6 days post op - Retro Sig update

[jeninla]

Hi everyone!

I really loved the idea that this forum is a way for us to pay it forward and share our experiences to help with the anxiety and the stress of having AN.  I've never posted before but used the forum extensively to understand the consequences and decisions that I was making.  I am 39 and was diagnosed 3 weeks ago with a 2.0cm AN and I had my surgery this past Tuesday at House with the amazing Slattery, Schwartz, Stefan team.  I discovered the AN after going to many doctors and to at least 2 neurologists who finally ordered a MRI.  It was difficult to detect because I didn't have the usual symptoms.  I had perfect hearing on both sides (both on hearing test and ABR), no facial issues, only weird thing was a numbness to my chin.  The location of my AN was tucked in a way that made Retro Sig a good option as well as the fact that I can hear so well.  Schwartz gave me 33% chance for preserving hearing.  Slattery raised it to 60% after the ABR came back so well.  They gave me 90% of no permanent facial weakness.  After reading what everyone has said about House, I felt like these are as good of odds as I can get.

I opted for the surgery quickly because it is in my personality to want to start dealing with the outcome instead of waiting to see if it will grow any further.  It is also true that the better the hearing you have prior to the surgery helps the chances of  preserving hearing. 

I went in on Tuesday at 5:45am.  My surgery lasted 11 HOURS!!!  My family was so worried since they were a bit quiet about informing the family in the last few hours.  They said that my neuroma was a bit bloody so they were taking their time.  But the good news is that it was completely removed and both my hearing and facial nerves are intact!  In fact they were able to get ABR reading even right after the surgery which is promising.

Wednesday to Friday - I was in the ICU the entire time.  This is longer than usual.  They wanted to really drain my spinal fluid so that I won't have a leak since my AN was a bit wet and messy.  Frankly those few days were the most miserable experiences of my life just feeling completely nauseous and want to vomit as soon as I open my eyes.  I can barely remember those days...just people making me feel better with drugs and my family kissing my head so I know they are there.  By Friday, they also removed the bandage around my head.  On Friday, one amazing thing that really helped my psyche was when the nurse gave me a sponge bath and cleaned my hair.  As small as that was, it made me felt so much more human. 

Saturday - I was finally transferred to the floor in a private room.  I can now open my eyes and not throw up and even managed to drink some soup.  By night, I was walking around the floor but felt nauseous afterwards.  I tried to keep my pain and nausea medicine to a minimal.  I just didn't like how it totally knocks me out.  I don't want to feel like I need to constantly take something to feel better.  Also, some of the nausea medicine gave me the craziest hallucinations.  I kept trying to convince my friends and family that the wall is moving.  I even tried to take a video of it.    Nevertheless, I really didn't want to feel so out of it so I try to only to take the drugs that I can take orally rather than intravenously. (though only after I was out of the ICU)

Sunday (today) - By the morning, I was antsy to leave.  I somehow feel like the hospital is not the best place to be to make further improvement on my overall health.  I told everyone I wanted to leave and they seemed to be pretty positive about it.  I came home today and spent time with my family, husband, and 1 year old son.  The journey has been tremendous and I'm grateful for my results.  Now I'm taking it one day at a time and hope for a full recovery.

Questions:  I hope some of the veterans can help with a few questions:

While I can hear out of the AN ear, even listened to cellphone messages just to check if I can hear, I still feel fullness only in the surgery half of my head.  The docs said that sometimes during surgery there is some liquid that gets into the middle ear canal and it feel likes an ear infection so everything is ringing and vibrating loudly.  They said that should go away in a few weeks.  Anyone else have that issue?  and did it clear up?

CSF leak - I know that they took extra precaution to make sure that I don't have a leak.  But every time I feel a weird taste in my mouth I'm wondering if I have a leak.  Is it true that if you have a leak, it will be VERY obvious?  What should I watch for?

Thank you all for listening and I hope I can be of help for others in the future.

Best,
Jeninla

[MG]

Hi Jeninla,
Thank you for sharing your experience with all of us. I am glad it was a success with your hearing and facial nerves! I am on W&W so I have no answers for you but just wanted to wish you a speedy recovery.

