Renfield New Member

[Renfield]

Hello everyone. I am a 55 year old male. 
Non-smoker all my life with a late developed asthma, (49 years old), as the only real medical problem I have ever had.  It has been 6 weeks since my SAH.  I spent 3 weeks in hospital and I have been out now for 3 weeks recovering at home.

The consultant advised me that my bleed came from a vessel that was shaped in a fashion not conducive to being treated with coiling/embolisation.  He therefore fitted a clip which has hopefully sealed off the weakened area of the vessel.  It's a shame that things could not have been treated using a coil and via Angioplasty. 

Like many of you, I had my scalp cut from the middle of my forehead, along the (receding) hairline, and curving down to just in front of my right ear. The scar traces a kind of semicircle and where it travels down onto the side of my face, it becomes quite thick and noticeable. Being male, I guess I'm fortunate that it is partially concealed by my side-burn.  Like most of you I expect, before it happened to me, I knew little or nothing about such conditions. 

My experience was lying in bed on a Sunday morning, raising my arms over my head and stretching and arching my back slightly, I felt an explosion of pain at the base of my skull. 
I stayed largely in bed for the next 4 days hoping that things would get better. 
I was experiencing, headache, neck pain and stiffness, zero appetite, occasional nausea, light sensitivity. 

All the usual things as I have subsequently discovered.Finally, I called an ambulance and was taken to hospital. I had not improved in the 4 days I had been lying up, and so decided finally to get a medical opinion. Like most men, I have no great faith or liking in Doctors or hospitals. Women are far more sensible in such matters.

Even then, the main reason I called for an ambulance was only because a fall I had had 8 days before made me wonder if perhaps the pain was a delayed effect and maybe I had a cracked vertebra or something like it. I realise that I must have been in denial, as I couldn't really bring myself to believe there was anything seriously wrong with me.

When my local hospital advised me they were sending me to a specialist Neurological hospital, this was regarded by me with a large amount of anger and annoyance. When I had arrived and been assessed by the hospital, then told they were actually going to have to cut open my scalp, cut a square out of my skull and operate on my brain, my anger only increased. 

Could this really be happening to me ? Could things really be this serious? Well...most of you know I guess. I can hardly be unique in my thoughts and emotions. I spent the next 3 weeks in hospital, mainly pushing for them to release me back home. I am not a good patient.  I was almost at the stage of discharging myself and making my way home. I had never spent time in hospital before. 

Life in a ward is constant disturbance, lack of privacy and general powerlessness.  A private room is quieter, there is less disturbance, but the experience soon turns into a type of solitary confinement. Its almost a toss-up which is the worse.  They are both bad in different ways.
Fortunately for me, they agreed that I could go home after 3 weeks. Many people may have had to stay in hospital for longer periods I expect.   For me, that would have been positively hellish.

Six weeks later, there is now only one small scab left on my forehead.  The scar-line is clear but where it travels onto the top of my face it develops into a kind of welt. As I say, this is largely concealed by my sideburn. I am more conscious of the scar than I thought I would be.
I have never thought of myself as overly concerned with vanity, but I have not gone out of my house without covering my head with a hat of some sort. Baseball cap or woollen hat.

I don't experience much in the way of pain. The scar where it reaches my face tingles quite often.  I have regular pain behind my right eye and discomfort on the area of my skull that was effected by the surgery.  I rarely have to resort to any kind of pain relief fortunately.  When I do it's simply a couple of paracetamols.

I am not noticing any difficulties mentally. If anything my short term memory seems better that it was before. My speech is not slurred and I have no difficulty in conversation. I am convinced that anyone who knows me, would not notice any difference conversing with me on the telephone now and before my SAH.

I don't want to do anything much. I limit myself to small amounts of housework, domestic items and correspondence or financial chores each day.  I will do perhaps 3 such items in a day broken up by reading and sitting down and resting. Concentrating can be an effort and I am only wishing to watch TV programs of 30 minutes or an hours duration.  The thought of watching a film and concentrating on it for  90 minutes or 120 feels too much trouble.

