Feeling all emotions today 😒x

So to cut long story short my 7mm Annie was found 23rd December 2016 after having MRI scan from that had CT scan February 2017 shown it grown to 8mm

Then after many complaints and phone calls to speak talk to a doctor as I had never spoken to a doctor/consultants about their find of my Annie in December 2016 I was then sent for a angiogram in September and was told after they had finished they could see it had grown again?!!!! I asked when will I speak to a doctor and they said a appointment will come in the post?

It didn’t PALS said they’d chase the appointment and said I would see someone within 2 weeks!!! I wasn’t

So today phoned PALS again they rang whoever and then nurse rang and said I’m not the only one waiting and 80 other patients are waiting to be seen also ???

All I have ever wanted was to speak to a doctor who can tell me what is going on in my head 10 months I’ve waited anyone got any ideas to help

25 Replies

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  • Yes. Go to your gp and ask to be referred to another hospital.

  • Thanks Andrrs1 I have a gp appointment next week to ask that x

  • Hi,

    Have you had any progress at all??

    Lynda

  • Have had 3 scans mri December 2016 when found Annie then in February ct showed it had grown then September angiogram showed again it has grown. never spoke to a doctor consultant about it.

    Hubby took today off so he can speak to pals again!!

  • And here's another suggestion... i'll write to pals on your behalf. Of course you can see/approve the draft first one thing I learnt in a previous job in strategic communications is that if the audience doesn't listen, change the message or change the messenger! Worth a try

  • Thanks Anders kind of you to say but PALS already have my 3 daughters and hubby on to them and myself for the last few months so ready to move above them now

    But Thank You x

  • Go for it!! Right behind you :)

  • Do you know if the neuro department has advanced nurses who you may well be able to speak to? I was able to speak to them a few times as I had to wait 5months they pulled my file and were able to tell me a lot more and more about the type of brain Annie I have. It might well be worth finding out if they have these nurses and may put your mind a little at ease at this very worrying time xx

  • Mikey123 yes they do have.

    First one I spoke to earlier in year said shortages of Doctors and I hadn’t been forgotten. She said I need to speak to consultant then went on maternity leave. Now new one said I’m not the only one 80 people are waiting and was quite rude sounded annoyed at me for contacting so not much luck with her 😞

  • Sounds very uncaring indeed I'm really sorry to hear that because at Bristol Southmead Hosp they have been brilliant. All I can say is and I doubt this will not make you feel much better but I believe if there was a true risk to you now I think they would have had you in. As I know it's so scary indeed and the waiting is awful . Mine is low risk they say and I've got more chance of being hit by a bus. It's given me terrible panic attacks these past 18 months. What happens is the stress and worry of it all becomes more of a problem.

    I do hope your seen soon. Personally I would be ringing them everyday until you get the answers you want and a appointment.

    Good luck Pam xxx

  • Well we are concerned about YOU!! That is really unhelpful. So much for the caring profession??? It's the way the system is NOW!! You HAVE TO be really assertive. It's sad really that nice people who hate causing a fuss just get put to the back of the queue for been NICE!!! I live in North Yorkshire but had my surgery done in East Yorkshire where all the brain surgeons are based. It didn't make much difference to me as York is about 15 miles away and Hull was about 20. York don't have any resident Neurologists based there so it had to be Hull. I know the PALS in Hull were fantastic. They replied the same day as any queries were sent to them. I just went on the hospital PALS website and made any queries I had by email. I sent one last night about my Consultants forwarding address and email as he has now moved to one of the big London Hospitals and I have already had a reply saying they will get back to me by telephone later this morning.

    I think you have been really unlucky as I have used PALS in both York and Hull and they have been really quick and efficient. If it's any comfort at all I had NO scans done before my surgery. I had a big drop in blood pressure in late December 2016 and was rushed into York Hospital by ambulance where I had a brain scan done and all the results were then sent across to Hull. I had the surgery without any further scans been done and when I asked my Consultant if he would need any more before the surgery he said not. He explained to me that once I got into theatre all the information he would need would be available when he was operating.

    The only wait I had was for me to decide between the clip and the coil. I just need contact now regarding my Driving Licence and I would prefer the Consultant who carried out my op to be the one making the decision with DVLA. I still think PALS is your best option. It's just a little sad it sounds like you have dropped unlucky with who is dealing with your case. At least they are there to work on totally on your behalf. Is the area where you live short of medical staff?? All this time and still not moved on very much if at all!! PLEASE give PALS another go. You might get someone who does that job PROPERLY!!

    Lynda

  • Thanks Lynda I live in Coventry West Midlands earlier in year they said they short staffed? But that was February time?

    Hubby spoke again to PALS again this morning and they are now taking complaints to chief executive and they are phoning tomorrow? So we will have to see what tomorrow brings x

  • Hopefully something positive & concrete!! When you look at the bigger picture there wasn't much time between you finding yours & me mine & I've had the surgery & I'm recovering. The after effects sure as hell haven't been as bad as the worry pre-surgery. To say I had the clip as well so the surgery was a lot more invasive than the coils. Fingers crossed you get some definitive news tomorrow so you & your family can prepare to have the surgery or the coils & be able to move forward. I know a lot can depend on the area where you live?? I've seen where some patients are just left if they are over 60 which I think is just disgusting. I don't think anyone should be left when something can be done for them. My fingers are firmly crossed for you that you get some positive news & can begin to move onwards & upwards!! What a great Xmas Present for your family & yourself if you can get the job done!!

