7years after SAH and I know your fear I still live with it daily..along with terrible vertigo,terrible short term memory problems,but I am alive! was on boat when first got ill,chipped tooth motored home 3hours or more, drove my self to dentist the next day he fixed tooth sat me up and ....all I know is what they tell me...28 days in coma,6 weeks in nursing home. Be strong,eat well,get /take all the rest you need,and keep sharing with everyone who will even remotely listen ...I know...it helps to talk it through! I assume you are being closely watched by your neuro team. I am in Seattle WA so have one of the very best trauma centers somewhat nearby,but I still worry! You know how lucky we are to be alive,so I figure God has a plan for me! Maybe it is to simply let you know that your fear is shared!
Mike, document your blood pressure a couple times a day and give your Dr a call if you are concerned. Your anxiety could be making everything worse i.e. High Blood pressure, headaches and fatigue. You are feeling vulnerable. Give yourself time to heal and have confidence that things will get better. Try to recognize how lucky you are to have survived this and look for the blessings of each new day.
Wow, it is great to see you researching and writing after only 29 days! My husband was in the hospital for 51 days. His aneurysm ruptured during the coiling, not before. So, you have indeed been very lucky.
I think it is entirely normal for you to have so much anxiety after what you have been through. My husband doesn't recall anything about the four weeks following his procedure. But, I was wide awake throughout and certainly developed post traumatic stress. I googled and googled and nearly drove myself insane. My husband's blood work was not normal and though his primary care physician assured me he was alright, I insisted on taking him to a hematologist and it wasn't until they checked him for everything, that I started to regain my sanity.
My husband's aneurysm was about the same size as yours in the same artery. He had a follow-up angio, 7 months after the original coiling. Everything looked great in that angio. Eight months later, my husband had a follow-up MRA, and there too, the coiled aneurysm looked great.
Unfortunately, my husband has a smaller (2 mm) adjacent aneurysm. Because of his past history, we are monitoring it more regularly, so he will have a follow up angio to take a look at that one, as the doctor feels confident about the status of the coiled aneurysm, but that one will be checked as well.
I think that if you feel anxious, perhaps it is ok to ask for an earlier follow up angio, maybe in 3 months, if not at the typical 6 month period. It will help you to get confirmation that everything looks good. Then, breathe, and gradually you will find yourself thinking about all of this less and less.
Hi Mike, over 120 and over 80 is pre-hypertension. Hypertension is anything over 140 and 90. Ideally, you want to keep blood pressure below 120 and 80.
Regular exercise, keeping away from salt, and increasing potassium apparently all help with blood pressure. But, if it is constantly high, you might need medication.
Mike said:
Does anyone know what would be too high a blood pressure? I did an experiment yesterday. I had to deal with my employer and there was some things that were agreed to then denied so I wasn't happy to speak to them. Anyway before and after the phone call my BP was 131/69 then 169/89.
I know I should speak to my doctor but I really cant seem to make that happen. I have been trying to just get my appointment dates as I have to travel a long way and am being pushed around the system speaking to several people every day but getting nowhere. Anyway I value all f your input as I think this is only feedback at the moment
A physical therapist told my husband, when he realized he could not stand up or walk, that for every week that you are out, you need to give yourself a month to recover. It put things in perspective for us. Give yourself a break. You deserve the rest.
Mike said:
I honestly didn't expect anyone to reply so I just wanted to say thank you.
I think the fatigue is the most confusing thing. I was so busy before that I find myself constantly asking myself if I feel tired because I am not doing anything or am I being lazy. I also have a little bit of a fit every time I get a slight headache. I stop and wait thinking "is this it?"
Great to hear from you and also read eveyone's wonderfully wise and empathetic comments. My wife Tristen (from Sydney) suffered a SAH a year and half ago and we're still dealing with angiograms, CT scans, follow up, and yes, fear. We're also hoping to have a family which makes things even more complicated. I agree with the others' advice about focusing on gratitude for having made it to where you are. And yes to meditation. It does wonders!
