Cochlear Implants and Meningitis

[Malfoyish]

Hi,

I'm new here - thought I would post a little something and introduce myself. I'm a 25-year-old mom of three in NYC - got my cochlear implant almost two years ago.

I recently (and still am) recovered from bacterial meningitis. I was in the hospital from Jan 12th - Jan 16th, then I was sent home with an IV in my arm for the two weeks that followed. I just got that taken out last night, so I'm a bit relieved. IV drips two times a day - not my idea of very much fun!

I am wondering if anyone here has suffered from meningitis as well, and whether your implant had anything to do with it. To this day, they are still unsure as of whether or not mine is responsible for the meningitis. My next appt. with my specialist will be in mid-February, and I plan to ask him whether or not it is likely that I will contract meningitis again. Until all of this, I had no knowledge of the disease, nor did I understand what was going on.

My advice to you if you've got an implant - please do get your meningitis shot. I had mine, but got sick anyway. I don't know why, nor do the doctors, but there is a high risk of getting it if you've been implanted. A lot of my friends don't know this, and I wouldn't want anyone to suffer from this if it could be prevented.

Nice to meet you all. Feel free to email me if you wish. OoohSladie@verizon.net.

 

[Banjo]

My advice to you if you've got an implant - please do get your meningitis shot. I had mine, but got sick anyway. I don't know why, nor do the doctors, but there is a high risk of getting it if you've been implanted. A lot of my friends don't know this, and I wouldn't want anyone to suffer from this if it could be prevented.

Actually, I read a report months ago. But cannot remember where, but according to the report.

There is not a high risk of getting meningtis if you get implanted. You are still at the SAME risk as a non-implanted person. Some people are just unlucky because it can strike you at any moment.

I know many people who had meningitis, and it caused them to become deaf and they weren't implanted.

 

[Fly Free]

welcome to AD enjoy ur stay!

as for CI and meningitis -- i dont know but Banjo is right -- there are ppl who has become deaf due to meningitis not cuz theyre implanted -- i myself do not have CI nor do i plan to have 1 implanted (i dont see any reason to have it done when a hearing aid works just fine and is MUCH cheaper and non-invasive)

anyhow Malfoyish -- get well soon!!!

 

[Malfoyish]

Allow me to share this...

Thought you might find this interesting. Got this off the web.


Cochlear Implant Recipients Have Increased Risk of Meningitis

by Susan Boswell

Children with cochlear implants have a small—but increased—risk of contracting meningitis, according to a study by the Centers for Disease Control and Prevention (CDC), U.S. Food and Drug Administration (FDA), and state health departments that appeared in the July 31 issue of the New England Journal of Medicine (NEJM). Last September, ASHA assisted in the epidemiological effort, communicating with audiologists to identify every case of meningitis that occurred.

An increase in meningitis among cochlear implant recipients was first noticed in June 2002. This prompted an ad hoc meeting of European and American otolaryngologists in Amsterdam to exchange information and make recommendations about patient management. As of May 2003, a total of 118 cochlear implant recipients around the world had developed bacterial meningitis, with 63 cases abroad and 55 cases in the United States, including five deaths. The majority of cases in the United States involved children 5 years of age or younger, many of whom developed meningitis within a year after implantation, often within several weeks of surgery.

Because young children are the largest group that will receive implants in the future—and the age group with the highest number of reported cases—the FDA and CDC study sought to determine the incidence of bacterial meningitis in children after cochlear implantation and to identify risk factors for contracting meningitis. The researchers identified 4,264 children who received cochlear implants between 1997 and 2002 and found that 26 developed bacterial meningitis—30 times the incidence among same-aged children in the general population.

One important risk factor was the use of an electrode design that included a positioner that placed the electrode in close proximity to the auditory nerve. Nearly half of all cases of meningitis were attributable to the use of the positioner, which was voluntarily withdrawn by the manufacturer in July 2002.

