Getting answers at last

[Bonnieblyth]

Hi all i have not posted in a while minly because i was so despondent with the process of getting answers from my docs so didnt want to bring negative vibes into the forum. At last after over a year of delayed appointments 3 different types of scans, an active treatment plan is now being discussed which is a relief as the aneurysm is growing although still only small it is lobulated and now considered a risk of rupturing. As i have a family history of ruptured annies its a relief to know i will be getting rid of it. But i now have more questions lol. How long is recovery after the op please?

[maya72]

I had my clipping on paraophtalmic artery done just 7 weeks ago, Still recovering having pain in incision and very quick tired. But thanks the God that alive and can look after my children

[Bonnieblyth in reply to maya72]

Thanks maya72 glad all is well with you. Could i ask how long you were in hospital for and how long they recommend being off work and are you suffering from post op headches. Sorry for all the questions xx

[malalatete]

That depends entirely on what kind of procedure is recommended - coiling or flow diverter treatment is much less invasive and so therefore has less side effects, less inpatient time and quicker recovery time than clipping. You probably won't know which procedure until you have had the neuroangiogram done. But either way, there isn't a standard time in, or reactions post-op, as these are very individualised, a bit like the aneurysm.

I had FD treatment, was in hospital 6 days, (another lady was discharged after 3), was bedbound with post op headaches for about 2-3 weeks afterwards, and it took about 6 weeks for my headaches to return to what I would call 'normal' for me. But you hear of people who have craniotomies and then go back to work 4 weeks later. It is pot luck how it affects you.

Some people continue to have symptoms for the duration - again more invasive surgery means this is more likely - but fatigue, reduced executive and cognitive power, so affecting your ability to process info or concentrate, short term memory problems, vertigo and proprioception difficulties are all common. I couldn't tell you whether any of that applied in my case as I have an underlying neuro condition so all that is just par for the course (!) but others find those sorts of issues are there in their lives post-op. So in that scenario it isn't a simple 'recovery', rather life changes.

Best thing to do is wait and see, play it by ear, give yourself as much time for recovery as you can, be prepared for a need to make adjustments afterwards. I cancelled everything in my diary for a month post-op and I only went back to stuff very gradually. It is especially important if you have vascular treatment to remember - even though there are no scars on the head and nothing visible - you have still had brain surgery!!

[Bonnieblyth]

Thanks malalatete that is really helpful. I work fulltime and also run a small business so trying to get myself organised as my diary is full of business bookings that i will have to pass on. I had the angiogram done in december so i guess the full options will be discussed at the priority appointment (that is still not on any system when i chase it up). I do try to keep good humour about all the delays but it is wearing thin.

I am also under a neurologist for seizures and prior to all of it starting i ws quick minded and articulate but since then i am fuzzy foggy struggle to recall words in sentences and can forget what i did in a morning! Thank god for diaries lol. Along side my chronic migraines i think im having all the effects in reverse hopefully any op wil put paid to these eh? As long as im alive unlike my poor sister (rupt BA) i have to keep telling myself that. Hope all is well with you xx

[maya72]

Hi Bonnieblyth! I have been in hospital for 10 days. I was very poor and a lot headaches. When I came back home I started slowly decrease my dose of painkillers. Now I completely off painkillers. I am still having pain in my incision. my consultant said I can go back to uni but take it easy. I am going to start tomorrow but to be honest its so tiring. I am just gonna try. You will be ok Bonnieblyth. Good luck dear. It is so stressful but its good they found it and you will be in good hands,

[Bonnieblyth in reply to maya72]

Thanks Maya72 hope your ok? I have read a lot of posts where people have pushed early to get back to work etc and then struggled with the fatigue and headaches. I will take it one day at a time. Perhaps you should just go in for a couple of hoyrs initially to ease yourself back in. Sending hugs xx

[maya72 in reply to Bonnieblyth]

Yes Bonnieblyth. you are right , I went 3 times to uni after operation and I felt very tired, beside I have continuous pain in my incision. I so enjoyed my nursing course but I definitely know I have to stop and go back to my surgent. Thank you very much,

[Lyndaryan1]

