I would be so grateful of some advice

[GemmaL]

Hi,

Im Gemma and I'd like to tell you my mother's story and ask some advice from anyone out there who can relate.

my mum had her SAH 6 weeks ago (7/3/17)

 

My mum is 50, very fit, non smoker. She found out she had an aneurysm 8 years ago, as it was small she was advised to just have it monitored each year and was told it wasn't at risk from rupture.

 

She had a seizure and went into a comma 3 minutes after the headache and sickness started.

Her SAH was graded as 5 (highest grade) as she was in a comma with GCS 3 on admission and did not regain any consciousness for 4 days.

scan showed 2 aneurysms, the new one (de novo aneurysm) was the one which had ruptured.

 

She was put on life support to see if swelling would go down in her brain and 24 hours post admission coiling of the aneurysm via angiogram was attempted but unsuccessful. Clipping of the two aneurysms were later successful via craniotomy.

Mum was in a comma on full ventilation for 4 days. She came round and was able to move all limbs and respond to simple commands.

 

However on day 8 she suffered serverly from vasospasm causing her to become unconscious (GCS 5) and loose movement in her left side, triple H method was not enough to control the spasms even with her BP being maintained at 220 systolic so she underwent a chemical angioplasty. The spasms continued in a milder form up to day 20 when she was finally weaned off of noradrenaline.

 

She also suffered badly with hydrocephalus (excess CSF/ brain not absorbing CSF) so she had to have her EVD (drain) in place for 20 days after surgery,

She spent 3 weeks in neuro critical care and a further week on a neuro ward.

she was released home with a carer.

amazingly  my mum is up, walking, talking, with only a 2% left side weakness remaining.

 

Her only symptoms are extreme tiredness and substantial loss of short term memory/ lost ability to process/ sequence in the way she use to and moderate confusion.

she has amazed  everyone.

She has no memory of the 2 weeks prior to her SAH or anything about the ICU 

 

My questions are has anyone experienced anything similar? What was your cognitive recovery like?

 

I am meant to be getting married in Cyprus in 4 months (5.5 months post SAH) from me in the UK it's a 4.5 hour flight and it will be very hot this time of year.

Do you think there is a risk of rebleed or any other complication from the flight or heat? 

Thanks in advance

Gemma

[Sharlua]

Welcome Gemma sorry to hear about mum but pleased she is making a good recovery.  Whilst I cannot advise on whether she is safe to fly and take the heat, only a Doctor could provide that advice, I can tell you of my experience.  I had a SAH in Jan 2015, due to a bleed from an aneurysm - fortunately mine was coiled and I did not have any after effects like mum from her clipping.

 

I had a holiday booked for the March with my family with son coming over from America to fly with us to Lisbon, I was very nervous about it as was still very fatigued and at that time suffering real bad heads and suffering leg pains.  Consultant said I was safe to fly and relaxing may help me as was quite depressed.  I did go, it was for me a bit early and I found it quite tiring, I could not keep up the pace with my family, who tried very hard but I think could not understand  my fatigue or inability to cope with even low level activity.  Lisbon was hilly so I don't think that helped and was very busy, as well as beautiful.

 

I think it will depend on how your mum feels and if doctors agree it's safe, you may need to be led by her.  If she does decide to go I would advise building in total relaxation days and taking things at a slower pace.

 

I do wish her well and I know for families who have had to watch someone go through this they also need  time to recover as it is psychologically very stressful and frightening, so I do hope you take care too.  Look forward to hearing how mum gets on and hope you have the lovely wedding you have planned

 

Sharon x

 

 

[GemmaL]

Thanks for your reply Sharon it's really appreciated and interesting to hear how others have recovered. I plan to get my mum on this site also when she is well enough. Right now cognitively speaking this would be too much for her to absorb.

 

My mums fatigue is awful but she has no leg pain and minimal headaches. It's reassuring to know you flew just 2 months after SAH from aneurysm as the wedding will be over 5 months post SAH. One consultant said 3 months, another said the heat isn't ideal.... it's such a scary call to make! It's an all inclusive beach holiday so hopefully wouldn't be too strenuous. My Dad in particular is really concerned about the flying. Will be nice to hopefully hear what others experiences/ advice on flying was okay SAH.

