Jaw ache

[Nicjones123]

Hi,

I have just joined this as my 65 year old Mum had a SAH 5 weeks all while on holiday in France. She had a temporary shunt inserted as soon as she got to hospital for hydrocephalus and was then taken by helicopter to another hospital for coiling of her aneurysm. She spent 6 days in an induced coma and started waking up on her birthday, as you can imagine this was the best birthday present ever! We as her family had the most agonising 3 weeks waiting to see if she would have any deficit from the initial bleed or vasospasm. It appears Mum was one of the lucky ones as her brain appears largely unscathed and her personality doesn't seem to have changed, although I know we ha e a long journey ahead. One of the first things she asked me was if I had seen her in a coma, when I said yes she said 'oh sweetheart I am so sorry', which sums mum up - always thinking of other people. My Dad is a GP and Mum used to be a nurse so I think this made it harder as they were acutely aware of what was happening - my brother, sister and I didn't really understand the gravity of it although a few google searches during the darkest hours were probably not helpful. It was just hard as we had little info to go on as none of the doctors spoke much English and we only know a-level French which didnt include neuro surgery vocab!

Mum was discharged home after 3.5 weeks and is doing ok. She is still v much bed bound and has daily headaches and fatigue but can walk the short distance to and from that bathroom. I guess this fatigue is to be expected after such a knock to the brain and being in bed for 5 weeks.

We have had to call an ambulance twice since she's been home. Once because she had a v severe headache (she couldn't compare it to the original bleed as doesn't remember any of it) but was taken to hospital and had a scan which was fine. Then today she had some chest pain and jaw pain - we called the GP who advised to call 999 as a precaution. They did and ECG which was normal. I just wondered if anyone else had experienced this jaw pain (i have read this can be common after a craniotomy but she had the coiling op so not sure if this would apply?)

Also, she has double vision and headaches at the moment and we have been putting an eye patch on each eye got 2 hours before swapping it over which seems to help.

I am basically looking for any reassurance as we have been so frightened by the events of the last month. I know we are so very lucky to still have Mum and just hope she goes on to make as full a recovery as possible.

Thank you for reading this!

[Daffodil]

Welcome Nic and well done Mum for getting this far, you're doing well and everyone will tell you it's early days.Drink lots of water and rest rest rest.

Having the SAH in a different country it must have been challenging to deal with all the tough conversations and google is definately not your friend...BTG can be though!

I have a similar story to your mum and I'm a year in. It gets better buts it's a slow old journey.

On the jaw pain, if she had an extra ventricular drain put in to relieve the hydro then she will have had to be sedated and put under for surgery , therefore tubed for breathing probably. I had a lot of jaw discomfort after that and it can cause some pretty nasty pain, breathtaking really, like it's clicked out of place. I could just be trying to eat or talk and it would spasm. So gentle and careful chewing, some gentle local massage and hopefully it will improve. Your dad will probably be able to advise if it doesn't.

The placing of an EVD to release CSF was described in a recent documentary as entering the holy grail of brain surgery. We think coiling and clipping are amazing but draining CSF is major surgery so youre mum rocks! But shes going to have some odd sensations as it heal and that can be very frightening and worrying.

On the double vision and eye pain. Not unusual but if anything changes in how the head sensations feels for your mum then please get it checked. I had a blue light taxi more times than i care to remember but alwys better to check than ignore. I personally required intervention later so getting checked was a good thing for me otherwise I'd of been in a whole lot of trouble.

Avoid over stimulation in the early days, things like tv etc and gently bring in sensations, sunglasses help take the edge off all the brightness. Try relaxing sounds and definately have as much sleep as possible. Also don't get hungry, I found that made things worse. If dont fancy eating then get build up shakes, keep the energy high.

People will follow on and offer far more advice. My very best wishes to you all. Sending a Group family hug!

[Nicjones123]

Thank you so much for replying! I am a bit nervous to ask about the intervention you needed later on as I hoped we had been through the worst of it but it sounds like you got through that too which is brilliant!

I didn't think about the pain being from the drainage - yes she was sedated for that and on a ventilator for 7 days so maybe that's why. That's a much more palatable explanation than a heart attack

I'm sorry you have had to go through this v challenging year and I really hope you are coming out of the other side, and thank you again for taking the time to reply.

[Daffodil]

Aw Nic, sorry, I didn't mean to worry you further.

I needed to have a permanent shunt placed .It was always on the cards to be honest for me as my hydrocephalus at the time of the SAH was so bad. I got through it and it was nothing like the emergency that is SAH.

[paul99]

hi nic

congratulations to mum for coming out the other side so to speak mum will have many little problems in her recovery many can be explained as daffodil has said its going to take up to three months before the blood is absorbed back into the body the jaw ache could be very well down to the shunt and intubation possible dislocation of the manadable jaw bone during the intubation but it will pass maybe mum could eat a soft diet untill the pain subsides the vaso spasm would have occured within three weeks so mums passed that hurdel so look forwards to the future it will take time for mum to gain full benifits of her recovery take one day at a time but be prepared for the odd step backwards it happens the double vision could be due to where the bleed was but hopefully intime it will recede i wish mum well she has done the hard bit coming through

goggleing is the worse nightmare anyone can do as you have said but you have found us we are here to support everyone if you want a rant or rave we are here good luck to mum and remember take one day at a time and make sure you have time for yourself best wishs to you all

[Nicjones123]

Thank you Paul and Daffodil

Daffodil - dont worry, I did wonder if it was a permanent shunt and will keep my eyes and ears peeled for what I imagine were more symptoms of hydrocephalus such as worsening headaches, confusion, worse vision etc? I would much rather be armed with the knowledge and act on it than not, so thank you!