But even without cochlear implants, children with hearing loss have a higher incidence of meningitis than the general population. Other research found that 23% of children with implants had meningitis before receiving a cochlear implant, placing them at a higher risk for another episode. Another 11.5% of children with implants had inner-ear malformations that are associated with meningitis, such as common cavities, Mondini malformation, cerebralspinal fluid leak, or enlarged vestibular aqueduct syndrome.

“The NEJM article is the most rigorous study to date on this concern,” said John Niparko, an otolaryngologist and director of the cochlear implant center at Johns Hopkins Hospital. “The report suggests that surgery, devices—especially those that use a positioner—and patient factors could contribute to the risk. However, the laws of small numbers as they affected this study don’t allow for definitive conclusions on which of these factors were most responsible.”

In addition to identifying potential risk factors, Niparko said the report underscores two important safeguards: vaccination and vigilance. “Age-appropriate vaccination is now a clear necessity for children and adults with a cochlear implant,” he said. “To my knowledge, there are only rare cases of meningitis in vaccinated individuals as a consequence of a lack of protection against certain subtypes of the infecting microbe.”

Any suggestion of a flu-like illness with fever in a child or adult with a cochlear implant, with or without otitis media, should be evaluated by a physician, Niparko added. “When identified and treated within 48 hours, the outcome of an episode of meningitis is drastically better than when treatment begins 72 hours after symptoms appear. This suggests that all of us who work with patients with cochlear implants should be mindful of the importance of prompt diagnosis and treatment.”

 

[Cheri]

Thought you might find this interesting. Got this off the web.


Cochlear Implant Recipients Have Increased Risk of Meningitis

by Susan Boswell

Children with cochlear implants have a small—but increased—risk of contracting meningitis, according to a study by the Centers for Disease Control and Prevention (CDC), U.S. Food and Drug Administration (FDA), and state health departments that appeared in the July 31 issue of the New England Journal of Medicine (NEJM). Last September, ASHA assisted in the epidemiological effort, communicating with audiologists to identify every case of meningitis that occurred.

An increase in meningitis among cochlear implant recipients was first noticed in June 2002. This prompted an ad hoc meeting of European and American otolaryngologists in Amsterdam to exchange information and make recommendations about patient management. As of May 2003, a total of 118 cochlear implant recipients around the world had developed bacterial meningitis, with 63 cases abroad and 55 cases in the United States, including five deaths. The majority of cases in the United States involved children 5 years of age or younger, many of whom developed meningitis within a year after implantation, often within several weeks of surgery.

Because young children are the largest group that will receive implants in the future—and the age group with the highest number of reported cases—the FDA and CDC study sought to determine the incidence of bacterial meningitis in children after cochlear implantation and to identify risk factors for contracting meningitis. The researchers identified 4,264 children who received cochlear implants between 1997 and 2002 and found that 26 developed bacterial meningitis—30 times the incidence among same-aged children in the general population.

One important risk factor was the use of an electrode design that included a positioner that placed the electrode in close proximity to the auditory nerve. Nearly half of all cases of meningitis were attributable to the use of the positioner, which was voluntarily withdrawn by the manufacturer in July 2002.

But even without cochlear implants, children with hearing loss have a higher incidence of meningitis than the general population. Other research found that 23% of children with implants had meningitis before receiving a cochlear implant, placing them at a higher risk for another episode. Another 11.5% of children with implants had inner-ear malformations that are associated with meningitis, such as common cavities, Mondini malformation, cerebralspinal fluid leak, or enlarged vestibular aqueduct syndrome.

“The NEJM article is the most rigorous study to date on this concern,” said John Niparko, an otolaryngologist and director of the cochlear implant center at Johns Hopkins Hospital. “The report suggests that surgery, devices—especially those that use a positioner—and patient factors could contribute to the risk. However, the laws of small numbers as they affected this study don’t allow for definitive conclusions on which of these factors were most responsible.”

