Leo

Hi all,

Id super appreciate if anyone can give me lots of info....I cant seem to find a lot on here, Im unable to stay logged on for ages as I just get too tired...I am due to be clipped any time soon, Im simply awaiting call. I had SAH coiled in Feb 2012, seems now the coil has moved leaving a gap etc...

I am 35 and a mum to a 7 year old, very mature however!!! Id like to know all the info....how you felt straight after, scar, pain, how managed...what could or couldnt do.....I know im unable to drive for 6 months etc.....strangely had a driving assessment with DVLA booked for Jan, which ill have to maybe cancel now.....

Id just like to know all as they dont tell you....I know risk of fits...anyone had, or not had.....I am quite honestly terrified, but FULLY understand this procedure needs to be done...Im strong...kind of!!

Any handy hints...anything honest....I just dont feel they tell you all etc......My Neuro told me that he doesnt have to shave hair at all???? Eh???? Really??? Is he superfabbo??

Thank you all, please understand although im 35 I actually feel 15

Hi Doodles,

I, too, was clipped so hopefully I can be of help.

PM me if you want any details.

The size and location of the scar depends on where your anni is/was. Mine apparently is quite discrete but I notice it all the time and refer to it as my 'war wound' - I went to battle with my brain and won!

I was 36 at the time of my emergency clipping ... terrifying but I knew I needed it.

Anytime you need a chat, let me know.

Best wishes for Christmas and the surgery,

Leo x

Hi Rachel I have suffered with chronic headpain since my clipping in 2006 after my G.P sending me for ct scans and being sent back to my Neuro-surgeon a few times he finally decided that as it had been constant for so long that it may be caused by a trapped nerve and no further action can be taken.

I have been taking a low dose of anti-depressant for about five years that helps with the nerve pain it doesn't get rid of it completely and the pain can flare up quite badly at times but my G.P allows me to increase my dose from anything from 10mg up to 50mg as needed.

I manage the pain as best I can but it can and does have an impact on my lifestyle.

Hi Janet,

I'm 4 years post clipping and am still struggling with daily headaches and a strange sensation of pressure near the clipping site. I've seen many, many doctors. Only one mentioned nerve damage and the next time I had an appointment with him, he'd changed hospitals and none of my new doctors believe in nerve damage caused by surgery. They smile and look at me as if I am stupid.

So, I still take pain killers which dull the pain but never fully gets rid of it.

Dear Friends,

I'm not sure how many people on here use a Blue Badge or have family members who do but I thought I should alert you to some possible changes that my union alerted me of ...

A consultation on the Blue Badge<http://www.direct.gov.uk/en/disabledpeople/motoringandtransport/dg_4001061> parking scheme for disabled people has been launched by the Department of Transport and runs between 9 July and 2 October 2012. The consultation forms part of the Government’s changes to the welfare system and the transition from Disability Living Allowance to Personal Independence Payment. Transport Minister Norman Baker introduces the consultation:

“The Government is taking forward important reforms to the welfare system. One of these reforms will involve changes to Disability Living Allowance and will affect eligibility for a Blue Badge. About a third of all badges are currently issued to people who receive the higher rate of the mobility component of Disability Living Allowance. My Department is therefore seeking your opinions on the options we have for dealing with the impact of the changes.

I am committed to ensuring that the Blue Badge scheme continues to be focused on those people who will benefit most from the parking concessions that it offers, and that it is sustainable in the future. I hope that you are able to let us know what you think of the options presented in this consultation document, before I make a decision on the best course of action.”

In seeking to address how the scheme will operate in the light of the forthcoming implementation of Personal Independence Payments (the replacement to DLA), the Department has identified 3 options, namely:

* Option 1 – no legislative link between eligibility for a Blue Badge and eligibility to Personal Independence Payment,

* Option 2 – establishing a legislative link between Blue Badge eligibility and the enhanced mobility component of Personal Independence Payment,

* Option 3 – establishing a legislative link between Blue Badge eligibility and those who score 8 points or more within the ‘Moving Around’ activity within Personal Independence Payment. This assesses a person’s physical ability to get around.

The Government’s preferred option is Option 3. The Government’s view is that with this option, eligibility for a Blue Badge would be most similar to the current scheme and the potential impacts of this option are minimal. The Government will consider this in light of views and comments received as part of the consultation, together with suggestions for other practical and sustainable solutions.

UCU is concerned that the Government’s preferred option 3 measures eligibility of blue badges against gaining points on the new PIP Activities Tests<http://www.disabilityrightsuk.org/f60.htm>. This relies on points scoring according to the medical model of disability which fails to capture and give a true representation of the challenges disabled people face. Those who have already qualified for a blue badge and who rely on them for equal mobility may lose them under the new criteria.