 

Did you have any memory issues? 

thanks

Gemma

 

[Chris G]

Hi Gemma

 

I will send prayers for you and your mum. My experience was much milder so I cant offer much advice. I will say it sounds like she is already doing very well and with time will hopefully continue to improve. My injury was only a NASAH but it did leave me with some short term memory problems. Though I think it is also improving with time. 

 

Welcome. Others on here can give you more specific advice on what to expect. I again send prayers and best wishes

 

Chris

[Colleen]

Hi Gemma,

 

As Sharon said, your mom's dr is the best one to consult about safe travel for your mom.  He ( or they) will be best acquainted with her circumstances and any complications. That said, I have two clips and have flown numerous times since the SAH.. My dr told me the clipped vessels make me aneurysm-free.  Sometimes the changes in pressure give me a slight headache, but no worse than someone who has sinus issues. I think I am probably more sensitive to heat; staying hydrated is essential and I find B vitamins help.

 

Fatigue, memory challenges, and processing difficulties are all quite common with the SAH. Your mom suffered way more complications than I did and sounds to be making great strides. It can be a slow process, but things do get better.. We also find ways to cope.  It's important that family be supportive, which you are being,

 

Best wishes and keep us up with her progress.

Colleen

[paul99]

Hi Gemma

         

Welcome to the site and im pleased you have found us your mum has made a remarkable recovery long may it continue all of the symptoms you describe seem to be normal and may recover in the longer term which I hope will happen sooner rather than later.

 

The question of travel  you need the neurosurgeon insight and advice as it is early in your mums recovery  so next time mum goes in for a review ask all the questions write them down before you see him,  good luck.  

 

[Super Mario]

Hi Gemma, re your mum flying, the general consensus is that 3 months after any surgery it should be safe. You MUST take medical advice first though. Another thing is the problem of insurance, if the flights are already booked and insurance already in place on a doctor's say so the insurance may possibly still cover your mum. The company must be informed though.

I suspect, if insurance isn't in place, it will be difficult to obtain and very expensive if it can be got.

 

This is speaking from experience, I had a holiday booked and insurance in place when I had my SAH, because I had already got the insurance from the time of booking and the doctors said I could travel they still covered me.

 

Sorry to be the bearer of possibly not too good news.

I sincerely hope that all can be resolved and that you have the privilege of your mum at your wedding. 

[subzero]

Hello Gemma and a warm welcome to BTG. So glad that you have found the site so early.

You will find it a great support as you read how others have faced the recovery issues following SAH.

 

Six weeks from your mum Joanne`s SAH. She and all of you have been through so much in such a short time.

Given that her other aneurysm was already being monitored it must have come as an added shock.

 

It is very early days for your mum in her rehabilitation. It is so important that she takes time to let her body and brain start to recover. The obvious feeling is to make every effort to regain normality as quickly as possible. However the reality supported by the many posts you will read here; is that patience, rest and listening to her body and brain is what will give her the best chance.

 

Joanne has done very well so far.

 

As others have said, advice from her medics is essential when deciding to make that trip for your wedding. It goes without saying that she simply will not be able to `keep up` with all the healthy members of your wedding party. Take every step to make her conserve her energies and ensure she rests well and does not get dehydrated. Keep her shaded from that hot sun. Knowing how mum`s think, she will possibly try and hide her exhaustion from you all so think ahead and `insist` she takes frequent breaks during the wedding day proceedings.

 

Thanks for sharing and I do hope that your mum continues to recover well.

 

 

Subs

 

 

 

 

 

[GemmaL]

Thank you all so much for coming back to me! I didn't expect such a response. I feel this site will be very helpful for my mum in the future.

 

We have had conflicting advice from doctors about travel so I guess that we will have to just go with what her actual consultant that operated says in a months time. It's very difficult to know what to do about the wedding as so much money has gone into it and 80 people have booked flights and hotels to be there with us, but I can't get married without my mum there. I think I might plan a small ceremony here prior to the wedding as a back up plan if mum isn't well enough

. 

Was any of you told that there was a risk to fly? 

 

Is there anyone with serious fatigue and short term memory problems/ sequencing problems post SAH that can tell me what the recovery was like...?

Thanks again you have all been so hopefully and I've found the stories I've already read very interesting, informative and reassuring.

Gemma 

x

[Super Mario]

I have flown numerous times since my SAH 13 years ago now, approx. 4 or 5 times a year, and I have never been told that there was a risk with flying and I have asked. Insurance is expensive though, not to declare the SAH will put your mum at risk of not being covered for anything at all.

