1 Week Post-Op - My Story

[Troutbc]

Hi everyone! I wanted to share my story, as I just had a 2.8cm right side AN removed 8 days ago at MGH in Boston. My neurosurgeon was Dr. Barker and my ENT was Dr. McKenna. They are absolutely amazing and I would recommend them to everyone on the east coast. I want to give as much as detail as possible without being too wordy- just want to help out others out there who are looking for info and want to hear a recent story.

I am 26 years old and starting having pretty intense dizzy spells back in December 2014. I also had light sensitivity, nausea, numb hands, and a lot of just weird, weird symptoms that couldn't be explained- i was even missing work many days a week. It took 3 months to get a brain MRI because my neuro work-up was normal so they originally didn't see a need. I finally got the MRI and the tumor was found on Friday, February 13- what a day- of 2015. Of course I was scared out of my mind. I'm getting married in less than 6 months and this was the last thing i needed to worry about- a tumor in my head. Many tear-filled and fear-filled nights, a lot of anger, and a lot of "why me's."  But then it hit me- this is real, my symptoms are miserable and debilitating, and I need to get this fixed and over with if I want to live my life again.

I did my research and called many many references. I met with Dartmouth Hitchcock in Lebanon, NH (Dr. Saunders) who is a great surgeon and they do 20-25 AN surgeries a year. I met with Brigham and Women's in Boston (Dr. Daniel Lee and Dr. Ian Dunn) who do about 50 a year and were also so incredible. Then I met with MGH (Barker and McKenna) who were referred to me by everyone. I was told their volume is closer to 90 AN surgeries a year, and their surgery-associated risks were much lower than the other hospitals. (5% facial weakness vs. 15%, for example). I picked MGH and waited 5 weeks for surgery- all hospitals told me the same thing- i needed surgery and would likely lose my hearing. Again- completely scared out of my mind. Would I be able to succeed at work being SSD? Hear my band play music at my own wedding? Go to bars with my friends?  Completely, utterly, frightened, and terrified. But again, the reality is I didn't have a choice.

Surgery day arrived and I was at the hospital at 5:30am. I had written a letter to myself beforehand and gave it to my mom to give me after surgery- telling myself that it's all going to be OK, remember how miserable you were, and give yourself time to recover. I said goodbye to my family around 6:30am and got prepped for surgery. MGH has the NICEST most friendly doctors, residents and  nurses. So so so impressed. I saw the OR, and the next thing I remember is waking up in the ICU. My tumor had been blocking flow of CSF and pooling in my ventricles so the neurosurgeon inserted an EVD (drain coming out of my head) during surgery which ended up staying in for 4 days. When I woke up i was very nauseous (vomiting unfortunately), had a very stiff neck, A LOT of soreness despite pain meds, and just felt HORRIBLE. Terrible terrible headaches but they think that was from the EVD.  I was so worried about actual surgery that I forgot to think about how I'd feel afterwards! But the ICU was AMAZING. THE BEST NURSES, tons of back rubs, ice packs, and ice chips. When I first woke up, I couldn't see. I opened my eyes and the world was all tilted, spinny, and I couldn't focus. In fact I don't think I opened my eyes for almost 16 hours after surgery because it was so scary. But luckily, that went away pretty quickly (by the next day) and I could actually see my nurses the next day and make eye contact!!

2 days after surgery they got me out of bed and up to a chair. All I have to say is- WOAH.. No balance whatsoever. A very active 26 year old athlete couldn't even stand up. In fact, I fainted within seconds of being upright. But the next day I tried again. Then the next day I did a walking lap with the walker, then without the walker,and then a flight of stairs. I was in the hospital for 6 days total but that was mostly due to the EVD. It's amazing how each day I am getting better and better. but let me tell you, it's NOT EASY. Recovery is HARD. I still don't get much more than 3-4 hours of sleep at a time due to discomfort, but I know I will getter. I'm doing my home exercises, doing short walks a few times a day (like 100 steps) and I start PT next week. Just gotta keep pushing! 8 days post op and I am mainly just dealing with fatigue, neck stiffness, and some incision soreness. OH...and a horrible taste in  my mouth. It's like a horrible salty metallic dry mouth. I hear that goes away too.  I barely notice the SSD- which I am thrilled about. My number 1 focus is to just start feeling good again, and then I can worry about my ear. In a household environment even with a TV on, I can hear everything. I do have SLIGHT facial weakness- my right eyebrow won't go up too high but it's not very noticeable and it will heal. The dizziness is very prevalent but I can already tell my body is adjusting- and I haven't even started PT!! I'm really trying to stay as positive as possible and just focus on healing. That's all you can do. I do have my parents and fiance helping me move around at home, which helps a ton. I don't think I could be doing this myself, if I'm honest.

