I found an encouraging article abstract today on the Long-term outcome of vocal cord dysfunction.
Of 28 patients contacted 1 month to 5 years after diagnosis with VCD, only two continued to have symptoms. These two were among the small minority of patients who suffered from both spontaneous and exercise-induced VCD.
They also reported that anticholinergic inhalers (of which Spiriva is one type) were effective for some patients with EIVCD (exercise-induced vocal cord dysfunction). Of the 15 EIVCD patients contacted, 6 had achieved success using this method. We still haven’t tried Monkey on this, preferring to see how he does with the breathing and relaxation exercises first. But it’s good to know we have another option to try if that doesn’t work for him.
June 6, 2007 at 12:51 am |
Great blog. I have gained a lot of info from this. Let us know how spiriva works. I think my situation may be similar to your son’s, I am currently seeking a diagnosis for breathing problems.
June 6, 2007 at 2:45 am |
I’m glad I’ve been able to help someone else on this journey!
We haven’t had Monkey try the Spiriva yet. I didn’t want to change too many variables at once, and it seems like the VCD is resolvable in a large percentage of the cases without any medications, which we’d certainly prefer if he doesn’t need it.
Good luck figuring out your situation, and I hope you end up with an easy resolution.
June 8, 2007 at 3:03 am |
[...] things continue this well, we won’t need to try the Spiriva (sorry Val). If he does continue to have attacks when he plays with fewer breaks, then we’ll probably [...]
June 12, 2007 at 11:57 am |
My 16 year old son, who is a high level athlete, has been stuggling with breathing issues since January. We have had xrays, PFTs, PFT while riding Exercise bike, been treated for asthma, allergies, told to talk to a counselor, etc. The last round of tests suggested Exercise induced VCD. Your site is a god send. He had learned the diaphram breathing technique from a therapist which helps somewhat, but he is still far from what he considers “normal”. I just went through my medical records again and he had neck pain for several days before this whole thing started. Does anyone have experience with trauma causing VCD?
June 12, 2007 at 2:34 pm |
Anne, as far as we know, there was no trauma that led up to Monkey’s VCD. Looking back, we can remember a few isolated incidents of him having breathing trouble prior to last year, when things started “in earnest” so we’re not sure when it started exactly.
Based on my blog stats, I’m not sure there are many people reading this blog yet, so I don’t think you’re going get a large number of answers here.
I think I remember reading that VCD can be caused as a result of surgery, so it’s possible that trauma could be a trigger as well.
I would suggest your son try the Inspiratory Muscle Training (search my blog for some links). I’ll be posting my son’s experience with it as we go, but unless the patient has pneumothorax, it’s no-risk, drug-free, can’t hurt kind of thing, so you’d only be out the $40 to buy the device, and possibly the cost of a couple of PT appointments if you can find a PT to teach you the methods. It’s also supposed to have endurance benefits for athletes anyhow, so as a high-level athlete, your son would probably benefit even if it doesn’t fully resolve his breathing problems.
Good luck, and I hope you stay in touch. I know how frustrating this can be for your son and probably also yourself.
July 28, 2007 at 5:55 pm |
Hi to all on this helpful blog,
My husband had VCD in 1998, and I had VCD in 2000. We were each diagnosed at Nat’l Jewish Medical & Research Center, in Denver, Colorado.
After we both conquered our VCD (by finding our several causes, & eliminating most of our causes), I made a website, called “Can’t Breathe? Suspect Vocal Cord Dysfunction!”. Here’s a link to the home page webpage:
http://cantbreathesuspectvcd.com
Our causes included a high up type of gastric reflux called LPR/laryngo-pharyngeal reflux (due to stomach reactions to certain incoming foods like gluten, milk proteins, etc., & other factors), and air quality problems we had in our home (mold, dry air, etc.), and in my husband’s work (used to be a painter, now does drywall).
Please take a look. You’ll find a lot that you didn’t even know you wanted to know, about VCD.
