Author Topic: My Baha Magnet Story  (Read 17943 times)

Kristena

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My Baha Magnet Story
« on: July 28, 2014, 04:38:03 pm »
I want to have one place to track my story of the new Baha Magnet, so I’m going to go back and copy some previous posts, then follow with my current situation.
My first post on the subject: Hearing Issues / Re: Cross verses BAHA
« on: March 28, 2014, 03:04:06 pm »
I am curious about this subject as well. I'm 9 mos post-op and am SSD. I had the official, "yep, you are deaf in your right ear" appointment, and now I'm scheduled to meet with an otologist about a hearing aid. I thought it was interesting that my ENT said I was only a candidate for a BAHA (because I don't wear glasses?) But from everything I've read here, the CROS sounds like a perfect fit. I definitely mentioned the CROS when I scheduled my appt. I'm just not excited about having my head cut open again if there's another solution that could work just as well. 

How long should it all take? How many appts? Do you normally get to leave right away with a test product or anything? How long does it usually take to order your final product? Any information you could provide would be appreciated.

Hearing Issues / Re: Cross verses BAHA
« on: March 31, 2014, 05:10:05 pm »
Well today's appt was a bit of a waste. I'd been waiting for this otologist to come to a clinic closer to my home (which he only does once a month), and he told me today I'll have to make an appt at the other clinic, since that is where their "hearing aid showroom" is. I hope next time I'll be able to take a test drive! 

He did ease my fears a bit about the BAHA. How it's just a small puncture in the skin and not created with a scalpel. And it would be just one hearing aid and not two. And it can be removed if I don't like it. But most people LOVE them. I guess I'll try again later...

Hearing Issues / Re: Cross verses BAHA
« on: May 25, 2014, 02:59:52 pm »
I made the leap and scheduled my Baha surgery! I was leaning that way anyway, then I found out that my insurance doesn't cover hearing aids, and the Baha isn't considered a hearing aid.
I scheduled for a Friday to allow the most recovery before returning to work. Can anyone recall the recovery process? Is that going to be long enough? Do you know if you get to try out the headband while waiting for the ossification to take place? (I'm going to ask about that.) I would assume the snapping on and off is a bit tender at first? Does the snap start out super tight and loosen over time?

Also, I had the choice of the magnet model, but it was quite a bit larger than the other.

Hearing Issues / Re: Cross verses BAHA
« on: June 12, 2014, 05:37:21 pm »
My "procedure" is tomorrow morning (Friday the 13th--superstitious anyone?) Wish me luck! I'm way more nervous this time than for my craniotomy a year ago. MusicTracy, how are you doing?

There must be a promotion going on now, because I was asked to pick a free accessory. So I'm getting a wireless phone clip. It will be like my Baha is a bluetooth--and it can play music and stuff too! Bummer that I have to wait 3 months to experience the benefits.

Hearing Issues / Re: Cross verses BAHA
« on: June 15, 2014, 11:15:45 am »
So that was a little more involved than I was prepared for. Apparently in my area they are pushing to have everyone implanted with the magnet version going forward. I said I didn't want that because it's so much larger (both inside and out), but I don't think the choice was mine. The Cochlear rep was at my surgery as well. They must have quite a few issues with infections and skin growing up around the post that they'd rather keep it enclosed.

I was planning for the simple puncture procedure with the post sticking out, but I got both the horseshoe-shaped incision to place the magnet, and they also had to cut away some of my titanium mesh from the retrosigmoid surgery a year ago to make room for the magnet! My head is still heavily bandaged, so I'm not exactly sure what it looks like under there yet. I was planning to return to work tomorrow, but I was told not to work for a week. I think I'll work from home tomorrow and play it by ear for Tuesday.

The good news is that I get my processor in 6 weeks versus 3 months with the post!

Hearing Issues / Re: Cross verses BAHA
« on: June 28, 2014, 03:23:03 pm »
Well I have my next MRI on July 23. That will be the first time to see if my remaining tumor has grown at all since my surgery. I found a list of facts about MRIs on Cochlear's own website, and I brought that to my first post-op appt after the Baha magnet was implanted. It has all kinds of information about the settings for the MRIs, and how the MRI will leave a shadow for 4.5" from the magnet, and how the magnet will heat up during an extended MRI, etc. All he said was, "bring this to your next MRI appt." It didn't sound like he was very knowledgeable about it at all!

