ANA Discussion Forum

Post-Treatment => Post-Treatment => Topic started by: MT on November 10, 2018, 10:23:23 am

Title: My story: Acoustic Neuroma (AN) retrosigmoid surgery
Post by: MT on November 10, 2018, 10:23:23 am
Note: This post shows the most recent update first.

Hello all, thanks and congrats for having such an active community. I started this post as a series of questions and later developed into my recovery journal to share my experiences, just in case if it helps others.

Part 5: Last update December 6, 2019
Completed one year anniversary of RS procedure in October 2019. Updates are:

1. There is improvement in the movement on paralyzed cheek and it is stretching almost 60%.
2. Lips from the right side of face have not responded. No movement at all.
3. Still cannot cry from right eye (no tears).
4. Still cannot move forehead on the affected side.
5. HB scale reached 3 from 4 (self-assessed). I am able to close and blink affected eye like unlike before.
6. No growth so far in tumor post RS procedure. I am due for visit in Jan-21 again.

On the other hand:
a. I have purchased TENS advice for electronic stimulation (YouTube and Google have better physios than I tried here) so will be starting self-therapy after waiting a year to let things take their time to settle.
b. Life is good except a regret that I lost all bodybuilding gains :) (this is not about AN) so back to being a skinny guy.

Lastly, I guess this thread fully depicts my story so I won't be updating this thread anymore (unless something changes drastically).

if anyone has a question, please feel free to PM me. Good bye all.

Part 4: Update July 11, 2019
I am almost eight and a half months post RS procedure. Despite of all optimism and efforts to keep myself motivated I lost hope to some degree. Things changed last week (I guess on or around 7th of July) when a close look in the mirror revealed very slight movement on my right cheek. Yes, I was able to move in a controlled manner but it was very limited movement.

What have I been doing since last update?
1. Stopped doing self-exercises or self-massages about 2 months ago (e.g. disappointment phase).

2. Could not find a good therapist so didn't go for useless PTs who only suggested eletronic stimulation for 30 minutes straight.

3. Felt that my surgeon had lied to me about nerve 'not being severed' until I noticed movement which, literally, just happened itself.

My status as of today?
1. Affected eye still does not close to the full, I reckon its the same as it has been since surgery. Using artificial tears but infrequently.

2. Affected eye movement is still problematic but my guesstimate is less than before.

3. Very minor movement on cheek of paralyzed part but part of face itself is still (and mostly) paralyzed.

4. My visit to neuro is due now and will seek his advise for starting electronic stimulation including a prescription of B12 which helps recovery.
End of part 4

Part 3: Update May 6, 2019
Quick story updates:
I completed exactly the sixth month on April 26th, 2019. Things have not improved as my surgeon has been telling me.

1. Facial palsy
* Friends and relative mention major improvements in appearance of face. If I keep my mouth shut, no one can tell I have facial palsy (it is a different matter when I say, 'what's up bro?').
* Rest of the palsy is exactly the same as day 1. Smile is half-faced, right eye-lid closes only 80% or so and does not function normally in sun-light which is major pain in the buttocks.

I am considering gold (something) treatment for my eye so it closes due to weight and I am able to walk in sun normally.

2. Started vitamin B complex supplementation for 45 days, I think it helped the appearance as my friends/relatives cite. Again, I do not have any scientific findings to support my assertion.

3. I am due for another MRI in next 30 days.
End of Part 3

Part 2: Update March 22, 2019
Visited my surgeon on 26-Feb-19 being the first post-surgery MRI and consultation. 0.8 cm of tumor was there attached with nerve versus the original tumor size stated above (2.7 cm x 2.5 cm). This was not unexpected and surgeon recommended the pathway of "wait and see" that if tumor shows signs of regrowth then we will go for Gamma Knife procedure.

With regards to my face, although eye lid movement has improved very little and my right eye gets wet at times, however, it is in no way closer to natural or normal functionality. For example, in sunlight I have to use my fingers to partially pull down right eyelid or use a tape as it remains wide open regardless of Middle Eastern sunny day which hurts my vision. I am still using ointment before sleeping for protection as eyelid also does not fully close. I don't want to go for the eyelid procedure that implants gold to help eyelid closure (perhaps I am afraid that my insurance will not cover it).

Facial palsy is still there with no signs of improvement at all. My neuro-surgeon said that after 3 months of RS procedure, I should have had some chances of improvement which are not there so I should me mentally prepared to end up with permanent facial palsy but, at the same time, he said let's see until 9th or 10th month of surgery and hope that things improve. If not then he said, I can go and consider electronic stimulation and if that does not help within 2 to 3 months electro-stimulation I can go for facial reanimation which is again, not a straight forward procedure.