I hope this helps some of you who are dealing with an AN diagnosis. Please reach out if you have questions, it was so helpful for me to have a contact that I wrote to to ask questions. It's amazing how your body can heal and I know that within a few weeks, though I'll never be the same, I will probably be able to be out shopping and socializing and exercising again. After 8 days I think I would consider this a success story. Just the fact that I made it through surgery, made it home, and have been up and about on my own a little more each day is amazing to me. It is certainly not fun, but we will heal!! Again- I am nowhere near healed.  I am very much still in discomfort, but it GETS BETTER! Please reach out if you need some words of wisdom.

Thanks!

[LakeErie]

Congratulations on completing your surgery. Just a couple quick points, the taste disturbances, especially the metallic, are common and improve with time. The facial weakness will improve as well. I had both and my facial movement is now House-Brackmann I and my taste is almost back to normal. Recovery can take time and periodic rest. Listen to your body and you will do fine. Good luck.

[Troutbc]

Thanks for the tips! I think I wrote my recap post too soon. The day I wrote that was also the day that my steroid dose ended to help with the nerve regeneration/swelling. Woke up the next day and boom... Facial Weakness on the AN side. My smile was crooked and my eye wasn't tearing- it just felt very very weak- it was depressing. I don't think this was a coincidence that It happened within 12 hours of going off the steroid! The surgeons said the facial nerve was in great shape during and after surgery, so they told me to just go to the ER to be seen, get a CT (which was clean), and from there they now have me on another 2 week course of the steroid. After now being on it for about 24 hours my face is less weak than yesterday, but still has a ways to go. Such a bummer because I was doing SO well with recovery!

The prognosis is that in 1-2 weeks my face should move somewhat normally again as it was right after surgery. Here's to hoping. Would love to hear if other people had similar delayed-onset facial weakness and how it was dealt with/when it cleared up.

[hasovschib]

Hello, i had the same problem as you with the facial weakness. After the surgery i had no problems with my face, everything was working like before, my eye was a little dry but my smile was not crooked, i could raise my eyebrows, no facial issues whatsoever.
2 weeks after my surgery things changed, my left side was stiff (not very stiff) my smile was crooked, my left eyebrow would not reach the same height as the other one, my eye was not closing properly.
i called the doc and he said that some ppl experience this late facial weakness but it will pass in a few weeks.
I did facial exercises 2 times a day after that and guess what, it's been 8 weeks since my surgery and my face is as good as new.
From what i heard if you had no problems with your face right after surgery you dont have to worry about permanent facial weakness.
Hope this helps

[are21]

Hi, this is my first post.... I am 15 days post op.  I had a 2.8 cm right AN removed.  I just wanted to share the fact that I had the same facial paralysis start 1 week after the surgery.  My face was fine for the first week after surgery.  When I came off the steroids the right side of my face drooped.  They kept me on 1 steroid pill a day for another week after that happened.  Now I am 2 weeks out and my face is just starting to get a little better....  I do see some improvement in my smile and I am feeling fluttering in the area around my eye.  My doctor did assure me this would be temporary so I am trying to be patient.  Aside from this issue, I am doing amazingly well.....  no dizziness at all, no balance issues (but I really didn't have any before the surgery).   All things considered, I feel very fortunate.

