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Hi New Here - laanka


laanka
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Good Evening

I am new to all of this so please excuse any error or omission.Here is the story so far.I have been attending for a hormone imbalance for many years and at the last visit in April the consultant asked that I have an MRI to look at my pituitary area to exclude any growth .This was to be the final visit after many years if nothing showed at the Pituitary Gland.

Three weeks later I found myself crying in the garden having been sent a letter telling me that while I did have a small growth on the Pituitary Gland(not sinister) they had found an aneurysm and had referred me to the local Neurosurgeon.

I have to say I was distraught and went to see the GP(think it was a locum) who advised that I should not be concerned!!!!!! as lots of people have aneurysms .I asked about my BP and was told why check it it had been fine on last check.(I can`t remember when it had last been checked years rather than months).A three month wait followed then I was seen by one of the Neuro team and advised that because of my age they would recommend treatment but the decision would have to be mine.I asked about stats and risks and was given numbers figures which mean nothing really unless you are in the 95% that are okay.I was advised to have my blood pressure checked and treated if necessary! I reiterated the locums advice and this was dismissed as inappropriate.

Anyway I was advised I could talk with the Consultant Radiologist regarding the procedure and what was involved.It was another two months then I received a phone call with an appointment to meet with the Consultant .I have now met with this lovely man who took the time to talk through my scans pictures etc.He then again left the decision to me, it is so hard to decide however I don't think I can spend every day waiting to see if today is the day?

I feel awful going on about making a decision when there are so many people on this site who have overcome significant bleeds ,surgery and life changing events.

I have never been in such a difficult situation before and have had no opportunity really to discuss with anyone how I feel .I have not spoken with my children ( young adults ) or any of my family .

Sorry for going on but I have read the posts and you all seem very supportive and non judgemental .Thanks for listening

Edited by bogbrush
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Hi, just read your post and i think the decision is yours and a very hard one indeed, Im a carer to my wife who had an sah had 2 annis 1 clipped and 1 coiled, and along the way she had other probs,but 7 months later she's getting there, i think you have to weigh up the info you have been given, talk to the docs,and make your choice, myself i would find the knowledge hard to live with but only you can make the choice, but i would say that the people i've met who had coilings without the bleed have all made good recovery's so what ever you decide good luck,i'm sure you will find all the support you need here Rod

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Hi laanka,

Welcome to BTG :) Even though I have had a ruptured aneurysm I also have an untreated one which I am going to have coiled on Dec 1st. I understand how you are feeling. It is a very big decision to make. I suppose my decision was made easier by the fact that I have already had an aneurysm burst.

I wish you luck in making your decision.

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Hi.

My SAH was non aneurysmal so I didn't have any choices to make.

I just want to say that my Twin sister had a pituitary tumour found and treated nearly 30 years ago and is fine. She has been back to London for her MOT this week and the Hospital are very happy with her, and she keeps very well. Good advert for the NHS and their experts.

I wish you good luck with your decision and treatments

Best wishes Anne C

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Hi Laanka and welcome to BTG

Like Debbie I too had a ruptured aneurysm and one that needs to be treated. I agree that it is not an easy decision to make and only you can decide what is right for you.

Good luck for making your decision and we are always here for you when you need any advice or just to talk.

Take care.

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Welcome Anneec and Laanka. I think I'm glad I was taken by surprise the first time, no decision to make. However I am electing to go for further coiling on the second aneurysm. As I certainly do not want another rupture and am not sure I would have the courage for a waiting game, sorry I'm afraid that wasn't much help. I will at least think of you as you do decide:!:

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Hi Laanka :-D A very warm welcome to BTG....what a hard decision you have to make...but i too had a burst aneurysm, so had no choice and was clipped. We are here for you, good luck with your decision...so hard i know.

Take care

Love Tina xx

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hi laanka

its a very hard choice to make my lin had a grade five plus bleed in august last year lin was a very healthy and active lady to say the least. the bleed came out of nowhere and was devastating to say the least and will be long lasting to say the least .

the worry you have is a nightmare do you take the risk of it getting bigger and rupturing or do you have it treated , depending where the anni is you havent said where it is and the size is more relevant to you to enable you to select a route to take , i think you not only talk to the dr's more and also to your family they do need to know what you are facing because they are going to support you through either in your recovery or choice to carry on as normal if you decide to leave the anni in situation without the treatment you i believe your mind will not rest as you will have in your mind the threat if you have it done life will be more normal but i believe you should talk to the family please it is important i know its your body but the loved ones will help you through whatever choice you make

i wish you well in your choice but please talk to the family

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Hey there

I didn't have to make the choice either - it was made for me when it ruptured. Had I had to make a decision then, personally, I would have had treatment (knowing what I know now and hindsight being an exact science). Unfortunately, only you can make this decision, and as with any surgery, there is a risk. What you have to decide is which risk you feel is higher.