Paul99 - thank you for your kind words. I know mum is a fighter and she has a

very strong family who are right by her side all the way. It's useful to know the blood may take 3

months to be re-absorbed. I don't think the jaw pain is unbearable and she is eating without problems. She described it as a level 3 or 4 on the pain score of 1 to 10 when the paramedics asked her earlier. This seems bearable, especially compared to the headache we called the ambulance for last week which she described as a level 8 (and this turned out to be nothing on the scan so that's positive too).

[SarahLou]

Hi Nic,

A big welcome to BTG.

Wow, what a special birthday gift for your family for your mum to wake from coma on her birthday.

So, she was in France when all this kicked off eh, all my family were on their hols in France when my SAH rocked my world.

As others have said her jaw discomfort may be due to all the tubes etc.

I had clipping so my jaw was agony for quite some time, I lived off yogurts and squashed strawberries for quite a while.

The fatigue is very hard in the early days. A shower was totally exhausting, it would zonk me out for hours. Just had to learn to take things slow and steady, and I learnt the hard way when I'd done too much!

As for the double vision problems, I had this quite bad, very scary. My bleed was two inches behind my left eye and my vision was made much worse following SAH. I was under the eye hospital but there is nothing more they can do, tried various things but it didn't work. I still have a long distance vision problems.

I wore sun glasses all the time for months, still wear them a lot as still mega sensitive to light.

I had hydrocephalus, but lumber puncture sorted this so thankfully no shunt.

As for the headaches, that's very common. There's a lot going on in your mums head, things to adjust back and repair. Some people's head aches ease, some don't.

I'm one of those who still has headaches daily.

Please tell your mum to take baby steps, have patience and understanding with herself. Drink plenty of water and remember we are a great bunch here for you, her and all the family.

Take care of yourself, the strength of her family and friends will become her strength.

I wish your mum well with her recovery,

Take care,

SarahLou Xx

Edited March 18, 2013 by SarahLou
Got my words muddled!! Really need some sleep now!!

[Louise]

hi there, warm welcome glad you found us.

Sorry she's bed boud maybe getting up and moving would help, obviously not meaning doing anything other than out of bed and sitting in another room sometimes moving helps.... drink plenty but being GP & nurse they'll know all that I'd imagine.

great source of info on here tho...

take care & Hi to Mum...

[Wem]

Hi Nic,

Welcome to BTG and good to hear your mother is home and gradually improving.

I had an emergency EVD inserted, 'cos I went into a coma due to hydrocephalus before they could coil my ruptured anni. Seems the neurosurgeon caused another small bleed during that procedure, and they kept me in an induced coma following the op to prepare me for the coiling the following day.

All went well, and I have been recovering for the last 12 months. I suffer headaches, though they are reducing in severity and I also experienced burning sensations on my scalp for the first 6 months. The neuros advised this was probably because they had damaged the nerves in my skull when they drilled the bore hole for my EVD, so possibly something to be aware of if your mother had a similar procedure.

Hoping all goes well for your mother in her recovery, I have found patience is probably one of the key attributes needed on this long road.

Take care,

Wem

[Winb143]

Hello Nic,

You are going to be worried, it is natural as you love Mum.

I had coiling also with the EVD's.

I had shunt fitted a year later and I am here to tell the tale.

Your Mum will get better with the support of her family but get rest also.

When I came around after shunt op my daughter said "welcome home Mum good to have you back"

We both sobbed but it was a good sob

Now we argue lol, so I know I am better.

Be Well All of you

Love

WinB143 xx

[amexdm]

Hello,

Glad to hear she is doing better. As much up and around as possible may help.

I still have jaw ache 18 months later, usually when stressed or tired. Always think I'm having a fit but it goes away.

Best to you and Mum,

David

[Nicjones123]

Thanks everyone - I am v glad I found this site!

Mum has had no jaw pain for over 24 hours now and headaches def seem to be less when she wears an eye patch. She has had a couple of good nights sleep too which also makes her less sleepy in the day. In summary I guess today has been a good day

I have an 11 month old baby boy who has kept us all going over the last few weeks and has been on top form today and kept mum and dad entertained. We are going to celebrate his first birthday next week, not quite with the big family party we all had planned, but probably with a little tea party in Mum and Dad's bedroom. I can't wait

Mum had a visit from her GP who checked blood pressure which has come down and also sent a referral letter to a neuro surgeon in Oxford so she is now in the NHS system which is good as we did feel somewhat alone when she was discharged from the French healthcare system and sent straight home.

Thanks again for all your responses, it's great to hear so many positive stories!

[goldfish.girl]

Hi Nic,

It's good to hear your mum is now in NHS care for follow up. I'm sure your wee boy will keep you all going. By the time he has his party perhaps your mum will be able to go to the living room for a short while to enjoy it there. Small things improve so quickly that it may happen, even if she can only go there for a short time.

Hope you all have a great day on the 1st Birthday, where ever you celebrate it! Best wishes to your mum for a continuing good recovery.

Michelle x