We'll be in Sydney for X-mas so just shout if you want to meet up. Best of luck! Terry and Tris
I know how you feel. I used to hate going to sleep at night for fear that I would not wake up the next day. However, I did. It took me a long time to diminish my fear. I had an occasion where my vision went blurring shortly after I had my coiling and I was driving. OMG I said to my husband, this is not good and I had to navigate through 3 lanes of traffic to get to the side of the road (I think he was a little scared as well, lol). Anyway, went to emergency and the doctor there told me 2 things: 1) The coiling is there for a long time, and not to worry it had nothing to do with that, and 2) I had just had a massage and he said, " Never let anyone massage above your shoulders as all you main arteries and there and that he'd had a man die in his arms after a deep therapy massage, so don't ever allow that. I'm 5 years in and just went for my check up in September and all is well. Apparently this is a ten year thing for checks. I know that you are frightened, but don't be worried, you were allowed to live for a reason, you obviously still have things to do on this earth. Take the time to recover though, that is very important. I tried to bounce back too early and made an ass out of myself. Time is what you need, the healer of all things. By the way, it wasn't luck that you survived this. Remember that! You have a purpose and you will be ok. Take care and recover, don't let fear consume you, it's going to be ok, you'll see. I had a rupture on Christmas day, boo hiss, at 1:00 am and they had to medivac me to 2 different facilities after being diagnosed with a rupture at the first hospital. I lived in a rural community at the time. I know that timing is everything but if it's meant to be it will be. All the best!
Being filled with fear is something that is normal. You went thru a major trauma. Give yourself time. You’re not lazy! It took me much longer to recover than I thought. Try to be patient.
I know how you feel. I used to hate going to sleep at night for fear that I would not wake up the next day. However, I did. It took me a long time to diminish my fear. I had an occasion where my vision went blurring shortly after I had my coiling and I was driving. OMG I said to my husband, this is not good and I had to navigate through 3 lanes of traffic to get to the side of the road (I think he was a little scared as well, lol). Anyway, went to emergency and the doctor there told me 2 things: 1) The coiling is there for a long time, and not to worry it had nothing to do with that, and 2) I had just had a massage and he said, " Never let anyone massage above your shoulders as all you main arteries and there and that he'd had a man die in his arms after a deep therapy massage, so don't ever allow that. I'm 5 years in and just went for my check up in September and all is well. Apparently this is a ten year thing for checks. I know that you are frightened, but don't be worried, you were allowed to live for a reason, you obviously still have things to do on this earth. Take the time to recover though, that is very important. I tried to bounce back too early and made an ass out of myself. Time is what you need, the healer of all things. By the way, it wasn't luck that you survived this. Remember that! You have a purpose and you will be ok. Take care and recover, don't let fear consume you, it's going to be ok, you'll see. All the best!
it’s been 10 years since my stent and coiling… Still have a 4cm that they are watching…no change. Original was 9cm and was called a huge one…no neck on it… The first few months they checked it…then at a year…now it’s a few years between checks… That’s my doing as I just don’t want to even think about it. My terrible fear/shock was when I first found out… I was awake for my surgeries…I know most aren’t… I believe they must have given me something not to be scared through the procedures… I could follow on a screen… I had complete trust…what choice did I have? I was given a prescription of Xanax to help the nerves after…but i didn’t need it much. Perhaps that would help you…? Once the procedures are done the doctors said I was better than new…no longer a thing to worry about as it had been taken care of. I hope you will get to the point where you feel this same way. You are still healing…physically as well as mentally. Worry won’t help… Remember…they fixed it…nothing more to worry about. Once you’ve had a few good follow ups, I know you’ll feel better. The best to you…
Hi Mike. Please don't over-research this. I did and got really scared. Trust your neuro surgeon(s).
I live in Perth WA and felt really scared when I left hospital after mine and that is when I started researching. I would recommend you make contact with your neuro surgeon by email if you can, or phone, and just send your questions to them. If you have to ring, write up a list of your questions and tell them you need to make notes OR ask them to put everything into writing and mail their responses to you.
I got really worried the first summer as the heat of the sun on my head made my head pound. I put everything into an email (dot points) and sent it off to the hospital section that looked after me. I got a really nice reply and as I was local they called me in for a meeting to discuss everything. Now after two years, three angiograms (the first to fix the rupture, the second to fix the one unruptured, the third to inject dye into my brain and check everything), then an MRI - I am now on the watch list and my next MRI is in 2 years.
Hi Mike, I too live in Australia (N.S.W)I am also an SAH survivor I too was flown to Sydney(Prince of Wales) from Wollongong Hospital via Helicopter,although that was in 2007 when my aneurysm was coiled.I too used to worry all the time about a rebleed but now I just think how lucky I am to have survived such a terrible ordeal,hope you can find some advice from this wonderful support group.Best wishes Deborah
Hi Mike, over 120 and over 80 is pre-hypertension. Hypertension is anything over 140 and 90. Ideally, you want to keep blood pressure below 120 and 80.
Regular exercise, keeping away from salt, and increasing potassium apparently all help with blood pressure. But, if it is constantly high, you might need medication.
Mike said:
Does anyone know what would be too high a blood pressure? I did an experiment yesterday. I had to deal with my employer and there was some things that were agreed to then denied so I wasn't happy to speak to them. Anyway before and after the phone call my BP was 131/69 then 169/89.
