Retro Sig Questions

[lmsinwnc]

Hi all,

So I finally saw one specialist this past week (longest 2.5 weeks of my life!), and we will see another this Wednesday (Hopkins) and waiting on a call from a third (House). The surgeon last week said he prefers to do TL on my size tumor (3 cm). However I pleaded my case with him and he understood my concerns about SSD in my AN ear, then he told me I could chose either option. 

My concern is this: I don't have a "good" ear.  I have only 2 bad ears.  I have hearing loss and wear hearing aids in both ears. (well until sound deteriorated so badly in the AN ear). My loss in both ears is in low and mid tones. I hit the audio gram charts between 45-60db (moderate and bordering severe already) in my good ear! So I come into this fun place with significant pre-surgery loss in my non AN ear. Word recognition in AN ear is 20%, so comprehension in that ear is shot, but actually hearing sound is comparable to the right ear.  He was/is willing to do the RS approach because of my hearing loss.  My thinking is that crappy hearing out of both ears is better than crappy hearing out of only one. And I may potentially keep some spatial awareness on the AN side if I can keep any hearing over there.

Anyway, he assures me that the RS approach leaves a portion of the tumor behind.  He says you just can't get all the way into the bony canal to clean out the whole tumor with this approach. I am asking if other RS Aners were told the same thing. Does RS surgery almost guarantee leaving tumor behind??  Maybe it is just the way my particular tumor has grown, but I just hadn't "learned" anything about that in any of my research, so thought I could check in here.

Next I wonder if any RS patients can tell me how they have fared with tinnitus on the AN ear post op.  I do already have tinnitus, but mostly manage to ignore it - mostly.  It changes often, so then I have new adjustments and occasionally it rages! I'm wondering what reports are post op on this. Seems raging tinnitus is a given in TL surgeries.

Lastly I wonder how many RS post op "hearing" people can still hear 6 months, 1 year, 5, 10 years down the road, etc. 
Just looking for some feedback in general on RS. 

The surgeon I see next week seems to generally prefer the RS approach, even in larger tumors.  He did a webinar on the AN site last year, so that's kind of nice to know a little more about him going into the consult.  Ultimately if I choose RS over TL, I would probably want someone who "prefers" that approach over another. And I know past performance on anyone does not guarantee future results.   

Thanks for any/all help and participation in this informal survey!

Lisa

[caryawilson]

I had my 17+ hour surgery for my 4.5 cm tumor at Hopkins. Due to the size, I had ample complications but I have an excellent quality of life, one year later. However to address questions:

1. Hopkins does a modified RS based on the location of the tumor. This is the keyhole method.

2. I had Dr. Lim. He was amazing. Dr. Tamargo is the other surgeons that does the main AN surgeries.

3. Headaches. I never had headaches. Dr. Lim explained headaches are normally due to an imbalance in the nech muscles since they normally detach the neck muscle on the AN side during the surgery. So I swam after surgery to strengthen the muscle. No issues.

4. Normally, the otolaryngologist will open the skull and clean the auditory canal. They should be able to get the tumor. Dr. Lim should definitely answer but this will be done by one of the 7 surgeons from Dr. Kerry's team.

5. I feel your pain on your potential hearing loss, but be careful to understand which nerves are under stress by the AN. My nerves 5-12 were under signican stress so I was luck to lose only nerve 7 and 8.

6. Tinnitus. I did not have prior to surgery. I have this now. Real loud. Like you, I have been able to ignore it, and even during sleep, I can ignore and I sleep great. Honestly, I haven't seen any magic fix to tinnitus.

Really great experience. Family was well taken care during my stay and local hotels have a Hopkins discount.

Best wishes.

[lmsinwnc]

1. Hopkins does a modified RS based on the location of the tumor. This is the keyhole method.
I don't really understand what this means, guess I will have to wait and see. I believe you said in another post that your "keyhole" was about 5cm, which is pretty big for a keyhole! 

2. I had Dr. Lim. He was amazing. Dr. Tamargo is the other surgeons that does the main AN surgeries.
Scheduled to see Tamargo

3. Headaches. I never had headaches. Dr. Lim explained headaches are normally due to an imbalance in the nech muscles since they normally detach the neck muscle on the AN side during the surgery. So I swam after surgery to strengthen the muscle. No issues.
Well this is honestly the first bit of encouraging news I've had! I am a swimmer now, so it is great to know I maybe able to swim afterwards and that it might even be helpful for me - assuming I am a candidate for this surgery.