My website info comes from my husband’s and my personal experiences with having had VCD (in 1998 & 2000), phone & email feedback from MANY VCD patients (from 2001 to the present–July, 2007), 3 VCD conferences that I attended, given by Nat’l Jewish, since I am a former RN/registered nurse, physicians (including one who himself had severe VCD), nurses (including some who experienced VCD themselves), speech pathologists, respiratory therapists, an EMT (emergency medical technician) whose sister’s badly functioning gall bladder was removed, thereby improving her VCD, and others.
Over the years, since 2001, I’ve found many possible underlying causes of VCD, that can often be missed, even by good, well meaning docs! I include these, in my website.
I hope this will give food for thought, hope, and useful information, to everyone on this nice blog!
Never give up! And always keep asking questions!
Sincerely,
Carol
http://cantbreathesuspectvcd.com
July 28, 2007 at 6:21 pm |
Carol,
Thanks for writing. Your site was one of the first VCD sites that I ever found. I have not linked it here before now because I found it very scary, to be honest, mainly because of your emphasis on calling 911 immediately for every attack. I realize that an abundance of caution is wise to keep people safe, but it makes the condition seem much scarier than is warranted in most cases, IMO. At least in my son’s case, his difficulty breathing was never serious enough to warrant an ER visit, and even before he learned to control it properly, would resolve on his own after a while if he sat down and relaxed. Since relaxation is so important to conquering VCD, I felt the alarmist tone of your website could be counter-productive to many people. But indeed it does contain a wealth of information and references, and may well contain some nugget of information that will provide the key to someone figuring out their situation.
July 28, 2007 at 7:03 pm |
Dear Lioness,
I understand what you said, and I respect your negative reaction to my “nervous Nellie” (erring on the side of caution) part of my website (webpage 4).
I emphasize calling 911, mostly for people who have not been FULLY & ACCURATELY diagnosed yet, &/or, where MORE than VCD may be going on (a non-VCD condition, instead of VCD, or along with VCD).
—————–
I have 12 webpages in my website, with lots of updates, that I’ve added (and am still adding) over the years. I’d love to hear your feedback, if you can read the rest of the website, when you can.
——————
I’ve just added gluten-free, milk-free tips, because avoiding certain proteins has helped many people to more quickly conquer their VCD, when food protein sensitivities are a factor, leading to reflux, (especially during strenuous exercise), causing VCD attacks. See Appendix E, on webpage 10.
A teenager in Norway, for example, recently tried keeping a detailed food diary for a couple of weeks, found what foods were worsening her reflux, avoided those foods, and was amazed to find her exercise associated VCD gone within a couple of weeks!
I’ll be adding info on keeping a total diary, for a week or so, to my website, in the near future.
Thanks for sharing helpful info on this blog!
Sincerely,
Carol
http://cantbreathesuspectvcd.com
July 28, 2007 at 8:57 pm |
Anne,
I agree with the great advice you got from Lioness!
You wrote this about your 16 year old athletic son:
“….I just went through my medical records again and he [son] had neck pain for several days before this whole thing started. Does anyone have experience with trauma causing VCD?
I’m glad you noticed this, because THIS SYMPTOM OF NECK PAIN MAY BE VERY SIGNIFICANT! My answer is YES, trauma CAN be involved with causing VCD, but (there’s always a but!)…
First, it may help to find out WHAT MAY HAVE CAUSED HIS NECK PAIN. Has this been investigated, yet, by seeing a great LARYNGOLOGIST? (ENT/ear, nose, throat doc, who specializes in NECK, VOCAL CORDS, throat, etc.)
WHERE exactly in his neck was the neck pain? What type of pain? (please describe) Constant? Intermittent? Only when moving in certain ways? On one side only? Does your son have any ideas, himself, about some possible cause(s) of his neck pain? Does he still have neck pain now?
Other specialist DOCS in addition to a great laryngologist, who might be needed to diagnose the causes of that neck pain, could include an orthopedic doc, neurologist, endocrinologist (gland doc), gastroenterologist, etc.
What SPORTS does your athlete son do?
Did your son ever have:
– any HEAD OR NECK injuries (if yes, from what? “neck torsion/twisting injury” from a car accident? any sports injury? any hard object hitting his throat, neck, head, etc.? a fall? any kind of surgery, including dental surgery? other?).