 

Reading, strangely, is totally different. A good book will engage me totally for prolonged periods without any difficulty or mental fatigue.  Regular sleep patterns are totally disrupted.  I basically just sleep when I am able, normally only succeeding at about 7 in the morning to 11 or so.  I lie in bed and rest a fair amount but normally resort to listening to the radio or other audio files as sleep doesn't come.

I don't want to see friends or family particularly at the moment.  I don't think I am turning into a recluse but I feel like I don't want to go to the trouble of having people around and conversing with them. When I got home from hospital, the 3 weeks I had spent in there had weakened my leg muscles considerably.  I felt unsteady and weak. I had lost about 1 & 1/2 stone in weight.  

 

Now I am able to walk about the house fairly normally and will start to go for outside walks, weather permitting, any day now.  I will start of with short distances and work my self up to a 3 mile local route on the flat. I worry about future possible occurrences. I worry about how my lifestyle may need to change and also I have a heightened sense of my own mortality.

I expect this is normal. Not just for SAH sufferers but for anyone who experiences a major medical problem. Well that's enough of an introduction for now. Hope to talk to some of you later and possibly to exchange experiences and maybe give and receive some insights.

[Skippy]

Hi there 

 

Welcome to BTG.  All you've said so far appears very  much par for the course for many here.  You seem to be sensible in that you're not pushing yourself too much and are taking things steady.  It's good that you're not experiencing too much pain too.  Make sure that you're drinking plenty of water too as it helps the brain to function.

 

I felt the same regarding visitors and conversing with others in the early days however, I'm the opposite on watching a film as opposed to reading a book.  I couldn't remember what I had read the day before and, being a bit of a book worm, I was devastated - I resorted to magazines and crosswords to keep my brain active.  Now, ten years later, I pretty much do all the things I did before, though I do tire far more easily than I did before.

 

Where abouts are you - homewise?  Family? Work?  Not being nosy honest  , just helps to build up a better picture of a person and their recovery.

 

Hope you stay on the site because it's been a life line for many, including me, and has loads of information and a wealth of first hand experience.

 

Hope to see you more and get to know you better.

[Winb143]

Hi Renfield,

 

Sounds like you got away easy if any SAH can be easy.

 

I agree with Sami on the drinking of water.

 

My memory is really bad and I had Ventriculitis and Sepsis while in hospital.  So took me an age to get there.

 

They said I wouldn't walk but 60/100 yards and then lower back pains set in.

 

Good you have come out of it quite well it seems , so wish you well and keep in touch

Regards

Winb143  x

 

[Renfield]

It may well be that I have had it fairly easy so far. It's early days as yet though I suppose.

In 4 weeks I have another scan.  Perhaps everything will look fine. Perhaps they will find problems and have to operate on me again.  Who knows.

 

I live on an Island and so I have to travel to the UK by air to attend the Neurological hospital.

The thought of travelling seems a lot of trouble and makes me tired just to think of it.

 

What else...it's a little difficult for me to eat as when they cut my scalp they cut through some of the muscles that drive my jaw, apparently. I can't open my mouth very far without some pain.  I have read that this is fairly typical and will improve with healing.

 

I love to drive and to motorcycle.   I am worried that I will not be able to drive for a long time.  I hope this will not be the case.  Perhaps my case is relatively straight forward and I will be allowed to drive soon.

Not being able to drive makes life very difficult.

 

I live alone Skippy and I am retired. However I have family and belong to clubs so I am in the fortunate position of not being isolated.   Thanks for both of your early responses.

[Winb143]

Hi again Renfield,

 

The mouth thing sounds painful,  Oh and good luck on the Scan I was more scared of getting results back, as you say in case !! But was signed off after shunt for Hydrocephelus was put in.  Saw Surgeon once more and all cleared they said. 

Fingers crossed for you.

 

Keep Well

 

Win 

 

[subzero]

Hello Renfield...  and welcome to BTG. 

 

Here you will have access to so much information built up from real cases which will help you to understand how others have coped with recovering post SAH.  You will find that everyone`s situation is unique in as far as how the trauma of the bleed has damaged the brain.

