position to sleep in

[Mathilda]

Hello forum members,

I'm new here. Have been reading your stories a couple of times and decided to jump aboard.
I've been diagnosed roughly two years ago. At the time the AN was about 7mm. After one year it had grown just a tiny little bit, but the last MRI showed a 4mm increase. Up till then I was OK to wait and watch but soon after this last MRI I decided to do something about it. Got information thru my son in law from a US neuroradiologist who advised against radiation and to get in touch with House Ear Clinic if I decided to go ahead with surgery.

So now I'm getting myself ready for the trip to LA (we live in the Netherlands) and for surgery on the 16th of October. Two of our daughters live in the States: one in Texas and one in Idaho and they will both come over a day before the surgery to be close to us. Even my 20 month old granddaughter will come. Yippee !  It will definitely help me see the brighter side of life.

I have a question:  after surgery, do you have to sleep on your back for quite a while or is it OK to lie on the opposite side of where the AN was taken out ?

My daughters are wondering when I will come around and when we can have kind of a normal conversation again?  I told them I am not sure I would be ready for any kind of conversation for the first couple of days. It seems to me a conversation could feel like an invasion in an already unstable brain. What do you think ?

I will probably come up with some more questions later and would really appreciate it if one of you would take the time to reply. Thanks

Oh by the way:  is the Seton guest center suitable for little ones ?  I understand they have a living room and dining room in the building apart from the guest rooms ?

[leapyrtwins]

Hi, Mathilda - glad you joined us 

After surgery, you will probably have a huge mastoid bandage wrapped around your head.  The largest part of mine was on the left side since my AN was on the left.

It's fairly hard to get comfortable with the bandage since it's bulky, but I was able to sleep on my back - that is, when the nurses and docs weren't coming into my room to check my vitals    I probably could have slept on my right side, but I didn't because I would have had my back to the door which I personally find uncomfortable.

You'll be able to have a normal conversation once the anesthesia wears off.  But you might not remember all of the conversations you have initially since anesthesia leaves you kind of "foggy".  You'll also be very tired for a period of time so long conversations probably won't be the norm.  I was in surgery for 7 1/2 hours and the fatigue afterwords was beyond description.

I found that the things that were most affected by my surgery immediately post op were my eyesight (double-vision) and my balance.  I was also nauseaus for quite a while and dog-tired.

Everyone is different and it's hard to tell you just what exactly to expect.  My best advice is, take things as they come.  You'll get through this.  The biggest thing you can do is have patience - not easy, but necessary 

Jan

[Captain Deb]

Hi Mathilda and welcome to the forum,
Seton does have a common area and St Vincents Hospital has a cafeteria and dining area.  I'm sure your little granddaughter would be welcome at both.

I hate sleeping on my back, but after surgery I really didn't mind how I slept for a while--they medicate you up pretty heavily to make sure you sleep anyway--believe me you won't mind or even remember! They come in and turn you in the ICU onto your side just to keep the blood flowing. Most folks at House spend the first 24 hrs in the ICU.  After day 4 they remove the pressure bandage and they you can pretty much begin sleeping on your non- surgical side if you want. After day 5 you get sprung and go to Seton.

I was pretty much talking a blue streak at day 4 and had family and visitors, but up until that point was pretty much feeling like I had been run over by a Mack Truck! (That's American for a very large Semi Tractor Trailer)

We'll be thinking of you,

Capt Deb

[JerseyGirl2]

Mathilda,

Welcome to this forum! I didn't find it until about six months after my AN surgery, but have been so very impressed with the people who post here -- you'll learn an amazing amount of information and, of at least equal importance, will be quite inspired by the courage, insight, and resourcefulness of those patients who've had to deal with a variety of issues, some temporary and some of longer duration.

I had my AN surgery at House/St. Vincent's Medical Center just this past January (2008); I think you'll be pleased with your decision to go there ... although as you can see from this forum there are many, many other surgeons and hospitals who are true champions in the AN universe as well. If you're not familiar with southern CA, I hope you'll have enough time in Los Angeles prior to your surgery to take in some sightseeing -- there's a lot to see and do out there, and I found it to be a wonderful distraction from the upcoming hospitalization!