Take care, MG

[LakeErie]

Sometimes the irrigation to clear the area following surgery can cause fluid in the ear canal or even drain into the nose which sometimes appears to be a CSF leak. It does subside with time.
I had a bad CSF leak that took weeks to resolve on its own, but it did resolve. It was a nasal leak. Most CSF leaks are into the wound and often resolve with conservative measures.
A strange, especially metallic taste, is common after surgery and not necessarily evidence of a CSF leak. It generally resolves on its own over long periods of time, and even if it doesn't go away, we usually get accustomed to it and notice it less and less.
For some people recovery is bumpy because some complications are delayed because of the steroids given after surgery. Once the steroids taper, nerves can swell and/or inflame and more problems are apparent than immediately after discharge from the hospital. This happens oftern enough that people should be more aware of it in case it does happen.
Good luck.

[jeninla]

LakeErie,

Thank you for that. So helpful to know that not every symptom could be a spinal/nasal drip.  I called House today and they told me to see if it becomes a serious drip before I get too concerned.  I think now that since I'm no longer in the hospital I'm extra conscious of every symptom I'm feeling.  Did you or anyone else suffered soreness in your leg muscles after surgery?  I had my veins checked 2 days ago and it was clear but my opposite leg from my AN still feels so sore and a bit numb.  I'm assuming from the 11 hour surgery  I'm one week post op, should I be concerned? 

Thank you MG for the good wishes.  Yesterday I came home happy and ready to move on but I think today just wore me down a bit and realized that I need to take this one day at a time.

Jen

[CS]

Hi Jeninla,

Thank you for your post-treatment post!

I am also 39yo (soon to be 40!) and will also have Retrosigmoid surgery in a next few months and your post was very encouraging to me.
You endure the 11 hours of surgery and I', glad to hear that your recovery is going well.

[jeninla]

Hi CS,

I'm happy to have given you some perspective on my experience.  Where will you be doing your surgery?  Are you considering House?  I felt like the best decision for me was to put my health in the hands of the best surgeon and they really took care of me well.  Every nurse, doc, surgeon there has at least 4 or 5 AN patients that they are operating or monitoring each week.  It feels comforting that they know exactly what to do in case of any emergency.

I'm exactly one week post op now and back at home.  Mornings are tough with waning meds and nights are restless since I'm still on steroids.  But I"m staying positive and hope this feeling of being submerged in water in half of my head will go away soon.  But make sure you line up help when you are back home…My mom has been amazing through this.

Please let me know if I can help answer anything.

Jenny

[LakeErie]

Jeninla, If you have a nasal CSF leak, you will not have to wonder if you do. Bend your head down and see if any clear liquid drips out. If it does you have a leak. Your nostril may leak even when you are upright. Is there a discharge on your pillow when sleeping? That is also evidence of a leak. It is not like  runny nose with a cold. It is a real drip.
I can't speak to the leg muscles, as my surgery was minimally invasive and 95% to 97% of my tumor was out in under 3 hours so I was nowhere near 11 hours in surgery.
Good luck.

[CS]

Hi Jenny,

I'll have my surgery at UCSD. I just saw another doctor yesterday who is the head of Neck and Skull Base surgery. He and neurosurgeon will work as a team.
Thought I don't have serviceable hearing left, he told me that he will try to save my hearing nerve if he can so I can possibly have Cochlear implant later if I decide or my good ear become deaf with some other problem. That was very comforting.

He also kept MRI and is having neurologist check my tumor as he thought my tumor looked little different from AN and thought possibility of meningioma.  They will let me know the finding and if it's AN, they'll call me back for the surgery date.

I'm glad to hear your surgery went well and sounds like you are doing great for the recovery. Do you have any balance issue after surgery?

Oh by the way, how much hair did you shave?  How are you handling washing hairs?

[jeninla]

CS,

The past two days I have been having the WORST balance and nausea problems.  I had no symptoms other than numbness to my chin prior to the surgery so my original balance nerve wasn't too compromised.  I think as the steroids wane off, my body wasn't ready to cope  I was just sick all day in bed.  The first day I just thought it was a fluke and today I called them and they put me back on another week of waning steroids.  Now I can finally get out of bed again. 

