Headway

Help please

Hello everyone, Happy New Year to you.

I had a SAH in 2016 and spent 8 weeks in ITC etc. Once I left hospital I had a follow up with the Consultant and then had an angiogram to check that the diverter valve and coils were in place. That was just over a year ago and have had no other follow ups. Is this usual? Do you not get seen again? I'm a bit anxious because of feelings and sometimes pain I get in my head. I'm not sure what is "normal".

Thank you to whoever reads this,

Best wishes

Judith

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I too have had a coiled ruptured annurism following a sah in August 2015 and I too have been on a very lonely journey and frankly disgusted at the lack of support, information, or medical care. It seems only too common so many stories telling their own story of discharged out of hospital after initial event and surgery, an mri offered after 6 months I think, and if like me very claustophic and cannot go into an mri any more and only through my own research found an open mri scanner down the road from my hospital, that they did not tell me about and would have been very happy for me to suck it and see without even that mri.These events are near fatal, very traumatic, life changing with a multiplicity of ongoing symptoms and nothing, ... it has been so hard to struggle on this journey and try to come to terms with the residual disabilities, post traumatic stress etc I have been shocked at the lack of support and knowledge I am sorry you are another one to add to the statistics

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Thank you Kathy. I’m sorry you’re having a tough time too. I think people don’t understand quite how traumatic it is to have a brain haemorrhage. I suppose I’m looking for reassurance that everything is ok and I don’t know how to get it. Xx

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I am told by medics that relatively they actually do not understand the brain and it's sophisticated complexities and so much is still un discovered added to each person is an individual and therefore although commonalities, each persons effects are different.Not sure what we can do to get brain injury the buzz word and condition as every concentration and focus is cancer these days. Once again I am in disbelief as to what is done for cancer patients in leaflets, support, fast tracking, emotional needs met, counselling, pamper days etc what do brain injury get.... sweet f a .alot of cancers are caught early very treatable and those sufferers go on and live a normal life. Brain injury takes so much away, we have so many needs, questions and as you say above all assurances needed. Do you attend a local Headway group I've only just found one and have found it useful to meet other fellow sufferers and share experiences, knowledge and what was a positive tip that helped them. In my group which I have no other knowledge of any other format but once a month we have an educational talk relative to brain injury and usefel bits come out of that too sometimes. Unfortunately it seems brain injury brings so many aftermath symptoms and a much longer recovery period than Iever imagined so every day is full of issues and now I just say they are all normal for brain injury so that means Im normal at last. I sympathise with you but dont have many positive examples of help along the way to share with you Im afraid and trying not to share all the negative ones to demoralize we have survived so guess that makes us survivors and that is special so guess that makes us special too! X

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Thank you Kathy. It’s just so good to talk to someone who understands. I hope 2018 is a wonderful year for you. Please feel free to message me anytime you want a chat xx

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Thank you and the same to you if you want to contact me please do. Intergrating back into society holding onto your old life and family and friends or accepting the changed you brings many challenges especially the amount of ignorance from people. I guess people don't mean to patronize or run away as they can't cope or know how to treat this now flawed and changed person, no one has a manual but it does add to the journey of the patient which is once again a good idea to talk with similarly affected people as we are the only ones that truly understand. I too wish you the best for 2018 x

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Hi Judith

I too had a flow diverter put in, but my op was pre-rupture. That was 18 months ago and like you I had a follow up angio after about 6m to check things had stayed put and whether it was working. Unlike you, my annie would not take coils - at 9.8mm with 2 lobes and double artery involvement it was too wide based and coils would simply have fallen out. So the flow diverter was the only treatment available to me.

Also unlike you, my procedure didn't sort things out. It was shown with the first angio that whilst the OCA lobe was responding the opthalmic lobe was still patent and measuring about 5mm. I have had only one general follow-up chat with the nurse since to check on my headaches, blurring vision and to advise that I will be getting another follow up angio in about 6 months time (and 2 yearly after that for as long as the aneurysm persists, which if there is no improvement next time is likely to be for ever). I guess I am now under 'wait and watch' style management and so there is ongoing involvement because of course the risk of rupture still persists for me.

In a situation where the aneurysm is 'fixed' I think your experience is fairly common. There is not a lot more your neurosurgery team can do for you once they have resolved the physical problem. The support offered by agencies such as Headway does seem to be patchy and a bit of a postcode lottery. Being on good terms with your GP might help you get access to other kinds of support - a lot of people find neuro-psychology and CBT helpful for example. Cognitive testing is invaluable as it not only identifies the specific deficits you are left with but the therapists may be able to suggest some coping strategies. Your GP is the gatekeeper for all these services and explaining to them that you think they would help you to cope better post-BI may enable you to access them.

Hope that helps.

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Unfortunately the NHS has insufficient funds to be able to follow everyone right through to the kind of secure ending we would like. It was pointed out to me early on that I now live with a chronic condition that I will need to manage for the rest of my life.

True unfortunately so I have made it my business to learn as much as I can and I discuss my options when I have to with my GP.

It is a great relationship which is mutually beneficial to us both.

I have just been back to my rehab consultant because we had hit a brick wall at the GP practice, now I am armed with more possibilities to improve my daily life. So it’s onwards again and upwards hopefully.

If I want to improve my life I see it as my responsibility, I can’t sit around on the off chance someone will come to the rescue, there are many more people in a critical condition that need that initial care .

Janet x

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Hello Malalatete

Thank you so much for replying to me. I will speak to my GP again. I think my problem is that I ‘m worried it will happen again. All I had was a headache and then I was gone and know nothing until 7 weeks later. I’d had a stroke and sepsis too during my time in the ICU. I feel vulnerable.

Thank you so much for talking to me and for understanding. I truly hope everything goes well for you.

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This mirrors my experience exactly, Fortunately I seem to have recovered well but I've had better follow up for my knee replacement than for my SAH. I wish you well...,,,and a Happy New Year of course.

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Hello Mikey thank you for replying. I too feel I am doing well, I’ve returned to my job, so that’s positive. I wish you a very happy New Year too.

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Happy New Year.

I too had a SAH in 2005. I had 7 coils put in against the usual 2 or 3. I was in an induced coma for weeks after and then transferred to my local hospital for a couple of weeks. I don’t remember much of it as you can imagine! I left hospital very scared and without any support. There was nothing. I didn’t have anywhere to turn and was left to my own devices. I wasn’t told about Headway only a group called Smile for Wessex which was a fund raising group to raise money for an ambulance.

I was convinced by my then partner that I was ok and that I must just get on with it. Which I did.

I found Headway completely by accident. Looking through some emails at work. I contacted them and was given some excellent support and advice.

Each and everyone of us are different and our recovery is also different. We can only listen to our own bodies and do what it tells us to do. Rest when we need to. Even if it is only a power nap. Look after ourselves and realise that we are not the same person we were before. And accept that.

We need as survivors to get the word out there... first and foremost to our families and friends who will not understand why we’ve changed. And then to others.

We have local groups that help. Find out if there are any local groups in your area. We also now have a volunteer who goes to the local hospital to meet people who have suffered brain injury to help them find local services.

Keep your spirits high and good luck in your journey... there is help out there... unfortunately we have to source it ourselves

Lyn

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Good luck to everyone in 2018 , I feel we support each other well on here . I'm scared of my aneurysm s but I feel better knowing I'm not alone . Thankyou to all of you xx

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This is normal , I had a SAH in March 2015 but get a check up once a year and regular consultations over the phone with the head nurse from the hospital I was in. They may have given you some contact numbers. You can call them if you are worried.

I also did some Video blogs to help others in a similar situation:

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