Author Topic: New AN in Alabama  (Read 5298 times)

fizzysuz

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New AN in Alabama
« on: November 14, 2012, 10:09:41 pm »
Hi all,

I woke up about 6 weeks ago with ringing and hearing loss in my right ear. A visit to a local ENT verified the hearing loss and an MRI a week later confirmed the AN diagnosis. A visit to Dr. McGrew, an otologist, @ UAB's Kirklin Clinic a few weeks ago re-confirmed the AN diagnosis.

My MRI report states it is 4x5x8mm AN in the right inner auditory canal that protrudes slightly into the CP angle cistern. I am not having any balance issues or dizziness. I have partial hearing loss in my right ear (everything sounds like it is coming from a distant, blown speaker) but my biggest problem is the tinnitus. When I first went to the ENT there was some question if this was a Sudden Sensorineural Hearing Loss or hearing loss due to an AN so he did a steroid perfusion in that ear along with a 2 week course of oral steroids. Neither of those helped much of anything (it did help my plantar fasciitis pain go away in my left foot) and the perfusion was quite uncomfortable.

On a side note: my mother and her father also had AN on their right side. My great grandfather was also became deaf in his right ear in his mid 40s. Everyone tells me this is not a genetic condition since I'm not showing signs of having NF2. I'm not too sure that I believe the non-genetic thing 100%. My mother had surgery in 1985 which left her with a >75% hearing loss and permanent facial nerve damage. She goes for an MRI annually and her AN is growing back. I think it was > 2cm when it was originally found and now measures about 5mm. My grandfather's was diagnosed right before he died in 1988 so there was never any talk of treatment.

I'm not too sure what to think after my trip to see Dr. McGrew. My ENT said that he thought the mid-fossa approach would be the surgical option presented to me but that due to the size and placement of the tumor, radiation would probably be a better treatment. However, Dr. McGrew doesn't seem to be a radiation fan. He tells me that there is a greater risk of hearing loss with radiation and there is a good chance of facial nerve damage - some of which may not immediately present itself. He also cites that I'm young (today is my 40th birthday) and radiation does not remove the tumor, only kills it (hopefully) and once it's been radiated, it will probably grow back and then surgery is more dangerous if it can be done at all. He says that his recommendation would be the retrosigmoid approach which would allow them to get right to the tumor site and probably retain what hearing I have and more than likely do little to no damage to my facial nerve.

For now, I've decided to wait 6 months, have another MRI, go see Dr. Fisher (the neurosurgeon who Dr. McGrew works with) and also see Dr. McGrew again and make some decisions then.

In addition to the usual concerns regarding surgery, here are my big concerns:
I only have one brain and it's kinda necessary for me to function.
I have a 2 year old.
I am the primary wage-earner for my family.
I develop keloid/hypertrophic scars (you should see my "little" gallbladder surgery sites!).
I didn't really want to breathe when they tried to wake me up after my gallbladder surgery.
I watched my mother struggle and be very sick after her AN surgery.

I'm really not able to travel too far away for MD appointments and eventually treatment due to family and work constraints. My husband does not have FMLA right now and I don't have much left for this year. My local radiology clinic does not put the MRI that I had done on CD. They gave me films which the Kirklin clinic folks kept.

I've done tons of reading and research but would love any input you guys have. When I talk to my mom about this, she gets upset and tells me that she didn't have a choice to have her surgery. Her tumor was making her life unbearable. I can tell that it really bothers her that I'm going through this and she would never wish all her problems on anyone else, especially her daughter. I'm sure once this all sinks in, she'll be a great resource, but not right now.

Thanks in advance,
~suzie

alabamajane

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Re: New AN in Alabama
« Reply #1 on: November 15, 2012, 11:49:08 am »
Hi Suzie,
As you can see,, I am in AL also. . I had my surgery last Oct, 2011, at UAB with Dr McGrew and Dr Winfield Fisher, both excellent Drs. in my opinion. I did have translab so I am SSD, single side deaf, but knew it going in. I was watch and wait for  three years before deciding on surgery. Mine was larger than yours at initial diagnosis but I waited all the same...it also had protuded  into CPA and then pushed onto brainstem,, causing symptoms to really worsen in those three yrs....

Yours is probably, and I am not a Dr., small enough that you have time to research other opinions. If you have been on the forum much looking around you will see recommendations for several medical centers that will offer free medical advice IF you can get your MRI on CD format to send them . I did send mine to House clinic in LA even though I had no intention of going that far,, as you say, some of us have personal reasons not to leave the state or especially not very far.