You may wish to respond to this consultation. The consultation concludes on 2 October 2012. Any consequential changes to the Blue Badge scheme will be phased in and will affect existing badge holders when an existing badge expires and they need to apply for a new one.

The consultation document can be found HERE<http://www.dft.gov.uk/consultations/dft-2012-30/>

You can respond to the consultation by emailing bbes@dft.gsi.gov.uk<mailto:bbes@dft.gsi.gov.uk>

Or by writing to

Sally Kendall

Traffic Division

Department for Transport

Zone 3/26

Great Minister House

33 Horseferry Road

London

SW1P 4DR

Sorry for posting such a long message but I couldn't help it!

I was having a nice chat with my parents. I was relaxed and happy ... It was both the best (for me) and the worst (for them to witness) place for it to happen.

This may sound a little silly .. but ..Can anyone who had their SAH clipped tell me how long it was before they started/were comfortable lying on the affected area when they slept ?

Two and half months since i had mine done and i still sleep on the unaffected side only

Oh, and one more thing Nic - THERE ARE NO SILLY QUESTIONS!

Hiya, I cant remember how long it was but it was quite a good few months woke up one morning on 'that side' & thought wow.

Hi,

It was the same for me as Louise.

One day I just woke up and thought "Oh!" because I had slept on my clipping side and the discomfort had not woken me up. However, sometimes it is still too uncomfortable for me to sleep on and I do wake up in the night having turned onto that side.

I guess we are all different and the best thing might be to find something to support your shoulder or try to sleep on your back until you can comfortably sleep on the clipping side.

I'm sorry there isn't a straight forward answer.

Best wishes,

Leo x

Hi,

Your story sounds all too familiar. I also teach and the fatigue is shocking. I never thought of it in these terms before but by Wednesday I am like a zombie ...

I love my job but I do think that bit by bit it is killing what's left of me. And that is very hard to admit.

"Recovery" is such a subjective concept. I was so looking forward to getting back to work and being better. But now I'm not convinced that we do recover from such an insult to the brain. Yes, we are surgical successes as we are all still here. But ... well we all know the problems that some of us have had to overcome or are still struggling with on a daily basis including fatigue.

I have had to build coping strategies into my life to enable me to carry on teaching.

L x

PS: I am sorry if that sounds grim. I am utterly exhausted today.

Hi Michelle,

I've got no suggestions on dealing with the fatigue ... I just wanted to reassure you that you are not alone in the daily battle.

Love,

Leonie

Wow! I've never heard of it being prescribed post SAH either. But I personally think anything is worth a try. I was given morphine patches a couple of years ago. They didn't help with my headaches but did leave me feeling rather sleepy ...

If you feel brave enough to try them, please keep us informed as to how you get on!

Take care,

Leonie x

Hi Dransdell,

I, too, understand how you feel. I'll be 4 years post SAH on New Years Eve and I have had pain in my head ever since. I also feel a constant pressure like someone is standing on the side of my head where the clipping incision is. Various doctors have told me its migraines or damaged nerves. Medication can help take the edge off but it is never actually gone. I even underwent inpatient treatment this summer and was put on beta blockers but those only made me feel worse - and I didn't know I could! Sometimes the pain in my brain feels like a headache, sometimes not. But following the SAH for the first time ever, my brain actually hurts when I am too tired. It's very hard to explain it to somebody who has never felt their brain before.

It all sounds pretty grim but after the beta blockers experience, I am determined to keep going ... I love to eat and therefore I need to get up and work . But it is terribly, terribly hard.

The only thing I can think of is, requesting another MRI/MRV from your specialist. It may put your mind at ease if nothing else.

Best wishes,

Leonie

Many belated congratulations Louise xxxxx

Sarah Lou,

It still makes me giggle ... out of the mouthes of babes!

X

I think that is such an individual thing.

I tell people I am a work in progress - acceptance is still in that stage as well.

I find I stare at people walking or riding their bikes, wishing I could still easily do those things. I also think it's sad that they probably don't appreciate their ability to do something so "simple".

It's kind of like a grieving process - we are all grieving our former lives and that takes time and is a very personal, individual process. Eventually there is a point of enjoying the "new normal". I just recently realized that every day I've had for the last 23 months is a day I shouldn't have been here so I should try to enjoy it good or bad. I still have very down moments (I had a really good cry yesterday) but this forum has helped me a lot. When I was sad yesterday I thought of Win telling people to have a chocolate and shop and it made me smile!

Kelly

Hi Kelly,

It is a very individual thing and I suppose it depends on how much each person has to try and slip back into their old life - such as going back to an old job where you cannot help but notice the impact.

