Paralyzed vocal cord

[rubyc1234]

Has anyone with lung mets suffered from a paralyzed vocal cord? Last fall my voice became very weird and has yet to be fixed. One of the people on the helpline at SHARE had had the same problem years earlier. She told me in her case it was a paralyzed vocal cord because of a nerve being damaged from the lung mets. I have had a phone consultation with an ENT doctor and without seeing me in person he has verified this is the likely cause and it is common with lung mets. They can inject something into the vocal cords to fix it.

[nstonerocks]

My voice also changed on one side, became raspy, and I was told it was probably nerve damage from a chest node that pressed on nerve. I am going to pursue this to make sure there’s no new progression elsewhere. Guess it’s not uncommon. Sigh.

[rubyc1234 in reply to nstonerocks]

Well, it began last fall. When I have to raise my voice I get winded and my voice is changed. Occasionally I choke on water. Apparently that is also common with this. It is not the end of the world but I would like it fixed.

[rubyc1234 in reply to nstonerocks]

How are you doing, in general, after the chemo? Are you still taking chemo?

[nstonerocks in reply to rubyc1234]

Chemo every other week. The perceptible side effect is nausea. Take zofran as needed and try not to go long between meals and snacks. I am not in a good place mentally so I try to stay off this board so as not to infect others. I am getting support. I try not to sit around and mope. Actually vacuumed yesterday and made dinner. Vacuuming is therapeutic and you get to watch the dirt swirl around as you go. The little things in life!

[MacroMom in reply to nstonerocks]

Oh Nancy, I've missed you here. I understand if you really don't have the energy or urge to post, but please know that you are not infecting us. If we only share good news here we'll all be afraid to share when things go badly, and that's when we may need the support the most. Glad to hear that you are getting support other ways. I've never been too fond of vacuuming but cooking is definitely therapeutic for me. Also jigsaw puzzles!

[nstonerocks in reply to MacroMom]

I’ve been thinking of a jig saw puzzle. Any suggestions?

[MacroMom in reply to nstonerocks]

I like Ravensburger puzzles; you can find them online. I like ones that have clearly different areas....that is, not a painting of Monet's water lilies or a country scene that is 80% green! Watch out for puzzle ads on Facebook, lately there are a lot of crappy ones made in China that look like they are in Ravensburger boxes but are cheap knock offs. Post a photo when you are finished!

[rubyc1234 in reply to nstonerocks]

I agree with Macro Mom. I want to hear from you and check the site for you. All of us will have our good news and bad news and we need the support during the bad times.

[Onie54 in reply to nstonerocks]

I’ve missed you here too. You somehow always find the right words to say.....you have a gift and should continue to post, WE will be the ones to help you too. You’ve always been there with great words of comfort and advice on how to handle a situation. Let some of us do that for you ❤️

[nstonerocks in reply to Onie54]

Gee thanks. I’ve been so frazzled. I didn’t want to cast a depressing vibe here. I didn’t realize how bad my anxiety was. I am used to lots of stress besides and before this mbc. I am going to seek better medical management for it. And in a few days I will post on the board an update. Thank you all

[Bestbird]

I'm sorry to hear you're dealing with a paralyzed vocal cord. Mine was paralyzed in 2011 due to a lung met. When my treatment started working my voice came back. But now it's paralyzed again and my scans don't show progression, so we don't know why. As you said, it's possible to get a bulking procedure in the doctor's office that will plump up the paralyzed cord, but it wears off over time. Some people go for voice therapy.

I realize how distressing this can be, and send good wishes!

[rubyc1234 in reply to Bestbird]

Thanks. My voice was fine for a year and a half after the mets diagnosis. I was on treatment when all of a sudden the voice went and has never come back properly. It is troublesome when I try to raise my voice and I get so winded.

[MyMiracle13]

Hello. Yes that has happened to me 2 months after I was diagnosed but before I started Ibrance. Although I have lung mets, the reason why I had the paralyzed vocal cord was due to the mediastinal node pressing on some kind of nerve in my throat. I clearly remember it started May 4, 2018 and got better on July 26, 2018 (my birthday - and it was the best birthday gift ever to have my voice back🙏). On May 4, I woke up and when I started speaking, my voice was raspy then sometimes high pitched. I couldn’t raise my voice and speak loudly. I was so depressed. I went to see an otolaryngologist and he was the one who told me what kind of nerve was pinched. Sorry but I don’t remember anymore what he called it. After I started Ibrance and Faslodex, my voice came back. The otolaryngologist did warn me that the paralyzed vocal cord could come back if the mediastinal node starts growing again.

[rubyc1234 in reply to MyMiracle13]

Thanks for the reply. The problem started last fall and I have yet to see an ENT doctor in person. I was referred to one last November and when I was not called by January my oncology nurse phoned them and they said they had no record of the referral. However, he looked at my scan and decided I needed a thoracic surgeon, not him, as he saw some node in the scan pressing on the trachea. So I saw the thoracic surgeon in March and he was disgusted that the ENT doctor had not looked down my throat but he was sure the problem was as everyone has described, a node pressing on a nerve. So he referred me to another ENT man who he assured me would look down my throat and address the problem. Then came covid so I had a phone consult with him and he is also convinced it is a nerve damaged by the mets. Here I am all these months later with this thing still untreated. Nobody has looked down my throat. Supposedly once covid settles, the receptionist will call me and I will go to the office and he can insert a tube down my nose and visually check the vocal cords.

