ANA Discussion Forum
General Category => Hearing Issues => Topic started by: Elda on August 19, 2008, 06:46:04 pm
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I had a very bad yet fortunately unusual unsuccessful surgery for a BAHA. I had the surgery in November after having an acoustic neuroma removed 6 years ago. The surgery seemed to be healing well until February when the skin graft got infected. That still wasn't unusual and the infection went away, but the skin did not join together. Instead, the hole around the post got larger and larger exposing more skull. Every day, my husband has had to treat the area with antibiotic to prevent infection. No swimming! Finally, in July, I was able to see a specialist about this. Apparently, the bone underneath the skin graft is unhealthy and will have to be removed.... about 4cm in diameter of bone. Then, skin will be pulled over to cover the area. This is so unusual, that my ENT has asked if she can publish the results. I agreed as I feel people should know about possible dangerous side effects. Apparently, this has happened as a result of my previous retrosigmoid surgery weakening the bone and circulation system. Has anyone else had problems post op with a BAHA aftter acoustic neuroma surgery, particularly retrosigmoid approach?
The pictures are pretty dramatic, if I could figure out how to post them....
Elda
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Yikes Elda how terrible for you. Glad you finally are going to get things resolved. Sending healing vibes your way.
Michelle :o
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Thanks, Michelle. I see you had your AN removed exactly 6 years after I did! Good luck on your recovery!
Elda
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H'm so sorry what you had to go thru these past 6 months. That was terrible.
Apparently it doesn't happen very often, but of course, it had to be you. I agree that people should know about dangerous side effects, so they can make their own decision.
Thanks for posting your problems with it....and know I will be praying for you. I hope they can get it to work.......and in the end, things will be fine.
Blessings,
Lacey
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Elda -
I'm sorry to hear about your bad experience with BAHA surgery.
I had surgery in March, approximately nine months after my retrosigmoid surgery, and have had no problems whatsoever. My BAHA site healed very quickly. It sounds like what you encountered is quite rare. While I have heard of infections on the BAHA site, they are usually minor, short lasting, and are normally treated with antibiotic ointment.
I'm confused about your reference to "skin graft" as BAHA surgery doesn't typically involve a skin graft. Are you talking about the piece of your scalp that the doctor peeled back and then used to cover the titanium fixture?
My neurotologist, who did both my retrosigmoid and BAHA surgeries, has done well over 200 BAHA surgeries and to my knowledge has never had a patient with a problem like yours. Sounds like unfortunately you are the "victim" of a highly usual event.
Jan
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Jan- yes with the skin graft, I am talking about the piece of skin that was peeled back, thinned, then put back where the titanium piece is. I looked at your pictures (and am wondering how you posted them!) and noticed that your BAHA site is significantly higher than mine. I am wondering if that made a difference to this failing? The doctors' feeling is that the scar from my previous operation did not allow enough circulation in the skin and also that the bone underneath was not good bone due to the previous operation. Of course, this is all in retrospect to explain why such a strange thing would have happened!
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Elda
I am so sorry to hear about your ordeal you are definitely in my prayers. I have not yet had my AN removed (surgery is still on for October 7th) so obviously I haven't had a BAHA experience of my own but I spoke with my sister's boyfriend's brother (whew) who has two BAHAs (he had a rare double ear infection that went into the skull and nerves) and he mentioned that the doctors had to move his jaw muscles when they installed the titanium pieces. So instead of the 1.5 hour surgery he and his family were expecting he was under for 5 hours. I wasn't aware that this was a possibility and I was wondering if anyone who posts had this or a similar issue.
Best of luck, Elda
Mo
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Mo Ro -
just curious, does your sister's boyfriend's brother have two BAHAs or two Cochlears? BAHAs are commonly used for unilateral (single-sided deafness) and Cochlears for bilateral (complete) deafness. BAHA implants and Cochlear implants are similar, though not the same. The one major difference I know of is that Cochlears have visible wires, BAHAs do not.