Good Morning Bonnie,

Well only one more sleep at home and then ACTION!! I'm so thrilled with the new modern haircut Sarah gave me last Thursday and it's so practical for what's to come. I'm having a nice relaxing day today with the family and still in a really good place mentally ready for my surgery with the MAIN MAN!! I will be leaving home at about 3.15 tomorrow afternoon to be admitted at 4 into Hull and I'm dreading the overnight stay more than the surgery ha ha. I'm thinking I will be back in One Flew Over the Cuckoo's nest and taking a major part in my adaptation of the film for a while after Tuesday but then it's a whole new way of life. I will be thinking about getting on that plane as soon as I possibly can and have a little bit of recuperation in Valencia and been waited on hand and foot for a while rather than it been the other way round ha ha. I am having a prayer made for me today in Valencia Cathedral so how mad is that?? My husband has been brilliant but he had a bit of a meltdown yesterday and was really emotional and my Grandson had the same the day before but they are OK now & it looked to me like it was something they just had to let out and now they are both forward looking and coping well. It's sad that these males try to keep that strong front when inside they are as frightened as we are and I could actually see it coming so it was no surprise but they have opened the flood gates now and got rid of all that pent up emotion and are good to go now. Be prepared for that one coming and here it was triggered by something and nothing!! So we are all best foot forward now all singing from the same hymn sheet and all looking past the next few days to a future of normality without this black cloud hanging over us all. Tomorrow I have a few bits and pieces to complete before I leave home so I might now be back online for a while but I PROMISE I will be back messaging you as soon as I possibly can to show you how it can be done and exactly what to expect!! I know your not too far behind me so I know it will be useful to you as it's always better seeing what happens by someone actually going through the same as you rather than doctors who know about it but don't actually FEEL whats going on.

You take care & I will be back on here before you know it ha ha. I've got a lot of things I want to do and this alien is stopping it all so next message it will be alien GONE and a normal life. I think I've forgotten what that's like but I intend to find out real soon.

Love to you and your family and STAY POSITIVE!! WE WILL soon be sorted!!

Lynda

[Bonnieblyth in reply to Lyndaryan1]

Hi Lynda

I will be thinking about you. As im having my pre op on tuesday you will be in recovery all done and dusted. So glad this journey is nearly over for you. Remember i want the warts and all chapter when you are up to it lol

We had a good old blow our tops emotional episode last sunday resulted in him storming off for the day....i think we needed it. Bless him its worse for him esp as we have just lost his dad too. We are all good now.

Its been a marathon but we are both nearly at the finish line. I will be waving a flag for you.

Take care

Xxxx

[Lyndaryan1 in reply to Bonnieblyth]

It's really difficult for them I know my husband is a Mans Man and he's kept it all together really well but it was our Grandson that broke him. Our Grandson has had tunnel vision about it ever since I got diagnosed. He's 17 next Month and just sat his first year A Levels so he's a bright lad. He's doing really academic subjects as well like Law and Economics etc and he's only had one option available to him and that has been - It's my Grandma and she's got a core of steel and she will come out of it NO PROBLEM. He's never considered anything else. On Friday he broke and in turn it broke my husband so the pair of them were really emotional which I found upsetting to see them feeling such devastation!! It's really nice to see the depth of their love for me but upsetting to see how deep down it's troubling them!! It is an awful situation for them an I thought the two men in my life would have cracked up long ago but they both managed to keep it together. I think they both feel relief now that it's all poured out and now its all the bad stuff they must have been thinking about like we both will have done early doors but they are definitely on the ball now. We as a family are all singing off the same hymn sheet now so I'm glad they both had the outpouring of emotion as it's best foot forward now and all in the right mood for what's to come.

Lynda

[Lyndaryan1]

Hey up I've got an update!! I'm back listed for admitted next Wednesday and operation first thing Thursday Morning so this time next week mine will be all over!! It's been the first time I've been really edgy and nervous this morning (My husband called it been bloody horrible) I Hadn't heard any sort of reply from PALS and I got to thinking - So am I been squeezed out? Has my Geeky Consultant got all his places filled by others? Will all his other patients get their ops and when it's my turn he will be gone because it shouldn't take nearly two days to check a diary or appointments list for an opening?? It's been the only time I've felt anger and true frustration because I felt the injustice of it was just one step too far for me if I got slung with one of the other Consultants. I was Mr Geeky has put it all together himself so that's nice of him. Maybe he likes my humour or got used to it by now?? So we are good to go AGAIN so maybe I should be a week or so ahead of you and can still report back?? I sure as hell intend to get my sorry backside up and about as soon as I can to prove to Mr Geeky I was worth it. Honestly I feel it's important to let him know how much I appreciate him going to all this trouble for me but that just confirms to me I'm on a winner with him. He's not old enough to be too complacent where he's seen it all before he's still in that phaze of he can make a difference and by god he's made the biggest difference to me.

So I will report back asap as soon as I can after it's all OVER!!

