Hi MysisterB
Firstly, what a wonderful sister you are for finding this forum and taking the time to find out more about the experience your sister will have with surgery. I do actually log onto this web site from time to time, mainly to ask questions about my progress but also to check in on any new comments or posts relating to previous questions i have asked. I will pass onto Andrew when i'm done but i figure i can answer a lot of your questions from my perspective, the patient.
My operation was on the morning of the 27th January. I remember it like it was yesterday. My son & husband stayed in the hospital with me over night so i had support and i could continue to breast feed my son right up until i was admitted. That morning i was unusually calm though i hadn't slept much the night before. I downloaded something called meditations for surgery which was actually really good for me. It just helped me visualise the experience before it happened and feel resolved to the fact this was now out of my control, i just needed to go with it and trust the people around me would look after me.
My surgery went for 7 hours, which was a great result given the neurosurgeon warned us i could be in surgery for up to 14 hours. I came too feeling very groggy but Andrew was by my side. The last part of my tumour "peeled" off my brain and the facial nerve was not severed or damaged. Just adjusting to the fact the tumour had been removed. This was very positive news to hear. I was in ICU most of the next day before they transferred me to the ward that afternoon. I was sucking a lot of ice those first few hours after surgery as my mouth was really dry. It was also wonderful having my husband nearby even when i was I wasn't totally with it yet. The nursing staff were excellent too and kept checking in and they will every hour or so, even if you are sleeping as they need to ensure you are recovering ok and there are no leaks or other complications. I also had to wear these "pumps" on my lower legs which helps to circulate the blood while your not moving around. This was really uncomfortable as was the catheter but i understood why they were there. By Wednesday afternoon the physio came to see me and try and get me up and out of bed. This was hard the first time. I felt really weak and unbalanced and scared more than anything. I hadn't yet had a shower as i was too nervous to stand for too long. By Thursday (day 2 post surgery) i was starting to walk around the ward with my husband but i did notice a small leak from my right nostril. This is something you need to watch carefully for after a surgery like this as its fluid from the brain and generally means more surgery. I think Thursday the catheter was finally removed too. By Friday, my nose was really leaking every time i was up and about so my neurososurgeon explained he would need to go back in and operate again to plug the leak. This happened on Saturday morning and i was back in ICU for another5 days after that i had a tube in my back which was releasing the leak slowly and i had to remain fairly flat in bed the whole time. This was a tough period as i also had the catheter in again and my eye was really hard to deal with as it wasn't closing due to the facial palsy as a result of the first surgery. My eye was constantly dry and the nurses were constantly giving me drops or gel to lubricate the eye. By Wednesday of the following week i was out of ICU and back on the ward, without catheter and starting to move around again. I forgot to mention that first shower was tough and every shower after that i was a nervous wreck. I have long hair so it was all knotted with dried blood and needed to be combed out on top of the fact i couldn't close my eye and had a wound to protect. I really appreciated having my husband help me with every shower i had, not the nurses. Be conscious of what a big deal it is to even be up and out of bed let alone having a shower. It did feel amazing having a shower and feeling clean after such a big ordeal. I was out of hospital by the following Sunday so really 2 full weeks for me. I made sure i took it really easy after I got home, no heavy lifting, bending over, protecting my eye with drops, gel and bandaging at night. I think the more help you can give the better. Your sister will need it. I like to be very independent and do things myself and this is one time in my life i realised i had to ask for help and take whatever help was offered. Friends offered meals, to take the kids, my mum and mother in law spent a lot of time at our home as i was so tired everyday i needed rest and sleep. I could sleep for 2-3 hours somedays. The anaesthetic does take a long time to leave your body so your sister and family, friends should all be prepared for that. Rest is really important. Walking is important too, for your balance and recovery in general.
My pre surgery advice, don't let your sister get too weighed down by reading stories of outcomes before it happens. She needs to stay positive and strong in her mind and everyone has a different experience. I am a firm believer that a positive mind set both going into this and coming out the other end can only help your sister on her journey. We also used a website called caringbridge.com to update family and friends so my husband was not bombarded with countless calls and texts through what was a very difficult time for all of us. Do see more than one neurosurgeon. I only saw one, he was great in removing all the tumour and in hospital had a wonderful manner but since then i have seen him at least 3-4 times and i have found his manner difficult to take through my recovery. I may have still gone with him in the end but i would have liked to talk to at least one other surgeon for a possible different surgical approach? Your sister may not have time for this, but if she does i would say it may help her feel more resolved about her decision. Whoever you choose ask as many questions as you can, don't be embarrassed. I made a note in my phone every time i though of something and still do for follow up appointments. Get the neuro to explain everything in a way you understand. My husband still comes to every appointment with me as i tend to zone out when the neuro talks of any negative outcomes for me. He always seems to hear other things i seem to miss!
After surgery, be as much help as you can. Even if you feel you are being annoying. I needed a push. A push to motivate myself to walk, to feel positive, to remember it was amazing to be alive after all of this. She will need encouragement and positive people around her at all times. I just needed hugs and support really. I had good and bad days. It helped that i have two kids to keep me busy and distracted but i also felt sad i was so tired all the time and couldn't do as much with them as i wanted. It will get better. About the 3 month mark is when i saw a real physical change to my energy levels but everyone is different and will depend on how the surgery goes for your sister. Also, be conscious of the single sided deafness which is a result of removing the tumour, especially of this size. Friends and family are still getting used to staying to my left side (good ear) when we talk or walk down the street. If you can just be aware of this it is a big help as its a massive adjustment to your life and its so nice to not have to strain to hear or ask people to move and rearrange themselves.
This was my experience, without knowing your sister its hard to know what will be right for her but hopefully this gives you some insight on what to expect. This forum was a great was for my husband to seek advice and knowledge about the tumour and i am very thankful for finding it. I wish your sister all the very best as she embarks on this life changing part of her life and thank you once again for making contact. With a sister like you around, she will be well supported and loved. Lastly, i hope i haven't scared you with all this information and feel free to contact me again if you or your sister anything else.
All the best,
Sonia x
