Mandie - Thankful to be alive; yet still depressed?!

[Xmartz]

Hi! My name is Mandie. I am 46 yrs old and I am 2 months post SAH. The only symptoms I had leading up to it were nausea and vomiting. I had a very large bleed. I was originally taken to a local hospital where I spent one nite before being airlifted to the University of PA Hospital where I underwent 6 hrs of brain surgery. The blood was removed, but the source of the bleed was never found. I remained in a coma and on a vent for 5 to 6 days following the surgery. After two weeks, I was released to an inpatient rehab hospital.

 

Unfortunately, during my recovery, I encountered obstacles including several blood clots to the legs and one large clot that traveled to my lungs making my total hospital stay time 2 months. I am home now, glad to be with my husband and two teenagers again, but it is so difficult to be 46 and not have my independence!

 

I forget things often AND, altho I am extremely grateful to still be alive, I am still feeling quite depressed. I'm not my old self, I have a new fear of death and we are going broke trying to pay my hospital bills! I know I am incredibly blessed to have gotten thru all of this, but I have huge mood swings and can cry over anything, especially the thouht that my children aged 15 and 13 could have grown up without me.

 

Does everyone else have this depression, and how long should I expect it to last? I still have to return to the Univ of PA HOSPITAL FOR ANOTHER SURGERY TO replace a large piece of skull that was removed to make way for the brain swelling. This makes me quite nervous as well. Also, does anyone know what the chances are of this happening again? Thanks for any advice/ support you can give!

[kempse]

Hi Mandie and welcome to Behind the Gray.

I'm sorry that you have had the misfortune to have suffered a bleed on the brain. A life changing event, but as far as I'm aware the chances of it happening again are very,very low indeed, so please try to eliminate that at least from your concerns.

Forgetfulness and depression are very common following a sah and I think most of us have cried bucket full of tears, so let the tears flow, this should eventually ease off, although, like all symptoms they make take rather a long time to settle. We are all different with unique experiences, so it's tricky to be more precise with any advice. Patience and acceptance go a long way to helping recovery. You are still in the very early days of this, so don't expect too much too soon, this takes time and plenty of it!

I too was 46 when I had my sah, although I never lost consciousness. My daughter was 13 at the time, my eldest son had his 16th birthday a week before and my youngest was 8, so I fully appreciate your feelings, as the same thing used to upset me. Recovery is very hard going when you have kids to care for as well as yourself, but mine were brilliant, they were made aware that I wasn't able to carry on as I had before and they soon got used to finding me asleep during the day!

Take one day at a time, rest, drink plenty of water, expect a few steps back along the way, but have the belief that you will improve over time and perhaps monitor your progress in a diary - then check every 6 months or so and see how you have progressed.

I wish you all the best,

Sarah

[Xmartz]

Thank you Sarah. Did you also have a craniotomy? And, if so, how was the surgery to put things back together?

[subzero]

Hello Mandie-

 

A very warm welcome to BTG- you will definitely get great support here- take time to find and read posts which relate to your circumstances-

 

My wife had her SAH four years ago- so I can relate to how your husband has been feeling- and it must be such a difficult time for your teenage children- I only found this site six months ago after I met Winnie on line-she assured me I would get support here-and I am so glad I did. Please tell your husband to make use of it too-there will be much support for him also.

 

My wife was in hospital with other issues five weeks prior to her SAH and she took a DVT -but again-prior to her SAH- after nine weeks in hospital she also was so glad to get back home-

 

You and your family are starting on a long journey and you will make progress- you will read on here often- don`t rush your progress and take plenty rest- and make sure you are well supported by family and the medical support staff-

 

I wish you the strength you need to be positive in these early days- and look forward to keeping in touch with you and your family about your progress-

 

Take care

 

Subs

[Winb143]

Hi Mandie

We don't get over it overnight, but we do overcome what's happened to us and although it's a long haul you will get there.

We can cuddle our families and we have a 2nd chance, passes tissue to XM. Cheer up when possible, I find singing helps me not sad songs but happy ones. Look back in 3 weeks time then another month and remember how you feel now and how you'll be in a few months time.

I had coiling done after that I got ventriculitus, then Sepsis, and UTI. My Family went through hell and I remembered hardly anything until I had a shunt fitted, then I saw my Family again. Sisters singing while I was out of it, now I sing non stop. Poor hubby and Daughter.

So remember No Stress and try singing or laughter xx I wish you well.
Head up XM we made it xx winks at  M  xx as I always do to people who are on a downer, now cheer up and be happy and see Tina as she had a craniotomy I think xx Keep Well,  winks and walks away xx

Best wishes
WinB143 xx xx

[Daffodil]

Hi Mandie.

Welcome to our group and sorry for the time you have had.

