About a year ago I got my voice back after suffering from VCP during 8 month. Now I believe it’s about time to tell my story about suffering from Vocal Cord Paralysis in order to create some awareness about this silent disorder.
Facts about VCP
Vocal cord paralysis is caused by nerve damage
The disease can cause a number of problems including the inability to speak
Choking is a hazard for people with vocal cord paralysis
Most often, only one of the two vocal cords are affected by vocal cord paralysis
Coughs and sneezes may become ineffective, allowing a build up of fluids and possible infections
More females than males develop vocal cord paralysis
Some neurological conditions, such as Parkinson's disease, raise the chances of developing vocal cord paralysis
Voice therapy can help in certain circumstances
Sometimes, no underlying cause for the condition can be found.
*source http://www.medicalnewstoday.com/articles/188993
As it’s been a year obviously I’m not looking for pity or compassion, but just hoping that this short story can help somebody out there in the same situation, because help and advices is not something that come around easily!
Early September 2015 I had one of my daily regular phone calls with my mom. During the call my voice started to change – I couldn’t speak normally, I was not able to raise my voice and some words I couldn’t pronounce. We figured, like everyone else, that I caught a virus. After some weeks still not able to use my voice properly, I went to the doctor. She as well concluded that I had a virus and ordered me not to speak the next 2-3 weeks. You who know me well will know that that is impossible, however I tried to speak less and not raise my voice. Weeks went by and it didn’t help – it got worse! After five weeks I went back to consult my doctor and this time she pushed me on to a throat specialist where I got an appointment the very next day.
Totally ignorant of what I was about to find out I went to a city near by to meet with the specialist. I was really looking forward for him to prescribe me something so that I finally could speak out again – after many weeks with weird looks, questions and a hell lots of “could you please repeat”, “what – could you speak up” and “wow, someone was out late last night”, I figured it was about time to make it go away – or make it come back is more the right term to use.
The specialist look and listened, scanned my throat and chest and finally he put a tube with a camera down my nose to have a look of what was going on in my throat. The message was clear. My left vocal cord was 100% paralyzed. This was actually the very first time in my life I was thinking about my vocal cords and their function. Little did I know that my vocal cords was about to be my entire life for the next 8 month or so. Such a tiny thing in my body, but with such a huge impact on your life.
I asked the specialist what his plan was in order to “fix” me – still very confident that he could do something – I mean, that is why we go to the specialist in the first place, right? Never had I imagined that he arrange blood test at the local hospital the same week and told me that they would take over. Take over? Take over what? Me? Why? I just wanted my voice back! My million dollar question “what is wrong with me?”. He looked at me and explained me not to worry because I was so young. Believe me, THEN you really start to worry! He said it might be nothing, but we have to check for tumors in my lungs and in my brain.
Causes for VCP
Certain neurological conditions: people with multiple sclerosis (MS), Parkinson's disease, or myasthenia gravis have a higher risk of developing vocal cord paralysis, compared to other individuals. The risk of vocal cord weakness is greater than paralysis
Injury to the chest or neck: a trauma may damage the nerves that serve the vocal cords or the larynx
Stroke: the part of the brain that sends messages to the larynx (voice box) may be damaged from a stroke
Tumors: these may develop around or in the cartilages, nerves or muscles of the voice box. The tumors may be benign or malignant (cancerous)
Inflammation or scarring of the vocal cord joints: as well as the space between the two vocal cord cartilages may prevent the larynx from working properly. Although the cord nerves are usually working correctly, the inflammation can give vocal cord paralysis-like signs and symptoms. Some infections may also cause inflammation.
Some types of surgery: especially chest or throat surgery. Breathing tubes used in surgery may damage vocal cord nerved. Cardiac surgery represents a risk to normal voice function as the nerves serving the larynx are routed near the heart - damage to this nerve during open heart surgery is not uncommon. The recurrent laryngeal nerve also runs close to the thyroid gland making, hoarseness of voice due to partial paralysis an important side effect of thyroid surgery
Vocal cord paralysis may also be idiopathic - there may be no identifiable cause.
*source http://www.medicalnewstoday.com/articles/188993
On my way home from the specialist I was in a stage of shock. Scared as well. I guess the word tumor freaks out even the toughest person. I phoned a few of my dearest friends who knew I was going to see the specialist – however I didn’t call my parents. None of them where in Denmark at this time, and I didn’t want to worry them. And to be rather fair, nothing was wrong with me – yet.
I only got more hysterical when the specialist called me a few hours later and asked me to go the University hospital, a much larger hospital an hour away, to get the blood test done the very next day instead of our local hospital. I checked in the next day and suddenly I was marked as a priority patient categorized to be treated as the acute Danish cancer package prescribes it. I was dead! At least in my own illogical head I was already dead, planning my own funeral and all that… I mean who survive lung or brain cancer?
By the way, my mom went with me to the hospital. I called my parents later that same night and my dad was already on the first ferry home after we finished our call.
