Frequent swelling on RHS Cochlear Implant site

[Nameeta Patil]

Hello,

My daughter will be 7yrs. old in December, is a bilateral cochlear implant user (Opus2).  She is very well eshtablished in her hearing and speech journey and doing very well in a mainstream school.  Unfortunately her journey has also been marred with niggling issues like LHS reimplant, and RHS implant site having swelling with the slightest of knocks or bumps.  In the last one year she has had five such swellings, most of them have gone with usage of head bandage or stronger magnet and a course of anti-biotics.  One she had to undergo a minor surgery to drain out the fluid.  With all this we came to a conclusion that she needs to wear a protective headband to reduce effect of any impact all day in school.  We tried the Unequal headband, it is a good headband but not a good fit.  We also tried the Forcefield headband which also not a good fit and she had a swelling from an impact with this headband on her!

YAIS, Yorshire Auditory Implant services, Bradford, have always been prompt and efficient in providing us with appointments with Consultants and Audiology for this purpose.  Unfortunately Priyanka seems to be the only one at YAIS going through such an experience.

The problem is there is no protective head gear meant for Cochlear Implant users that can guarantee to reduce impact from knocks, bumps and falls.

As a parent I feel helpless seeing my daughter's spirit dampening after every such swelling episodes.  The last time it happened she said, 'I am jealous of the hearing world who don't have to go through what I have too,  why I am deaf?'?

It would be very helpful to hear from parents who have had such similar experience and to know if there is any other protective head band better suited for this purpose. 

[Mary Beth]

I am sorry to read about your daughter's difficulty.  I hope someone knows of a type of head protection that will help her.

 

if your daughter's falls and head bumps are in any way related to issues with balance, vestibular rehab may help.

Wishing the best for your daughter.

[Ivana Marinac]

Hello and welcome,

Mary Beth made a good point - what is the cause of her constant getting bumps or knocking of her head? I would say this is very unusual situation that you have so many of these episodes. Also, antibiotic does not help in a case of head bump - just in case of infection, but what kind of infection could repeat so much time unless it is kind of intrinsic implantation factors.

[Nameeta Patil]

Thank you for your responses Mary and Ivana.  Most of the bumps have been caused by other children having head on impact during playtime.  Probably one has been due to her falling down.  There is no evidence of her having any balance issues in school or at home.  But will discuss this with the consultant at our next appointment.  Search for the right head protection continues.  Also had suggestions from other parents about using scrum hat and mole skin (this is used under the head coil and also acts as an anti-static.

[Adam]

Nameeta,

have things settled down with your daughter getting bumps on her head. I'm hoping that is the case

adam

[Nameeta Patil]

Hi Adam,

Fingers crossed not had any head injuries.  Thanks for asking.  

Consultant from YAIS (Yorkshire Auditory implant service) confirmed there is nothing invasive can be done about this as there is risk of damaging the implant.  Hopefully things will get better as she grows up.  We have also asked for consultation with paediatrician to rule out any balance issues, as advised by Mary.

Meanwhile she continues to wear the Unequal protective headband all day in school.  Have not found any better solution than this headband.

[Adam]

Thats good news, glad she is settling down a bit with it. Checking for balance issues sounds like a smart thing to do. How is her hearing? 

 

[Nameeta Patil]

Hi Adam,

She is doing fine with her hearing, thanks.

[Adam]

So glad to hear it nameeta, that is awesome news!!

[Ivana Marinac]

So, balance issues has been ruled out? Sometimes, there is a clinical status called a postimplant CI vertigo. Has this been ruled out?


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[Nameeta Patil]

Not yet, our paediatrician appointment is end of April!  Have jotted down the suggestions to ask the consultant about vestibular rehab. and post implant CI vertigo.  Thank you very much for that!

Fingers crossed not had an episode for sometime now.  Wearing the headband all day is helping.  Also her wonderful school, Alwoodley Primary has even planned a specific daily routine to minimise knocks and bumps, that is just out of this world for us.

 

[Nameeta Patil]

Not yet, our paediatrician appointment is end of April!  Have jotted down the suggestions to ask the consultant about vestibular rehab. and post implant CI vertigo.  Thank you very much for that!

Fingers crossed not had an episode for sometime now.  Wearing the headband all day is helping.  Also her wonderful school, Alwoodley Primary has even planned a specific daily routine to minimise knocks and bumps, that is just out of this world for us.

 

[Ivana Marinac]

I would rulled out that at first. [emoji6]
Just to be sure...

It's so lovely that your school acted so supportive. [emoji6]


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