Elda -
posting pictures is easy and I can definitely tell you how to do that, but I'm not sure I want to see pictures of your failed BAHA surgery if they are "pretty dramatic" - not that it's my job to censor things on the forum ;) I understand your statement about the skin graft now, but technically it's not a skin graft since the skin wasn't taken from another part of your body. No big deal, I just don't want to give BAHA candidates a confusing "picture".
I don't know how docs decide where to place the BAHA implant, it must have something to do with the location of your bones since I know the BAHA works through bone conduction. Lori (lori67) has mentioned that her site is not in the same place as mine, but I can't recall if it's higher or lower.
I'm not sure how the scar from retrosigmoid affects the circulation, I just know that I had retrosigmoid and my scar wasn't a factor. The thinned skin on my skull did cause one of the screws that is holding my bones back together (placed during my retro surgery) to almost "pop" through my skin, but that didn't happen. My doc said if the screw did pop through, he'd just unscrew it - no damage done.
Jan
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Jan
He definitely has two BAHAs. He has had over 20 hearing aids and loves his BAHAs so much he has contacted the company to see if he can be a spokesperson for the device. He's pretty sure they will use him because he does have two which is extremely rare.
Mo
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Very cool, Mo 8)
It would be wonderful if he could be a spokesman. IMO everyone should know what a great option the BAHA is.
Jan
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There was a newspaper article in the Des Moines Register a couple years ago about a lady from southern Iowa who also had 2 BAHAs. I can't rememember now what her hearing problems was from but she had been that way a long time and getting the BAHAS was like a miracle to her. I don't think it even said where she got them from but I would assume Iowa City as do know it was in Iowa. I think she was around 30. I may have saved it and will have to look as would like to read it again.
Cheryl R
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I have to agree with Jan, a graphic photo may detour people and your situation sounds rare. We are all far too aware of risks associated with surgery..... living it. Anyway I think it may scare people from wanting it (me included). I am glad that I know of you situation so I can address it with my physican if I choose the baha. As I recover I find it difficult in certain situations now that I am SSD. So many descions to make...
Michelle ;D
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I can see your point-- it is extremely rare. However, I really wish someone had scared me off from having the BAHA surgery! I now face having another long head surgery to remove the dead bone and slide skin around to cover this area. If I had had any idea that would happen, I would have not had the BAHA surgery. I think it is only a potential problem if someone has had previous retrosigmoid surgery-- my surgeon said that in cases of translab surgery, there wasn't an issue. (She did not expect there to be an issue in this case either, but the unexpected happened!) If anyone wants to see the whole story, please send me your e-mail.
For now, I wll hold out for the TransEar to come to CAnada, or go to the states to get one.
Elda
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Elda-
I really appreciate your story. This is exactly the reason I've held off having BAHA surgery. I'd had surgery 4 years ago and ran into complications. I had a cranial osteomyelitis which is a serious bone infection of the bone flap. It was difficult to treat because of a rare bacteria. I ended up with a cranial epidural abscess. My surgeon always felt I could have a BAHA. But like I said I've worried about another serious infection becasue of previous history. There is not a lot of information about cases like yours and mine to reinforce my concerns. I know you didn't have a bone infection or anything like that and that your case is different from mine. Still now I have chronic pain in the area of surgery. Soon I'll be having an updated MRI. I'm concerned the scarring is now stuck to the dura and the pain problem will just be made worse from a BAHA plus the high potencial for an infection from compromised anatomy etc.
Tahnks for reminding me of my gut instincts.
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Oh Elda I hope you are feeling better soon - that is so terrible all that you have been through. Sending healing vibes your way. I am waiting to hear about the Transear, I will cross the border to get it but not sure if anyone will help me to maintain it here. I will post anything I find out. Good luck Elda.
Michelle ;D
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FWIW, I'm very glad no one "scared me off" from BAHA surgery.
My BAHA implant has been one of the best things I've done recently - hands down. I've had my processor for about 10 weeks now and every day I'm still amazed about the positive changes it's made in my life.
While I'm very sorry to hear that some patients have complications, everyone is different and those considering the BAHA should keep this in mind.