[MyMiracle13 in reply to rubyc1234]

Yes I had a tube down my throat to confirm that the node was pressing on a nerve. He even told me the name of the nerve which I’ve forgotten now. I was ready to do voice therapy lessons and surgery if I had to but thank God the Ibrance and Fulvestrant worked.

[daniellebrooks13]

Yes, that is exactly true. Or, some women have resolved it by taking vocal lessons and learning to control their voice better.

[rubyc1234]

Hi Danielle

I have talked with you on the SHARE hotline several times about all of this. I am discovering that other women have had the same issue.

Jean from Ontario

[MBCinIowa]

Hi rubyc1234,

I am wondering how your vocal cord treatment turned out? I was just diagnosed today with vocal cord paralysis from the tumor in my mediastinal lymph node pressing on the vocal cord. It has taken 8 months and 6 Docs to get to this point. I'm disappointed my Onc didn't recognize the symptoms.

I have extreme hoarseness, coughing and some difficulty swallowing. I've been on Ibrance for 5 months, but not sure it is working. 1st scan showed some reduction in original spots, but new metastasis appeared. I will get my next scan next month.

I'd like to treat the hoarseness by finding a treatment that works for the cancer, as that seems to have worked for some. I am nervous about treating the vocal cord with the "filler", that it might make the breathing or swallowing worse. Going back for a 2nd appointment tomorrow to find out more.

Hope your treatment has been successful!

MBC ER+, HER2-, Bone Mets, Sept 2020

[rubyc1234 in reply to MBCinIowa]

Here is a summary of my progress to date:It is a long story:

The problem started in the fall 0f 2019. The original referral to the ENT doctor was lost after I had awaited the appt for about 6 months. My nurse said she faxed it and they never received it. That would have been about this time last year. So, the ENT doctor then looked at my latest CT scan in his office and he decided I did not need a referral to him but to a thoracic surgeon as he saw an enlarged lymph node beside my trachea. He thought the lymph node was the cause of my diminished voice. I never saw him in person.

So, I saw a thoracic surgeon who immediately recognized that I have a paralyzed left vocal cord due to the metastases in my lungs which has damaged the nerve going to the vocal cord. So, he referred me to an ENT doctor who was a friend of his and assured me he would look down my throat.

I saw the ENT doctor in late July and he put a scope down my nose to visualize the vocal cords. He verified that the left vocal cord is paralyzed. He has referred me to a joint appointment with a Speech Language Pathologist and Laryngologist at Mount Sinai Hospital in Toronto. Because of covid there is a huge backlog and I am waiting. It could be months.

Meanwhile I have found my own Speech Language Pathologist in Milton and I had my second lesson today. I am not that hopeful these lessons will bring back my voice as I have heard from other women with the same thing it did not help. It seems more beneficial to have Botox injections which help, or they can permanently inject some substance into the vocal cords to fix them.

In summary, for all these appointments not much has happened and I still get very winded when talking.

I have a third voice lesson today.

[MBCinIowa]

Thanks for the information! So sorry to hear about the issues getting appointments (or not getting them!).

I started going to Dr's last summer about the hoarseness, had a referral to an ENT and the ENT office scheduled me with a Physician's Assistant instead of the Dr. She misdiagnosed me as having Acid Reflux. I took acid reflux drugs for 5 months with no changes and then asked for a new referral.

I had an appointment yesterday with an ENT Dr. and as soon as he heard my voice, he knew what it was and that it wasn't acid reflux.

I too have a tumor pressing against the left vocal cord. I'm going to have the procedure called laryngoplasty where he will inject a filler pushing the left vocal cord closer to the right vocal cord, making it easier for the right vocal cord to do the work. He said it will help with my voice and make swallowing and coughing easier. I hope to have the procedure done in about a month. This sounds like the procedure you mention above with botox.

He said it takes 15 minutes and is done while I'm awake with a little anastethic. He said the filler wears off over time, ~ 6 months like botox, so once done I'll have to have it repeated. There is also a permanent fix, but I'll try this first.

It sounded like not a lot of Dr's in my area are willing to do the procedure, and he wasn't sure why, as the treatment has been around a long time.

Good luck with your voice lessons and figuring out the right treatment for you.

[rubyc1234]

Hi Again

That is why this forum is so beneficial. You learn how others with the same issues are being treated. I have now had my 3rd voice lesson and somehow I doubt this is going to do anything. I practise making different sounds after breathing deeply to expand the lower lungs and so what. I see no difference.

People can understand me but it is so exhausting to speak and apparantly air is escaping through that hole all the time. Another woman who uses this site got her voice back some years ago after doing the injectables for a time and then eventually having the permanent fix. When I finally see the laryngologist I hope he does something.

[Thatflowerlady]

Hi I realize I am jumping in here 6 months later but I was wondering how everyone is doing with their vocal cord paralysis? I was over a year before any treatment was done . I recently had collagen injection to the paralyzed cord . It has worked really well but my voice is started to go again . I was told the treatment can last 3 to 6 months . Mine was good for about 7 weeks . It still is not bad all the time but I am assuming it will have to be redone in a few months . I was getting very depressed from the issues and cough ( during Covid I hate to go out in public and scare others )

Has anyone had success with collagen injections and if so how long did yours last ?

Has anyone had the surgery ?

Luann