Lynda

[Bonnieblyth in reply to Lyndaryan1]

Oh thank goodness im so pleased for you, just did my happy dance. I know what that frustrated feeling has been like and its not nice. Just a slight word of advice dont try to be up and running too soon or you will relapse. Just enjoy being waited on hand and foot for a while.

Im still waiting for a bed but hopefully not too long now.

Ps i read your escaped on the ward to my hubby he fell about laughing and said is she related to you lol. This from the man who took my for day surgery for a cyst on my neck. Whilst i was in there he kept the day room occupants in stitches with quips like.....ive paid the surgeon good money to slit her throat lol

Take a chill pill now and enjoy the rest of your week

Speak soon xx

[Lyndaryan1 in reply to Bonnieblyth]

I'm so happy. I can see Geeky Stiff One and Two in that theatre now wondering - Will that Jack in the Box Pop Up when I make my incision and Geeky Two thinking - God I need to put her a lot more anaesthetic in to make sure she doesn't grab me bu the throat again trying to throttle me ha ha. I did have a bit of a wobble this morning wondering if I would get my Geeky Stiff before he leaves and he's already working his notice so I was getting flustered about if I was going to be squeezed out of getting him before he goes!! Then it was thinking about who would probably get my operation and as I know nearly all the Neuro men in there the rest of them all seemed to fall short!! Anyway it's best foot forward now and at least I've had another chance to impose my character on the pair of them. His secretary rang me today and Mr Geek had been singing my praises about me been the coolest person on the Planet when the cancellation news came through. My husband is a really laid back bloke but he went ballistic!! I just told her ask the Anaethetist if he thought I was cool? He probably still has my finger marks round his throat ha ha. I'm proper buzzing now knowing this time next week the whole awful situation will be well and truly over and my family can hopefully start and chill out a bit. My husband and Grandson have only just caught up with their sleep cos they've done nothing else since I got home ha ha. I went straight back to work and carried on where I left off ha ha. Please let me know if you get an appointment for your surgery? Who knows we might be having them at the same time?? Now that would be really good cos we would both get over it at the same time. By the way I LOVE the sound of your husband ha ha. I could have cut everybody's throat this morning when us two were arguing about that MRI Scan tomorrow ha ha. He just didn't get where I was coming from at all - All he could see was I was taking a load of RISK for nothing where I had the view if I was getting squeezed out it would be an opportunity to get back to the top of the list. At least it didn't come to the Divorce Courts cos the appointment came through so happy days.

Lynda

[Bonnieblyth]

Not long for you now lynda x

Ive developed deep pain in my lower legs feels like its my veins just trying to get drs appointment (like gold dust) dont want it to scupper my op but need them to know just in case. I wonder if anyone else has devloped issues with legs

Xx

[Lyndaryan1]

So I'm on my last full day at home AGAIN but I know to take something with me tomorrow for the overnight stay as the noise was really bad. At least I will be first into Theatre with my Geeky mate who I have a real feeling about. He's THE MAN for me and I'm in a real good place mentally and just raring to go. I just want to move on with my life and be rid of the alien once and for all. I think it will seem strange it not been there it's caused so much worry that seems to have gone on for ages!! My family still can't believe how calm and composed I've been about the whole situation but I think that is down to the confidence I have in my Consultant. He's not flash arrogant just quite humble and normal. This one action will give you some idea of what he's like. When he came on the ward last week I was stood near my bed and he approached with his hand out for a handshake. I just said - What's with THAT and moved his hand out of the way and went to give him a hug. He stiffened up honestly like he was been assaulted ha ha. He was looking over my shoulder at my husband with an expression of - For Gods sake - GET HER OFF ME ha ha. He can't be used to any physical contact at all for him to stiffen up that badly ha ha. I'm only 8 stone so not exactly overpowering but once he'd got used to the contact he relaxed just a little bit and I said what's a hug between me and the man who's going to be going deep into my brain? I think where you are going is a lot more intimate than a HUG?? I just think we bring the best out in each other and he makes me feel quietly confident and that is exactly the mental state I need to be in before the surgery. I will keep you updated of how I'm doing and you make sure to let me know when you get a date or any progress with your operation.

Lynda

XXXXX

[Bonnieblyth]

Ha ha the poor bloke that cuddle was probably as alien to him as the one in your head is to you lol i bet he is reflecting on your encounters and exploring who he is. Our own reactions can cause us to reflect on hiw we approach people and situations. Ive no doubt that you are giving him far more than he is taking away from you my friend

Ive nicknamed you the lynda tonic in our house and im sure mr geeky 1 & 2 will be thinking the same.

All the very best and speak to you soon xx

[Bonnieblyth]

Thinking of you lynda and looking forward to our next chat xx