I share some things in common with you. I stayed in hospital initially for 7 weeks with a significant bleed and then I had subsequent surgery, not for a craniotomy but to place a shunt which notched up another 3 weeks and more healing. It's a tough time all round. My daughters were 6 and 8 when I had mine and I was 39 and it wasn't until I came here and someone reassured me that they would learn better compassion and empathy through the experience that I began to see it wasn't all bad and they were right. They did and they have come through it.

When I came round after a few days I just wanted to know the girls were ok, it was weeks before I was well enough to have them visit but it was the best feeling ever. I could see the family unit and love they had surrounding them meant they would be ok whatever happened to me. So yes they needed their mum and I was determined to live and get better but I also knew that they would be ok so honestly it allowed me to focus more on my brain healing and being kind to myself as I hope you can in these early days.

I had a good friend who had a craniotomy that needed subsequent surgery post a tumour and her recovery has been similar in many ways to mine from a SAh and shunt surgery. You are going in with no emergency and that is good, it will take the stuffing out of you again so expect that and ask for lots of help and don't ramp back up post surgery to where you are even now. Gentle baby steps.

It will take time my lovely but as Win says, have heart. The pain levels will reduce, the healing will continue and you and your family will hopefully come out with even more respect love and understanding for each other

[paul99]

whoa! there mandie

 

   you are in the very early stages of recovery take some time out and take a deep breath you will have many thoughts going through your head at the moment

 

im sorry you have joined the unwanted club but there are many who have gone through exactly what you have and survived.

 

that is the main point here you survived  you will find there will be many steps forwards and the odd step back enjoy the family  and let them carry you and support you through this recovery .

 

I would think it unlikely to happen again I haven't heard of many people being hit twice with lightening lol just focus on the future and take one day at a time please  listen to your body sleep when your body tells you and don't overdo things so soon there is an item on here called a letter from your brain please read and digest we will always be here to support you

 

you can let off steam you can rant and rave and remember most on here have experienced exactly what you are experiencing

 

enjoy life and cuddle the family any time you want  take care

[kempse]

Hi again Mandie, 

 

No, I didn't have a craniotomy, so I can't really answer your question. I had coils inserted, up through my femoral artery into the aneurysm.  I also had this same procedure done 11 months later to add more coils.  I have another aneurysm which is being monitored. I am due for an MRI in July/August and have already been advised that if this one should need operating on, then it will need to be a craniotomy and the thought of that does fill me with fear.  I'm hoping it won't come to this, but if it did, I'm sure I would be asking the same questions as you are.  I hope you can get some reassurance.  

 

Sarah

[Xmartz]

Thank you all for the warm welcome! It feels good to connect with others who understand what I've been thru and am going thru.i have very pushy parents who think I should be pushing myself to do more and more every day! But I also have a large blood clot in my heart and lungs! Frustrating!sending big thank you'd and cyber hugs to you all!!

[Xmartz]

By the way, the worst part of the craniotomy right now is wearing a helmet at all times except for when I'm lying down. It's not only not very fashionable but also extremely hot on the summer time

[Xmartz]

Can someone tell me where to find the "letter from your brain"? Please? Thanks so much!

[subzero]

Hi Mandie

 

For `Letter from your brain`  Click on the first Forum- Subarachnoid Haemorrhage-  when it opens-it is the 13th section down-

 

Hope this helps-

 

Subs

[Daffodil]

Mandie. Just wanted to add something aft your last post. Your parents may be pushy , you scared them to bits and they love you and want you to get well quickly and plus they probably used this tactic all your life to help encourage and it always worked but speed and push doesn't work in this scenario as well , patience and tenacity do though. Can you maybe show them this site, get them to read some of the stories , help them to understand its different to a broken leg or typical surgery recovery?

Keep a diary for yourself, celebrate each of your small goals and inch forward, build a solid foundation of recovery, remember your brain is using energy to run everything else and heal itself, give it space to do that. Also talk to someone or us, it is all changed, we know that, it feels different and I don't mean the pain and that takes getting used to.

The loss of independence is very hard to take. To give you an idea I had a rota of 'mum sitters' when I came home as I just was unable to do anything for myself and certainly couldn't look after the kids, I could hug them though. Driving was off the agenda for over a year but I can reflect 3 years down the line and my health and life is steady albeit differently structured to previous but that's progress isn't it.

So lots of hugs, rest, water and keep hope in bucket loads for improvements. Some come daily some take lots longer but come they do.

[kempse]

Hi Mandie,

 

I have to agree with Daffodil, being pushed by anyone to do more in recovery is absolutely the worse possible thing to do! You need kind, gentle, encouragement, with lots of practical assistance otherwise you will struggle more than ever.

 

Trust us, we know!!

 

Sarah 

[Mandy Wright]

Hi Mandie, and welcome to BTG!