[LakeErie]

Delayed complications are common once the steroids taper off. Nerves take a long time to recover. If you had facial movement after surgery it is a good sign you will eventually regain that movement after a delayed weakness or paralysis. Recovery from AN surgery requires patience more than anything else in my experience. Good luck to all of you who are beginning your recoveries/

[Troutbc]

Thanks for the replies guys!

Are21- sounds like we have a very similar story!! Glad to hear you are doing well too. We got this!! I'm starting to feel so good that I sometimes forget about the facial weakness- until I start laughing and then get self conscious and cover my face- haha. Just trying to keep a sense of humor. Glad to hear the steroids are slowly working for you. Some days the dizziness is worse than others but I think that is also reflective of the post surgery fatigue. I am Only 11 days out after all... And they say it takes 4-6 weeks!!

[mar]

I'm 27 and I had a larger tumor removed, somewhere between 4.5 and 4.7 cm at the major diameter. I don't know exactly. This was very shocking when it was diagnosed because I only had minor hearing loss on the affected side. I didn't have balance, taste, or facial function issues. After the surgery I was unable to move the right side of my face. I still can't move the right side of my face, but I am less than ten weeks out.

I am out of physical therapy and my balance is normal but I find I'm clumsier than I used to be. I also used to be a lot stronger; this weekend I bought a 40lb bucket of cat litter and really struggled to carry it into the house. I used to be able to lift three times as much with less effort than that stupid bucket! I noticed you're in Boston - so hopefully the weather will be kinder during your recovery than mine. I was effectively snowed in for about three weeks. I was going stir crazy, but when you're dealing with balance stuff the last thing you want is to go out into planet Hoth.

My surgeon was happy with my progress in March. I have facial symmetry and can close my eye all the way with concerted effort. I am using the vaseline eye drops, protective eye wear, and prisms.

Also with you being so soon out and with your age, you are probably waiting on NF2 results? I got mine after about four weeks; my geneticist said about a third of positive results are mosaic. In a lot of ways I'm really lucky, but I have to admit I'm envious that some of you still have facial function. That's been really rough to deal with.

[Troutbc]

Mar-

Thanks for the reply. It really is amazing the support we can get on this site just by listening to others' stories. I am getting frustrated because I had really been doing well which is why I wrote  my initial post, and then I had the setback with the delayed facial weakness (which should be clearing up in the next few weeks according to the doctor), and then was feeling great again  and then last night I had 3-4 clear drops of something from my nose. I assumed it was a CSF leak but we called the doctor and and they think it's a little late for that (12 days out) especially considering I had a drain put in for 5 days after surgery. Since it wasn't a continuous drip and it only happened once I didn't have to go back to the ER- thank god- but it was  just another depressing thing to worry about - ugh!! I just need to be patient and realize this is going to take weeks and not days. One good day does not mean I am better!! Some days my incision soreness is gone,
The next day it's back. Man this sucks!!

As you say- I am waiting on NF2 results. My appt is April 28. That is adding to my newfound "depression" of not having consistently good days anymore. After surgery I was told the entire tumor was removed, but upon discharge my neuro said they found two other small lesions (1/5 the size of a grain of rice) on the swallowing nerve that they need to test. He said he finds things like this in 24/26 surgeries and that it is usually just residual pieces of the  original tumor, but that it needs to be tested. My left (non AN) side is completely clear, and there is no family history so I am just praying that I will be fine. We will see!
I am shocked at the size did your tumor- isn't it wild how large they can grow before noticing symptoms? I feel like all of us ANers should move to our own planet and deal with our crooked faces together, get free massages 3x a day, eat whatever the hell we want to get that salty dry mouth gone, and just not have to worry about anything- haha!!

[mar]

I think you're doing well. You're online, so you're reading ok, and I hope you get back to your old self and that no one will know about your neuroma unless you want them to. I hope that for everyone reading this.

Sorry to hear about the NF2 stuff. My otolaryngologist was telling me that he sees patients as young as 8 presenting with these tumors. I'm in my late 20s, by comparison, and even though I am positive, I'm mosaic. Fingers crossed for you as well! I have an appointment with my geneticist tomorrow, I hope that goes well.