I can email you an image of my scar if you want.  Probably took a couple of inches around the ear.  I have long hair so mostly covers it.  I think it might look weird when once the shaved area grows longer.  I sit next to the sink and lean sideways so my mom can wash my hair without getting the wound wet.  But after monday when the stitches are out, then I could do it on my own.

Having people help with preparing food for you is so important.  I am very petite (5'3, 105 lbs) so every drug effects me a lot.  Make sure you eat all the time to tame your stomach.  I couldn't eat anything the past week but soup and veggies.  Carbs gave me bad acid especially being on the steroids. 

 

[Joe_L]

I also had some soreness in my right leg, opposite my AN, which started after my 6/23 translab surgery.  I think it is slowly subsiding. Sensing temperature a little differently on that side also.

[jeninla]

Hi all,

I just wanted to give everyone an update since I returned from the hospital.  I had a few issues that I was worried about and now that I am 3 weeks post surgery some of it has resolved itself or I have found solutions for them that I wanted to share.

Second week post op:
Intense nausea - The first half of the week was actually ok because I had steroids which helped with the nausea, but by the end of the week when I had to wane off of the steroids, I was sick.  I couldn't get out of bed being so nauseous.  I called House, they prescribed me another week of steroids to give my body more time to adjust.  Also gave me more anti nausea meds, Zofran, which I only took for intense nausea.  Actually, it only took 3-4 more days when my body was ready to give up the steroids.  Now the nausea is light and very tolerable. 

Hearing - My head still felt very stuffed and my hearing was diminishing.  By end of the first week at home (that was a very tough week for me), I could't hear much out of my AN ear.  I know because when I was in the hospital, I tried listening to my cellphone message to see if I can hear and I could.  But 1 week later, I couldn't, which terrified me. 

Nose drip - I was feeling like something was draining into my lungs and not sure what it was.  I didn't have a constant drip, and it was very slight.  I talked to House about it and they thought it might be surgical fluid draining.  But I would wake up every morning with a severe cough and felt like liquid in my lungs.

Third week post op:

First post op exam - I finally got my stitches out!  Excited to wash my hair again.  Dr Slattery gave me some advice about my nose drip.  He thought it might be allergies and told me to take benedryl.  I do have allergies every morning prior to the surgery.  For some reason, after the surgery it doesn't make me sneeze but just drains directly into my lungs.  I'm happy to say that after taking Benedryl, it went away!!!  I felt so much better after that.  Dr. Slattery also sent me home with some vestibular exercises to help with nausea.

Nerve pain - As soon as I stopped feeling nausea, I started getting these sharp nerve pain to my ear.  They are so intense, makes me shiver and cringe every time.  It would happen every 10 secs all day long.  I was so frustrated that finally I got reprieve from the nausea, something else starts.  It was the first time I broke down crying.  I know this is a long road to recovery, but I was hoping for a break.  Tylenol was doing nothing for the pain.  I was in bed for 2 days with this throbbing pain.  I read on the forum that some people took Motrin for their pain so I got some of it.  And it works!  Immediately the pain would stop for the 4 hours Motrin is working.  However, I had other tension headache which seems like Tylenol resolved the best.  Apparently Tylenol and Motrin works on different types of pain and you can take them at the same time just not over the dosage each allowed.  Now my pain is manageable and I can actually do things and feel somewhat more "normal" again.

Hearing - The docs at House told me that the nerve pain is due to nerves regrowing and stimulating.  Somehow once the pain started, my hearing is coming back better and better every day.  I can hear cellphones message, and the stuffiness in my head is getting better too. 

So that's it.  While it sounds horrible at times, it is actually a positive progress.  I just didn't think it would be so hard.  Anyway, I wanted to share this because if I was more mentally prepared and know that it will get better, I would feel better through the process.

Jeninla

[MG]

Hi! I hope day by day your recovery will improve for you Jeninla ! Thanks for your post. Keep the faith and take good care!

MG