Good luck with whatever you decide.

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  • 5 weeks later...

Hi to you all and thanks for the welcome and your support .My decision is made and I am waiting on a date for coiling.I am currently having some time off work to get my head round things and spend time with family and friends .I have been gently telling my nearest and dearest in a way that is gentle and positive this time out to reflect has been good .It does not mean I am any less terrified but as in Debbies quote who knows what tomorrow will bring I am working hard to enjoy the moment.

Love to you all and thanks again for your support ,wish there was a hug smiley.

Laanka

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Hi Laanka :-D:-D:-D hug hug xx Wishing you well for your coiling and hope you dont have to wait too long now you have made your decision. Glad you have some time off work and spending time with family and friends....Take care Love and hugs to you. Tina xx

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hi laanka,

welcome to you from us all, i think like a lot of us on here having been given the choice i would of opted for treatment before a rupture than going through extra pain and discomfort. Its a brave decision and hard to make but you will be well looked after these neuro guys are so good. Talk plenty with your family and friends and good luck to you xx please let us know how you get on. we will be here for you

love caz xx

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Hey Laanka

Glad that you managed to make a decision - its the one that most of us would choose I suppose, but it was a decision that none of us wanted to influence on your part - what we feel is good for us may not be good for someone else and we probably didn't want you to think you should just because we would - OK I'll stop rambling now :lol:

I'm sure it will go well and hopefully you won't have too long to wait.

Edited by Skippy
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  • 2 months later...

Hi Folks

Quick update as to how things are going.

Got a date for admission and the procedure did not go ahead as theatres busy on three consecetive days!.This means I am back home with a new date for next week but that will only be if they have a bed.

I read the posts on here and that keeps me focused and stops me getting to self indulgent but my mood is all over the place .

Take Care all of you .

Laanka

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Hi Laanka, sorry to hear you 've been messed about a bit must be annoying when you get yourself all keyed up and then nothing happen but fingers crossed for next week that it goes ahead then, I'm sure you have nothing to worry about but being human we do ,don't we, Best wishes for next week and let us know when you are up and about again, Rod

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Hi Laanka

I have just read through all the posts on this thread and wow-what a decision to have to make, and then you have been set back a week too.

I do hope it goes ahead for you next week. I am not surprised your mood is all over the place. You made your mind up and you just want it to happen now.

Good luck, and I look forward to hearing from you after your op.

Kel x

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Hi Laanka,

Sorry I haven’t posted on your thread before, but I hadn’t discovered this website when you first posted back in November so I thought I would do so now.

I fully understand how you must be feeling, having made the difficult decision in the first place your anxiety etc will not be helped by the fact that your procedure is being delayed, especially as you had probably got yourself all psyched up for it. A similar thing happened to me - I was due to go in for recoiling last July having had to make that awful decision, like you had to - what a dilemma that is. Then, at 10 am on the morning I was due to go in, I was told they hadn’t got a bed for me and they would ring me back later in case one became available. I had my bag packed and had spent the previous 6 months worrying about it all, so I found it a very tense and stressful time waiting those extra long hours for them to ring me back. (I swear there is a grove in the kitchen floor where I paced up and down) At about 2pm they still couldn’t find me a bed, so it was all abandoned. I then had to wait another long 3 months before I eventually got in to have the procedure, although even on that occasion they again said they hadn’t got a bed at 10am when I rang. They rang me back, but not until 5pm, at which point I quite thought I wouldn’t be going in, so had calmed down a little - only to be told to make my way in. Likewise my mood was all over the place, not helped by the fact that actually having fallen asleep in hospital at 11pm I was woken by a Doctor an hour and half later, to be checked over and prepared for the op, who then proceeded to ask me if I knew I had a heart murmur! No, I didn’t know and did not want to know at this particular time either! Not only had I faulty brain which was to be operated on the next morning which was worrying me to death, but suddenly a faulty heart as well - that really helped me relax and get back to sleep!! Not sure at times, if anyone appreciates that we have any feelings - I was fast becoming a nervous wreck! Whilst I appreciate they probably had more urgent cases to deal with than me, I thought it was totally unfair putting me through all the delays etc, especially as I was so fearful about going in for the op in the first place. Do I gather you had actually got as far as hospital before postponement?

In my own experience, despite getting reassurance from friends and family, it did not get rid of the fear and apprehension that I felt, but having “done it” I feel quite proud of myself and now, three months on, I do wonder why I got myself in such a state. I wish you well for next week and hope that you will soon be writing on here telling us all about it. I’m sure the sheer relief of it being over will make you feel so much better – I know it did with me!

Sarah.

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Hi Sarah

I did get admitted and had three days of fasting before going home .I am a big feartie but I am getting myself into some state about next week and boy do I feel bad about that when I read this forum.

I should be so uplifted by the courage of those on this site.

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