As far as the surgery and its recovery, don't be so hard on yourself. The anesthesia alone needed to put you down for 12 hours takes a toll on your system. It's also common for people who are dizzy to want to move as little as possible. You wouldn't expect to drink yourself into a blackout and wake up, alert as ever. It's just going to take a bit of time. Personally, I was about four weeks out until I even felt like my old self, between the pain medication, my fatigue, and balance issues. I felt like a failure for getting exhausted from a walk around the block. I hope you don't put yourself through that.

I was surprised by the size of my AN at the time, but I was reading up on it and the larger tumors typically don't present with the same set of symptoms (otherwise I would have been to the doctor years ago).

Free massages sound good to me! I went through so many Snack Packs my first two weeks because everything else tasted like musty pennies. 

[LakeErie]

Troutbc - my balance issues and feeling like my head was moving when it wasn't persisted for exactly seven months after surgery - seven months to the day. My other complications took over a year to recover and to some extent I am still recovering incrementally three and a half years later. Admittedly my tumor was almost 5 cm and I had significant brains stem and cerebellum mass effect. I think it is under appreciated how much of recovery is based on our brains returning to normal positioning once the tumor is removed. Also tumors can stretch and thin cranial nerves that are then in different positions. 

[are21]

Troutbc - yes, sounds like we have very similar stories and time line also.  I started really getting symptomatic mid Dec.  Fullness in my ear and numbness on the right side of my face from my chin up to my ear.  Lost a lot of hearing but I didn't realize it.... I am a lefty and use the phone on my left side etc, so never fully realized at first.  After seeing a few other doctors I was referred to an ENT on..... Friday, Feb. 13th.... after seeing me and doing a hearing test, he suspected I had an A.N.  Had an mri Feb. 18 but by that time I had done so much research the results didn't shock me.  I had my surgery in NYC on March 30th.  I think I was much more mentally prepared for the surgery and less for the aftermath.  Last week was difficult..... I could not sleep more than 2 hours at a time at night which was frustrating to me and to my husband who is pretty much burning the candle at both ends lately.....  Still not sleeping great but at least I got 6 hours last night.  I am very self conscious about my face even though this week it seems to be a bit better.  I walked today for about 30 minutes and I am walking much slower than usual and it is more tiring but not too bad.  No balance or dizziness issues.  I wish everyone going through this a speedy recovery!  it's nice to be able to share with other going through the same thing. 

[Troutbc]

Hey guys! So when do the fatigue spells end?? I had two great days in a row- was doing my exercises, been going for two .5mile walks a day, am up and about the house, designing my wedding invitations, socializing with my family, sleeping great, etc, and then boom today it's like a train hit me and I can't keep my eyes open! I know I'm only two weeks out of surgery but I'm curious if these major up and downs happened to you guys too. Feeling great then BOOM out of nowhere I need my bed for a few hours. Should I start feeling consistently more energized in a few weeks?

Also an update... Since going back on the steroid my facial movement has every so slightly improved. Still crooked smile but it's better than a week ago when it set in! Trying to be patient.

As always thanks for the input.

[hasovschib]

This happened to me as well after surgery, some days i felt ok some days i felt like crap(most of them like crap ). i did take lots of meds tho(sometimes they can cause drowsiness )
2 weeks after my surgery i was a mess, now   im 8 weeks after my surgery and i progressed greatly:  started exercising with light weights   , running short distances, my balance has improved greatly, starting to get used to the ideea of being deaf in one ear. 
Thing will get better week after week, you will see, everything will get better, your fatigue, your balance, your smile

[ANGuy]

This happened to me as well after surgery, some days i felt ok some days i felt like crap(most of them like crap ). i did take lots of meds tho(sometimes they can cause drowsiness )
2 weeks after my surgery i was a mess, now   im 8 weeks after my surgery and i progressed greatly:  started exercising with light weights   , running short distances, my balance has improved greatly, starting to get used to the ideea of being deaf in one ear. 
Thing will get better week after week, you will see, everything will get better, your fatigue, your balance, your smile

Thanks for articulating that so well.  As someone who is WW, but will probably end up getting treatment some day, your post is very helpful.