In my own opinion, UAB was excellent in every way and I will be glad to discuss any questions you have if you want to PM me feel free.. I know you are nervous, we all were, and to have your Mother as a "postie" as we call them,, will eventually be helpful no doubt.. I am sure she is devastated at this point... it is hard for us to deal with but also our loved ones,,, especially if you have been through it I imagine..

I would ask for a consult with Dr Fisher at Kirklin as he is the neurosurgeon Dr. McGrew would work with and see what he says and how you "like" him.. he is very nice, knowledgeable and will spend whatever time you need talking. . I have seen him about 4 times since surgery. My annual MRI came back clear, so I am "free" for another year...... yeah!

Good luck to you, I am sure others on here will chime in, but I wanted you to know there are others in AL that have stayed here for surgery so you don't have to travel necessarily... we have a support group in Lower AL and a leader that is on the willing to talk list,, call her or PM or e:mail me and I will give you any other info you may need.. good luck,,,, sorry you have been diagnosed with something none of us wanted,, but we have all dealt with it in our own ways and you will too... Jane

P.S. I don't know for sure who the radiation Dr would be at UAB as that was not an option for me, however, you could look and see and talk with them too if surgery is not what you want... I don't necessarily agree with all the Dr McGrew told you about radiation and I guarantee you others will chime in that the info was not entirely accurate,, Drs. tend to recommend what their specialties are,,,,, and yours seems small enough for radiation option.. although location of tumor is just as important as size when dealing with treatment options.. but that is a non-medical call there... ;)
Will be anxious to hear how things go for you... take a deep breath and try not to stress over it too much,, it's serious, and overwhelming, but not "the end of the world..."......feel free to ask all you want,, we are here to offer non-medical advice and experiences...
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

arizonajack

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Re: New AN in Alabama
« Reply #2 on: November 15, 2012, 07:53:51 pm »
Hi all,

I woke up about 6 weeks ago with ringing and hearing loss in my right ear. A visit to a local ENT verified the hearing loss and an MRI a week later confirmed the AN diagnosis. A visit to Dr. McGrew, an otologist, @ UAB's Kirklin Clinic a few weeks ago re-confirmed the AN diagnosis.

My MRI report states it is 4x5x8mm AN in the right inner auditory canal that protrudes slightly into the CP angle cistern. I am not having any balance issues or dizziness. I have partial hearing loss in my right ear (everything sounds like it is coming from a distant, blown speaker) but my biggest problem is the tinnitus. When I first went to the ENT there was some question if this was a Sudden Sensorineural Hearing Loss or hearing loss due to an AN so he did a steroid perfusion in that ear along with a 2 week course of oral steroids. Neither of those helped much of anything (it did help my plantar fasciitis pain go away in my left foot) and the perfusion was quite uncomfortable.

Wow. Your history almost parallels mine (except for the plantar fascitis pain - I didn't have that, but I do have balance issues).

I had the sudden loss of hearing on the right side (tinny, far away sounds) last December (ah, distinctly, I remember) accompanied by tinnitus that sounded like wind chimes.

My doctor put me on the steroids and antibiotics which didn't help. Took another 5 months to get to my first MRI in April, going through the VA - audiology, then ENT, then MRI - the old hurry up and wait routine that we get from government.

My AN was 3x4x9 in relatively the same place. I elected watch and wait and had my second MRI in October. The AN had grown to 4x4x11. About the same time I noticed that the tinnitus was gone so I checked the right ear with a headphone and the hearing was 100% gone, too.

I felt that Gamma Knife was a good bet since I'm 66 and really am loath to have brain surgery this late in life.

Last week I had a consultation with Dr Porter at Barrow Acoustic Neuroma Center here in Phoenix and he agreed with Gamma Knife.

I agree with others who suggest that you get second opinions from the specialists that give free consults.

« Last Edit: November 15, 2012, 07:55:32 pm by arizonajack »
3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

fizzysuz

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Re: New AN in Alabama
« Reply #3 on: November 16, 2012, 12:49:55 pm »
Thanks guys. I had a follow up with my local ENT today who also said he would make another referral for a 2nd opinion for me. I am going to keep researching and see how things progress. In the meantime, I'm on the lookout for a good white noise machine to help me sleep.

Jane, I will probably be PMing you soon - thanks for the offer!