Is there anyone else out there who has been using the Cochlear Attract model of the Baha? What has your experience been? I feel a little like a guinea pig. It's been over 2 weeks since I had my "procedure," and I haven't been able to sleep on that side yet. Also taking glasses on and off is still a little tender. Now that the swelling has gone down, the magnet leaves quite a ridge that you can actually feel (and you don't want your glasses to get caught on it!)

Post-Treatment / Necrosis Anyone?
« on: July 13, 2014, 05:47:14 am »
Does anyone have experience with necrosis...either from your AN or other surgery? I recently had a BAHA magnet implanted, and I have a small circle (slightly smaller than a dime) of black, dead skin. It's been about 4 weeks, so we're far past the point of being able to do anything about it. I'll discuss when I next see the doctor this week, but do you know if it will stay like that? Or fall off eventually like a scab? I don't think there's much under there. It might even be an exposed magnet if the skin falls off. Anyone have experience or advice for me?

Current Post:
So, today is July 28, 2014, and I’m scheduled to have surgery again in a couple days to have the magnet removed. Yesterday one of my scabs just slid aside and revealed magnet! I was really freaked out, but there was no pain, no blood, just shiny silver exposed behind my ear. I had my husband gob on a bunch of Bacitracin, and I called first thing this morning for an appt. My ENT got me in this afternoon and just said, “this isn’t going to work—we’ll have to remove it.” He made comments like, “your skin is thin, and the magnet is so large,” and “we’re starting to see complications like this.” I feel like such a guinea pig! I do have 2 recommendations for others considering the Baha Attract (magnet version).

1) I don’t think it should be recommended for anyone who has had surgery behind their ear (i.e. retrosigmoid and possibly middle fossa). The vascular supply has been compromised, and you may not heal properly.
2) I had an MRI last week with the magnet in place. It is possible—they put me on a lower power machine—but the “artifact” that the magnet leaves isn’t just a shadow. It’s a complete black box. Luckily we could still see my remaining tumor just outside the black circle (no growth in the last year!), but it was right on the edge. If you rely on MRIs, I would not get the magnet until they have found a way to see through that. My tumor developed from the lining of the brain, and although we can see what tumor remains in the ear canal, we couldn’t see if it were to re-develop in the skull.

So now I’m having it removed, and we’ll decide that day whether we should still go ahead with installing the post. I’m inclined to say yes, if the skin closes easily and it looks like it will all heal correctly. If there is even a question, I’d rather just let the area heal fully and get the post later. (I still want to hear my grandkids whisper in both ears!)
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

TJ

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Re: My Baha Magnet Story
« Reply #1 on: July 31, 2014, 07:58:23 pm »
Kristena

Has anyone of your doctors recommended a cochlear implant instead of the Baha type implant?  Cochlear implants are a bit different than the BAHA from what I understand.  There are currently 3 manufactures of cochlear implants.  One is MED-EL which allows you to have a magnet and still have MRi's, it has been approved by the FDA.  They say it does not interfere with the picture.   This type of implant has a small circler processor (it is very small) that sets on your head and is held in place with the magnet.  The other part is placed under your skin and has electrodes that go to the cochlea.

Of course with all this said I am not a medical professional.  I have done a lot of checking this out as I have an AN on one side and recently lost the hearing on the other side.  I will receive my cochlear implant within the next two months.

Good Luck

TJ

Kristena

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Re: My Baha Magnet Story
« Reply #2 on: August 03, 2014, 02:42:29 pm »
My ENT removed the magnet on Friday, and performed a rhomboid flap to close the skin and hopefully get some blood flow in that area. I removed the compression bandages after 24 hrs, and the gauze and bandage from the wound itself this morning. It already looks so much healthier than the first time around--I just hope it continues to heal properly. And I did not get the post installed, so the surgeon must have felt it safer to get the area healed first.

WHEN it's all healed, he says he can easily insert the Baha post into the screw that is already implanted and forever part of my skull. I'm just ready to take it one step at a time. Now back to my dry eye issues! (I had to cancel an appt with my opthamologist to take care of this issue.) So many health issues--so little time!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

Kristena

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Re: My Baha Magnet Story
« Reply #3 on: August 28, 2014, 01:01:50 pm »
Yesterday I went back and finally had the post installed that I was originally hoping to get over 2 months ago. Because nothing with me is as easy as it seems, yesterday was a bigger deal than I had planned for once again. My ENT numbed me up and thought he located the "anchor" for my BAHA. He created the puncture in my scalp, but instead had happened upon my titanium mesh. Then he went on a bit of a fishing expedition with the scalpel to locate the area where the post should be screwed in. Once he found it, there was another puncture to create a nice, round opening in the skin. The post was screwed in (tight! I had to hold my head still while he cranked on it a little), then I had some stitches to close up the opening leading to the correct location. I haven't seen it yet, but he described it as a little less than an inch. Surprisingly, once the numbing injection and two Advil wore off, I was in very little discomfort, and I returned to work yesterday following the procedure. I have a large square of guaze around the post and a small, white plastic cap (not the large cup) covering the post. Both are hidden by my hair, and I can remove them both tonight.