4. Normally, the otolaryngologist will open the skull and clean the auditory canal. They should be able to get the tumor. Dr. Lim should definitely answer but this will be done by one of the 7 surgeons from Dr. Kerry's team.
So how did you learn about this information?? Did you ask these specific questions during your consultation? I guess since I haven't been yet, I have not heard of Dr. Kerry or any of his team. Neither have I heard anything about the otolaryngologist being involved from either of my past 3 consults... But again it sounds encouraging. It seems that the surgeons in general just tell you what they are going to or would do and don't go into many details...
Sadly I heard from Dr. Schwartz last night. He seemed to feel the same way that RS would require leaving a portion of tumor in canal. Probably just due to the size of my tumor and way it is growing.  And in much worse turn of events, he indicates that he sees something in my right ear on my MRI. I will have to ask someone else to take a look at it again.  Hoping I can mention this to Dr. Tamargo during our consult. Nevertheless this is a devastating blow... so I am very grateful to read any encouragement this morning.

5. I feel your pain on your potential hearing loss, but be careful to understand which nerves are under stress by the AN. My nerves 5-12 were under signican stress so I was luck to lose only nerve 7 and 8.
I gather this is not something they can determine until they get in there?

6. Tinnitus. I did not have prior to surgery. I have this now. Real loud. Like you, I have been able to ignore it, and even during sleep, I can ignore and I sleep great. Honestly, I haven't seen any magic fix to tinnitus.

Really great experience. Family was well taken care during my stay and local hotels have a Hopkins discount.
Glad to hear this. Would be very good for my husband. We also have family and friends in the area, who can be there to support him should we choose to go this route. 

Best wishes.

Caryawilson,

Thank you again for your replies!  I am delighted to hear that one year later you feel very good and have excellent quality of life, especially after such a long surgery and so many complications!

Lisa

[NEbluebells]

Lisa, when I visited the Dr. Gantz' team at U of IA, they also led me to believe that the RS approach has a higher chance of leaving tumor material behind, but I think it is because of how my tumor was growing.  They pulled up my MRI and showed me the path of where a RS cut would enter into my skull and the path it would take to get to the tumor, the RS surgeon would have literally had to make a 90 degree turn into some kind of cavity (not sure what it was exactly) to get to the end of the tumor.

[caryawilson]

Lisa,

Any update? I'm interested in hearing Hopkins thoughts and which Doctor you met?

Cary

[gahanorama]

I had retro sig at House a couple of months ago and feel completely back to normal already. They preserved almost totally the hearing I had left in the AN ear. My AN was half the size at 1.5cm. No headaches at all.

They are definitely worth talking to.

[Cheryl R]

I have had mid fossa and TL on one side but am writing to just say that my tinnitus was no different past the TL which also was twice due to CSF leak.  No big increase in it than what had been past mid fossa.           I think the tinnitus can vary with each person no matter what type of surgery it was.    I am NF2 so have had surgery on both sides and 3 tumors total with it being noisy for me on both sides but never super bad.   Maybe a bit worse when tired but mostly ignored.   I get all kinds of noises too.          I like the violins I get on the left every so often.      Hearing the tv in the basement is annoying as there is no tv down there.    LOL!                       I will add my leak was not a usual one as there was a new cheaper colloidal product they were using to help hold thing in place and 3 of us had leaks so went back to the more expensive product.                                          Cheryl R

[lmsinwnc]

I sort of wish this forum had a way to advise you when someone has replied to your post.... I didn't see them last time I looked, so sorry for delayed response.

@nebluebells, you have been much on my mind. Praying your surgery went well and hoping to hear from you soon.

@caryawilson, I saw dr. Tamargo at Hopkins and I have nothing good to say about it. Unfortunately we found him to be insulting, rude and definitely planning to do additional surgeries for facial nerve damage. Time will tell if I end up with it, but he was assuring us of it... So much so, that I actually felt it necessary to ask him if he would try to save the nerve or damage to it! I understand that it is not his fault that I have this tumor and to some extent he is just the bearer of bad news, but he gave no hope at all of any potential positive outcomes, except to remove the tumor. All but guaranteed,  hearing gone and count on additional surgeries, although he does not do trans lab approach. He insisted that I already knew I had/have facial nerve damage, because I look in the mirror every day.  I assure you, I know no such thing. I have tingling in my face, but so far as I can tell, no drooping and control of muscles.  It was just too much....

We had already consulted with Dr. Schwartz at House, as well, so I called them again. Dr. Brackmann actually and asked their opinion of Tamargo's opinion.  They respectfully disagree about assurance of facial nerve damage. They feel more optimistic that they would not have to destroy it and that my tingling is caused by the trigenimial nerve. There is a concern about having to leave tumor behind here again to protect the nerve, but if they cannot protect the nerve they can repair it during the same surgery....

