Pages: [1]   Go Down
Print
Author Topic: Hearing hissing and ringing in left ear  (Read 15636 times)
0 Members and 1 Guest are viewing this topic.
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« on: January 10, 2011, 06:07:36 AM »

    Hello Birdbomb!! I do hope everyone had a great holiday.  Over the last 6 months I have noticed a hissing and ringing sound in my left ear. It is always worse late in the day though this mourning I can hear this sound, so today the hissing and ringing will be much much worse by this evening. I am very happy to say that my seizure count average per month is apprx. 20. This is nothing short of a miracle in my eyes considering I was having over 1,100 seizures per year when first diagnosed. The vns is now causing me the pain I have seen and heard others speak of. Aside from the usual hoarseness,cough and shortness of breath now I have strong pain in the space between the left side of my larynx and the first muscle, just left of the larynx. I believe that is the location of the vns lead connection to the nerve. My larynx and that muscle I just mentioned are always tender and painful. Every vns stimulation is painful at the connection site, the pain goes up the left side of my face and I can feel the pain-----every---two---minutes. The pain in my ear is intermittent. I was so happy when it was all just hoarseness and a cough or shortness of breath, that was so minor. Has anyone heard of ear pain from our little friend the vns? Does anyone have a related story they can share about hearing loss/ear pain related to our little friend the vns? I would like to hear back from anyone with your thoughts and feed back on this subject before I make a doctor appointment. Thank you ahead of time. Suspender
Logged
midwestguy
Newbie
*

Karma: +4/-0
Offline Offline

Posts: 36


« Reply #1 on: January 10, 2011, 10:17:58 AM »

Hi suspender. The pain and tenderness that you are describing is very similar to what I am experiencing right now. Do you feel pain in the connection area even when the VNS is not stimulating?  My VNS is turned off, yet I am feeling pain and tenderness in the exact location that you described.

I have not experienced any ringing in my left ear, but I have experienced an ache that feels like it's deep inside the ear.  Right now I'm trying to set up an appointment with a neurologist. Have you experienced any pain or tingling in your left arm? 
Logged
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« Reply #2 on: January 12, 2011, 05:26:49 AM »

   Hi there midwest guy! Thanks for the reply. There is no tingling or pain in left arm or hand but all joints in left hand are continually sore {arthritis I think}. The pain around the connection site is sore all time, like a mild muscle bruise, when the vns is not stimulating. Thanks again for the reply. Suspender.
Logged
Birdbomb
Head Cheese
Administrator
Hero Member
*****

Karma: +9/-1
Offline Offline

Posts: 7791


Head Cheese


WWW
« Reply #3 on: January 16, 2011, 12:34:23 AM »

Hello suspender

First congratulations on the success with your seizure control.  The side effects and discomfort your experiencing is not uncommon but you really shouldn't be having any.  I would suggest you make that appointment and see if adjusting the parameters eliminate most if not all.   The VNS Therapy isn't suppose to be painful and often it's just a minor adjustment needed. 
Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Dispatch
Riding Shotgun
Global Moderators
Hero Member
*****

Karma: +14/-3
Offline Offline

Posts: 2263



« Reply #4 on: January 18, 2011, 12:35:38 AM »

 Grin

VNS isn't supposed to cause pain but it does in some, and it seems to be more and more frequent I am hearing about the throat, neck, and ear pain.  I recall ear pain too, but I also had horrific headaches and think just that alone was causing the ear pain.  When it stimulated, it pushed the headache to awful levels of pain.  YUCK!!!

Please do keep us updated & hope you're hanging in there!  Miliamp and pulse width adjustments may take you back to your comfort zone and you can continue your success with seizure control!

Cool
Logged

VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« Reply #5 on: January 18, 2011, 06:16:37 AM »

Oh Helllllo  no.  I had an appointment last week with an audiologist, she's a doll. I have lost the low and high range of my hearing in both ears, my left is the worst. A hearing aide will not work,hearing aides work best in losses of the mid range. My audiologist, oh baby, has referred me to a neurologist. Oh hell, not another one of those. So I'll see what goes Take care of yourselves. Suspender.
Logged
midwestguy
Newbie
*

Karma: +4/-0
Offline Offline

Posts: 36


« Reply #6 on: February 05, 2011, 07:23:15 PM »

suspender, I was just wondering if there are any updates with your situation?  I've had some pain in my left ear. I haven't really had any hissing, but I have had a couple of spells where I felt as if I was going deaf in my left ear. My hearing has come back each time though.
Logged
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« Reply #7 on: February 08, 2011, 03:12:09 AM »

Hello midwest guy. I have no follow up info yet. I should have said in my post my doc appointment is not until march 3rd. Not giving all of the information to all of you is unfair to you. I appologize. Take care of your selves.
Logged
Birdbomb
Head Cheese
Administrator
Hero Member
*****

Karma: +9/-1
Offline Offline

Posts: 7791


Head Cheese


WWW
« Reply #8 on: February 09, 2011, 03:32:11 AM »

Awww, we just like having you guys around between appointments anyway.  It gives us a chance to get to know you better.   Smiley
Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
Dispatch
Riding Shotgun
Global Moderators
Hero Member
*****

Karma: +14/-3
Offline Offline

Posts: 2263



« Reply #9 on: February 16, 2011, 08:18:12 AM »

 Smiley Awww, yep, our lil internet hang out/coffee shop!  Cheers!