Jack, I hope everything goes well. I'll be eager to hear about your GN experience.

leapyrtwins

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Re: New AN in Alabama
« Reply #4 on: November 20, 2012, 08:14:54 pm »
I'm not too sure what to think after my trip to see Dr. McGrew. My ENT said that he thought the mid-fossa approach would be the surgical option presented to me but that due to the size and placement of the tumor, radiation would probably be a better treatment. However, Dr. McGrew doesn't seem to be a radiation fan. He tells me that there is a greater risk of hearing loss with radiation and there is a good chance of facial nerve damage - some of which may not immediately present itself. He also cites that I'm young (today is my 40th birthday) and radiation does not remove the tumor, only kills it (hopefully) and once it's been radiated, it will probably grow back and then surgery is more dangerous if it can be done at all. He says that his recommendation would be the retrosigmoid approach which would allow them to get right to the tumor site and probably retain what hearing I have and more than likely do little to no damage to my facial nerve.

Okay, first let me say I'm not a doctor.  Now let me give you my two cents on Dr. McGrew's recommendation above.

1)  I agree with you.  Dr. McGrew doesn't seem to be a radiation fan and his "concerns" make that very apparent.  While I didn't choose radiation it's worked very well for very many people your age - and younger - and the chances of it killing your AN are more than "hopefully" and saying it will "probably grow back" isn't correct.  In addition, if you were to have radiation and had regrowth - something that can also happen with surgery - it's not "more dangerous" to have surgery.  Surgically removing an AN after failed radiation can be harder, but to my knowledge not more dangerous.  I also don't understand "if it can be done at all".  I've never heard that an AN that was radiated and continued to grow couldn't be surgically removed. 

I don't think Dr. McGrew meant to intentionally mislead you; he probably just doesn't treat ANs with radiation and therefore still believes in a lot of radiation myths.

2)  Although I had retrosigmoid and thankfully don't have facial nerve damage, lots of docs will tell you that the retrosigmoid approach results in a fairly large incidence of facial nerve damage.  Which is why a lot of docs recommend translab.

3)  The odds of keeping your hearing with the retrosigmoid approach aren't very good at all.  Definitely less than 50/50, probably more like 20/80.  If you want the surgical approach with the best odds of saving your hearing you should go with mid-fossa if that is an option for you.

4)  Once again, I'm not a doctor, but based on your family background it sure sounds like you could be NF2.  You can find out with a simple blood test.

I'm not you and I don't want to tell you what to do, but if it were me I'd definitely consult with a doctor who treats ANs with radiation and see what he/she says.  Your AN is certainly small enough for radiation and you are not too young for it.  The location of your AN might mean you aren't a good candidate for radiation, but that's up to a doc who does radiation to decide.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tumbleweed

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Re: New AN in Alabama
« Reply #5 on: November 21, 2012, 11:19:00 am »
Suzie:

The "info" about radiation that Dr. McGrew gave you is rife with misleading and factual inaccuracies. I'm leaving in a few minutes to visit family for Thanksgiving but wanted to let you know I will pick this thread up again and debunk in detail when I return home. But in brief, I think either radiation or middle fossa surgery are your best options (for the fewest side effects and highest chance of preserving your hearing and facial nerve).

In the meantime, please read my post in this thread (and click on my embedded link there) for more info:
http://anausa.org/smf/index.php?topic=6657.0

More in a few days...

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Tumbleweed

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Re: New AN in Alabama
« Reply #6 on: November 23, 2012, 08:43:22 pm »
Suzie:

Back again with more specific comments on your post:
1. I agree with your ENT. For an AN that is almost entirely contained within the IAC (internal auditory canal), the middle fossa approach (which enters the skull above the ear) seems to be a much more sensible (i.e., direct) approach than retrosigmoid. Retrosigmoid approach enters the back of the skull and requires retracting (pushing aside) the cerebellum in order to get to the tumor. Retracting the brain exposes you to more side effects (higher incidence of chronic headaches and cognitive or behavioral changes post-op), and the surgeon would still need to get into the IAC to get to the tumor. Why not go directly into the IAC from immediately above it, as in middle fossa approach (which is generally presumed to entail less risk)? Maybe Dr. McGrew is not as skilled/experienced in this surgical approach, and so he has chosen what he knows how to do (retrosigmoid). Or perhaps he has another reason. But all that said, why entertain such an invasive procedure as microsurgery on the brain (which requires cutting open the skull) for such a small tumor that can be treated with radiation?