It sounds to me that you've already gone rough the worst part of the craniotomy, and that the surgery you need to go back for is to replace the bone flap, although I could be wrong. If I'm right though then it should be pretty straightforward with minimal after effects, apart from those usually associated with a general anaesthetic. They shouldn't need to furtle around with your brain this time! I bet it'll be great to get rid of the helmet!

I'm sorry you've got the added stress of medical bills and pressure from parents, even though they mean well. Feel free to vent on here, keeping it clean, as I think most of us can relate to something of what you're going through. It's also useful to be able to look back and see how far you've come in your recovery.

Warm wishes,

Mandy

[Xmartz]

On another note,

When this happened my. very. Pushy parents had private conversations with my doctors. Upset me because I did not want the doctors sharing my information with anyone but my husband! Because I took oxycodone before this happened for chronic back issues, my mom convinced herself that I was an addict.

When she shared this information with the doctors, one of them mentioned that maybe that contributed to my stroke. Every medical personnel that I have spoken to since could not find any connection between the two. They all said if I took cocaine or meth, sure, that could contribute, but not pain meds. Has anyone ever heard anything like that? i will certainly be filling of a new HIPPA form before my next surgery though!

[Chelle C]

Hi Mandie,

 

Welcome to BTG so glad you have found this site, you will get lots of support and good information here,

 

I had my SAH one year ago, like you I was scared that it would happen again,

I asked my doctor for help and I had some therapy, this helped a lot.

 

It`s natural to be scared you have suffered a huge trauma, you have to take things slowly 

listen to your body and your brain the healing process takes time,

plenty of rest, when you feel tired make sure you can take time out to rest.

 

Drinking plenty of water is a great help, I`ve never drank so much water but it does work.

 

As for you having pushy parents who think you should be doing more,

In February this year someone very close to me said a very similar thing to me

I was devastated by this, I basically said they should try walking in my shoes 

just for one day as I thought that would give them an idea of what it`s like.

They`ve said nothing like it since.

 

Time is what it takes, you are a survivor and you will get there

take each day as it comes.

 

Good luck to you and your family as you take this recovery journey together

 

Love

Michelle x

[Winb143]

I was told I was alcoholic while in hospital, I remember saying you must be kidding me he drinks it too quick for me to get a look in. lol

 

I admit I liked a couple or 3 of wines at weekends but if I was an alcoholic surely I would crave for a drink !!

Note: Glasses lol

 

Perhaps I was, but then I would need a drink during the day wouldn't I. 

 

Oh Well I guess 2/3 glasses never did me any harm apart from SAH Lol  xx

 

Be Well All

 

Win xx xx

[Sharlua]

Hi Mandie

Sounds like you have had a real tough time and it is very early days for such a significant bleed. Everyone on here knows that each person who has SAH has different recovery journey however I think the majority of us have experienced some emotional response after it.

My SAH in January which luckily did not have a significant bleed, caused by a large aneurysm which was coiled, has taken me on a emotional roller coaster, feeling pleased to be alive, angry, frustrated and shell shocked. My doctor did suggest that I maybe suffering some post traumatic shock and I know I feel nervous about it happening again. I don't know if I will ever return to the illusion that I am immortal. I am however much better now and my mood swings are less.

I do think sometimes people feel that trying to push you is in your best interests to help and as Daffodil has said your parents must have had a massive shock, however I agree that this is one where you have to give yourself time and space to recover at what feels right for you, it may seem slow but better this than to rush and have a massive set back. I am sure your in expert hands and that the surgery planned will be less traumatic than what you have been through.

I wish you well with your recovery and please seek support from people on this site as I have found it really helpful.

Regards Sharon x

[Ponigirl]

Hey there Mandie- I'm so sorry to have to meet you under these circumstances. I live in PA- near Gettysburg. I suffered a SAH, I had a bleed that University of MD (lived in MD at that time) never found the source. My bleed was no where near as bad as yours. Like you I had depression. I think mine was partly from realizing what I was no longer capible of doing (HA- like spelling!!!). I'm 2 years out and am still suffering from the depression and that is with medication!

We all have different problems and deal with them in our own ways. I do pray you get the help you need to help deal with the depression. Do you go to a support group? Are you seeing anyone that you can mention the depression?

You don't need to respond to any of my questions. I will keep you in my thoughts and prayers.

Best of luck!!

[Louise]

Hi Mandie

 

Warm welcome to the site, glad that you found us.

 

I think the fear and depression is quite normal after all its a HUGE thing to happen to you in time I think though this will ease as time passes by did for me anyway.

 

Your not alone and that's the one thing you must know that we've all been there in one way or another.

 

One of your mood swings depression ones you could stop now is your kids didn't have to grow up without you - your hear so put that one aside...

 

There is no rule on how long it will last the challenge is learning to control/monitor it know when your going to feel like this and things that make you worse.

 

sending you very best wishes.