Cool
Logged

VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« Reply #10 on: March 21, 2011, 09:42:35 AM »

    Well hello to all. Sorry for such a late up date. We were on our way to my doc appointment and it started to snow so hard that we stopped at a store and used a pay phone to cancell my doc appointment. That's right we have no cell phone. We did proceed to Seattle via I-5 {no snow there} for my wifes hospital procedure, every thing went fine. It took two days to get home. Two weeks later I did see my epileptologist, she turned down the milliamps and pulse width so now the pain on the left side of my throat muscle, jaw and ear are much less. However if
Logged
Birdbomb
Head Cheese
Administrator
Hero Member
*****

Karma: +9/-1
Offline Offline

Posts: 7791


Head Cheese


WWW
« Reply #11 on: March 22, 2011, 01:36:14 AM »

Payphone?  You still can find them?
Things are a bit better I hope.  It looks like your post went unfinished.
Logged

"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
Electrodes are in me for LIFE!
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« Reply #12 on: March 25, 2011, 04:13:03 AM »

       Yep, I know where the pay phones are on the hill of my little town. All 3 of the pay phones! I saw my post was incomplete and I am certain it was operator error. My doctor had told me if the pain became worse to come back to her office. This Wednesday, 2 days ago, I started doing some very aggressive yard work and worked for 8 hours each day. I had enough branches to fill up the pickup truck twice for two trips to the county compost recycle. You also have to unload your own truck. The first day of the yard work I noticed a bit more soreness in my left throat muscle with each stimulation, and the soreness now feels like a bruise. Today is Friday, the pain is unmistakable, always there and much like before. Here is my question. Is it possible I am stretching the scar tissue that is connected to the lead or the lead connection site. Come on, give me your thoughts on this one, let's rock the boat. I really enjoy a brain teaser. Take good care of yourselves. Suspender
Logged
midwestguy
Newbie
*

Karma: +4/-0
Offline Offline

Posts: 36


« Reply #13 on: March 25, 2011, 09:28:56 AM »

Hi Suspender.  For what it's worth, I had the VNS and lead removed a few weeks ago.  The surgeon told my parents that inside my neck it was red and inflamed.  He told them that he thought my body was trying to reject the lead and it was pulling on the nerve.  The bad news is that I am still having pain, very similar to what you are describing.  I've been taking neurontin which is helping with the pain.

You are now feeling pain even when the device is not stimulating?   
Logged
Dispatch
Riding Shotgun
Global Moderators
Hero Member
*****

Karma: +14/-3
Offline Offline

Posts: 2263



« Reply #14 on: March 25, 2011, 11:59:16 PM »

 Grin Hey suspender!  Rock the boat?  LOL!!!  Let's just tip it over LOL!  My opinion on that one which I can back up with my medical records is yes, the scar tissue can pull apart.

Grin Hey midwestguy!  I'm glad to hear you are having some success with Neurontin.  I so wish the surgeon would have been able to safely remove your coils.  Seems like those are the culprits whether you're body is rejecting the foreign object there or they're too tightly wrapped.

Be well!
Cool
Logged

VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

ALL MY POSTINGS ON THE VNS MESSAGE BOARD ARE NON-TRANSFERABLE
suspender
Newbie
*

Karma: +8/-0
Offline Offline

Posts: 44

Mt. Rainier


« Reply #15 on: March 26, 2011, 05:15:07 AM »

  Hello there midwest guy! Glad to hear the neurontin is helping with the pain after surgery. I am sorry to hear that the site was inflammed though. You asked if I have pain at the lead and nerve connection area even when the stimulation is off. Yes there is pain around that site all the time, it is just like a large bruise. When the stimulation occures it just becomes more noticeable. If I do physical labor of any kind, after I am done, the pain is acute and the pain will stay that way for 3 or 4 days. This is why I asked for feed back from others about scar tissue. I appreciate the potst I got from you and Birdbomb. I am begining to think that, in my case, it will be a trade off. I get to put up with the pain to have fewer seizures. I have also found that if I  turn my head to the right to look over my right shoulder or look up, say into the stars at night, that really causes pain. That "lookong" is pulling on the lead and the pain is 8 on the 0 to 10 scale. This does not seem right. I've given some thought to doing some stretching exercises----not sure though. I would not want to pull the wrong thing and mess up the lead. Well, I'll stop rambling on. It was good to hear from you Midwest guy. Take care of your self. Suspender
Logged
Pages: [1]   Go Up
Print
Jump to: