Author Topic: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN  (Read 8998 times)

Sonia in Sydney

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Hi All,

My wife Sonia was diagnosed with a 4cm AN on 18th December 2014 in Sydney, Australia.  She had presented with some hearing loss, tinnitus and minor balance issues and after a couple of different ENT doctors an MRI was done and we were made aware of the Tumour. The next day we were quickly scheduled to meet with Dr.Biggs the Neurosurgeon. I still remained positive the night before that the mass as it has been described would be small and could be treated with Radiation or similar, however once we met with Dr.Biggs and he showed us on screen the large tumour it was like a bad nightmare. He was very matter of fact on the day, outlining the many risks involved, however re-assured us that he conducts these operations every 2 weeks. We are scheduled for Surgery at Royal North Shore Private hospital this coming Tuesday 27th January and are assured we have the very best team operation on Sonia.

The diagnosis was almost a month ago and the initial shock was terrible - Since then however, while Sonia and I have had our bad days we have attempted to enjoy ourselves push this operation to the back of our minds and spend as much time with our kids as possible, we even took a small holiday which helped to distract us.

However, it is now the day before she is being admitted to hospital and Sonia is very anxious and I am beginning to freak out.  After reading numerous posts on this Forum i was hoping somebody could offer some opinions, suggestions on our situation.

FYI - We have 2 kids, Mila 22 months and Thomas 14 weeks old, so also have the added complication that Sonia is breast feeding our son and is adamant she wishes to continue to do so. She has asked me to pump her milk after the operation no matter what in and attempt to keep up the supply so she can go back to feeding him a couple of weeks after the operation (is this feasible). 

Sonia is being admitted tomorrow for some pre-op bloodwork and a CT scan which I understand is to program the computer they use to access the brain. We have packed a hospital bag and I have read about bringing a blanket from home and some lip balm so will ensure these are all packed. I've also put a couple of movies onto her ipad (although I'm not sure if she will be able to watch them) and will download a couple of inspirational audiobooks for her to listen to. Today she is getting very anxious about the surgery, I wanted to know will they administer a sedative to assist in her sleeping the night before the operation?

What should I do to prepare for the day of the operation? I need to be at the hospital early on Tuesday so I can give her a kiss and cuddle before she goes in for surgery which is expected to be around 12 hours. Should I be prepared to stay at the hospital for the entire time and if so should I organise to have a friend or family member with me? I am frightened that the stress and  during this time will drive me bananas and I wasn't sure if I should possibly do something else during this time. A friend who underwent a 9 hour heart operation told me under no circumstances should I stay at the hospital and that I should find things to keep me busy, like golf or as his wife did go shopping, however,  I feel like I should be there as the caregiver for my wife and that if i leave it's not the right thing to do - I would love to hear some advice from other caregivers who have undergone this stressful situation themselves.

We are lucky in that we have both sets of Grandparents nearby to help with the 2 young children and I have done some research into getting a nanny , as I think it will be too much of a struggle for the grandparents (even if they don't realise it yet).

Looking for any advice, any people can offer me please. I am remaining positive about Sonia's situation but to be honest I don't think the enormity of the situation is upon me yet and I am probably very close to breaking down point.

Sorry if this email is a little disjointed but I am hoping for some positive advice to help my family and I get through this horrible situation.

Many Thanks,

Andrew

Diagnosed 4cm acoustic neuroma 12/17/14
Tumour Removal 1/27/15
CF Leak repaired. 1/31/15
Right Facial Palsy. (diagnosed as temporary)
Tarsorrhaphy performed.
Right side deafness.
Balance improvement post op.

seh0308

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Re: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN
« Reply #1 on: January 24, 2015, 08:28:55 pm »
Hi Andrew,

I am sorry that you have to go through all of this.  I actually just had my surgery about two weeks ago- and still recovering but wanted to offer any help or support that I can through this for you.  My husband was just amazing and I know would be happy to talk with you if you wanted to.  Please just send me a PM and I would be happy to share our experience (pretty positive minus a few snags but the doctors are very hopeful!)
Stay strong and soon enough you will both be on the road to recovery!

Sarah
2.6cm AN diagnosed 12/11/2014
decreased hearing, some facial tingling, and tinnitus

ANGuy

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Re: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN
« Reply #2 on: January 24, 2015, 11:19:21 pm »
It's amazing what a couple of milligrams of diazepam can do for anxiety.  It is very "clean" in that side-effects are minimal and it is either not habit forming at all, or very low risk.  I take it for my occasional dizzy attacks as it also works for that, but it has an added benefit of really taking the worry out of all of this for the few hours that it works.  It also doesn't make me feel "stoned" if the dose is low, like 1/2 of a 5mg tab.

It's not a healthy solution for everyday issues, but you two are dealing with an extraordinary set of circumstances.  That said, the surgery is coming up very soon and you might have a hard time getting a script for it over the weekend.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Mimispree

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Re: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN
« Reply #3 on: January 25, 2015, 02:50:53 pm »
Hi Andrew:

My husband can write you about his experience waiting and worrying during my surgery, but I have a couple of suggestions to add to her bag:

1.  Ear plugs:  The hospital and ICU are not quiet places and the noise is frustrating.  She'll be trying to sleep in-between hourly disturbances from nurses and doctors, and the noise will inhibit her sleep.  If she kept her earplugs from the MRI, put them in the bag.

2.  Sleep aid:  I don't know the ramifications with breast-feeding, but Melatonin before surgery and after surgery helped me a lot.  I forgot I had packed them for the first three nights in the hospital, but I started taking them on the fourth day and they really helped.  Of course, you need to talk to your pediatrician and neurosurgeons.

3.  Water bottle:  Bring Sonia's favorite water bottle.  The medications I was on made me really thirsty and the nurses kept bring me 6 oz. styrofoam cups.  I then started asking for two at a time, then day four a new nurse said, "Why don't I get you one of our big water mugs?"  Hallelujah!  But it was too big and I had a hard time getting it to my mouth.

4.  Picture of you and the babies.

5.  This forum:  Have her get familiar with this forum.  It's extremely helpful, and I wish I checked it out before the surgery.  Only my husband did.

Personally, I wasn't able to watch a movie for a few weeks:  I just needed sleep.  After my Translab I lost my right inner ear, so hearing sounded different and took some getting used to.  Because of this, I don't know if I would want to listen to audio books.  With two babies back at home, she might need to get all of the sleep and rest she can get while in the hospital.

I would get all the help I could for the babies, you and the grandparents.  Some people do tremendously well after surgery, and some need more time and gentleness. 

My husband was really stressed, but he was always there for me.  Before the surgery, I kept saying, "You don't have to wait the whole time at the hospital.  Go to a museum or something."  I also told him that he doesn't need to see me in ICU, and I don't need him to hang-out all week in my boring hospital room.  He just let me talk and he was there every minute of the surgery and in the hospital during visiting hours.  He was right, and I would cry at night thinking I was telling him to stay away.  Be there.

Ed and I will be thinking of all of you and look forward to future posts.  This is a great place to go when you're lost.

Be well,
Michelle 
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

Mimispree

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Re: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN
« Reply #4 on: January 28, 2015, 03:47:52 pm »
I hope Sonia, you and your family are doing okay.  Our thoughts are with you.

2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

mysisterB

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Re: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN
« Reply #5 on: August 31, 2015, 08:16:05 pm »
Hi Andrew,
I hope that you, Sonia, and the babies are all doing very well 7 months post surgery.  I know there is a chance that you might not even log onto this website any longer but thought that I would take a chance being that my sister's tumor is also 4cm.  My sister has not met with her surgeon yet so there are a lot of questions swirling around in her head.  Any details about your family's experience would be greatly appreciated.  Things like how long was Sonia in ICU, how much longer did she stay in the hospital, any complications, any thing you would have done differently if you only knew beforehand, and how many weeks did it take to recover?
If you do see this post, thank you for taking the time to read it!  Best wishes!!

Sonia in Sydney

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Re: My Wife Sonia undergoing surgery on Tuesday for removal of 4cm AN
« Reply #6 on: September 17, 2015, 07:58:32 pm »
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

 
Diagnosed 4cm acoustic neuroma 12/17/14
Tumour Removal 1/27/15
CF Leak repaired. 1/31/15
Right Facial Palsy. (diagnosed as temporary)
Tarsorrhaphy performed.
Right side deafness.
Balance improvement post op.