Welcome!
If you’ve arrived here from arielproject.com, congratulations to both of us… that means the website and links are working!
And if you’ve just wandered in, hello! I set up this weblog so people with vocal fold paralysis would have a friendly place to chat, swap stories, and exchange some useful information. You don’t have to join a club to leave a comment; just make yourself at home and talk as much as you’d like.
I’m just learning how to use wordpress, so bear with me as I get going…
…and you can always visit arielproject.com to see what I’m all about.
Thanks for visiting!
Explore posts in the same categories: hello and welcome!
January 8, 2009 at 11:35 pm
Cool.
January 9, 2009 at 12:26 am
Wonderful site!
March 1, 2009 at 10:03 pm
I was happy to have stumbled onto your website. My story is one of irony. I am a speech language pathologist with unilateral vocal fold paralysis. I woke up from a C2-C3 neck fusion surgery with a swollen throat,swallowing difficulty and a horse, whispery,strangled and strained voice. I was so naive then, I thought once my swelling went down my voice and swallowing problems would go away. Unfortunately,my surgery was in July 2008. Since that time, I have been lucky enough to see Dr. Zeitel in Boston,and have had an injection to medialize my fold. My injection was done in Nov. 2008 and it is starting to wear off. I am considering a permanent thyroplasty which requires more surgery. This experience has humbled me, and made me very aware of the feelings involved with communication disorders.
March 2, 2009 at 11:42 am
Robin, thanks for being among the first to post on my new website! My hope is that more people with vocal disabilities will find and use the site, and we’ll be able to help each other out by sharing information, tips, stories and so on.
I remember thinking the same thing you did when I awoke from the surgery that damaged my voice: I’ll be fine in a few days! The process of learning the truth about my condition was painful, and realizing how serious it was really hit hard. As you know, most people do recover from surgical injuries to the laryngeal nerve, but as time passes, the odds of recovery diminish.
As a Speech Pathologist, do you work with other people with VFP? Has your own experience changed the way you advise them about their options?
I’m a fan of the Cymetra injection – it allowed me to return to work and enjoy a cup of coffee without getting half of it in my lungs. I have to say, though, I’m reluctant to get more permanent surgery, like an implant. I don’t know if you’ve read the page about medialization on arielproject.com, but I talk a bit about the breathing difficulties I encountered post-Cymetra. Did you notice stridor when you first got your injection? That really freaked me out, to be honest!
What vocal exercises do you do? My speech pathologist is encouraging me to sing. (Very badly, but who cares?) My recurrent laryngeal nerve is wrecked, but the superior laryngeal nerve seems to be OK, so I’ve got a bit of flexibility and control in the upper register.
I’m really interested to know whether you decide on more surgery or not. When I read your post I said “Not yet! Too soon!” right out loud and startled my husband! You haven’t passed the one-year mark since the original damage. Is there still a chance you could recover?
I hope you keep in touch. I’ll be updating my site as I find the time, and really appreciate the feedback.
March 3, 2009 at 1:10 am
Hello Robin,
I was introduced to Ingrid and this website by a patient of mine.
It is a rather unfortunate irony that your vocal fold paralysis occurred. I know Dr. Zeitel. You are in good hands.
Sincerely,
Kathe Perez
April 4, 2009 at 1:51 am
Great information. Thanks arielproject
I had a horrible experience with Radisse Voice Gel.
No voice at all for 3 months till it wore off.
I am now looking into Cymetra with Dr Woo in NY.
Can anyone shed any light on this subject?
April 4, 2009 at 11:21 am
Larry,
I’m not familiar with Radisse Voice Gel, but I’ll certainly look it up.
I had Cymetra and it helped a lot. I have unilateral vocal fold paralysis due to a damaged recurrent laryngeal nerve on the left side. There is very little chance that the nerve itself will be able to recover, so for me, surgery to give the “dead” vocal cord some volume (no pun intended) was a great way to narrow the gap between the vocal cords and give me louder speech.
If you haven’t already, you could go to http://arielproject.com/site/medialization.html to read about how that works and see before-and-after photos of the vocal cords.
The surgery itself was quick and relatively easy. The narrower airway was difficult to adjust to at first, but well worth it. After a while, the body absorbs some of the Cymetra and the injected cord feels much more natural.
I hope this is helpful! Good luck with your surgery and recovery.
April 10, 2009 at 10:33 am
i had mt thyroid removed 17 months ago adn as a result i have vcp
Having vocal cord damage has been a curse. I have some bad feelings and feel so hurt and angry and frustrated inside. I don’t fell like the same person anymore or the person I was. Through all the things I have had to over come in my life this has been the hardest how can I explain that everything I open my mouth to talk or sing or make a noise a part of me dies because it is not the voice I once had. I sound so different I don’t sound like me anymore
This voice brings me to a place of solitude pain and anguish. Sometimes I just want to disappear and other times well
i have had 3 lots of ;azer aroidnectomies to pne airway to avoid traciotomy ( sorry about spelling)
last sugery i had myamicin applied
i AM IN australia
your web site i sgreat and will read more thanks
April 10, 2009 at 11:29 pm
Tracy, you may feel alone, but you are not. It’s true that friends and family, with healthy voices, can’t possibly understand what you’re going through. It is so difficult to explain VCP to someone who’s never experienced it. The heartbreak of losing the ability to speak or sing is very real. It is devastating. You have every reason to feel anger, sadness; even grief. Others may not realize what you have lost, but you do, every single day. The paralysis never lets you forget: it’s there every time you take a breath, swallow, or try to speak.
