Hearing loss and CLL

[ohiojim]

I woke up last Friday and found that overnight I went almost deaf in one year. I saw an ENT doc and he said it's probably nerve damage causing me to lose 90% of my hearing in that ear. Other ear seems fine. Is anyone aware of a connection between CCL, Imbruvica (been on it for 11 months), and hearing loss? If so, any treatment that might be effective?

[SeymourB]

Any ear infections or Shingles on that side of the head?

[ohiojim in reply to SeymourB]

No. Both my GP and ENT doc says no infection, no shingles. ENT doc wants to do a series of 4 weekly cortisone shots which he says might help the hearing loss. However, cortisone is supposed to be suspect in interaction with Imbruvica. Waiting for my oncologist to tell me if the cortisone is OK to do with Imbruvica.

[SeymourB in reply to ohiojim]

Any trouble with balance or vertigo? I'm wondering what other nerves might be involved.

Also, I don't find that the 2 ENT's I have seen for hearing loss could not diagnose chronic ear infection unless there is damage, drainage, or swelling visible. That said, a 90% loss is profound, and I would think an infection would have to be serious to cause that. It would have hurt a lot, I would think.

[starsafta in reply to ohiojim]

Have they checked for wax in the ear? In some people, wax hardens, and we might push it deeper into the ear canal if we feel a sensation and scratch. My uncle, who was an ENT, taught us never to put anything in our ears smaller than our elbow -- and not to try to treat it by ourselves with over the counter products.

[Newdawn Administrator]

ohiojim, I'm sorry I have no answers to your hearing problem but I just wanted to say how distressing and miserable this symptom must be for you. I really hope they find a solution to the problem soon.

Newdawn

[ohiojim in reply to Newdawn]

Newdawn, thanks for the kind words. Compared to the CLL diagnosis a year ago, losing hearing in one ear is not a big deal. Nice to know there are others on this forum who can relate and support.

[ygtgo]

I am noticing a problem with my hearing ... the thought of going deaf ( like my father ) and having tinnitus horrifies me ...

It may be an extension of my hyperacusis, but I can no longer tolerate 'normal' levels of sound ... if there are two conflicting noises eg ... someone talking to me whilst the tv is on I can no longer 'filter' out one noise and consentrate on the other ... it is just noise.

Whether it is related to CLL, I have no idea, but in the past 6 months or so I have experienced a 'Glue ear' sensation a few times ... I am a catarrh factory, no cough just catarrh.

I told my GP that I will be needing my hearing tested soon.

ygtgo

[Mijoed]

I had an overnight loss of hearing in one ear which turned out to be eustachion tube disorder (ETD). Initially I could hear nothing. A course of antibiotics cleared up the infection and discomfort but I am left with an occasional "water in the ear" sensation. Just enough to make it difficult to filter out sounds when, for example, the tv is on and someone is talking.

That started at the end of december and persists today. GP comment.....this can take time to clear up completely.

[Corin850]

I lived in a cave in terms of hearing for a couple of months. Grommets fixed it.

[TinyTattooedToes]

This year will be 10 years since my CLL diagnosis at 27 yrs old, w&w, and last year I woke up and had very little hearing in my left ear. Literally overnight, felt very well before it also. Seen various specialists, had ct scans, took a huge amount of steroids and the conclusion was that I had contracted a virus due to my compromised immune system that had caused nerve damage and resulted in the permanent hearing loss. I have adjusted to the hearing loss now a year on, but I work in a nursery and when the 21 3 year olds get worked up and noisy the volume can be overwhelming!! Wishing u all the best with your health

[ucallihaul]

Several years ago before FCR was given, this happened to me and after months of trying to work with the ENT it was useless, however the ONC perscribed a (mega) dose of dexamethasone 4 mg - 87 tabs once a day for four days . He believed that my lymph nodes were so bad and enlarged that this was a possible solution. Within 7 days of completing the drugs, hearing started to return and the expensive hearing aides that I had purchased are still sitting on the shelve

[maggiesgrandmom]

Also a couple of months ago I got severe vertigo while turning my head in bed. It lasted a few days. I also had a slight ear ache but the dr. said there was no infection. But I know there is a meningeal nerve that can have a virus that could cause the vertigo. They said it was crystals in the inner ear most likely. The neck exercises they give you for vertigo helped, or maybe it just went away on its own. Maybe you could look into that nerve infection, could it be related? God bless.