In addition to identifying potential risk factors, Niparko said the report underscores two important safeguards: vaccination and vigilance. “Age-appropriate vaccination is now a clear necessity for children and adults with a cochlear implant,” he said. “To my knowledge, there are only rare cases of meningitis in vaccinated individuals as a consequence of a lack of protection against certain subtypes of the infecting microbe.”

Any suggestion of a flu-like illness with fever in a child or adult with a cochlear implant, with or without otitis media, should be evaluated by a physician, Niparko added. “When identified and treated within 48 hours, the outcome of an episode of meningitis is drastically better than when treatment begins 72 hours after symptoms appear. This suggests that all of us who work with patients with cochlear implants should be mindful of the importance of prompt diagnosis and treatment.”

You seem to know what u are talking about.. Good Post!....

 

[Liebling:-)))]

Hi Maljoyisch :fly2:
Thank you very much for respond to those situation because I´m very interesting. I´ll forward your information to my German friends

Now I would like to tell you what I know from the Deaf news yesterday.
I'm very sad when I read the the Deaf news yesterday that over 100 of people died due to meningitis after CI operation? We also have 3 small children who died in Germany, too.

 

[Malfoyish]

Hi,

Yes, it is very sad. Scary too!

There's a LOT of research on this topic...all you would have to do is go to Yahoo or Google, or any other search engine you normally use, and type in "meningitis cochlear implant recipients." You would NOT BELIEVE how much information is out there. I found it very useful.

Good luck, would be glad to help in any way I can.

 

[Angel]

Hi Malfoyish,

I'm curious..How old were you when you got your CI....And U did said earlier that you have meningitis...Did your doctor had told you that you may get meningitis if you went thru CI?....

 

[Angel]

Wow, Thank you so much for that information Malfoyish ...I save me a copy of your post...

 

[Malfoyish]

You're welcome. I was 23 when I got my implant..two years ago. After I was implanted, I was vaccinated, and I was told by my doctor that meningitis was a risk...so...I went and had the vaccination...

Guess it didn't work!

I'm still getting over it. It's a pest!

 

[Angel]

awww I'm so sorry to hear that.....I hope you feel better soon!...*Hugs*..

 

[Oceanbreeze]

You're welcome. I was 23 when I got my implant..two years ago. After I was implanted, I was vaccinated, and I was told by my doctor that meningitis was a risk...so...I went and had the vaccination...

Guess it didn't work!

I'm still getting over it. It's a pest!

Hey Malfoyish,

I know you and I have talked about this before, but I was wondering something.... Which vaccine did they give you? Because, you said to me that the bacteria responsible for the meningitis was strep. I ask, because, I know that they also have a vaccine for strep. Not sure if you would need this, but it sure as heck couldn't hurt! I got this vaccine several yrs ago, because, I'm high risk for lovely things like sinus infections and pneumonia, which, is commonly caused by strep, as is ear infections. Just a thought...And, my two cents worth...

 

[Malfoyish]

Hey Malfoyish,

I know you and I have talked about this before, but I was wondering something.... Which vaccine did they give you? Because, you said to me that the bacteria responsible for the meningitis was strep. I ask, because, I know that they also have a vaccine for strep. Not sure if you would need this, but it sure as heck couldn't hurt! I got this vaccine several yrs ago, because, I'm high risk for lovely things like sinus infections and pneumonia, which, is commonly caused by strep, as is ear infections. Just a thought...And, my two cents worth...

The vaccine I was given was the meningicoccal vaccine...not sure about the spelling but it was something along those lines.

Malfoyish

 

[Boult]

Malfoyish, the article you posted included this paragraph which shows that the implant with positioner WAS NOT recalled

One important risk factor was the use of an electrode design that included a positioner that placed the electrode in close proximity to the auditory nerve. Nearly half of all cases of meningitis were attributable to the use of the positioner, which was voluntarily withdrawn by the manufacturer in July 2002.

Your doctor was wrong in saying "recall" because the word "recall" means that if company declared recalls then that would means ALL users with positoners implant would have to be replaced and sent back to AB. That is not impossible as you have seen a post by Wendy which she got a email from her AB rep.

