Advice please - negative ct

[Miss W]

Hi all

 

I am new to the forum and have joined as I wanted some advice as I am a little confused to my diagnosis. 3 weeks ago I was admitted to hospital with an SAH, the CT scan was negative therefore treatment ceased after 3 days once the headache started to settle. They decided not to do an angiogram due to me being pregnant and then discharged me, with the advice that the headaches will eventually settle and I will feel really tired.

 

The diagnosis was made with a positive lumbar puncture and presenting symptoms. Has anybody else experienced this? I just feel a bit lost as to where I stand now with driving, working (which involves driving), general activity. I am just starting to feel a bit better and have managed to reduce the amount of painkillers I am taking, but I am still wiped out and have to sleep ALOT!

 

I really should have asked all of these questions before I was discharged, but to be honest I felt like rubbish and did not have the energy to even think about work. My GP has signed me off work for a short period, but I am not sure how long I will need off and work have now called me in for a meeting with HR, I am not even sure if I can drive yet to get to this meeting.

 

Any advice would be much appreciated or any one who has had a similar experience. 

 

Fiona. 

 

[ClareM]

Hi Fiona

 

Where abouts in the country are you? My personal advice would be to get in touch with the hospital that treated you and ask their advice. I presume that you had a NASAH as you did not have any treatment for an aneurysm, this is what I had but with the added complication of hydrocephallus.

 

I was told that I needed to have a minimum of 3 months off work then a gradual phased return but everyone is different. Re the driving it is normally the consultant who treated you who will say if you can drive or not. If there was no invasive treatment I think the DVLA rely on the hospital and GP's advice. Don't quote me on this though as other people here may tell you different. Also as your work involves driving you need to take advice.

 

My HR department held a meeting at my house as I was unable to drive. If you think you are unable to get there tell them so and ask if other arrangements can be made. There is a lot of legislation about sickness and what firms have to do which most people are unaware of. Make sure they do not make life difficult for you especially as you are pregnant.

 

I think you really need to speak to someone where you were treated though, if it was a Neuro unit they may have a Nurse Specialist who will be able to help you. Alternatively you could try Headway. I understand they have trained nurses you can speak to on the phone so maybe that would be an idea. You can find them by googling 'Headway'.

 

Good luck, keep us posted with your progress. Make sure you rest plenty and drink A  LOT of water, it really does help.

 

Clare xx

[Macca]

Hi Fiona,

 

Welcome to BTG!

 

Great advice from Clare.  The only people who can give you real medical advice are the people who treated you.  However, I would say please write down the questions you want answering so that you do not forget any.  Write the answers down if you can at the time or as soon as possible afterwards.

 

One of the questions you might want to ask is how long you should take off work and then get your GP to support you.  Once you have this, you can then enter meaningful discussions with your HR people.  You can also discuss with your GP about driving and then keep DVLA informed and they will assist you and advise you what you need to do.

 

I did this and they were very helpful.  I ended up not driving for six months but they didn't actually revoke or suspend my licence.  Don't forget that getting into a car is your responsibility, not DVLA's.  So the risk is yours, not theirs.  Also think about contacting your insurance company as if you do not declare what has happened to you the insurance might be invalidated, landing you in hot water if you were to be involved in an accident.

 

Good luck,

 

Macca

[Wall1409]

Hi

 

I too am 3 weeks post and have contacted the hospital today to ask the very same question as mine was a perimenci something sah (sorry I can't spell it) I had repeat brain MRI last night to check for any abnormalities now hopefully this blood has gone but getting really bad headaches tonight at the back of my head I think because I overdid it today. My husband has epilepsy and unfortunately had a seizure so I had to look after him. 

 

I think it's just time and when you feel right but be careful and try not to overdo things. I rely heavily on the information from this site and the really lovely people on here.

 

Take care

Wendy x

[subzero]

Hello Fiona and welcome to BTG.

 

Like so many you are beginning a journey and a learning curve about NASAH/SAH. Like so many, you are discharged and have many questions you want answered.

 

Every case has it`s own traits, and recovery and back to work have different challenges for everyone. Your pregnancy is an additional factor in your situation.

 

I wish you well as you tackle life post NASAH.

 

You have already had some helpful comments. As far as work is concerned, please tackle this carefully. To many people on the `outside` including your employers, you will appear to look fine. The truth obviously is that they cannot see how you really feel...and only time will tell, as over the coming days, weeks and months you find out how debilitating your life has become.