So as is typical I guess there are no guarantees anywhere you go for this thing, except the guarantee of losing my hearing in the AN ear. I know this is hard for everyone, but I just don't have normal/good hearing in my other ear and I am having such a hard time accepting this. 

So, we have decided to go to House Clinic for surgery. I actually have surgery scheduled for May 23. There was a cancellation in the schedule, so jumped inTo it. Cary, I am glad all things worked out well for you with your surgery and treatments at Hopkins. I/we just needed more hope going into our decision.

@CherylR - I am saddened to say, that I may be one of the lucky few as well. Docs at House (&cardiologist) all see something in my right ear as well.  Very small right now, less than 3mm and not certain, but they advise a spinal mri as well.  I have tried my best to worry about it now, but 4 different docs assure me, it doesn't change the way they treat the big one! And they tell me not to worry about it for now.  Ha!
Anyway thx for sharing about the tinnitus not changing much. That is hopeful and encouraging. And in this place, hopeful and encouraging is a real gift. I cannot now imagine having surgery more than once on one ear, or having it in both ears... but thanks to this forum and those who are willing to share their stories here, I can "see" that even when the bad things happen, there are many options to help us all go on living somewhat normal and happy lives. And that also gives me hope! Now if I can just get to accepting/believing that there will be a new normal and happy in my life too....

Lisa

[caryawilson]

Best of luck Lisa. I've heard nothing but good reviews on House so I'm sure you are in good hands.

As for me, I had really low expectations. All the surgeons I met (house, Miami, Hopkins, Stanford) believed I had a strong possibility of being on a feeding tube after surgery.. So all complications NOT including a feeding tube, were a big relief.

[lmsinwnc]

Oh wow, Cary... So glad then that that didn't happen. And yes, I can say that after that visit at Hopkins, I found myself glad to be  maybe "only losing my hearing." It certainly changed my perspective. However I am now back in the throes of doubt and misgivings as my surgery date nears. 

Thank you and thanks for sharing your story. This forum really is an incredible resource. I am very thankful for it.

[LakeErie]

I had a modified retrosig in Oct 2011. My facial nerve was so thinned at one point that a remnant of tumor was left on the nerve. I had facial weakness for 2 weeks and returned to normal, I was House Brackmann II after surgery so not so bad.
I had facial tingling pre-op and still do but am used to it now.
There is always a risk of nerve damage, but even with my almost 5 cm tumor my surgeon put facial paralysis at 15%. If you are going to House, your risk will be low. Good luck

[caryawilson]

Sorry Lisa. I noticed one question from you about how I knew which nerves, iny case 5-12 were under stress. This started to become apparent on my MRI. My first MRI showed the tumor as a menigiona and didn't have the details. As I had follow-up MRIs as Hopkins the radiologist provided more details in the report and the the surgeons spent more time reading the MRI. They had a pretty good idea, that the surgery was going to be challenging. The other hospitals came to a similar conclusion but the initial MRI did not have all the details in the report. This was known before I went into surgery. The main issue duringy surgery was the vascularity ofy tumor so this created many challenges.

At this point, if your are going to House, you are in the best hands. I don't see how you could have made a better decision.

One item I wish I had done prior to my surgery was to start to discuss with doctors on how I would treat the most popular complications: eye issues and facial paralysis.

As I'm sure you have read on this site. Eye issues are one key concern with a weekend facial nerve. You should be ready with a cornea specialist and eye plastic surgeon. Most things they can do are simple but will make a huge difference if you are having problems with you eye. Honestly.. Really simple, but if it's not treated then eye pain becomes debilitating. Gold eye weight to help eye close, lower eye lid tightening, tear duct plugs, Restasis. All simple.

If the facial nerve is removed the you need to consider facial reanimation. This was coordinated by the brain surgeon, for me, and started nerve graphs withiny first week of surgery. Actually, this is the good / bad of losing your facial nerve. If it is removed they can start nerve grafts immediately. If it is weaken, the process is to wait up until two years.  I'm really happy with my results.

I don't know which facial plastic surgeons works with house but I'm sure he is amazing. I would ask. If you get complications, then your husband will need to work with the doctors to plan your next steps. It's good for him to be educated before hand.

Prayers for you and your family.

[researcher]

Hi! Sorry to hear about the AN and the possible other AN. Hope you get some resolution.

Regarding the tinnitus. I had tinnitus in the AN ear and after retrosigmoid surgery the tinnitus is about double the previous volume. I do not know if a sliver of tumor was left behind.

I woke up from surgery SSD. Before surgery I had decent hearing in the AN ear. So this is my one data point.

I wish you well on your journey.