember exactly! I went for a consultants check and MRI scan after about 6 months, a ct angio after 9 months, a consultants appt for results after 12 months. Now having problems again so just ha MRi and awaiting results again.

Sorry can't be more help

Laura

xx

[stephen]

Hi

Just been to see consultant today. I found out that i had vasospasms after my sah. They say this is why it's unlikely that my symptoms will improve.

I have to receive an angio in may and then again in a year for five years.

t

I do feel gutted at the moment and i will chat later.

[Janet]

Stephen

So sorry to hear that you had bad news from the Neurosurgeon sending you a big virtual hug.

Janet x

[Vivien]

Sorry to hear that news Stephen, but I was at the neurosurgeons today and I didn't have vasospasms, and they still said that they didn't know if I would recover anymore than I have. I think that they honestly don't know how much we will recover.

I also have to go back in a year for another MRA

[Slim]

Hi Stephen /Everyone

I'm with Viv whilst this is a very individual, know one really knows what we are capable off until the time comes. I think all of us would agree that we barely recognise the person we were after the SAH.

I certainly don't. Whilst 3 months etc are milestones. Its only now 1 year on I feel yeah things are going to be ok.

Whilst I had no major complications, I was indeed Dory Finding Nemo/an emotional wreck and a mouth that would have felt at home in Tourettes Bootcamp.

Don't Despair. Def don't let this set you back it really is best to take things one day at a time. You will get there.

Love and Hugs to you both.

Aine xox

[Guest Portia del Carmen]

I was indeed Dory Finding Nemo/an emotional wreck and a mouth that would have felt at home in Tourettes Bootcamp.

I think looking back I always was like that!! Thank you for making me smile in a ridiculously happy way at this time of night, Aine!

Stephen - with my first SAH I had no vasospasm. With my second, it was the vasospasm which was what made me go to hospital (I couldn't talk properly - said "shoes" instead of "bath" - long story!!)

My job and a lot of who I am is about my ability to speak, argue, debate, moan, etc... I was told by consultant-types that the vasospasm was in the language orientated part of the brain and they are surprised I can now talk normally, never mind about do the job.

I had the benefit of being treated privately for #2 which meant that I could see/ speak to consultants in person and properly (don't get me onto the soapbox of a dual-level health system, please, after my "check-up" after #1 on the NHS was a more junior, probably trainee, person who hadn't read my notes and asked me where my bleed had been and how many untreated aneurysms I had... got scared at that lack of knowledge)

Consultants are content to admit they don't completely understand the way the brain works. Indeed, at work a colleague of mine recently dealt with a case where a child had half of their brain removed (yes, really half of it) and was able to recover to an astounding degree.

The human brain is very adaptable and multifunctional.

When your computer crashes, you turn it off and on again and usually it works. I certainly think our brains are the same...

[Cal]

Hi,

Does anyone know what the follow up is with a SAH without having an aneurysm?

Jim is going for a follow up appointment in March to see if he is able to return to work, but nothing has been mentioned regarding any type of tests.

It seems that he should have at least an MRI.

Thanks,

Cal & Jim

XXX

[sue]

Hi Cal and Jim,

I replied on your other post before I noticed this one, I think I had my MRA last April, 4 months after the SAH, then saw the consultant about a month later, I can remember pestering the consultants secretary for an appointment because I had initially been told that I would be recalled 6 weeks after discharge from hospital.

If I were you I would def, make enquiries.

All the best,

Suexx