2. "He tells me that there is a greater risk of hearing loss with radiation and there is a good chance of facial nerve damage." Generally speaking, the risk of hearing loss with radiation would be no greater than with microsurgery and could, in fact, be substantially less than with retrosigmoid surgery. But perhaps Dr. McGrew sees something that's unusual about your particular case that would cause him to depart from citing the usual statistical risks for hearing loss with different treatments. More likely, he is looking at decades-old data that reflected the much higher radiation doses that were used long ago. More recently, lower doses of radiation are being used to treat ANs, and with that lower dose comes an increased chance of hearing preservation -- generally 65% with medium-size tumors treated with GammaKnife radiation. With fractionated radiotherapy (such as is used with CyberKnife radiation), the chances of hearing preservation goes up to 75% for medium-size tumors. The good news is that your tumor is extremely small (much smaller than a medium size tumor), so your odds of preserving your hearing with CyberKnife treatment should be higher than 75%. If Dr. McGrew has not performed an ABR (auditory brainstem response) test on you, I dare say he is only guessing -- and wildly at that -- at your chances of preserving your hearing with microsurgery involving any approach (retrosigmoid or middle fossa). The ABR test basically shows how weak your hearing nerve is and therefore how likely it is that its function will survive the trauma of cutting a tumor away from it. Case in point: my ABR test showed an extremely weak hearing nerve. Even Dr. Brackmann (esteemed neurosurgeon at House Ear Institute who has a reputation for being pro-surgery) recommended I get radiation on the basis of my ABR test; he concluded that I had a 100% chance of losing my hearing with any type of microsurgery for the tumor (and only retrosigmoid was feasible in my case, due to the tumor's medium size and location near my brainstem). Other surgeons I consulted made the same conclusion -- surgery would leave me deaf in the ear on the side of the AN. Now, nearly five years after getting CK (CyberKnife radiation), I still have useful hearing on that side (although I've lost as much as 25 decibels of hearing response in the midrange and lower high frequencies since receiving treatment).

As for Dr. McGrew's statement that radiation would entail a "good chance of facial nerve damage," this is more clear-cut: bulls**t!! The risks of facial nerve damage with any type of microsurgery is far greater than that for receiving radiation treatments. This is one of the most clearly and widely understood statistical facts regarding AN treatments. Unless you misunderstood Dr. McGrew and he didn't actually say this, I would run away from him as fast as you could because it's obvious that he is not up on the current body of research regarding AN treatments and their potential side effects. Extremely few radiation patients develop any facial nerve deficit after receiving GammaKnife (GK) or CyberKnife (CK). That's because, like with other motor nerves, the facial nerve's function is highly robust compared to the function of sensory nerves such as hearing and balance nerves. On the other hand, microsurgery poses a relatively high risk of facial-nerve damage -- even in cases where the anatomical continuity of the nerve remains intact throughout and after the procedure. Simply put, the trauma of cutting a tumor off the facial nerve (assuming it is adhering to it or wrapped around it in the first place, which might not be the case for your small tumor) can more readily damage the nerve's function than irradiating it would. In most cases, radiation preserves the function of the facial nerve more often than microsurgery does for the same size tumor. In my case (again, different than yours because my AN was larger and near my brainstem), six doctors put my chances of permanent facial paralysis at approximately 33% (1 in 3 chance) with microsurgery, while those in the group who practiced radiation deemed my risk to be less than 1% chance of paralysis with radiation (the other doctors who didn't practice radiation therapy gave no estimate of my risk with radiation, as they admitted that treatment was outside their area of expertise; a stance Dr. McGrew surely should have also taken).

3. "once it's been radiated, it will probably grow back and then surgery is more dangerous if it can be done at all." Two more erroneous statements by Dr. McGrew. "Probably" infers a greater than 50% chance. But the statistics clearly show that the chance of a tumor growing back after radiation is only between 2% (with the most expert doctors and best-equipped facilities performing the treatment) and roughly 10%. How does that compare with tumor recurrence after microsurgery? Virtually identical risk! That is, you stand no greater risk of the tumor growing back after radiation than you do after surgery. Please understand that microsurgery does not remove the entire tumor in all cases. Sometimes some of the tumor is left behind on purpose, so as not to damage a cranial nerve it is sticking to or wrapped around by cutting too much. In other cases, the entirety of the tumor is intended to be removed, but a number of microscopic cells are overlooked and left behind, allowing regrowth. Whether you opt for radiation or microsurgery, your risk of tumor recurrence is statistically even.