 

The after effects will become evident in the days, weeks and months ahead and is often dependant on lifestyle. For example, from what you say, because you are retired, you will not be faced with having to return to work. Being retired, you perhaps do not have financial pressures which others may be concerned about. Living alone, you do not have the responsibilities of dependants. These are all factors which In your recovery will ease the stress of your situation... as Winnie often says...stress and SAH are not a good combination.

 

As you read into the threads on this site you will soon learn how fatigue is a major issue for most. Again, you are in a position to cope well because being retired... your day is what you make it.

 

You also mention that outwardly you look perfectly ok to those you meet. (apart from your scar). This also is a common comment on BTG. People can expect you to carry on as normal when in reality, you may either be very fatigued, or your damaged brain may simply not be functioning as once it did. Over time you will find how your brain trauma is affecting you.

 

Glad you have friends and family nearby.

 

I wish you well in the weeks ahead and know you have joined a site that will be invaluable as you face the future

 

Take care

 

 

Subs

[Chris G]

Welcome Reinfield,

 

Sounds like you are still adjusting to the new you, which is normal.  I can only somewhat speak to your experience, as I had a NASAH which required no surgery, just an EVD.  I do remember vividly after my first scan when they came in and told me I would have to have brain surgery. 

 

The panic inside while I tried to remain calm outside for my wife was scary.  Fortunately, it only lasted about 10 minutes before they came back in and said maybe not as it did not appear to be an artery that ruptured, but maybe was just a vein.  I felt relieved and then remember nothing of the next 2 days.

 

Funny how people are different.  I was a model patient.  I felt so thankful for the people who fed me, watched me, cleaned me, emptied my urinal, gave me medicine.  While I was "trapped" in the hospital, I was also freed from the pressure of being able to do anything else.  Just like I always get relaxed and sleepy in a dentist chair, because I have no choice of doing anything else, my days in the hospital were relaxing in a way.  My retired Mother-in-law came and sat with me every day for hours.  She was so nice to me.

 

As I only had an EVD, my scar is hardly noticeable.  However, I hope that in time yours become a scar of pride as you defeated this condition, rather than something to hide under a hat.  You have joined a group of people that have had their lives shaken quickly, without warning, and who are not fully understood by the general public.  But it is a great group of survivors!  Some have a much harder road than others from what I have read, but we all support each other and look forward to supporting you as you heal.

 

Prayers,

 

Chris

[Renfield]

Thanks to all.

 

Subzero is quite correct in what he says. (BTW   Happy St Andrews day).

 

I feel a little like a fraud at present as I think I am more fortunate than many that may be members of this group. I do have the luxury of recovering at my own pace without the pressures of work and dependants to weigh down on me. We shall see how things progress however.

 

The show isn't over till the Fat Lady sings eh ?

[Winb143]

I'm about to sing Renfield block/cover ears

 

Keep Well xxx

Win

[Skippy]

Haha Win

 

As you can see Renfield - there's a lot of humour on this site - an important faculty to keep very much hold of.

 

I can identify with your feeling a fraud - I did too when I first joined BTG and read some of the stories on here.  But no one who has had an SAH or NASAH is a fraud - some are just more fortunate than others and, it seems, you and I are a couple of those fortunate one.  

 

I was 35 when had my SAH and I was discharged from hospital 3 days after my coiling op, I was back at work 3 weeks later (I worked with my husband at the time running our Graphic Design Company) I was fortunate enough to have a bed in  my office that I used when I needed to and it took me a year to stop needing a nap during the day and for my sleeping habits to return to anywhere near normal. But the fatigue, when it hit, was a killer - sneaks up and knocks you off your feet.  

 

My hubby loves the motorbikes too - unfortunately due to a near fatal crash last year I've refused to let him on one again. However, we're heavily into the Motogp and always go to Silverstone for the weekend - we all have a love of motorbikes as a family, so if the island you live on is the Isle of Man I will be very jealous 

 

Please do stay with us through your recovery - if nothing else, you'll get support and encouragement from all on here x

 

 

[Daffodil]

No competitive SAHing on here Reinfield. pain is pain and we each walk our own path.  Experiences and feelings of bleed and adjustment to life post can be shared freely without comparison, it's just about reassurance, empathy and knowing you don't walk alone.

