Retrosig--what to expect?

[Silver Sonnet]

Hi, all.  I'm new here, but you seem like a very friendly bunch, so I'm going to try not to be shy

I was diagnosed with NF2 7 months ago.  At that time, the cystic tumor in my right ear was about 2 cm; my MRI yesterday shows it has now grown to over 3 cm.  (Happily, the small tumor on the left ear remains unchanged).  I am scheduled for retro sigmoid surgery in 3 weeks.  I'm still on the road traveling home, so I'm not in a position to ask the doc all the questions I have, but hopefully some of you can help me out.

What, exactly, should I expect?  I understand the basic process of the surgery, but I don't know how long to expect it to take.  I'd also like to know what I can expect in the short-term recovery period.  I understand that every case is different and that no one can know for sure how my recovery will go, but could you please tell me about your recovery from this surgery?

How long after the surgery did you wake up?  Was the pain horrible?  How long after the surgery could you lift your head, sit up, walk to the bathroom, etc.?  What about reading and/or using the computer?  (I'm afraid I'll be terribly bored; am I crazy?) When did you go home, and what condition were you in?  Were you able to handle the basics of living--no lifting, of course?  How long before you could cook, wash dishes, etc.?  How long before you could drive? I'm especially worried about these at-home issues because my husband had a hemorrhagic stroke three years ago and can't drive or do much with hot stoves and the like.

I'm not scared (yet) of the surgery, but the more I know, the better I do, so please tell me your retrosig stories!

[KBL]

Hi, I'm new to the ANA, but it seems everyone's story is very different.  My tumor, being huge at 5.6 CM came with an 8 hour surgery.  I had fluid built up in my head so they had a tube draining the fluid.  As a result I was in ICU from Friday until Tuesday morning. I remember they had me on my feet the next day.   I was unable to walk unassisted.  It was Sunday before they had me using the toilet.  From the ICU they moved me directly into the hospitals rehab facility, there I spent the next 9 days regaining some of my balance and getting stronger.  The surgery left my eyesight with nystagmus.  I and read now and use the computer.  I could not read and while in the hospital I had no interest in TV. 
I woke up in the evening after surgery.  I did not have any pain.   The car ride home was exhausting. (15-20 minutes)  For me it was too much information coming into my brain.  I was getting cereal in the morning right away.  In rehab they had me make a meal.  I did great but it left me exhausted.  Surgery was 17 months ago.  I am not driving because my wonky head. 
We belong to a wonderful church and we had people bringing us meals every other day for about a month.  If you are able make sure to clean your house really well before surgery and maybe freeze some meals.  Please remember, the size of my tumor was HUGE.  They could not take the entire tumor because it was pressing on my brainstem and spinal cord.  I had to have cyberknife 4 months after surgery to try to make sure it will not grow anymore.  At my last MRI, there was still a 28x18x8mm tumor. 
The thing I was most worried about before hand was pain.  For me there was NONE!!!!  I hope all goes well with you. 

[sgerrard]

The old rule on this forum, regarding recovery from surgery, is that the first three days don't count. Sometimes you can wake up feeling like you got hit by a bus, but that is no indication of how your recovery will go. I would guess that typically people go home a week later. At first you take it easy, and day by day you can do more.

Quite a few people are at the Symposium in Cincinnati now, so responses may be a bit slower. Also we don't have as many NF2 members. But some others should come along and let you know what their surgery was like.

Best wishes!

Steve

[mk]

Hi,

I had retrosigmoid about 6 weeks ago. My surgery was about 10 hours, for a 3.2 cm AN. Like Steve said, the first 3 days don't count. I think the worse for me was the effect of the anesthesia. It took me 2 days to recover from the vomiting from this and to be able to eat. During the first 2 days I felt that I couldn't keep my eyes open. They kept me in ICU for 2 nights, to make sure that I was able to keep food down.
They made me sit up on the bed on the day after the surgery, but that didn't go extremely well. However I was able to walk around by the 4th day, and I never experienced significant balance problems. I was told that balance problems post surgery depend on how much vestibular function you have left. I had a vestibular test before the surgery, and I already had 90% weakness, which means that the other side had compensated entirely.
Overall I had an excellent recovery - was up and going for walks outside at one week post-op. I still have some problems with pain on the back on my head, but overall I function pretty much normal. I am not back to work though, which I think is really helpful because I have plenty of time to rest.
Don't hesitate to ask as many questions as you want, there is a wealth of experience here, and every case is different.

Marianna

[Jim Scott]

I'm not scared (yet) of the surgery, but the more I know, the better I do, so please tell me your retrosig stories!

Hi ~

Welcome!  I'll attempt to answer your questions but of course my answers will be based on my experience and not necessarily applicable to another AN surgery patient, although I think it's safe to make generalizations to some extent. 

