Super Mario

Posted on behalf of the above member

Hi , I am Jackie. I had a sub-arachnoid haemorrhage caused by  a burst aneurysm at the back of my head, and only really remember the pain!

In/out of conciousness, reassured everyone that the surgery could hold off until the morning. Anyway , this was all in May 2016 and after 4 weeks in hospital, including the insertion of a V-P shunt, I returned home and felt that I had a good recovery.

Obviously unable to drive, and didn't return to work as I am a midwife as still felt quite unnerved by the experience. However I started to help my daughter return to work after the birth of her beautiful boy, and enjoyed the train and bus travel.

So, I have had 6 months of feeling OK and actually managed a shift in  the hospital in November.

A few weeks later the flu-like symptoms that I had, concerned my GP who sent me to a local hospital. They were happy that the shunt was fine, but did have another CT scan and Lumbar Puncture, to prove it!.

Unfortunately I was sent back to the neurosurgery unit, who performed an ICP- Never Again!

Cut long story short if I can, I now feel worse than I ever did. I have become severely depressed and referred to Neurology/Opthalmology , as surgeons dont know whats happening!

Has anyone else experienced a worsening relapse after all these months? It would be useful to know . Everyone is different, so I dont expect to get the answer, but may not feel so desperate if anyone has had similar experiences.

Obviously, in my job, I have not returned to work as I'm not safe to be around. 

I hope that I havent depressed you all with my story, but I am traipsing around looking for answers!

Kind regards Jackie

My "why me" days did almost stop eventually. Even, over 13 years down the line, I very occasionally get them, usually when I am trying to tackle something that is apparent I can't achieve now but could easily prior to SAH. Frustration and anger kicks in too. 

Hi Tim, very rarely does anyone go into the Chat Room. Daily banter usually takes place in the Green Room in the Member's Area under the daily thread.

Member's Area is at the bottom of the Forum List.

In that area you will also find Brain Games which can be fun.

Josephine, everybody's recovery is different.

I was tired for at least 6 months after my SAH, needing to sleep more than being awake. As for low mood, I think most have experienced this in the early days and you are still in the very early days of recovery. Just give it time, plenty of it and if your mood doesn't improve over time a visit to the GP would be in order, there are drugs or even counselling that can help you through this patch.

Concentration and holding conversations being hard in the early weeks of recovery seems to be a trait of a SAH.

Thing should improve slowly over time, don't expect too much of yourself too soon. Slowly is the way forward. 

This week the BBC will be running a series of special pieces focusing on the issue of disability in the workforce. Entitled Disability Works, the network will b...e reporting from across the UK and around the world, exploring the experiences of disabled people in employment.

The stories will focus on the experience of disabled entrepreneurs and employees and examine how different businesses are innovating to help disabled people.

To mark the week, we caught up with Headway supporter Fiona Grant-MacDonald who has managed to return to work following a brain haemorrhage.

Many helpful suggestions on returning to work  after SAH from Headway.

Fiona's story: How I returned to work after brain injury.

https://www.headway.org.uk/news/national-news/fionas-story-how-i-returned-to-work-after-brain-injury/

My neurologist advised that my family had the option to be checked. Daughter decided to go ahead but she had to go to her GP to get a referral to Neurology Out Patients so they could request the MRI.

I suppose of it is down to the GP being willing to do a referral. 

Welcome to BTG.

It is a known fact that aneurysms can be hereditary. In the UK family members are offered the option of having MRI scans to check if any are present. Of course the decision for them to go ahead is entirely up to the person themselves.

If I were you I would explore that option with your neurologist. Prevention is better than anything untoward happening. 

You're welcome. Pleased you got it sorted. Bear in mind that you will have an introductory offer so next year the premium may well be higher.

We change our insurers yearly if we can get an improved quote.

It is possibly not the SAH that has caused the rise in premiums. I would suggest that you use a comparison site and look to move insurers. Try Aviva and Direct Line separately because they are not on the comparison sites. When you have quotes ring your existing company and see if they will match them.

At the same time you could query the high rise in premium.

No, they are not allowed to load the premium because of ill health.

Congratulations on your 2 years Clare.

In those 2 years you have achieved so much. It is a pleasure to know you and to keep reading your posts which are so upbeat and positive. 

Welcome to BTG.

My question is how was your mum diagnosed, did she have a cerebral angiogram? What was she told on discharge? Were the doctors expecting it to resolve itself?

As you may realise none of us are medically trained so cannot give medical advice.

My approach to your mum's condition would be to dial the emergency services and get her taken back to A&E, even if you have to do it repeatedly. 10 days is a long time to be in that condition and I suspect with the vomiting dehydration could be an added concern.

Thank you all for your wonderful posts, they did bring tears to my eyes.

The last thing I was looking for was praise. I was really making the point that there can be a good life after SAH, albeit a different one. SAH is not the end of the world. The future is in your own hands, it is what you make it.

Believe you me, in the early days of recovery I had a very negative attitude. One day, a few months after my SAH, I got up and thought "This is ridiculous, do something" That day was the start of me moving forward and becoming more positive as my confidence soared. I looked for things to do voluntarily locally in the first instance, that work filled my time.