Following my surgery (I had the translab procedure) I was very comfortable sleeping on my non-AN side as well as on my back. As Jan mentioned in the previous post, you should be able to have a normal conversation once the anesthesia has worn off. I don't remember talking that much during the 24 hours in ICU following the surgery -- other than constantly asking for ice chips! I had instructed my husband to ask me some semi-complicated questions as soon as he saw me in recovery so that we would know if my brain had survived; he swears he asked me some and that I answered them, but I don't remember! You should certainly be able to enjoy some visiting once you're in your regular hospital room (all the rooms at St. Vincent's are singles, by the way); you will want to sleep a lot, too -- since, as Jan mentioned, you will be experiencing major bouts of fatigue. I was fortunate not to have experienced any visual, facial, or balance problems following my surgery, but as you can see from the forum postings, there's a broad range of post-surgical responses. I found the nursing staff to be very helpful and responsive, and you can rest assured that they'll do their best to keep you as comfortable as possible.

We were quite happy with Seton Guest Center -- it's not luxurious by any means, but it's more than adequate and reassuringly close to both the hospital and House Ear Clinic! Each floor has a "commons room" -- sort of a living room/dining room combination; the guest rooms have a small seating area and kitchenette as well, so there should be enough room for your granddaughter to roam around! You'll have access to the hospital cafeteria while at Seton, and you can either eat in the cafeteria or bring your food back to Seton. We thought the food was good (certainly by institutional standards!) -- lots of fresh fruits and vegetables when we were there in January.

You didn't mention it, but I'll comment on what will be a long plane trip back home for you --- assuming that you're not planning on a long convalescence here in the U.S. I live on the East Coast (New Jersey) and flew back home without any problem ten days following my surgery. House won't let you fly before you're ready ... but I think the 10 day timeframe is fairly common .... and I remember that a couple of patients flew home from there even sooner.

Very best wishes as your surgery approaches! You will be in absolutely wonderful hands and will receive excellent care.

Catherine (JerseyGirl 2)

[Mathilda]

Jan, Deb and Catherine, thank you so much for your reply ! Even though I don't know you, I feel you women care !
And thanks also to everybody else for their input.

It's wonderful to hear from people who have gone through the same ordeal. I must say though that I feel pretty calm about the whole thing. Searched and found information on the web to the point that it doesn't scare me anymore. Have the impression that I found some excellent doctors to treat me and so now I just have to "hand myself over" to their expertise and hope for the best. There's not a lot more I can do myself. Apart maybe from trying to get enough rest. The past two weeks I've specifically made it an issue to eat well, to exercise regularly and to relax as much as possible; even though I already have a healthy lifestyle I want to make sure I do everything I can in order to get through the surgery as well as possible.
It is great to see that most of the good people on the forum are quite positive in their attitude. Since my hearing is still good I'm fervently hoping it will stay that way because I love music, but at the same time I realise that even when deaf in one ear a good quality life is still possible.

PS  It's good to read about practical stuff as well, such as what to bring to the hospital.

[JerseyGirl2]

Mathilda,

You definitely have the right attitude as you approach your surgery date!!!! I think most people experience that sense of calm after they've done their research and made their decision. And you're correct -- it's important to hope for the best and to acknowledge our doctors' expertise and trust them to do the right thing. I certainly hope you'll maintain your good level of hearing ... but you're also very correct in your realization that SSD (single-side deafness) doesn't mean the end to an excellent quality of life. There are at least a couple of devices available -- BAHA and Trans-Ear -- that are very helpful to those of us in the SSD community. I hope you won't have to pursue either one, but if you do, there's a wealth of information about them on this forum.

Keep on relaxing, eating well, and exercising. You're going to do just fine.

Catherine (JerseyGirl 2)

[leapyrtwins]

Mathilda -

it's good to know you already have a sense of calm going into your surgery.  I had it too and I attribute it to just placing myself in the very competent hands of two doctors whom I had complete and utter trust and confidence in.  It definitely made things less stressful for me.

As for hearing and music, like Catherine mentioned, there's always the BAHA and the TransEar if you find you are having problems adjusting to being SSD.  But even before I had my BAHA, I found a wonderful mono-plug that I use on my iPod.  It gives me stereo sound out of one ear plug.  It was extremely inexpensive (okay, downright cheap) and it does the trick very nicely 

Jan

[MAlegant]

Hi Mathilde,
Welcome to the forum. Along with others, I am sending good thoughts your way.  From what I understand you are going to one of the best places to have your surgery so you should feel confident and calm.  As for the sleep question, I had a hard time with sleep for a week or so post-op.  Mostly it was neck pain, so muscle relaxants did the trick.  I've only recently been sleeping on my AN side, and not consciously.  So sleeping positions have all gotten back to normal.  You will know what feels right to you.