So now, I only have to wait 2 weeks to get my stitches out, then I can get my processor!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

leapyrtwins

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Re: My Baha Magnet Story
« Reply #4 on: September 09, 2014, 08:22:51 am »
Has anyone of your doctors recommended a cochlear implant instead of the Baha type implant?  Cochlear implants are a bit different than the BAHA from what I understand. 

Cochlear implants and BAHA implants are two different things; used for two different kinds of hearing loss.  Typically AN patients aren't candidates for CIs; they are candidates for BAHAs.

I've had my BAHA implant (Cochlear) since March 2008 and absolutely love it; couldn't live without it.

I'm sorry to hear that you had issues, Kristena, and wonder how much of that had to do with the magnet.  In the older days (when I got my implant) they weren't using magnets since they are a no-no with MRI machines.  Sounds like times have changed a lot since then. 

I'm not a medical person, but in my opinion the BAHA w/o the magnet is the way to go.  I had my implant "surgery" as an outpatient procedure while wide awake (doc injected lidocaine in my skull) and I walked out of the hospital about 90 minutes later.  My site healed without issues and with the exception of one very small infection (very common from an ingrown hair follicle) I have had no problems whatsoever.

Best,

Jan
« Last Edit: September 09, 2014, 08:25:01 am by leapyrtwins »
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

Kristena

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Re: My Baha Magnet Story
« Reply #5 on: September 13, 2014, 07:00:23 pm »
I was hoping to return with a happy ending to my story. Just 3 days ago, I got my latest round of stitches removed, and finally received my processor! I was ready for my wow moment, but it was really all very normal. Which is a good thing. I could hear people talking to me from both sides, and I purposefully stood on the other side of the elevator at work, and the other end of the table where I usually sit at lunch. I tested my phone clip, and it was pretty cool. It seemed like the people were inside my head! The main thing I didn't like was the sound of my hair brushing past the processor when I walked.

Yesterday I started noticing some feedback or distortion, and this morning, just 3 days into my new processor, I noticed the post wobbling ever so slightly and could hear grinding! So again, I'm freaking out a bit. I wore the processor one last time to a birthday party, then removed it until I can see the ENT again. I was pretty scared--thinking maybe the base was going to pull out of my skull when I pulled the processor off. The area is a little sore, which might just be from the movement around the skin, or my skin getting pinched under the post. I'm really hoping it's just a loose post and can be screwed in tighter. I think my doctor hand-tightened it when he put it in instead of using the special Cochlear torque machine I saw on their website, but I'm not certain. Ugh!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

Kristena

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Re: My Baha Magnet Story
« Reply #6 on: September 21, 2014, 03:00:12 pm »
Phew, it was just a loose post and was tightened in the office. But since then, it seems to come loose every few days, and my husband tightens it with a tiny eyeglass screwdriver.

I will be going back to have it properly (and hopefully for the last time!) tightened with the Cochlear torque machine, and I’ve requested my post be swapped out for the shortest (6mm?) abutment, but the Cochlear rep isn’t available until Oct 14! PLUS I have a small point of titanium mesh poking up from when he implanted the magnet and  had to mess with my mesh, and it feels like it’s cutting me from the inside. So he’s going to make a tiny incision and push that flat on that same day. So I’m not quite done with this yet. I can’t wait to be able to sleep on my right side again. It’s been over 3 months!
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

Kristena

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Re: My Baha Magnet Story
« Reply #7 on: November 05, 2014, 11:05:59 am »
It’s been 3 weeks since the shorter abutment was installed and correctly tightened, and it hasn’t loosened up since. I swear I saw a machine on the Cochlear website, but he just used a special screwdriver with an L handle for leverage. So far, so good. But he really didn’t address the mesh other than trying to push it flat from the outside (ouch!) There are actually several bumpy areas under the skin, so he referred me to a craniofacial plastics doctor to see what can be done. Maybe inject some filler to smooth out and protect the area, and also to take care of that painful point of mesh—I even had a tiny scab over the point about a week ago. Next appt is Nov 19. And I finally have a few fine random hairs growing, so I take that as a good sign the skin is finally recovering 2 months later.
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

jaylogs

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Re: My Baha Magnet Story
« Reply #8 on: November 05, 2014, 01:39:38 pm »
Wow Kristena, sounds like  you've had some fun!  I am one of the rarer people that had complications with getting my Ponto BAHA put in.  Search the forum around here, you'll find it...but it struck me very familiar what you had said about the blood flow issue, I had that problem as well.  But, here I am a few years later enjoying my BAHA.  Once in  a while the skin seems to separate from the post and causes leaking, not sure if am washing my hair too vigorously but that's the only problems I have had since.  Good luck!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