 

I had a couple of surgeries requiring the 'surgeon haircut'. The first time a burr hole for EVD with a great fringe combover to hide it but post shunt placement I was left with a complete shaved back of right side of my head and what I described as a small shark bite on the back of my head.  And yes it really made me sad at the time mainly because I couldn't hide it and i could see it scared and reminded everyone else of what I was going through and in turn that made me sad I was worrying them so much.

 

Time passed and I wear my hat now not to hide the scars as I did then but because it helps my head with weather changes, too much wind or cold is no good for me. progress. 

 

Thing is those very visible wounds were actually a great reminder at the time to be aware of the trauma which caused them which itself was unseen and set a pace that about matches how hair grows back. Slow it may be but it grows given time as you will find as more hair returns you match it with a new pace that's about right for that moment , and the next, and so on.

 

Take care . Glad you are going steady 

[Renfield]

Well Skippy. Motorcycle touring is such a large part of my life it's difficult to imagine giving it up.

I also love to drive.  Not being able to until given the all clear by my DVLA equivalent is a real nuisance and also a cause for concern. It's kind of a case of not realising how much you'd miss it until it is taken away.

 

In the grand scheme of things you might say that its fairly trivial, but who can live only looking at the Grand Scheme?  Real people mostly look at the little things which are close up.

[Winb143]

If you can manage a happy thought or a smile once a day Renfield then you have this beat, but we do need to bring laughter back in our life.

 

I know we aren't all ready to start thinking happy thoughts but it has helped me no end.  Never give up on your dreams either.

 

Now be Well and a happy soul if possible xx

 

Wishing you well

 

Win xxxx

[weedrea]

On 11/29/2016 at 19:43, Renfield said:

I live on an Island and so I have to travel to the UK by air to attend the Neurological hospital.

The thought of travelling seems a lot of trouble and makes me tired just to think of it.

 

I know the feeling exactly. I live in the Western Isles and was treated in Glasgow. It's such a pain having to travel! I did try to get follow-up scans at Inverness but that took forever to organise with it being a different health board. Plus, it added about another 4 weeks for me to get results, which didn't help my stress levels much! Hopefully you've got a supportive GP which definitely helps. 

 

All the best in your recovery....

 

Andrea

[Macca]

Hi Renfield,

 

I want you to go back and read your introduction post again.  Why? Well, because everything you describe is progress after being more ill than you at first realised.

 

I suspect that because you are on your own you are just not recognising it as such.  That is not a criticism, just an observation.  Whilst I respect and understand your wish not to mix with people too much at the moment, you have no one to bounce your own thoughts and observations off.  They would probably tell you how much you have come on since your operation.  Let me explain.

 

1) You identified a problem and went to get it sorted - well done!  It obviously needed seeing to.

2) You came home

3) your scabs from your operation have almost gone.

4) Your sideburn is growing to cover the evidence of the operation

5) You don't have to resort to pain relief - or rarely, are the times between getting longer? I bet they are.

6) All your faculties are in tact - a big bonus after a SAH, believe me!

7) You  are doing several chores/activities a day

 

You are about to start doing short walks, that's progress.

 

All of these things are small steps on the recovery road, things that many of us have been through ourselves.

 

When you do start driving again how about doing short drives until you can cope with longer?

 

When you have to go to the mainland, instead of thinking of it as a travel chore, why don't you think of it as a short break, where you have to take in a visit to the hospital on your journey to being completely well again.  I am not trying to be patronising, just trying to get you to think about it in a different way that helps you.

 

So, don't beat yourself up, it sounds like you are doing just great, but there are no instant fixes.  Time is the great healer here and the thoughts you are having about doing more things shows that you are not apathetic about anything.  Just the opposite in fact.

 

Look at what you are not saying (ie read between the lines), as well as what you are saying.

 

Best wishes,

 

Let us know how you get on - and welcome to BTG by the way!

 

Macca