But somehow, you have to find a way to survive. As I read your post, I felt such empathy – I wished I could reach half way round the globe and somehow make you smile!
Your challenges are very real. I can tell that you are a courageous person. It takes guts to go through multiple surgeries, and it takes real bravery to get up and face each day with a disability.
Sometimes I get the feeling that my friends and family are bored with my vocal problems. It’s a drag that I can’t socialize in a noisy restaurant or chat at a party. Their lack of understanding makes me want to scream! (If only I could). But then I look at it from their point of view. How could they possibly understand what I’m going through? 16 months ago, I had never heard of VCP, either.
Ingrid
PS you could also check out voicematters.net , which is set up like FaceBook: you can join and chat easily with other people with vocal disabilities.
July 8, 2009 at 11:16 pm
Great news… My left vocal fold began to vibrate on its own after almost 1 year of paresis. My VF injection wore off, but allowed me the time to heal. I am able to speak at a normal loudness and can do some pitch changes. I still sound awful when I sing, but as a Speech Pathologist I know to keep trying. Good Luck and never give up..
July 9, 2009 at 10:08 pm
Robin, that’s fantastic news. You’re right: Never Give Up. In a strange way, your year with paresis was a gift: very few Speech Pathologists have had actual personal experience with a vocal disorder. When you’re working with patients, you know exactly what they’re feeling, and how to help.
I’m so glad you posted this. A family situation pulled me away from work on my website for the last few months, but your update reminded me of how important it is for all of us to keep talking to each other. You overcame your paresis; that means other people could, too. It’s great to get the word out about positive outcomes – all your hard work of trying to regain your voice paid off, and that gives me hope for all of us.
And hey, I know all about singing badly! I do it in the shower every day, mostly because my Speech Pathologist told me it’s good exercise. The neighbors may suffer, but that’s too bad… it makes me feel good and that’s all that counts. Keep on squawking!
Ingrid
November 19, 2009 at 7:19 am
Hi Ingrid and Robin,
I am a speech pathologist too. I have a paralyzed right vocal cord as a result of thyroid surgery in 3/09. I had to retire and applied for disability benefits, but was denied because I make $1,000 a month to supplement my social security. A lawsuit against the general surgeon did not fly because the lawyers could not prove negligence. I am going to wait at least one year post surgery before I consider cymetra or thyroidplasty, to see if I get more spontaneous recovery of my voice. The good news is that being a speech pathologist, I was trained in Vital Stim and have been applying it to my neck 3 times a week with noticeable improvement in my voice. Don’t know if this is a coincidence, or if it is really helping. I was told the right recurrent laryngeal nerve was not cut, but traumatized (neuropraxia). Anyway, I was wondering if anyone else with VFP has experienced the same thing and if there are additional treatments or exercises they found helpful? Also, any comments on how a tens unit compares to NMES? Aloha, Joy Pruitt
November 19, 2009 at 8:35 pm
Dear Joy,
I hope another Speech Pathologist responds to your post – your success with the Vital Stim is pretty amazing. I’m not that familiar with it – is it primarily to treat Dysphagia?
Maybe you’ll be lucky and nerve function will return… I realize that gets less likely the more time passes, but you’re not yet one year post-op. Fingers crossed for you.
You might also post your query on voicematters.net. (it’s like FaceBook for the vocally challenged) The membership is really growing on that site and you have a good chance of reaching another Speech Pathologist with a similar experience to share.
I think your lawsuit result must be fairly typical. VFP is such a common hazard of thyroid surgery that there seems to be a disclaimer protecting surgeons from responsibility. All I know is that I keep hearing from people that it’s very, very hard to sue successfully.
Even after the Cymetra injection, I sometimes have great difficulty speaking. I got laid off earlier this year (that darn economy!) and the few job interviews I’ve had were very challenging. But I’m not ready to try for disability… yet. I’m so sorry to hear that you were denied… how incredibly frustrating.
I hope you fare well. I wish you favorable synkenesis and a great sense of humor – both will serve you well through this ordeal!
All the best,
Ingrid
May 29, 2011 at 2:30 pm
I am very happy to see your website. I was a professional opera singer until I came out of surgery last June with vocal fold paresis. The first voice doc. missed it, so I was not put on prednisone. Voice therapy didn’t work, so on Friday I had a Cymetra injection. I am also having a bit of a hard time breathing.. Has anyone been able to return to singing because of a Cymetra injection? My voicer is terribly raspy right now and I”m actually on 3 days of vocal rest.. Surgery was only 2 days ago, so I’m hoping that this is normal. I would be thrilled if any other singers could let me know if this worked for them. Everyone is so secretive about it and noone will admit to having had it.
many thanks for all of your thoughts and input.
Nicole
May 29, 2011 at 2:34 pm
Larry,
I just had a Cymetra injection with Dr. Woo on 2 days ago. I will let you know how it turns out..
Nicole
June 8, 2011 at 3:14 pm
Dear Nicole,
It’s been over a week since your Cymetra injection – I hope things are going well. Personally, I still notice issues with breathing, two years after my Cymetra injection, but since I’m not a singer it rarely affects my ability to work. You’ve got a lot more at stake!
I wonder if you’d get more responses to your question from some of the folks on the VoiceMatters site? Here’s the link: http://www.voicematters.net/ . It’s kind of like FaceBook for people with vocal issues, injuries, and disabilities. I’ve found it helpful at times, and find it’s good to connect with people who have similar challenges. So few people can understand what you’re going through, and how devastating it really is.
I really wish you the best, and hope you can regain your singing voice.
Ingrid