[johnl]

I've had "water in the ear" or "glue ear" that caused hearing loss they say it's because the sinuses aren't draining. I wondered if a neck node might be pressing on the drainage tube. Anyway, they tried antibodics then steroids and finally drained it with a needle and put in a tube. Four months later the tube clogged and now I'm using eardrops (draino?) to try to clear it. It's been about 5 days, but seems to be working. However sometimes the drops hurt like hell.

john

[Cllcanada Top Poster CURE Hero]

Someone else mentioned this a few months ago... they were on ibrutinib as well.

healthunlocked.com/cllsuppo...

[gardening-girl]

Ohiojim, Severe biateral sudden sensorineural hearing loss (SSHL) was the major presenting symptom of my CLL. It was deemed idiopathic and I was told that hearing would never be restored. My ALC was only about 15K at time of CLL diagnosis and Watch & Wait was recommended. Not satisfied, I found a paper: Leuk Lymphoma. 1993 Feb;9(3):269-71.

Sudden onset deafness as a presenting manifestation of chronic lymphocytic leukemia.

Nageris B, Or R, Hardan I, Polliack A.

which showed that hearing was restored upon chemotherapy. I contacted Dr. Polliack who told me that he had seen three other CLL patients with SSNL whose hearing was restored upon chemotherapy. I presented that information to my oncologist who then agreed to treatment. Within two months of a six month course of fludarabine my hearing was totally restored. In the years since, each CLL relapse has been accompanied by SSHL, and each time hearing has been restored upon treatment. My hearing drops after only a slight increase in CD19/CD5 cells. No explanation, only an observation.

Beth in Tennessee

[JaneSmith_Worcs_UK]

I had a viral infection in the new year and I am on w&w. I completely lost my hearing in both ears. total hearing loss is horrible. I eventually went for an emergency e n t appointment and they spent a long time washing out infected ear tissue. I asked if it could be related to CLL but they did not think so

The hearing is gradually restoring but far from good. It is glue ear for me and at the last appointment I was told it takes far longer with adults. Someone advised me to take plantain tincture. Me hearing began to improve but no idea if it was because of this. No harm in trying. I did post about this Jan/Feb. I can sympathise completely. I do feel like a useless old lady now and it is trying for all concerned.

[Corin850 in reply to JaneSmith_Worcs_UK]

What about grommets

[ohiojim]

Jane, so sorry about your hearing loss in both ears. Having lost the hearing in only one, it's a bit of a worry that I might lose it it the other since I have no idea what is causing it. I am going to seek out another ENT doc for another opinion. Thanks for the feedback. (by the way, the wife and I have driven around England several times on vacations- loved it!)

[ohiojim in reply to ohiojim]

Sorry, I don't know what grommets are.

[francc]

I have hearing loss in both ears. Gradual rather than sudden over the past 10 years and I read very recently that repeated antibiotics are just one of the many possible contributors to hearing loss...and I have had my share unfortunately. —Fran

[jtaeross]

Node swelling causes hearing loss for me.

[JustAGuy]

Your post was quite interesting to me. My CLL diagnosis was actually the result of my trying to find what was causing ear problems (Meniere's-like symptoms). I visited 4 different ENTs. Had various tests. All gave the DX as Meniere's, but having read as much as I could on it. But Meniere's is only a description of the symptoms, not a reason, and mine did not match exactly, so they said "A typical Meniere's".

Before the CLL DX, my gut feeling was there must be some infection. I asked for blood tests and that's how CLL came up.

Even after CLL DX, I have been to an ENT about it, and he says there is no connection between my symptoms and CLL. Also, the hematologist rejects a possible connection. I had an ultrasound and talked to the doctor who performed it, he looked at my neck and saw the lymph nodes, he also said no connection.

But this goes against how I feel inside. I have some lymphatic swelling on the side where my ear is the worst, and it seems to me that when swelling increases, the ear problem increases, and when swelling decreases (it does sometimes) then the ear problem decreases. I am not on treatment, so there is no drug causing this.

Most of the replies to your post seem to describe mostly sudden hearing loss. M ear issues are not sudden loss, but gradual, with increased tinnitus, and inner ear pressure.

Anyway, I sympathize with all of you with hearing loss, I know how you feel. It's difficult to follow conversations, people don't realize why you didn't understand something, and loud noises and commotion are irritating. I have just gotten used to ask a lot of questions till I get it!

[-buster-brown-]

Ohio Jim

When I was on Ibrutinib I had 3 different mornings where I woke up and my ear had been bleeding overnight. I had blood drops all over my pillowcase. This caused me to have sensorneral hearing loss in both ears. I am just border line-to need hearing aides!! Very frustrating. This is one of the side effects Ibrutinib gave me over a 2 year time period. Ibrutinib ended up giving me VT-a heart arrhythmia and that is why I am now getting ready to start Venetoclax. I am only 55 and got diagnosed when 46.