In June, 2006 I underwent AN 'debulking' surgery via the 'retrosigmoid approach'.  The surgery took approximately 9 hours.   I regained consciousness within 30 minutes after the surgery.  My head was wrapped in a bandage that was uncomfortable...hot and too tight.  My head felt a bit sore on the side where it was cut but nothing I needed pain medication to address.  I vividly recall feeling extremely fatigued and sleeping a lot the first day or two following the surgery.  I think the expression 'I felt like a truck hit me' would have applied.  By Day 3 (following the surgery) I was bored.  Daytime TV is awful.  Fortunately, I was able to sit up for an hour a couple of times a day (in a recliner next to my hospital bed).  I begged my doctor to remove the headwrap bandage on Day 3.  Thankfully, he complied.  By Day 4 I was sitting up more than I was in the bed and walking the hospital hallways, assisted by my wife, who was a great help to me.  I was not interested in food until Day 3.  I was discharged on the morning of Day 5, after proving to a rehabilitation nurse (a Supervisor, no less) that my balance was sufficient to keep me from falling.   As for bladder and bowel issues: I had a catheter that was removed on Day 3 and my bladder functioned normally.  I did not have a BM while in the hospital but took a laxative (recommended  by a nurse) when I got home and all was well.  I've always been 'regular' and that quickly resumed.  At home, I spent a lot of the first week in my recliner, reading and watching TV.  The fatigue lingered so I took naps, something I normally would never do.    As usual, boredom set in and I began getting out of the house by having my wife drive us to a nearby park and taking one and two-mile walks with her on a daily basis.  We also tossed a small beach ball around to help me with my balance.  On my second week home, I had a VNA PT nurse help me with some balance exercises.  After 5 sessions (over 10 days), she said that my balance was progressing just fine and that I no longer need her services.   I continued the walks in the park and also ventured into the mall and other venues, trying to resume my normal activities.  All went well.  Two weeks after my surgery, 9 days after my hospital discharge, I asked my neurosurgeon (he had decades of experience doing AN surgery) if I might resume driving.  He said that, considering the rapid pace of my recovery, I could.  My doctor also kept warning me not to 'overdo it'.  I drove us home; a 30-mile trip on the interstate as well as some secondary roads.  No problem.   In a sense, I never looked back.  However, it took approximately two weeks (post-op) to do anything that required much 'physical' effort, but I was 63, retired and although relatively fit for my age, I wasn't athletic in any real sense of the word.  I assume that someone younger would be able to do more.  Within a month of my surgery, I was pretty well back to normal.  I remember playing miniature golf with my wife and son that summer.  I was gung-ho to be outside and active in any way that I could.  I was determined to 'get my life back' - and I did.     

The only post-op issue that lingered was that my head was sore where it had been operated on.  I was unable to sleep on that side (my left) for almost a year.  I had a very slight wound infection that cleared up quickly with a few applications of bacitracin.  That's about it.

My biggest caution is to be sure that the doctor doing the surgery is very experienced with this intense and demanding operation.  My neurosurgeon and his assistant, another neurosurgeon, were.  Aside from lots of prayers, I credit them for a very successful retrosigmoid surgery experience.  I hope this is somewhat helpful and that your experience is similarly positive.

Jim

[leapyrtwins]

We are a friendly bunch 

I had retrosigmoid surgery approximately 4 years ago.  AN surgery isn't pretty - it was my first (and hopefully last) major surgery - and while my neurotologist tried to prepare me for how intense things might be the first few days post op I didn't believe him    Jim's statement about the truck was definitely something I experienced - along with the room spinning around me the first time I put my legs over the side of the bed.  I told my doc I hadn't seen the room spin like that since the last time I was good and drunk years ago in college.  And the end result was the same; I tossed my cookies. 

By now I'm sure you can tell I'm not one of the shy ones on the Forum 

The good news is that each and every day post op I got better.  Some days it was one step forward and two steps back, but I did make steady progress and I think most patients do.  Patience is key to recovery and sometimes I found it very hard to have; I'm just not a patient person!  And although the first few days of recovery are rough, I've never regretted my decision to have surgery; nor would I not choose it again if (God forbid) I had regrowth.

Everyone's recovery is different, but most docs will quote you 6 weeks for recovery.  Some recover faster; some slower.  Some post op "issues" might be with you longer than 6 weeks.  I remember my balance was much improved 6 weeks post op, but it kept getting better for months. 

My hospital stay was one of the longer ones - 6 nights, 7 days, I think - but I had massive nausea, didn't eat, and I failed to get out of bed and walk during the time frame the docs would have liked; so I was a little "behind".  It's important to note though that lots of people don't experience nausea post op.

I also had double-vision for a day or two post op, which some have and some don't have, so I didn't read at all in the hospital.  Much of my time was spent sleeping - it's amazing how much fatigue is associated with surgery - and watching the occasional TV show w/one eye closed (to offset the double vision). 

As for pain, I didn't have any except for a stiff neck from being in a strange position (neck bent at a weird angle) for 7 1/2 hours of surgery.