I insisted to neuro to prescribe vitamin B12 complex to help recover but he refused so I had to consult another doctor who agreed with my idea that B12 complex will help so he prescribed me the dose for 45 days.

In general, my life has fully returned to normalcy. I can eat and drink whatever want except a problem that there is difficulty eating foods like burgers which require wide opening of mouth (right side does not support it). I go to gym, play video games and so on all is well. No weakness, no imbalances, no dizzy-ness but all I miss is expressions on the right side of face.
End of Part 2

Those in a hurry can also watch a short-video I made here; below story gives more detail than I put in the video:

(Part 1, Nov-18) Acoustic neuroma surgery patient from Saudi Arabia

Part 1: It begins...

1. How it started?
Upon start of little hearing loss visited ENT, he removed wax and told me its all good. I was not satisfied as the I could still feel the difference in hearing from left/right ear. In coming years,  I consulted multiple ENTs but all would talk about ear wax instead of exploring reasons. In all, none told me to see a neurologist. Since I could still listen/talk on phones, etc. and never had any other symptom like loss of balance or headaches or anything of this sort, I continued for about 4 years until in May-18, I felt electric like shocks on my right canine during breakfasts. Apart from breakfast, my whole day would go perfectly normal; I mean I would eat all and everything I wanted, smile, play, do workout in gym without shock or shock-like feeling.

After first shock, I visited a dentist who also cleared me but then I decided to put Dr. Google to use. Search results led to a conclusion that I could have Trigeminal Neuralgia hence I visited a neurologist who suggested an MRI only to find that it was this tumor called Acoustic Neuroma. Neurologist suggested immediate consultation with a neurosurgeon for treatment options and cautioned me not to delay any further.

Also worthwhile to mention, my breakfast shocks stopped from happening in about 2 weeks of visiting neurologist -- so the only problems I had was mild level of hearing loss in right ear and an MRI report showing tumor.

2. Tumor size:
2.7 cm x 2.5 cm

3. Comments from final MRI taken 1 day before surgery:

4. Pre-surgery lifestyle:
I have been an active person and gym goer (natural bodybuilder). I never had balancing issues or any difficultly / trouble lifting heavy weights during exercises. All facial and eye movements were absolutely perfect. I could move my lips, cheeks, mouth, eyelids, eyebrows, etc. in any direction I wanted with perfect symmetry.

5. Advice by surgeons:
I consulted 5 different neurosurgeon to explore all treatment options but all of them were unanimous that I must go for surgery using retrosigmoid approach because of size of tumor and my general health condition. Surgeons mentioned they would remove about 60% to 90% of tumor not all to protect facial nerves.

6. Surgery details:
My surgery lasted about 8 hours then spent about 30 hours in ICU followed by recovery in hospital room. Surgeons told me that they managed to remove 90% of tumor and left rest of it as it is because of being entangled with nerve. According to them, facial nerve was preserved and surgery was a success.

7. After surgery (and condition as of writing this post):
Surgeons classified my facial palsy at Grade 3 of House-Brackmann (HB) scale but my own conclusion is that it is neither 3 nor 4 but rather something in between based on eyelid closure.

8. Recovery time as per surgeons:

Surgeons told me that:
End of Part 1

Thanks again for reading my post. Please ignore typos and grammatical errors, if any.
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: Alyssa on November 13, 2018, 09:48:19 pm
I had surgery on 9/18 with 13mm AN in UCSD.  Currently I am focusing on balance and duration. Facial weakness almost gone.

From my experience Recovery takes time and we have to be patient. I still easily get tired and see physical therapist each week.

Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: Patti on November 14, 2018, 07:52:52 am
I started with facial movement about 2 months after. Eye weight installed while in hospital. Years later had that removed. My face is "almost" normal. It took time to heal-a year at least.
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: MT on December 01, 2018, 08:50:21 am
Thank you for replies.

After 2 weeks of surgery until today, I feel sensation in the paralyzed part of face. This sensation is like lots of ants crawling over the skin and sensitivity is usually triggered by massage and increases as I continue doing it. The feelings are calmed down only when I rub the area with a wet-warm cloth.

I have my 1st post-op appointment with surgeon in 2 months time. Is it something to worry about or is a sign of recovery/nerve repair? Note that I am 1 month and 5 days since the RS surgery happened.

Please share experience.

Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: Anne Amis on December 05, 2018, 01:37:44 pm
Hello MT,
I also recently had surgery (retrosigmoid) and have found this forum to be very helpful, especially as it's showed me that everyone's recovery can be so different. I had surgery Nov 1 at MD Anderson in Houston to remove a 2.39 cm AN. I had watched and waited for four years after being diagnosed; stable for those four years and no symptoms until this past September when I had 2 mm of growth and the ENT at MDA said it was time to act. Nearly two months later, I had the surgery and they were able to remove the entire tumor, i.e. no "stickiness."

As I was prepared for, I now have a total loss of hearing in my right ear. For the first two weeks after surgery, no facial nerve problems at all -- they kept checking for that while I was in the hospital. However, the surgery triggered a monster migraine for me. I have chronic migraine as it is and have had them since I was a child. Am now 48 years old and they've only increased over time. Anyway, I was not surprised in the least that the surgery triggered a migraine and it lasted for two weeks. It was horrific - -much worse than my surgery wound pain or anything else, and I wasn't able to take my normal migraine meds as some of them are blood thinners. Anyway, once my migraine finally left two weeks post surgery, my face suddenly reacted and I was woke up one morning to find I was partially paralyzed. I couldn't raise my eyebrow, smile, blink or fully close my right eye. I was also very swollen. I contacted the brain surgeon's nurse practitioner (whom I'm mostly in contact via MDA's patient portal -- she's the one who returns my questions) and over the phone, she told me that while it was unusual that these symptoms would manifest themselves so late after surgery, it wasn't unheard of. She said that perhaps my head was "in shock" right after the surgery with the migraine. Who knows -- I found it worrying as I had thought I had dodged that bullet! But I started a regimen of steroids and now, two weeks after that, I'm nearly cleared up. I was able to stop taping my eye shut to sleep a couple of nights ago and my facial function is nearly back to normal now. On the advice of the brain surgeon, I made an appointment with an ophthalmologist to check out the corneal reflex and had that yesterday -- found everything normal.

In response to your question re the ant-like sensation, I didn't experience that or any tingling but I did stimulate my facial nerves quite a bit the first few days of the paralysis using a small rubber ball and applying it to different pressure points, which seemed to help.

I have found in this recovery period that little to nothing is what I expected and mine has not been rough...quite the contrary. I have had little pain and the migraine by far was my biggest challenge. I'm still easily fatigued and a bit "wonky" on the whole right side of my head, feel pretty unsteady at times, but I'm trying to walk 1-2 miles a day and just started driving again.  But it would have been impossible for me to know in advance what all of this would have felt like and I am finding it interesting how everyone's experience can be so different.

I also feel very fortunate that I have the ability to reach out to the team at MDA and receive replies from those working with the two surgeons that did my surgery...I emailed a few days ago to ask if it was normal to feel so wonky -- such a heaviness on the whole right side of my head -- and they ended up calling me in to see the ENT who did the surgery. They checked my ears, found no fluid, no problems, said my face was looking great, and said no, not necessarily "normal" to feel such a heaviness but perhaps it was a result of all the steroids I had just finished. And indeed, that sense of heaviness has abated a bit in the last few days.

I hope this is helpful and I hope you get some relief for your own facial nerve issues...I guess I will end with simply saying yours may take a different turn and heal in a different way. I hope your medical team can advise you as mine did! Best of luck to you.
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: MT on December 05, 2018, 02:38:30 pm
Many thanks Anne. I am very happy for you that your facial and eye functions are back to normal and hope that you are not having migraines anymore. Weakness and fatigue will probably stay 2 or  so weeks more, just take care of your diet.

I am one month and 9 days post surgery, my face is still paralyzed with no signs of improvement at all and dysfunctional eyelid is a major irritation of my daily life. While I understand that recovery is a unique and individual process, let's see how life goes.

Warm regards
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: Anne Amis on December 11, 2018, 05:47:39 am
MT, I hope and pray your facial nerve recovers and that your eye, especially, improves! Take care.
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery (sharing/seeking advice)
Post by: MT on March 22, 2019, 11:29:25 am
Hi all,

I have updated my original post with Part 2 discussing the progress. Interested may go to first post in this thread and scroll down to "Part 2: Update March 22, 2019"

Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery
Post by: MT on May 06, 2019, 01:47:33 pm
Added "Part 3: Update May 6, 2019" to my timeline in original post.
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery
Post by: MT on July 11, 2019, 11:58:57 am
Added "Part 4: Update July 11, 2019" to my timeline in original post above.
Title: Re: My story: Acoustic Neuroma (AN) retrosigmoid surgery
Post by: MT on December 06, 2019, 10:29:15 am
Added "Part 5: Last Update Dec 6, 2019" to my timeline in original post above. I won't be maintaining the thread anymore. Good bye all.