Anyway, Have you slept on it over the past week?

Was that vaccine the one recommended by FDA and CDC to vaccine CI users? hmm... ok googled for info on that ahhh here it is: first one I came across:

DrEpstein:* No. All potential recipients for the CI will be vaccinated with the pneumococcal vaccine.* CI recipients of college age may also be vaccinated with the meningococcal vaccine since there is a high incidence of meningococcal meningitis among college age students

that is from:
http://www.agbell.org/news/dre092502.htm

 

[Ziusudra]

I don't know what's true and what's not, but I'd still recommend a meningitis vaccine for implantees anyway just in case. No one I know has ever had that kind of problem with their CIs but still, it's best to be on the safe side since meningitis is dangerous.

 

[Oceanbreeze]

The vaccine I was given was the meningicochal vaccine...not sure about the spelling but it was something along those lines.

Malfoyish

Thanks, Malfoyish! And, I'm not even gonna try spelling it. I'll butcher it! lol But, the next time you see your PCP, ask him to give you a pneumococchal vaccine. That should give you protection against strep. See, you SHOULD have been told that the vaccine ONLY protects against THAT TYPE of meningitis, and there's FOUR types. Two are rare, and, mostly affect children. The other two, meningiococchal and pneumococchal, affect adults. I would advice getting the pneumo vaccine, because, strep is the main cause of ear infections and such. And, since it's the ear infections that we're concerned with here, it would be a good idea to ask your doctor about getting it. Once you've gotten the shot, you are protected from bacterial forms of the disease for life.

 

[Malfoyish]

Thanks, Ocean...will definitely bring it up while I'm in the hospital on Monday...I s'pose it can't hurt...one more little pinch in the form of a shot that would help further strep risks....

Boult - yes, I've decided to go ahead with the re-implantation. Honestly have nothing more to lose, and if putting in a new one might help me more, then why not? I'm going with the Nucleus though...I think I want to give it a shot...they claim that the technology involved with mappings, etc...might benefit me more than the AB, (a little, not much difference in the two...) so...I've based my decision mostly on the fact that the doctor is going in anyway to remove the positioner and there IS a more updated model of CI out there and I'd like to be on the up and up and have as current as possible implant.

I go in on Monday morning, have to be at the hospital at 5:45am, and since I have medicaid, I am going to have to spend the night. Surgery is at 7:30 in the morning, so I guess I'll be spending the day resting, yelling at nurses, that kind of thing...

And yes, Meningitis is deadly. I was lucky.

Malfoyish

 

[Oceanbreeze]

Thanks, Ocean...will definitely bring it up while I'm in the hospital on Monday...I s'pose it can't hurt...one more little pinch in the form of a shot that would help further strep risks....

Boult - yes, I've decided to go ahead with the re-implantation. Honestly have nothing more to lose, and if putting in a new one might help me more, then why not? I'm going with the Nucleus though...I think I want to give it a shot...they claim that the technology involved with mappings, etc...might benefit me more than the AB, (a little, not much difference in the two...) so...I've based my decision mostly on the fact that the doctor is going in anyway to remove the positioner and there IS a more updated model of CI out there and I'd like to be on the up and up and have as current as possible implant.

I go in on Monday morning, have to be at the hospital at 5:45am, and since I have medicaid, I am going to have to spend the night. Surgery is at 7:30 in the morning, so I guess I'll be spending the day resting, yelling at nurses, that kind of thing...

And yes, Meningitis is deadly. I was lucky.

Malfoyish

Malfoyish,

Good! Btw, the shot won't prevent you from getting infections. You'll STILL get them (things like sinus infections, and ear infections), but the shot SHOULD keep the stuff from going to your brain again. You could still be susceptible to viruses, but from what I gather, viral infections USUALLY aren't as nasty. And, I hope all goes well tomorrow! You'll be in my thoughts.