 

Please do not rush back to work. Take advice from your consultant about your return. Does your employer have an OH Dept. ? When you do discuss return to work, ensure that your first few months are phased in your favour. Perhaps for example Mon/Wed/Fri mornings for the first few weeks giving you a chance to assess what return to work does to your body. You already know to expect fatigue. It is far better for you to start slow and not find you have taken on too much, than have to either reduce hours or stop working again indefinitely because you are exhausted.

 

Keep in mind that your employers may know very little if anything about NASAH and its effects.

 

Also, when did you expect to be off on maternity leave? This obviously adds to your thinking, and when baby arrives your home life workload changes to another level.

 

It is so important that your employers give you a chance to recover, please put your recovery first.

 

Take care and keep in touch.

 

 

Subs

[Miss W]

Hello all, 

 

Thank You for all your kind and helpful replies. This is all really useful information. 

 

As advised above I have contacted a nurse specialist at the hospital where I was treated. So hopefully they will get back to me soon. The GP was fine, but just not massively clued up on the situation, but very nice. I just wanted some firmer advice, which I hope will come from the deartment, as I get the impression that my work think 6 weeks is too long to be off work. I have never been off before (apart from the odd day), but I know that I couldn't go in right now, as I feel pretty rubbish 90% of the time. 

 

I do have to see occuptional health, which is fine, it's just that my boss has asked for a meeting with me, her, OH and HR before I even see OH on my own, which I think is a bit odd, anyhow it's for next week and I can't physically get there, so will just have to refuse to go to it and let them know I will go when I feel a bit better. 

 

Its hard juggling everything at the moment, as I have a 14 month old and also as above I am

pregnant. So rest is not always possible. 

 

I do feel very lucky though that there are no other side effects or long lasting problems, just the relentless fatigue and headaches. 

 

Many Thanks for your replies and hope hat you are all as well as you can be. 

 

Fi 

[Macca]

Fiona,

 

I took 6 months off work and even then it was too soon to go back and I ended up going off again after a phased return to work.  Going full time again became too much for me and I ended up having to go off.  Your body will tell you, whether you want it to or not, whether you can cope, but if you go back a phased return would be advisable for as long as you can make it.

 

Don't try to do too much too soon, because your body will tell you.

 

Tell your HR about SAH and it's effects.  Very often OH and HR departments know very little because it is a relatively rare condition.  So you tell them.  If your local hospital has any leaflets about SAH, pick them up and show them.

 

Good luck,

 

Macca

[ClareM]

Hi Fiona

 

Hope you are feeling a bit better and have had a chance to have a chat with a nurse specialist.

 

Regarding work I think they are being very insensitive saying 6 weeks is too long off, have they had any other employees who have suffered a SAH?

 

Once you have spoken to the nurse specialist you are probably better to speak to Occ Health and getting them to do a report (whcih you see first)  before you see your boss.

 

Any consultation with Occ Health should be private and not a general meeting with all and sundry.

 

Macca is correct, as this is such a rare condition many employees know very little about it and the recovery needs. Gather as much info as you can to show them and please don't be forced back to work too early. 

Keep us posted, I am rooting for you.

Clare xx

[Irene]

Hi Fiona and also Wendy,

 

Please listen to your body, each of us is different and each of us have different issues, but one thing we all have is fatigue and that can affect your headaches too.  Concentration can increase fatigue and also we can feel frustrated with ourselves, which again can increase any of the after affects. Read up as much as you can on this forum, it has helped me immensely in realising that what I have felt or sometimes still go through is normal and that is 14 months on.  

 

I said to my consultant on one visit, life has changed and all that seemed was that I went into the hospital with the worst headache ever and came out with paracetamol.  (I too had a perimesencephalic SAH).  He said that is what it seems like, but they can't say how long a brain takes to get over any trauma to it. He said it is the type of haemorrhage which has a good outcome, in relation to a SAH with aneurysm, but to be aware of fatigue and a person could only get back to 95% and one thing that people need to watch out for is lethargy.

 

 To be aware and not to let yourself get down.  I hold those words in my head as lethargy can bring you down.  I found on Southampton Hospital website some good information regarding SAH, it is a printout they must give to patients, I think it is on their neuro section.  My hospital didn't give out any information.  It is securing this information from all over which helps.  Like yourselves, the GP asked me questions.  

 

DVLA are really good in answering your questions, you need to tell them, fill in some forms and they do the rest.  They go by what the doctor/consultant say.  I kept phoning them up and nothing was a bother.