Blood test got done and I was scheduled to have a MRI and PET scan the day after. This was Wednesday and I had to wait for the results until Monday. Hell of a weekend!
Monday came and all my results got back clear. Nothing was wrong with me except the fact that I still was missing my voice. The doctors seemed satisfied and I were very relieved. Only a standard procedure was scheduled for a few days later to doublet check the MRI picture with human eyes, so I was put into anesthesia so they could “go have a look”. All clear once again! Happy faces all over! The doctors did their job. They diagnosed me with VCP for unknown reasons - Vocal cord paralysis may also be idiopathic - there may be no identifiable cause – that’s me, no identifiable cause. They kept questioning me for stress or a trauma, maybe I felt of my bike of something that could explain why this suddenly happened. I so rarely use the bike that I’m sure I would have remembered something like that J I was told by the doctors to be happy for the fact that I was healthy. I was going to be handed over to a speaking therapist who would help me learn to speak with me limited vocal. Checkups every third month with new scans and only time could tell what would happen. If nothing were to improve in 8-12 month a surgery could be a possibility;
Surgery - if the patient does not recover completely with voice therapy, the doctor may recommend surgical intervention:
Bulk injection - the vocal cord muscle will most likely be weak due to paralysis of the nerve. The otolaryngologist (ear, nose and throat specialist doctor) may inject fat, collagen or some filler into the vocal cord. The extra bulk brings the vocal cord nearer to the middle of the larynx (voice box), making it easier for the opposite cord muscle to move effectively when the patient coughs, swallows or speaks.
Phonosurgery (vocal cord repositioning) - this operation repositions and/or reshapes the vocal fold (cord) to improve voice functions.
Tracheotomy - if both vocal folds (cords) are affected and very close to each other, breathing will be more difficult because of decreased air flow. The doctor makes an incision (cut) in front of the neck and an opening is created into the trachea (windpipe). A breathing tube is inserted so that the patient can breathe with air bypassing the paralyzed vocal cords. Put simply, the patient breathes through a hole in the neck because the opening in the larynx is too small for proper breathing.
*http://www.medicalnewstoday.com/articles/188993
For a week or so I was happy about the fact that I was healthy. But somehow it didn’t seem right that I should accept this condition. Not being able to use your voice properly is more difficult than you can ever imagine. I believe the impact is very individual, but for me the physical consequences were finding it difficult to breathe, not being able to catch my breath – just walking would be hard on me, I was not able to speak up loud, some letters I simply couldn’t pronounce, and as my left vocal cord had got stuck in a curtain way I used tremendous lot of air just saying a few words, so I got extremely tired all the time.
All of this affected my mental psyche in a way that no one who has not been in the same situation would ever understand. You start to isolate yourself because talking is such a burden, so it’s easier to not be around people. If you do need to get out for a social event or work, you make sure to be seated at the end of the table as making conversations across the table is impossible. You can’t speak in a place filled with people as there is no way that you can exaggerate their noise. You get anxiety and are anxious to speak because you fear you will choke in your own words or lose your voice completely.
Thanks to my very persistent mom who refused to settle with the situation and the fact that the doctors couldn’t do more or recommend something else to be done, we started seeking for alternative treatment. Twice a week I saw the speaking therapist who taught me the ABC again and gave loads of homework to train my vocal cord, on top of that I saw a craniosacral therapist, a masseur and a myocardial therapist.
I don’t have an exact date for the return of my voice, I’m told that it got back bit by bit. Suddenly one day it was back to normal. It’s difficult to hear yourself so the people around me nicely reminded me that it for sure was getting better (sometimes that was a pain too, as you don’t hear the small changes yourself).
It seems like I suffer from very tight muscles. Somehow my muscles pushes the nerves and that’s why my vocal cord seems to get out of order. Today, a year later and even though I have recovered and the doctors have declared that my vocal cord is 100% back in function, I still suffer from very tight muscles in my throat, jaw and chest which can give me breathing and swallow issues.
I still see a therapist at least once a week, preferably two if times allow it.
… But I’m healthy, I have my voice and the rest I have come to accept.
I wish that someone would have told me about the possibilities of the therapy. I’m 100% sure that that is what gave me back my voice. At least I can say that I did all I could, even in case that I hadn’t got my voice back. I also wish that someone would have recommend me to see a psychologist, I’m sure talking to someone from outside would have helped me a great deal.
If someone out there suffers from the same as me, VCP without any cause, please believe that your voice will come back! Keep doing the training from the speaking therapist, keep going to see the alternative therapists. Do it even though it seems like nothing happens. It will get better, your voice will come back!
So to answer my own question, yes, VCP is a real illness. You might not suffer from VCP due illness, but if you do not take care of yourself it can damage your psyche.
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A massive thanks to those who helped me through this period of my life – you know who you are <3
Please share if you know someone suffering from Vocal Cord Paralysis.
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Vibe Borregaard Madsen
April 2017