    Lynda

  • Any news at all?? I really feel for you honestly. I found the worry prior to the surgery flipping AWFUL!! The relief was MASSIVE!! Hopefully you will surely have made some progress by now???

    Lynda

    XXXXXX

  • I have my first appointment next Tuesday 7th

    I am trying to think of questions I need to ask and get a list together as I feel I need to make to most of my appointment maybe my only chance to get any answers? If you have any ideas of questions please say so I can add to my list.

    Waited 11 months for this day had it all planned now the appointment is near I’m feeling scared worried and don’t want to get in front of surgeon and say nothing.

    My mother in law passed away Monday night unexpectedly so dealing with that as well all the arrangements. But I will still get to this appointment she would of wanted that I know XX

    Thanks Jennie xx

  • Good Luck today. Everyone on this site will be thinking about you today. Here's hoping you get some progress & you start moving forward.

    Lynda

    XXXXX

  • Thank You so much Lynda for thinking of me x

    Will let you know how I get on later

    Jennie xxx

  • I don't know if it's any kind of procedure but when I first saw my Consultant he gave me the options available and went through them - Clip - Coil or just leave it alone and then sent me off to consider which option I wanted. I knew straight away which one I was going for as probably like yourself you will have researched the options once you have been diagnosed. I think it's just procedure. When I went back about 10 days later I only had one question and that was his pass and fail rates. I just asked him how many cabbages he had left - A row, a garden full or a 10 acre field ha ha. He was proper laughing when I asked him the question but really what else is there to know? He had only left one and the patient had an underlying condition that they both discussed prior her op and she had a stroke during the procedure but he was quick to tell me he got her back up and about again. He had been performing Aneurysm surgery in Hull Royal Infirmary for 3.5 years so not a bad record. I know the rest of the information you would need to know you can easily find online like recovery times and things like that or better still look on here. I found it REALLY helpful reading how REAL people managed their own situations. I know Specialists can all tell you whats going to happen like reading off a board but there is nothing like hearing it from real people who have actually been and had it done. I think I am doing really well but I was shocked by just how good I felt when I was discharged and then after a week to ten days started going down hill a little bit and having strange sleep patterns. It's really obvious when you think about it your bound to feel really good on first been discharged as your still full of anaesthetic but I sure as hell feel 100% better than the LONG WAIT with all the stress and worry attached. I know your going to be just BRILLIANT once you get the hell in that hospital and your going to make a really good recovery as well because the relief of just getting some action and rid of the flipping thing will carry you through all of it. I've only got one niggle I'm trying to sort at the moment and that's my driving licence. I live on the outskirts of a small village and my licence is essential. All the patients who were operated on by my Consultant have had their driving licences back in 3 months but now he's left every other consultant in Hull Royal make their patients wait a full year. I've contacted PALS to ask for a forwarding email and they are trying to tell me he didn't leave one. Yeh like I really believe that!! He's not listed yet in the hospital he has gone to in London but he will pop up soon I'm sure and I would much rather him fill in the relevant forms than someone who wasn't present or doesn't even know me. I don't think I can cope with my husband doing the shopping for much longer!! He never reads the dates on anything and it's driving me up the wall ha ha. He's not the domesticated type at all and if I see another M & S Ready Meal I'll go MAD!!! Talk about can't cook won't cook?? I've had to show him how to use the flipping cooker!! Are you getting stressed at all?? I know either way this may seem like a silly question but you could either be stressing about it looming up or you could be stressing about now it's here it's REAL??

    Lynda

    XXX

  • Thank You for that Lynda just what I needed to read x and I hope my end result is like yours. And hopefully you will get your driving license back very soon

    Jennie xx

  • Your going to be just fine & what better Xmas Present could you get than the big relief that the stress & constant worry is all over. New Year & a New YOU!! i have my fingers crossed for you that your not going to be waiting too much longer now. In my own honest opinion the waiting was a lot worse than the actual procedure.

    Good Luck

    Lynda

    XXXXX

  • Oh thank you hope so xx

  • Any News at all???

  • Wow long day so after my long wait to meet neurosurgeon he’s told me to go away and think about coiling or clipping

    Feeling a bit disappointed not sure why think I was expecting more from the appointment but not sure what if that makes sense. Feel I have learn t from this site and people on site more than hospital

    I go back before Christmas with my decision of what I want to do!!!

    So now I really need to think? How do I make probably the hardest decision I will ever need to make?

    All I know is my Annie is growing it has grown nearly 2mm in 10 months

    So good people how do I decide xx

  • Hello, hope all is well with you. Have you made a decision yet. xx

  • Write down the benefits and risks for each option. You want think if them all in one go so keep going back to review/change them.

    Have you been given the percentage risk of motility or morbidity for both ops? If not get that info from the consultant

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