I also plucked up the courage to travel abroad on my own again (I had been doing it anyway pre SAH), this time complete with walking frame. I must say the 1st time was daunting but I was going to a place I knew in Turkey and knew the owners. I still go to them now.

As I have said, I love to visit new places, not commercialised ones in the main, somewhere usually off the beaten tourist track that caters more for locals than tourists. Each July I try to visit a tiny Greek island I haven't been to. Fly onto a large island and get on a ferry for sometimes 3 or 4 hours.

You see there are big positives after the many negatives.

Thank you Michelle.

I am no different to any of the other members on here. We all have our strengths and weaknesses.

It was about 7.30 pm on this night 13 years ago that my head exploded. It was a Wednesday.

In spite of it affecting my sense of balance and memory it did me a favour. Well that is how I look at it anyway.  

School was getting worse in respect of the students although I loved my job. There was no way I could continue to do it because of the balance problems.

I got ill health retirement with an enhanced pension which now gives me a decent life style. I can do what I want when I want.  

I love to travel and now I am able to go away in the cheaper times. I manage to get in 4 or 5 breaks abroad each year visiting places that were just a dream for me because of holiday allowances and cost restraints (school holidays only).

In fact, this year I have already had a couple of weeks in Fuerteventura seeking some sun and warmth and I am off to Madeira at the end of this month. That is just the start of my 2017 travels. More are planned.

There is no point in looking back, it happened and that can't be changed. I think of the SAH in terms of being a positive change to my life. There is more to life than work, work and more work, my whole outlook altered. Live life to the full and enjoy it to the best of your ability.

A SAH may seem like the end of the world initially but take it from me that it isn't. For me it opened new doors to a different life. I am not the same person as I was, in some ways I am better and in others worse.

In conclusion I have had 13 years to date of enjoying myself more than I could have ever dreamed of.

Thank you, every little bit of information can help others.

Trial and error, try drinking more and see if it makes any difference.

It does make sense, you may well find that "things aren't quite right yet" for much longer than you anticipate.

I am 13 years post SAH and there are many things that were a pinch of salt to me prior to SAH, now I can't cope with them at all. I still feel that "things aren't quite right" and have given up any hope of them being right although that does not stop me continually trying.

1 minute ago, Smeg13 said:

From the information I have been provided with so far and after speaking to a lady at Headway, she stated that technically I was still in the early stages of recovery,  I have been signed off now for a total of about 4 weeks so far.  I think it's just getting an understanding of everything and the information on this site has been so helpful.

 

It's great to have people to talk to.

Yes, you are still in the very early stages of recovery. It is not like a broken arm or leg that is expected to heal within a certain timescale. Your brain has taken a severe "hammering"  for want of a better word, causing injury.

Are you drinking lots of water? That helps the brain to heal and also helps to alleviate any headaches you may be experiencing.

There is no correct recovery time, each person is different. You will find recovery for most is long and slow. Advice is to take baby steps, if you don't you will find yourself going backwards. Many of us end up being a "new me"

As for returning to work, it will depend on how you feel and the opinion of your consultant and/or your GP, although many GP's have no experience of SAH. You may find that to do a phased return is much better than jumping straight back to the hours you were working prior to the SAH.

15 minutes ago, Smeg13 said:

The DVLA did state there were two options, the one being to revoke my licence myself and the second is to complete the medical paperwork.  I am concerned about how long this process will take.  

 

I have been surprised in the lack of information from the hospital that I was admitted to and if not for Headway I would have been completely lost.

Unfortunately DVLA do seem to drag their heels, you may as well ask "how long is a piece of string?". If you have read the driving threads on here you will see what I mean.

You are not on your own regarding the lack of information upon discharge, it seems to be a common problem. 

Smeg13, welcome to BTG.

A SAH is a notifiable condition to DVLA so you must report it and often your license is suspended. You also need to inform your insurance company.

There are several threads on here about driving and different experiences of members.

In the search box on the top right of the home page put "driving" and search for the posts.

Hope this helps. 

Welcome to BTG.

So sorry to hear about your brother. The people you really need to talk to are the doctors looking after your brother and follow their advice.

We are not medically qualified so cannot give any medical advice but we are able to give you moral and emotional support.

Welcome to BTG Sally.

It is understandable how you are feeling. You have to put your trust in the doctors. There are members on here who have had unruptured aneurysms treated by coiling or clipping and others who have them monitored.

You have found the right place for unconditional support but we cannot give medical advice. I would suggest that you have discussions with your GP or even better the hospital you have been referred to may have a nurse specialist who you can talk to.

There is also Headway or the Brain and Spine foundation who will help you come to terms with your diagnosis and be able to explain specifics. You can give either of them a ring and speak to someone.

Sadly your plans for a US holiday will have to be put on hold but you will get there eventually. 

Lise, welcome to BTG.

There are quite a few members who have had coiling on unruptured aneurysms. The procedure, as far as I am aware, is relatively safe and recovery a bit faster than if coiling is done after a bleed.

There is a possible time bomb lurking, isn't it much better to get it treated than take the risk of a bleed which could have devastating effects?

On saying all that it is only normal to be apprehensive.

You are very early on in your recovery. The nausea and headaches should diminish over time, just be patient.

Are you drinking lots of fluid? This really does help to alleviate the headaches.