Like some have said, not everything has been a negative experience. The love, commitment and understanding shown to me by family and friends has taken me by surprise. I wasn't expecting to be abandoned by them but their relentless support sometimes knocks me for six. On the not-so-good days, it really helps to remember that I'm loved despite my new and interesting characteristics post SAH: forgetfulness, bouts of bad language, fits of temper, episodes of fatigue and lack of patience with everyone including myself! As one friend's 4 year-old-child told her Mother earnestly at my bedside "Schh! Auntie Leo is sick in the head!" Makes me giggle to this day ...

Time for some ice-cream now. Food therapy!

I completely understand what you are all saying.

But can anyone answer ... when or how does one begin to completely accept/understand the "new" you?

I have been trying since my SAH but it is so frustrating at times, knowing that pre-SAH I could have or would have done something without batting an eyelid and now, just about everything bar breathing has to be planned. One day on, one day off so my body/brain can recover. I'm aware I'm not being very eloquent but all I'm trying to say is that I agree, it does feel like a huge part of me is missing, that the key is gone and I'm trying to rebuild myself again. It hurts that I won't be exactly the same again.

I know I am extremely lucky to be alive and try and keep my spirits up everyday but life post SAH is different and exhausting!

Leo

Dear John,

I totally agree with you about the campaign but for differing reasons.

Luckily, my friends and family have been an unflinching tower of support over the past three years but I think the bigger issue for me is my wider community, especially in terms of employers and work colleagues.

It is definitely a case of "You look OK, so you must be OK". I think despite, initially, the best will in the world, patience does run out because people do not realise that it feels like we are running on empty for the most part. I had no idea how much energy it took my brain to perform even the simplest of tasks before my SAH. Now staying on top of everything is incredibly hard. The fatigue from the effort is relentless.

I'm really sorry that your friends have let you down. Especially after the effort you made.

Let's start a campaign to raise awareness of closed brain injury!

Leo x

Hi

Thanks for your comments. Yes I was more relaxed about it all when I wasn't given the option of having treatment. Now that I have the option and have to make a decision, it's on my mind a lot more.

I think I will wait and see. If it grows bigger it will be apparently easier to treat with less risks.

Also things seem to be moving fast in this area of surgery so maybe in a couple of years' time, things might be a bit less risky, who knows.

Warm wishes

Anne xxx

Dear All,

I found this stream really interesting as I have an untreated anni that is also 2mm but I wasn't actually given the option of having it coiled. I was told it was too small to treat and too risky.

No matter how much I try and ignore it, it does worry me that there is something potentially growing again in my brain as I had such a terrible time during & after my SAH.

I'm due for my annual CT scan next month so I'll see what they now advise.

We should compile a list of who is offered what treatment in different parts of the country!

Hope you are well,

Leonie

Hi Maggie,

I'm sorry to hear that you are suffering from so many headaches. But at least you have a reasonable diagnosis (nerve damage). All the neurologists I have seen had said there is no such thing and I must be suffering from migraines (!) and the one pain doctor I did see diagnosed nerve damage but then he left the hospital before I could be treated with Pregabalin.

Your post has me thinking, perhaps I need an MRI scan???

"Recovery" such as it is, can be a very long, frustrating and painful process. But the suggestions made by other members here are worth pursuing. When you are having a 'good head' moment!

I, too was on Tramadol for a long time but I found that it was making me feel sick so I had to stop taking it. Chronic pain, especially head pain, is very debilitating.

I know it must feel like it sometimes, but you are not alone.

Hugs,

Leonie

Good luck Jan, as everyone has said before, you'll probably be surprised how quickly you bounce back after an elective coiling.

Hope it all goes well & have a wonderful holiday xx

Leonie - see my blog post here, to get an idea of what it is. I just phoned them and they sent me two cards.

Lynne is so articulate, as always!! This miscommunication you described happens to me and is really getting on my nerves; my partner, who I love dearly and who I know loves me, has been finding it very hard. I know he knows "intellectually" that I've had a huge life changing event, but he does seem to find it hard when I don't react the way I used to or when I forget stuff.... I feel like he doesn't understand me and he feels like I'm not sympathetic to things he's going through. After 12 years it's like we are on different planets and we were SO in tune before. So, yes, it's tough, but I insist on keeping the channels of communication open, and I cry sometimes, but we seem to be getting there. The thing is, if this is what it's like with my partner of 12 years, then no wonder it's hard communicating with other people!

Sorry, I've rambled. What was the thread about again??!

Thank you! I have had a really bad few weeks and only just came back to BTG.

I've been through all that I find I'm very upfront with people now (case of had too) if they cant understand then its my job to tell them that I cant do something, cant understand something fatuge ect. Sometimes I use the card form Headway but thats only been on one or two occasions.