Best,
Marci

[cindyj]

Hi Mathilda!

I don't have any sleeping position advice as I haven't had my sugery yet, but I just wanted to welcome you and say hello - I will be out in LA for my surgery with Dr. Friedman from House right after you.  In fact I may be flying in just as you are flying out!  Cheri (cwood) on the forum is heading out there tomorrow for her surgery with Dr. Friedman. 

Keep asking questions - someone here will, no doubt, have an answers for you!  I wish you the best out there and hope you'll keep us posted about things!

Cindy

[NL]

Hi Mathilda,

Just joining in to welcome you to the forum. I had a retrosigmoid surgery at House Clinic/St. Vincent's just over 7 weeks ago, so my sleeping position was slightly different than yours will be due to the approach. The bulky part of my bandage was behind my ear, but I still managed to sleep both on my back and the non-AN side while in the hospital.

It's great that you're feeling calm about everything. Your comment about "handing yourself over" to your doctor's expertise is exactly how I felt on the morning of my surgery - it was a huge relief! And your plan to eat well and exercise regularly leading up to your surgery will be a big help as your body recovers. I took the same approach, and felt very relaxed going into surgery knowing I was in the best shape I'd been in for quite some time. 

As you think of more questions along the way - you'll most likely find someone here who has an answer!

Good luck and keep us posted!

Nancy

[Mathilda]

Hello again,

Thank you ladies for your kind comments. It's highly appreciated.
My husband and I will be flying to LA on the 10th (11 days from now). Dr. Slattery and Dr. Schwartz will perform the surgery on the 16th.
Cindy, we will fly back on the 6th of November, 3 weeks after the procedure. However during the last week we will be staying at a different place than the Seton so I don't suppose we'll have a chance to meet.
Here in the Netherlands there is also a hospital which has a specialised skull base team but the chances in LA are quite a bit better. LA 20% chance of SSD and here 50%. And because my hearing now is still good (though bothered by tinnitus) I wanted the best chances.

Some more questions:

How big is "the hole" usually for middle fossa surgery and how do they close it (I've heard something about belly fat  -they can take out more than they need; I'll be happy to donate some - and about wire  ) 

When do the stitches come out - I suppose before they send you home ?

When is it safe to assume there will be no more complications. I mean the first couple of days are likely critical; but for instance when are they quite sure there will be no more possibilities of fluid leaks or things like that.
 

[Captain Deb]

Dr Friedman sent me an actual medical illustration of the surgical procedure and the hole looks to be about two inches across. The actual surgery is done using a surgical microscope!  You'll even see it when whey wheel you into the OR. It's really cool.  They use the actual skull flap to close it and insert two small titanium plates to secure it.  The fat is used to fill the gap left where they resection the tumor.  Don't quote me on any of this, I'm no doctor!

You end up with a question mark shaped scar that goes from your temple to the top of your ear and the stitches come out about 12 days later.  Most people spring leaks within a few days, but it can happen even weeks or months later, but that is rare.   Remember, you are in very good hands at House! If You want to see what your incision will look like I'll post a photo of mine on this thread. Some people are squeamish and don't want to see it and I don't want to freak you out so I thought I'd ask first!

Capt Deb

[Mathilda]

Sure Deb, I'd like to see it and be somewhat prepared for the near future.

Mathilda

[cindyj]

Capt Deb!  Hello!  I'm up for the photo also...is the fat only needed in middle fossa approach?  Suppose I should already know that, but...

Mathilda, I just sent you a PM...

Cindy

[JerseyGirl2]

Mathilda -- your question about when it's safe to assume you won't have further complications (e.g., CSF leak, etc.) is a good one to ask your surgeons during your pre-op consultations. The surgeons at House (and I'm quite sure this is true of most, if not all, of the other surgeons used by forum posters) will spend a good bit of time with you prior to your surgery (and they'll also come to check on you each day you're in the hospital!) and will be able to give you their best answers based on lots of experience!

Cindy, you asked if fat were "only needed in middle fossa approach" -- you're having the translab procedure, so you'll also get to have some "belly fat" removed. It's no big deal -- a relatively small incision on your left side (so that it won't be mistaken for an appendectomy scar later on) and, sad to say, only a very small amount of fat is removed to place in your head! And, yes, everyone asks the surgeon to please take out as much fat as possible while they're at it. And the surgeons will laugh along with you and reply that "everyone always asks that!"

Catherine (JerseyGirl2)