ANGuy

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Re: My Baha Magnet Story
« Reply #9 on: November 05, 2014, 04:47:09 pm »
The "machine" is likely a torque wrench, or a torque limiting wrench of some type.  Mechanics use much larger ones for tightening cylinder head bolts and other bolts that need to be a certain tightness.  There are many different ways for wrenches like that to be made, but they would all essentially appear to be a tiny wrenches not to different than the eyeglass screwdriver your husband used, or an "L shaped" wrench you mentioned.

The tool could be anything from a calibrated beam that bends, or it could have an internal clutch that slips, or a few other ways to either limit the amount of torque applied, or to display the amount of torque being applied.  At any rate, it would be something that would not really grab your attention unless you were familiar with tools and were looking at it.

Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Kristena

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Re: My Baha Magnet Story
« Reply #10 on: May 20, 2015, 12:27:11 pm »
Once again, I had intended to finish this thread with a happy ending. Unfortunately I came down with a painful, pus-y staph infection over a month ago. It cleared up slowly with antibiotics. Then just a couple days ago, I noticed the same pain starting while lying down on that side, followed the next day by sharp pain while using my abutment brush, and some mild discharge. I got out the hydrogen peroxide again, and cleaned the area twice a day and applied Lanabiotic ointment around the base of the abutment with a Q-tip. A couple days later, the pain seems to be lessening, and the drainage has stopped. Hopefully I have found out how to manage these outbreaks without having to make a doctor appt, and this won’t become an ongoing issue; I would really hate to have it removed after all I’ve been through!

I also did have the processor reprogrammed. I found out that any adjustments must go through the original provider in order to be covered by my insurance (I have a feeling that is Cochlear's rule--anyone know?) I decided to pay out of pocket for the adjustment just to see if someone else would be able to do it better, since the original audiologist pretty much just hooked it up and said it was ready. She was able to tweak the high and low ranges, and re-activated my 2nd program which reduces background noise in loud environments. Then she even used the clear plastic piece to test it for feedback, etc. It’s better, but all in all, I’m still disappointed.
2.7 cm meningioma in CPA and IAC
Retrosig June 2013 resulted in Facial paralysis and SSD
6-mo post-op MRI showed 1.0 cm remains in IAC
3-yr MRI still shows no new growth!
6/2014 Baha magnet implanted; 8/2014 magnet removed due to poor healing; 9/2014 abutment installed. Hearing fine!

alabamajane

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Re: My Baha Magnet Story
« Reply #11 on: May 20, 2015, 07:53:07 pm »
I have had my BAHA since Dec 2014 and am not real thrilled with it also. I haven't had the infection issues though, thankfully...

Concerning having someone new adjust it.. I did change audiologist since first installation. I paid $50 out of pocket for first visit and nothing for second visit. That's all I've been so far. I don't think insurance was even billed. I didn't mind the $50 to get someone closer to me and who seems much more knowledgeable about processor..she set up second program as you said and adjusted ranges and it's better but I could really do without it just about as well I believe. I was hoping I would like it better and am trying to give it some more time. I never did have an " aha" moment that some speak of. Sometimes I plug my good ear just to make sure sound is coming in that side!

I hope you get along better with yours. Just a suggestion,, maybe try to use brush more gently around abutment in case you are "pulling" skin away from it some and allowing it to get infected,,,,that's just my two cents worth though,, I don't even use my brush daily or very often,, just wash it good when I wash my hair! But again,, not sure Dr would suggest that,,, :o
Good luck going forward!!
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

leapyrtwins

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Re: My Baha Magnet Story
« Reply #12 on: July 20, 2015, 08:26:43 am »
I've had my BAHA implant since March 2008 and absolutely LOVE it.  Couldn't live without it.

Just ordered my 3rd processor the other day (Cochlear BAHA 5).

Sorry to hear some of you have had issues with your BAHA - NOT my experience at all. 

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