I know I should speak to my doctor but I really cant seem to make that happen. I have been trying to just get my appointment dates as I have to travel a long way and am being pushed around the system speaking to several people every day but getting nowhere. Anyway I value all f your input as I think this is only feedback at the moment
Can you find an experienced with SAH physical-occupational therapist in your area? I’ve been seeing mine for over 2 years now, and she has made the difference in helping me heal, eyesight & vertigo, adapt, exercise & regain balance, treat scar & head pains, pace myself to lesson fatigue & regain energy, memory exercises and new neural pathways, and listen to my fears and reassure me.
It's been five years for me....my aneurysm was clipped but they found yet another one which is being watched....
This gives anxiety ....but I have to agree....Meditation has helped so much (something I would never have considered....)I also go to regular Restorative yoga classes....which was also a first for me.
Given some time ...you WILL feel better...get plenty of rest and learn to relax. I take long walks and lots of them...
I believe we survive for a reason and we should not waste the valuable time we have been given. Every morning even now when I wake I am grateful for the new day. Try to enjoy this second chance ...but it will take time. This site is amazing for insight.
The Serenity Prayer comes to mind....Accept the things you cannot change....change the things you can...and have the wisdom to know the difference.
Enjoy your second change....you will ENJOY life so much more now (once you are stronger)...
Hey mike,
I’m scared too.
Tough being so far away from hospital - must increase the anxiety re- getting to help quickly. Any chance of staying a little closer until you feel more stable?
I had an Unruptured aneurism craniotomy clipping 8 weeks ago and in three weeks need a coiling to " finish the job".
It has been monumental on every level imaginable and also on levels unimaginable.
It’s insane to think I have done/ are doing this - I bet many people think alike.
I do hope all the other great replies are helpful to you - just reading them helps me
I’m a little scared of going into another, although less invasive, in a few weeks.
Does anyone know if the symptoms are less than the craniotomy? ( apart from the head, incision, eye, jaw pain) do I have good reason to be scared all over again? Love any input.
any helpful groups in Sydney Australia that meet occasionally?
Good luck with recovery process
Hey Mike, we were worried about a rebleed with my dad who had a SAH 4 months ago but the consultants told us to put it out of our minds which was great advice because we were able to focus all of our energy on recovery and rehabilitation. If I understand correctly it becomes less likely to have a rebleed as time goes on so you should wake up every day feeling better than the day before. Nice to hear you had lots of luck in your experience, wishing you a speedy and steady recovery :)
You were able to have you BA coiled. My partner does not participate in this web site but as her partner here is the good news. she had her rupture BA on Oct 7, 2014, coiling the 8th, in ICU at Tufts Med. Center in Boston until 29th, out of work 6 weeks and other than some small set backs....she is great. I have been the person that has been a mess. She looks at it like a moment in time. A time and event that will never be forgotten. Our son, Kim and I are closer and appreciate more. Mike, I am sooooo glad to hear you have fear or anger or frustration. That means you are very much alive and have nothing to fear Coming home was scary, but not as much for my little miracle women. You leave the cocoon of the hospital and are now asked to go forward. I am once again happy that you are able to be here and leave the cocoon. You may not have everything you want (like your life prior to the event) but you have everything you need....right in front of you, it is the life after the event....... best
Hi mike
Hopefully work on recovery
Don’t rethink on what might happen
I had a clipping with 2 clips last week and feeling good
Think I will have to go for coiling next, please try think positive
It will always do you good
If you ever want to talk
Feel free
Kind regards
Martina Anderson
Yes it ruptured on 5th October this year and was coiled on 7th. I guess one of the reasons I have been looking for answers so actively is that I was med-flown 3000k's to a hospital that could handle it. I am back at home now and nervous about the distance (a little) - knowing others stories genuinely makes me a little less nervous and if it doesn't I just feel a little more grateful
nancy said:
You were able to have you BA coiled. My partner does not participate in this web site but as her partner here is the good news. she had her rupture BA on Oct 7, 2014, coiling the 8th, in ICU at Tufts Med. Center in Boston until 29th, out of work 6 weeks and other than some small set backs....she is great. I have been the person that has been a mess. She looks at it like a moment in time. A time and event that will never be forgotten. Our son, Kim and I are closer and appreciate more. Mike, I am sooooo glad to hear you have fear or anger or frustration. That means you are very much alive and have nothing to fear Coming home was scary, but not as much for my little miracle women. You leave the cocoon of the hospital and are now asked to go forward. I am once again happy that you are able to be here and leave the cocoon. You may not have everything you want (like your life prior to the event) but you have everything you need....right in front of you, it is the life after the event....... best