I have to say this is def something that the old me would not do but now I wll..I have gained determination and stamana...

it took a long time to accept the 'new person Id become' but now I kind of like her, ok so I cant multi task, I dont have lots of things going at the one time but hey we only do that because we have to, now I dont have to...

I dont think we should dwell on the person we were, the things we cant do, but welcome the person we are now....

Guess tho as much as You cant change neither can They!!!!

Hi Louise,

What card from Headway? I think I may need some!

Thanks,

Leonie

Thanks so much for answering. Im pretty concerned that it may all be for nothing as so many other things that have been done to me have been. Im a huge coward medically after all the errors that have happened. I mean if it works for a few weeks 4 or so, then is it really worth it? Mind you if you have had more than one, then presumably you think it is. Anyway, I so hope you head feels better tomorrow. I really understand how it is to live with such dehabilitating pain on a daily basis.

Dear Sarah,

Thanks for being so patient.

The first injection I would say was a success but I say that with certain qualifications. It could not be given on both sides so whilst the headaches were considerably reduced on one-side of my head, the actual side where I have had the craniotomy (right side) still felt like someone was constantly pushing against it and occasionally I did suffer from headaches on that side. But they mostly were relieved by paracetamol for about 4-6 weeks.

The next injection didn't work so well. I didn't really feel any relief at all. Apparently this can happen: it works once, twice, then doesn't or is less successful.

On both occasions, my neck (the bit nearest my head - I can't recall the technical term for that bit) felt like I had been kicked in it for about 4 days after. Was really sore. But I was warned about it as the doctors have to poke around pretty fiercely to find the exact place in the nerve to inject - thus heightening sensitivity for a few days after despite the local anesthetic that is used beforehand. The actual GON itself does not hurt, though you may hear it if it is near your ears (weird but not painful).

I hope this helps with your decision. And that my ability to give too much detail has not scared you off. The thing to remember is that although the local may sting, the GON doesn't hurt and the whole thing is over within a minute or so. I obviously cannot recommend whether you should have it or not, that is for you and your doctors to discuss but essentially it helped half my head once but didn't the next time at all. I, too, have headaches everyday and it is hard, very hard sometimes trying to cope with the pressures of day-to-day living/survival and the constant background pain that sometimes builds up to the point where you have to just STOP.

Keep it touch!

Leonie

Hi Sarah,

I am having a bad head day today (can't think) & will try & answer your question tomorrow if my headaches abate. Have had two so far will do my best to pass on what I know/experienced.

Leonie

PS. Feel free to nudge me if I forget to reply by mid-week!

Thank you Leo.

I have been off work since the end of September so I don't think i'm doing more than before - if anything I have discovered how much I can sleep, any time, any where now that I have stopped forcing myself to keep going!

Karen, I have been going to physio for a few months to try to help with my balance. Can you explain more about training your brain through physio please? (or was that a figure of speech lol)

Rod, i'm sorry to hear about your intruder - that is the last thing you need to have to deal with, hope all is ok now?

Happy, healthy New Year to you all xx

I understand about the new found ability to sleep, really I do. If you aren't doing more either physically or mentally (stress increases my headaches & fatigue) then it is probably best that you see your GP. Could be something totally unrelated like a virus (she says hopefully). Whatever the case, we all wish you well xoxox

And as for your last comment, I second that, Happy Healthy New Year to everyone!

Hi,

I agree with all of the above ... I think as time has gone on I am doing more and forgetting to rest as much as I need to then the fatigue sets in plus headaches which go on for days. The fatigue leads to the jumbling up of words, forgetting words, repeating myself and so on. All very frustrating. And so I try harder. Sometimes it is hard to keep smiling because it feels like two steps forward, five steps back as am so exhausted most of the time.

In 2011, I have to learn: MY BRAIN NEEDS TIME TO SWITCH OFF & REBOOT. Even Superwoman had a rest now and then!

It's very hard to get the balance right (am not there yet) but just to be on the safe side, I think Karen is right, go and see your GP.

Best Wishes for 2011,

Leonie x

I'm supposed to have my angio on Monday (I chickened out once already in October) and I'm really scared. Any reassurance would be greattly appreciated. Thanks! -Brenda

Hi Brenda,

I felt exactly the same way. I didn't even really understand the procedure until I was in the room having it done but from my experience all I can say is that my worry was based on lack of knowledge. The staff was professional yet friendly, put me at ease, explained everything and ... though it felt weird at times it didn't hurt at all. I put out a similar post last year and everyone who responded calmed me down and they were right ... what I had imagined was far, far worse than the reality.

Unfortunately this is one of the times when it is better to face your fears. You (and the doctors) know what is going on inside of your head.

Sending you another cyber hug and lots of handholding,

Leonie xx

PS: I also found it weirdly interesting to see images of my brain out of the corner of my eyes as I lay there unable to really turn and look at them!