Hello, my husband is having an operation on the 9th Feb to removal his tumour. Two surgeons will be performing the operation. He has been in hospital for 6 weeks after going to A & E with terrible headaches. He also was experiencing vomiting, double vision, unsteady on his feet, deafness in his left ear and tinititus. We have gone through so many emotions, he's pushed me away st time and extremely angry. I am watching him sleeping as I write this post, he's been more like the man I know today. He's terrified, thinks he's not waking up and worried about how he will be. So many risks to this operation and to follow an uncertain future. I read lots of things about how is going to feel when he's recovering. Please if there is anyone who has been through it or a lived one who has. Please let me know so I have something's I can remember later on. The tumour was not picked up in 2015 on an MRI scan!!!!!! That's another emotion altogether. It is now 4cm and he has no choice for it to be removed.
Thank you
Lisa
Written by
Ellafen
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Elleafen. I am sorry that you and your husband are going through a rough patch. Stay positive, and remember that many more individuals come through this operation with positive results rather than negative.
Here is my positive story (I am 65 years old). I had the surgery 5 months ago. I woke up after 12 hours in theatre feeling perfectly fine. The next day I was a little dizzy, but was helped to get up and start walking. The more I walked, the better I felt. On day 3, the pressure bandage was taken off, and I was told that I could go home. I went back to work as a part-time teacher three weeks later.
After the surgery I had a small amount of facial paralysis for about a month. This is all gone now. Food tastes different still (sweet things taste bitter) and I am not sure whether I will ever get this back to normal - but it does not stop my enjoyment of life.
I have adapted easily to hearing with one ear. I haven't bothered exploring using a CROSS hearing aid as I do not feel that I need it. My family and colleagues have got used to standing or sitting on my good side to talk to me.
I started vestibular balance exercises before the surgery and continued afterwards until my brain had adapted. Once again this happened very quickly. Occassionally I will feel dizzy - in bright sunlight, in darkness, if I shut my eyes - but I have never fallen over. Riding my bike is still a little scary though!!
Take care of yourself. I hope that everything goes well on the 9th. Best wishes.
I know many people who are survivors as myself. I was vomiting, dizzy etc thin as a skeleton. Its not always the size it depends on where it is exactly and of course the skill of the surgeon. My thoughts are with you both but positivity is the word. x
I know what you're going through. My husband was found to have an AN (right side) about 4 years ago. We researched surgeons and found top notch surgeons experienced in this procedure in Miami.
The surgery was 9 hours. Longest 9 hours of my life! He came through fine and while in recovery told ME to go home and rest! I was anticipating the worse when I visited him the next day. I thought he'd be dizzy and barely able to lift his head off the pillow as I was warned to expect. But no!! He was eating a barbeque beef sandwich and fries, watching CNBC and complaining about the stock market!!! He said he'd been up walking unaided (PT cleared him for this). Did that several times already as he wanted to get out of hospital as soon as possible! It was theorized that he probably had the AN for so long, that the balance nerve on his right side was probably not working for a long time and the nerve on the other side was already compensating for the dead nerve. The AN was completely removed, but he is deaf in that ear. He left the hospital on the 2nd day after the day of surgery.
Subsequent yearly MRI's are perfect. This is all positive. However, there were and are some challenges. He lost the ability to taste on one side. Good news however, after several months to a year, this was no longer a problem. Also, while he didn't have the severe initial dizziness which sometimes accompanies this surgery, he is a little off balance occasionally. Has not affected his activities. He also still has tinnitus which he's suffered with for years.
Since he's a veteran, the VA supplied him with state of the art hearing aids. There was also a little blessing in all this. Because he had the MRI to diagnose his hearing loss and the AN was found, they also found small non cancerous tumor in another location. The yearly MRI has shown no growth, but now that we know it's there, it will give us the opportunity to remove it if it does start to grow before it causes major problems. This early detection could prove to be life saving.
You and he will get through this. There will be some uncomfortable times, but by taking the tumor out now, you prevent more serious damage. Well worth what you are going through now. Prayers coming your way!
Thank you so much for your reply and kind words. Reading your story and others alike gives me positivity. I will read them to my husband when I feel I can.
Waiting is worse, in a way, than just doing it, and then recovering and being relieved it's done. Anxiety beforehand is totally normal, and emotions run very high! Months afterwards, I had to paint over red wine stains on a white wall that I threw the (nearly) whole bottle at the night before surgery! And my husband was being an angel, so where did that anger come from.....?!
The medical team will probably have a great sense of humour as they are so accustomed to patients being witless with fear. I remember the relief just as the anaesthetic started to work - no more waiting and worrying, in the hands of total experts who do this procedure day after day after day.... I had also started researching brain plasticity before the surgery, in case I woke up with no brain! Didn't happen, obviously.....
My AN was 3 cms. The surgeons use a very clever little device (invented by a Professor Gleeson at the National Neuro Hosp. in London) which tells them while they're doing the surgery when they come close to important nerves, so they stop there. If they don't get all the tumour out because of it's location or whatever (as with mine), then they just use Gamma Knife or another non-invasive treatment to treat the remainder of it a while later. I remember being fine when I came round. Yes, there are a few trying times ahead, but they're nothing like the fear and anger you have beforehand. Your husband is scared and angry and lashing out. Just 2 more days, and then he'll start getting back to normal. Nerves recover. (I had very weird taste for several months, dizziness took a while to get back to normal, the tinnitus went up and down, vision got back to normal fairly quickly etc. ) You just both need to hang in there a tiny bit longer. Sending you lots of love and will be thinking of you on 9th.X
That was very touching to read, sometimes you loose faith in human nature. Until a time like this where people who don't even know you reach out to you. Thank you for sharing your story very kind of you. I cannot find the words to comfort him telling him he's going to be ok is no help. I just hold him and tell him I love him. I've watched him sleep so many times, we just want him home safe and well. I will post at some point how he is. I hope you go from strength to strength.
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