All you can do is take advice from your mum's doctors.

 

I truly hope that your mum can attend your wedding.

 

As to the short term memory and fatigue issues, each and every one of us survivors have had different recovery times. There is no set timescale, each person is different. In the main recovery is a long slow process and often people do not fully regain their short term memory and still suffer with the fatigue years later. 

[Skippy]

45 minutes ago, GemmaL said:

I think I might plan a small ceremony here prior to the wedding as a back up plan if mum isn't well enough. 

x

 

Although I know it won't be the same as having her beside you, but if she's not well enough to fly and you have a small ceremony here maybe you can plan to Skype her whilst in Cyprus getting married so that she can see what's happening even if she can't be there.

 

I have everything crossed for you that she gets the OK to fly out but as the others have said only the Consultant/Specialist can agree whether it will be safe for her.

 

Good luck.

[Winb143]

Hi Gemma,

 

I had a 4 and also Hydrocephalus, I was told I'd never walk again but up to 220 yards on a good day before back aches.

 

I then got Ventriculitis, UTI, Sepsis and hydrocephalus that a shunt sorted me out and came back to the real world.

 

This site will help Mum as it did me, I started to sing in the middle of others posts as singing kept me happy lol (I was a pain at first) and couldn't keep on track.

 

But they stuck by me and now I come on here and leave laughing, which is a good medicine along with me typing songs out ha ha

 

Ask Mum what she wants , even have a party on 1st Anniversary with Mum as "Special Guest of Honour"  or before you leave ???

 

Whatever happens I wish you and Mum all the Best xxxx

 

Go get married and be happy that will be good medicine for your Mum xxx 

 

We need laughter and happiness to get us back on track xxx so tell Mum not to listen to tales of woe  and keep hers and your chins up xxxx and I'll keep my 3 up lol

God Bless you All xxxx By the way my short term is getting better  slow but sure  !! see forgot to mention that ha ha xx also No Stress for Mum  xxxx

[Daffodil]

Hi Gemma. Welcome to the site and congratulations on your coming wedding but I imagine this has alll been rather a scary and hard time for you all and even though mum is now home I appreciate it is still difficult.

 

i had a grade 4 bleed with hydrocephalus and had EVD placed, similar length of time in as your mum but was a little but younger than her. I subsequently had to go back and have surgery to place a shunt. That's not wishing to scare you but that it is something the doctors will be watching for , checking that her ventricles are working as they should.

 

I am going to be very candid here and say that there is no way I could have physically coped with the rigour of the flight that soon after my bleed, I would have not had the energy or reserve to cope with it as I still felt too unwell. It of course will be your mum and her surgeons call. 

 

Im not  wishing to upset you at all and I'm sure I would want to attend the wedding in her shoes and I pushed myself hard to get on a flight as my kids were young and I was so used to travelling very regularly prior. I knew that the effects of pressure adjustment would be hard for me and it was and still is to a certain extent.. I did my first short flight to Spain 15 months afterwards and that saw me needing a full flat out rest day afterwards and feeling pretty rubbish. I have flown a fair few times since then and the effects are far less as my healing is further on but still it wipes me out. 

 

Cognitively my memory, balance , sequencing and General brain state is massively improved since my bleed but I live with a brain injury and have to allow for that as  my reserves and ability to do things will never equal what they were previously. They are different now, and your mums may also be but only time will reveal that fully but you will all adapt. 

[ClareM]

HI Gemma

Sounds like you Mum has done brilliantly, you should be so proud of her.

 

I had a NASAH in Feb 2015 and had booked a holiday in Spain for May 2105. The nurse specialist at the hospital I was treated arranged for me to have my follow up MRI before the holiday. This ruled out any problems and in fact  showed I had no aneurysms so was clear to fly. I did not have to declare to my travel insurance as I was discharged at that point. In fact I was a better bet to insure as at least I had a proven MRI to show I was clear.

 

HOWEVER! The trip really took it out of me, I slept a lot of the holiday. I was in bed early every night, slept in every morning and had a nap every afternoon. If mum is cleared to travel this is what you need to take account of. She will be exhausted and you need to make sure everyone is aware of this and makes allowances.

 

I hope she continues to make a good recovery, a very brave woman! Keep us posted on what happens re your wedding and if all else fails a small ceremony at home will be lovely - and your mum will love it too.  

 

Clare xx