To each his own,
Jan
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Hi Elda,
Sorry I'm late coming ot this thread and even more sorry about your horrible experience with BAHA surgery. I'm sure what happened to you is very rare and you were unfortunate enougjh to be the one it happened to. I truly hope you are on the road to recovery and everything will be okay. As Michelle stated, we all know that there are risks involved with any form of surgery, obviously some worse than others. I had surgery for my acoustic neuroma four weeks ago and although I find what happened to you to be a terrible thing, nothing short of lightniing striking me will keep me from getting a BAHA as soon as I can. I hate being SSD and can't stand the idea of having anything in my ear canal the rest of my life. I know some people do very well being SSD and some people love their TransEars but BAHA is still the way I plan to go. From what I know of it, it seems like the best thing created since sliced bread and worth the risks involved, which are usually minor, for me anyway. I wish you a qulick resolution and good health.
Wendy
Hi Jan,
Hope all is well and you are enjoying wonderful BAHA moments all the time!!
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Hi, Wendy -
I'm good. A little harried, since school started Thursday afternoon and the kids and I are still working on getting back to a routine. Summer is great, but everything tends to go to hell as far as our schedule goes ;)
I'm glad you are doing so well in your recovery and sorry to hear you hate being SSD - although I can totally relate. As I've said a kazillion times, BAHAs aren't for everyone, but mine has been nothing short of miraculous for me. I hope you have the same experience ;D
Jan
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Jan, I think the explanation for the double BAHAs of Mo's brother is that with AN, you have sensory-neural, or inner ear hearing loss - no functioning hearing organ or nerve. The BAHA then serves to transmit sound through bone to the other side.
But many people experience conductive hearing loss, a problem in the middle ear. Their inner ear is working fine, but the sound just doesn't get to it, and an ordinary hearing aid won't help. In that case, a BAHA can transmit the sound through bone to bypass the middle ear, so it gets to the inner ear on the same side. if someone has conductive hearing loss on both sides, then stereo BAHAs would make sense for them.
Elda's is the first case I have heard about of a BAHA installation going awry. I think it is pretty rare, but it does sound like the doctor doing the procedure should make sure that the bone in the area has healed well before proceeding. Elda, you have my best wishes for a speedy recovery from all this.
I suspect that the installation was not done by the same doctor who did the AN surgery, so they may not have known as much about how the retrosigmoid surgery might have affected the bone. Hopefully the situation can be straightened out in Elda's case, and can be avoided for others. I hope it does not put people off too much, because there have been a lot of successes with the BAHA and it has been a big help to many users.
Steve
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Steve -
thanks for the scientific explanation of the two BAHAs. I know people who have hearing loss without having an AN can use BAHAs, but I thought they had to be unilaterally deaf. I wasn't sure if someone who was completely deaf could benefit from a BAHA; I thought they had to have a Cochlear. Guess I was wrong ???
Regardless, I was glad to hear that Mo's "connection" had such success with his BAHAs.
Although we all know BAHA installations gone awry (nice phrase) aren't common, I do know of one other AN patient who had an issue with healing. I met him through the WTT list and his name is Dave. He told me that his BAHA site didn't heal well, so the doc had to take a skin graft from somewhere else on his body - I'm thinking his leg or upper arm - and use it on the site. At that point he healed just fine and went on to enjoy his BAHA. He was one of the people who encouraged me to pursue it :)
Perhaps, as you say, Elda's BAHA surgeon wasn't the same surgeon who performed her AN surgery. In my case, my doc did both my surgeries, so he was well aware of what he could possible "encounter" during my implant.
Jan
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Hi Jan,
I haven't visited this thread in a while and hope you and the kids have settled back into a routine by now. Tomorrow is the first day of school here and I'm sure the morning will be chaotic. With regard to hating being SSD, it's all the little things I miss, hearing my cat purr if he is not sitting on my lap or left side. Hiis purr is so loud that I could hear him halfway across the room before. It's always been one of my favorite sounds --right now he is laying about two feet away from me on the back of the loveseat which is on my right and I'm sure he is purring because he is looking at me, but I can't hear him. Not hearing my husband snore most of the time is the only real benefit to being SSD. I have to say I'm happy about that. I guess sometimes you just have to find happiness where you can.
Wendy
Sorry for the hijack Elda i hope you are healing well.