 

Fiona and Wendy, please try to have some help to get rest.  People don't understand the injury to the brain, they can't see it but it is there and it needs its time to heal.  You know how you feel, it is real, listen to your body and don't rush anything.

 

Take care, people on here have been great for support, keep in touch.

Irene 

 

 

[Graham Oxburgh]

Hi Fiona,

 

Sorry to hear all you are going through.  Let me share my experience which has some similarities.

 

I suffered my NASAH on 31/10/15.  The CT scan was negative, the lumbar puncture was positive and I then was given an angiogram which confirmed a ANSAH.  However, no treatment was required and I was discharged after a total of 5 days in hospital.  My GP initially signed me off work for two weeks, despite the fact that the hospital had said I was likely to be off for three months. 

 

The GP subsequently changed my sign off to  three months.  I have been progressing since then and can now work for about twenty hours per week although this can be a struggle.  From about four months after the NASAH I started to very gradually build up work.  I am not a medical professional but I would not be surprised if you can only build up work again very gradually.

 

One year later I still have very tired days, sometimes a sore head and can sleep poorly. 

So regarding your recovery I would suggest you go back to your GP and discuss what is normal, although it seems to be that a long slow recovery is the norm.

 

Regarding driving the DVLA website tells you when you need to notify them of a medical incident and SAH is such a notifiable event.  When I notified the DVLA I was told I could not drive until they had received a report from the hospital consultant.  This took about three months for the DVLA to process.

 

Towards the end of this three month period the DVLA informed me that my GP could decide if I could drive!  My GP, after reviewing the documentation that the consultant had sent to the DVLA, decided I could drive. So in summary, push your GP for some proper information on your recovery and on driving although I would not be surprised if there is no quick way back to your previous “normal” way of life. 

 

Hope this is helpful, and don’t despair, there is life after suffering a NASAH!

 

Best wishes

 

Graham

[Susan]

Hi Fiona,

 

6 weeks is not too long to be off work after an SAH. 6 weeks is probably recommended as an absolute minimum.

 

You have a lot on your plate - just being pregnant can cause fatigue without the added effects of an SAH. Please take care of yourself and try not to be pressurised into returning to work too soon - only you will know when the time is right.

 

Try to get a flexible phased return where you add on hours as you feel able, giving it a few weeks at a time to consolidate those hours. If everything goes well you may find you can increase your hours without a problem, but if it doesn't you won't have the pressure of having to stick to a rigid plan.

 

Also when you are thinking you are ready to go back have a little trial run at home, simulating the hours you will be working by doing similar tasks to see how it feels. It may give you the confidence you need to go back or make you realise you still aren't ready.

 

Wishing you all the best. X

[Miss W]

Hi all, 

 

Not posted for for a while, busy with a toddler, life and work! 

 

Hope you are all well.

 

I am doing fine, had 6 weeks of work, returned to jormal hours and have been doing fine. The tiredness was tough initially and still is, but I think the tiredness now is due to be being 8 months pregnant and having a toddler which means I don't always get a full nights sleep and are usually up by 5.30am. 

 

8 weeks left to go, often feel anxious about the labour, but have been reassured that I will be absolutely fine, so opted for a normal delivery. 

 

Due a neuro follow up after having the baby. 

 

Fi

[subzero]

Hello Fiona,  thanks for looking back in to BTG and giving us an update.

 

Glad to hear you are happy with your return to work, although you do rather have your hands full between work, coping with your pregnancy and handling your home life and your little one.

 

Looking in at your situation we take a deep breath because we know that four months post NASAH you so much need to have plenty rest to give yourself a good chance of recovery.

 

Well done for sounding so positive.

 

I do hope you keep well during the next eight weeks. Do you have family and friends to support you as your date draws nearer and also after your baby is born ?

 

When do you begin your maternity leave ?

 

Take care and please keep in touch when you can

 

 

 

Subs

[Miss W]

Thank you Subs,  yep it's pretty tough going at times, but I have to just keep going. Looking forward to finishing work in two weeks, then I can rest on the days that my toddler is in nursery (Or prep for the baby, or finish my MSc thesis which is due in this May). I do have a lot on, I try and sleep on non working days when my toddler does, otherwise I can't get to the end of the day without being unwell, on a work day, I sleep during my lunch break in my car! 

 

Looking forward to a nice holiday in the summer, to get some earned rest!

 

Forgot to mention about driving, I got a letter from the GP saying I could drive, sent that to DVLA and had no problem. So was Also driving after 6 weeks, albeit short journeys. 

 

Fi