As for Dr. McGrew's statement that surgery is more dangerous if it can be done at all on a previously irradiated tumor, the best neurosurgeons agree that only surgeons with little experience removing ANs have trouble with previously irradiated tumors. Dr. McGrew's statement is just one more admission of his relative lack of experience.

As for work and family constraints restricting your ability to travel for treatment, I strongly advise you to reconsider. This forum is replete with members who took the most convenient course for treatment and ended up with life-altering negative results that they rue to this day. You are rolling the dice by choosing an inexperienced local doctor for the sake of convenience. If you can't find another doctor in your area who is more (i.e., very) experienced, please reconsider traveling to seek treatment. You know the saying "It's not brain surgery"? Well, this is brain surgery (whether surgical resection or radiation treatments), and AN removal is in fact considered by many neurosurgeons to be the most difficult type of brain surgery there is (due to this type of tumor's relatively inaccessible location). The doctor and facility you choose to treat you will have a profound effect on your quality of life thereafter and indefinitely into your future. Choose wisely.

Suzie, I know I've used some strong words here, but your post raised some seriously red flags. None of us here want to see a fellow forumite damaged. Your tumor is very small. Please take the time to get another (or multiple) opinions from other experts before you make a decision on your treatment. You have plenty of time to research your options further, before your tumor will grow large enough to present a serious risk to you. If you have any other questions, please feel free to ask. We're all here to help.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

fizzysuz

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Re: New AN in Alabama
« Reply #7 on: November 24, 2012, 09:29:12 pm »
I don't have a chance to get online as often as I'd like (my son has a computer radar - as soon as I sit down, he's here) but I'd like to say that I appreciate all the input. I will seek a 2nd opinion no matter what route I choose to go. As I said in my original post, I only have one brain. I'm interested to see what the neurosurgeon has to say as he would be the one actually doing most of the surgery. I also understand that he is very pro-radiation. After I talk to these guys in a few months, I'll go see a few more and make decisions then.

TW - Please understand that I'm not trying to discredit any doctor and I may have miss-heard some of the things he said. As I'm sure you know, you get a lot of information in an initial consultation and while I went prepared, I did not ask all the questions I could have (part of the reason I'm looking for input). This team of doctors performs many AN surgeries and I know the neurosurgeon (who I have not met yet) does very good work. But again, we have Vanderbilt and Atlanta close by too so I'll keep asking until I'm satisfied! Thanks for giving me some points to ask about and to think on.

~suzie

Tumbleweed

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Re: New AN in Alabama
« Reply #8 on: November 25, 2012, 01:42:45 pm »
Hi, Suzie:

Hopefully Dr. McGrew's response to your questions wasn't as biased and uninformed as you remembered. I recognize how what was said could've been lost in translation. I just wanted to be sure that you were aware of the misinformation that occasionally gets dispensed about radiation, because it wouldn't be the first time we've heard it on this forum. We've seen recurring, misleading myths quoted verbatim by doctors who are biased against radiation or simply uninformed. This seems to be happening less frequently as successful radiotherapy outcomes become more widely known, but some Luddites still persist.

Every type of treatment for ANs -- including radiation -- poses considerable risk, but clearly the drawbacks for radiotherapy you thought were communicated to you were incorrect. Hopefully Dr. McGrew's response was more balanced and measured than you remembered it to be.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

alabamajane

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Re: New AN in Alabama
« Reply #9 on: November 26, 2012, 09:07:25 am »
Susie,
Glad to hear you will go forward with consult with Dr Fisher, I believe you will find him very qualified and informative ,, one suggestion I have is to go ahead and make the appointment with him if you have not yet and ask that he order the MRI at Kirklin Clinic before the appt so he has the images and you will be able to get those results on a cd , which you stated you could not at your center. Then you will be able to send that cd to House clinic for phone consult or at least you would have results on cd if you decide to visit Vanderbilt or somewhere else. I feel certain Dr Fisher will be glad to order it for you  if you call his PA and ask.

As you say, he is the one that actually removes the tumor and Dr McGrew "opens the hole",, both are excellent Drs. As I said, I can't speak to the radiation aspect, and Dr Fisher may have some advice about it. I told you you would get some further opinions about radiation info, but then Dr MCGrew did not profess to be radiation Dr... Check UAB radiation dept or USA in Mobile.

I don't know how close you are to Mobile; however USA has new cancer center, USA Mitchell Institute, which I believe has new cyber knife machine if you are interested in that type of radiation ,,excellent new facility..

Just some more choices for you  :D best of luck,, Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

 


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