Perry_83 Posted July 27, 2019 Share Posted July 27, 2019 Good afternoon all, I had a craniotomy on the 6th of May to clip an aneurysm which has caused an SAH. I went for a follow up scan on the 8th of July and have just received an appointment letter. The issue I have is that the appointment isn’t until October! I feel like this is an incredibly long time to wait without knowing what’s going on in my brain! I have a lot of questions that I would like to have answered as I was discharged and told basically nothing about what had happened. I guess my question is, have any of you had the same procedure for the same thing and can you offer me any advice? Any help would be greatly appreciated as I’m incredibly stressed out by it all at the moment. Thank you in advance. Link to comment Share on other sites More sharing options...
jess Posted July 27, 2019 Share Posted July 27, 2019 I was left waiting ages when I went for a scan and their reason was well th ere was nothing wrong with you we needed to see the ones who had got problems first to arrange operations and discuss treatments xxx Obviously I don't know why they are making you wait but maybe there is nothing wrong maybe they want to leave you longer see what mental state (depression anxiety ptsd ) you are in I was reading somewhere they were planning on longer follow ups to check how patients are feeling xxx Hope everything goes well and you keep on improving and recovering xxx Link to comment Share on other sites More sharing options...
Chelle C Posted July 28, 2019 Share Posted July 28, 2019 Hi Perry, Welcome to BTG, sorry to hear that you suffered SAH, I think you will find by reading a lot of the personal stories of people who have joined this wonderful group, that a lot of us are discharged without much information about what has happened to us, I know it can be a very scary time, you are not alone, you have come to a great place for support and advice. I personally didn't have a craniotomy, I had coiling, I had my SAH in June 2014 and my follow up was November 2014, it may seem like a long time and feel like a long time but as Jess said they usually leave a while in between surgery and follow up to give you some time to recover. You will have all kinds of questions to ask them, try to make a list of everything that you would like to ask because it can get a bit overwhelming, then you can give them your list when you go in for your consultation and I am sure they will do there best to answer as many as they can. Try not to worry to much, I know it is easier said than done, just try and relax, make sure you are drinking plenty of water and make sure that when you are tired you get plenty of rest. Your brain and your body have suffered trauma and they both need to recover. Recovery can be a slow process and the recovery road can be a bit bumpy at times, listen to your body and your brain they will let you know if you are overdoing things, take things slowly and be kind to yourself. Hope you continue to recover well and you keep on improving. Love Michelle xx Link to comment Share on other sites More sharing options...
Louise Posted July 28, 2019 Share Posted July 28, 2019 Hi there Warm welcome to the site, glad that you found us. I was ages between appts I think its just how they do it, (although if they were the patients I think they'd get the despair it puts us through) my thought is though, if there was anything wrong they'd have your appt sooner. it takes a long time to heal so maybe too that's why its always so long... take things easy when you feel tired then rest up, keep well hydrated especially with the heat. Link to comment Share on other sites More sharing options...
subzero Posted July 28, 2019 Share Posted July 28, 2019 Hello Perry … and also a warm welcome to BTG. It is only right that following such a dramatic and invasive operation, you are filled with anxiety, uncertainty and looking for more answers. The earlier comments explain early discharge well. Very little comment and next to no advice. But as they say …. the extremely delicate procedure has been carried out and the Medics are happy with the result or you would not be discharged. Cases of serious problems arising immediately following discharge are in a minority. However as Michelle highlighted, your brain has been subjected to serious trauma and even at discharge, no-one can tell how this will play out as you slowly recover at home. Problems such as fatigue, headaches, memory loss, frustration and irritability, personality issues, reduced sight and difficulty when in crowded noisy places, are but a few of the many post SAH issues. Everyone`s bleed is unique and everyone is affected differently. Reading the various BTG Forum threads will help you greatly in the days and weeks ahead. If you have been in employment.... do not attempt to return to full time work too soon. It is better to take these early months to recover than to return too early and be faced with failing to cope with the job you used to perform with ease. Please don`t be afraid to talk openly to your family about any fears you encounter. Remember they too are to some degree in shock, as they are so uncertain as to how best they can help you. The bottom line is that you are perfectly in order to make contact any time with your consultant to allay any fears. Best wishes to you and your family in the days and months ahead. Subs Link to comment Share on other sites More sharing options...
Yun Posted July 29, 2019 Share Posted July 29, 2019 Hi Perry, I had a craniotomy November last year and the first follow up was in Dec (no scan, just a chat). A CT scan and follow up was then done in March to make sure everything is healing well. I was told:” you are cured and see you in ten years.” .... any way, so timeline is pretty similar to yours. Try not to worry, I know is hard when they tell you so little. After the surgery they did scan me to make sure the clip is in right and bleeding has stopped. I think after that initial scan they have a good idea about how the surgery went. Did you have that while you are in the hospital? I’d like to think they won’t have discharged you if they saw something amiss. Good luck and sending healing vibes, Y. Link to comment Share on other sites More sharing options...
Winb143 Posted July 29, 2019 Share Posted July 29, 2019 Hiya Perry, I was so scared after my SAH I knew nothing and was in cuckooland ...My Family were worried for me and I was talking to people but no one would talk to me !! I have that effect on some ha ) Perhaps it wasn't my time !! My Daughter found this site and it helped me to realise I am not the only one. I had shunt put in and came round to some sort of normality. Couldn't walk, short term memory loss and other members had the same and they laughed about it. So it helps to know we are not alone.!! We need happiness in our lives after what we have been through, so I sang a lot, Hubby wasn't to pleased as I sing off key !! OT's said I'd never be the same and to put me in a home ..I knew I didn't like them, I cried everytime they came near me ha !! We do get better but it is a long slow journey and cannot be rushed, but look back in a month or so and any worries come on here and give vent to feelings, That is what I did and it helps no end. My hydrocephalus was keeping me locked in my own world. Do not listen to others troubles and keep a smile at hand xxx Time to be a little selfish and keep yourself happy xxxx Good luck in recovery and all the best xxxx...... On here is "a letter from your brain" which will help you understand what your brain has been through A Letter From Your Brain - By Stephanie St. Claire ©1996 By Karen July 28, 2014 Link to comment Share on other sites More sharing options...
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