I was slow to drive - took 6 weeks - but I didn't really need to drive any sooner; family members stayed w/me and my kids so we had a built-in chauffeur.  Some people - like Jim - started driving much sooner.

I returned to work part-time (desk job) 2 1/2 weeks post op and full time 4 weeks post op.  I wasn't 100% by then, but I was able to do my job without any issues.  My biggest problem was fatigue. 

Household chores are kind of a no-no for a period of time depending on their intensity, so listen to your body and don't overdo it.  You'll also find that the fatigue will keep you from your normal routine for a while.  I remember coming home from the hospital, climbing the stairs to the 2nd floor of my house, taking a shower, and then having to nap    My best advice along these lines is don't refuse any offers of help - whether that's house cleaning, a home-cooked meal, or a ride to the doctor's office.  Most people you know will be more than willing to help you, so don't hesitate to take them up on their offers; that's not an easy thing for most of us to do, I know.

Jim mentioned a catheter in his post (standard procedure); ask your doc to make sure it's inserted AFTER you are anesthetized.  Removal is pretty quick and easy; insertion isn't always.

Best,

Jan

[Silver Sonnet]

Wow--thank you!  This is EXACTLY the kind of information I wanted!  I love ya'll already!  And your responses make me feel even better than I already did about all of this.

The hard part for me has been trying to make decisions when I don't really know all the details: I'm not a neurosurgeon!  No one I've been able to find here at home in Mississippi is competent in this surgery, but I spoke to three different doctors--Dr. Brachmaann at House Ear, Dr. Dody at Stanford, and Dr. Asthagiri at the National Institutes of Health (NIH), and each of them originally made vastly different recommendations.  Now, though, with the tumor (the cyst, actually) growing so rapidly, the decision is out of my hands.  I have to have surgery, and I have to have it soon, and the more I know about what to expect, the easier all this is for me.

I strongly believe that attitude has a huge impact on outcome, so I'm working to surround myself with the most positive people I can find, and this place is just full of positive!  Thank you again, and please keep posting your experiences

[Raven]

Here is my little story,

I'm also NF2, a couple days before my first surgery, I woke up and could hardly hear in my good hearing ear (I had already lost all hearing in the left ear). We did not have a plan for the good side as we wanted to take care of the left side first, so we proceeded with the left side surgery and eight days later we did the other side. I had little to no pain, my nurse in ICU gave me half of her sandwich and a 1/2 pint of milk, so I actually had something to eat in ICU. The next day I was moved to a regular room and was able to get up and walk into the bathroom and sit in a chair all on my own. The next day I was walking the hallways but I did have to hold on to the railings, two days later I was sent home. The original plan was to keep me there to do the second surgery but I recovered so well they sent me home, a few days later I came in for round 2. I spent 28 hours in recovery because there was no vacancy's in ICU, then I went to a regular room. In my opinion I think the sooner you get up and move around the better you will feel and they will ship you out. When I got home, it was a steady diet of rest, eating and walking........then repeat. My final out come is ringing in both ears, no hearing on the left side and my balance is terrible (everything in the background looks like it's bouncing when I walk). I never had any headaches, pulling the catheter out was about the only pain I had.

For now I'm in W & W for the right side tumor, getting another MRI in September. If there is no growth I'm going to see about getting a cochlear implant for the left side.

Good luck to you SS.......keep us posted.

Maybe we need to have a roll call to see how many on here have NF2, inquiry minds want to know.

John

[Silver Sonnet]

Wow--two brain surgeries in 8 days!  Just wow! 

This place makes be feel so much better.  I've even decided what I'm going to do if I have facial paralysis:  I'm going to make a bandage out of a pantyhose leg and wrap it around my head--might as well go all the way, right?

I spoke with my surgical coordinator at NIH this morning, and she said the doc expects my surgery to be less than eight hours. If I could go do it right now, I would.  I live in Mississippi, and I'm having the surgery in Maryland, so the doc plans to keep me 10 days to two weeks to be very sure everything is ok.  Mississippi is not well known for the quality of its nonsurgical practitioners, and he doesn't want me to go home and develop problems.  Good idea, I think, but it means I won't have a great "I got out of the hospital fast" story when I get back.  But I'll try to have something good to tell ya'll

And John, I think that's a great idea.  I know I'm curious about how many of us have this "rare" disease.

[Jeff]

Hello,

I am Jeff, and answering the roll call for NF2. I was diagnosed in 2002 and have had 5 brain surgeries.
Each was a different experience. My first surgery was retrosig. I had never had surgery before that, or even spent a night in the hospital. That said, I was more tired afterward than I had imagined to be possible. I am by nature a limit-pusher, and recovered fairly quickly after the surgery. As others have mentioned, I felt pretty lousy (nausea, fatigue) for a while afterward.

I am 2nd generation NF2, so unfortunately, this condition doesn't seem rare to my family.


Please feel free to ask questions or contact me privately if you prefer.

Best regards,

Jeff