Re: Morquio Syndrome, cochlear implants and migraines

[Guest guest]

I had a CI done in July of last year, and was activated in August. It was

definitely the right choice for me; like you, my loss was progressive, and

having grown up with some hearing made it relatively easy to adjust to the

implant. It was an adjustment, though; it took about a week before I was

getting something coherent out of the implant, and it's still not entirely

natural sounding (though it hasn't stopped improving, and I'm definitely getting

more information out of it than I did with a hearing aid pre-implant). I only

did about a week of auditory therapy; some people with our history do more, some

do none at all, so it really does vary. If your speech production and

perception are pretty good now, you probably won't need a lot. My therapist

told me that a lot of training is just done at home by the user, and that

certainly ended up being the case for me. When I had it done, I was just over

the border into profound (SRTs of 100 dB) in both ears; I have the CI on my

right side, which had lower speech scores, and a hearing aid on my left.

For me, the anesthesia was tricky; we tried to do an intubation under sedation

(with an endoscope), but weren't able to use enough lidocaine to override my gag

reflex without running into potentially toxic levels for the rest of my body.

On the second try, the anesthesiologist had me pre-breathe O2 to saturate my

blood, giving him more time to do a more traditional intubation without worrying

that I'd run out of air, and we had an ENT standing by to do an emergency

tracheotomy if it became necessary. So I would definitely discuss that with the

surgeon, and consider asking to talk to the anesthesiologist while you're still

deciding whether or not to do the surgery.

Anyway - welcome! And feel free to email me off-list if you want to talk more

about CIs or Morquio.

Ian

On Sat, Mar 22, 2008 at 09:07:54PM -0000, violinmemories wrote:

> Hello:

> I am new to this board, my name is Meredith, I am 29 years old, and

> have Morquio Syndrome.

> My question is this, has anyone had a cochlear implant (CI) done? I

> am curious to find out how it went medically. I am profoundly deaf in

> my left ear and borderline severe/profound in my right ear. I was born

> with some degree of hearing loss (sensorineural) and until about 2

> years ago the loss wasn't as significant as it is now.

> My ENT said that I would be a candidate for a CI in the near future

> when my speech discrimination gets worse. I am mainly asking due to

> the anesthesia risks associated with ANY surgery. I do know Ian

> had a CI done but do not know how to get in touch with

> him or his family.

> Also does anyone have headaches so severe that they cause you to

> lose movement on one side of the body? I was told I have hemiplegic

> migraines by a neurologist, matter of fact I've been in rehab

> recovering from it two different times. I get a bad headache on the

> right side of my brain and about 1/2 hour later my left side goes

> completely numb (arm and leg), this lasts for about 3-4 hours,

> afterwards I am very weak and exhausted. I didn't know if anyone knew

> if this is common in dwarfism or not. I've had CT and MRI studies done

> and nothing has turned up. I'm on medication to control the migraines

> and it has helped some.

> I had a spinal fusion done in 2001 by Dr. Kopits, so I'm guessing

> it's not the C-spine as no doctor has told me otherwise.

>

> Any help on either question is appreciated.

>

> Meredith

> - Delaware

>

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