– any infections (viral, bacterial, fungal, etc.), sore throat, colds, upper respiratory infection?
– was he exposed to CHLORINE, at swimming pools?
– BAD AIR QUALITY, in any of his environments? (home, school, WHERE HE DOES HIS STRENUOUS SPORTS, etc.)
– any possible gastric reflux? (reflux may be without heartburn, when it’s the high up kind, that causes a lot of VCD attacks, especially during exercise. Reflux can be acidic OR alkaline OR neutral OR enzyme, etc.
–strains over some time, caused by overuse of some muscles, causing NECK MUSCLE TENSION? This can cause the larynx (voice box) to be pulled out of its normal position, putting extra tension/stress on the vocal cords, making the vocal cords extra “twitchy” (more likely to spasm shut from other VCD causes). See webpages 5 (some causes of VCD), & webpage 10 (ergonomics tips), for more ideas.
–Did your son have BRACES on his teeth? Sometimes, a bad braces job, can cause TMJ/temporo mandibular joint problems (jaw problems–like a bad bite), that can lead to neck muscle tension, which promotes VCD.
– Was you son taking any medications, and if yes, which meds, & for what conditions?
– Read about HGM/heterotopic gastric mucosa (see webpage 5, in the gastric reflux sections), where stomach type cells are located OUTSIDE the stomach, causing symptoms from the acid coming up into the throat & then sinuses, vocal cords, lungs, etc.! A very experienced gastroenterologist (stomach/digestive system doc) could find out if he had this or not.
–See my website (webpages 4, 5, 3, 2, 10, 9, links, etc.), for lists & descriptions of possible causes of VCD.
Good luck to you and everyone, on this helpful blog!
Sincerely,
Carol
http://cantbreathesuspectvcd.com
July 28, 2007 at 9:43 pm |
Carol,
One comment I have on your website is that I think you may be out of date with respect to how many doctors, etc. are familiar with VCD. I was worried, based on your site, that we’d have to travel to Denver to find qualified help for my son. The Lung Line was not able to give me a pointer to anyone in my area who they could recommend. Yet we found many qualified practitioners right here at home.
I live in a rural area (in New England), yet our regular pediatrician suspected VCD immediately when I first brought Monkey in with what we thought was asthma. The pediatric pulmonologist he sent us to was of course quite familiar with VCD (although based on my son’s spirometry at the time, he initially felt my son’s symptoms were mostly caused by asthma, though we kept open the possibility of VCD at that time). I worried that we would not find a competent speech therapist here, but the speech therapist we were referred to, again in our small rural town, was very familiar with it and has treated many individuals. The speech therapy student who participated in one of our sessions had just had a class session on VCD. I think awareness of this condition is greatly improved from what you seem to be representing.
And, I think this is important, because fear of not being able to find competent treatment was also something that weighed on me as it became more and more clear that we were most likely dealing with VCD.
I agree that if you needed to see a gastroenterologist or other specialist to diagnose something that might be an underlying cause of VCD, it might be harder to find doctors in these “outlying” areas who were knowledgeable about VCD, but in those cases, it also wouldn’t be necessary for them to be experts on the VCD, IMO. What you would need from them would be a diagnosis and treatment plan for your underlying disorder.
I do think that people dealing with VCD may find helpful nuggets in your sections on underlying causes and tips on how to deal with them.
But I will reiterate that because of the alarmist tone of the “surviving” VCD attacks pages, I made every effort to keep my mother the heck away from your site when I first told her that we thought we were honing in on a VCD diagnosis for Monkey. She was already sure that her grandson was going to drop dead on the soccer field at any time, and your site would have certainly panicked her. I sent her instead to National Jewish’s Page on VCD as a place to start.
July 28, 2007 at 11:58 pm |
Dear Lioness,
Thank you for your kind words about parts of my website, along with your honest reactions to the scarier parts!
I’m glad you were able to find a VCD-knowledgable pediatrician, right away, in New England! If you email me privately, I would be happy to put the ped’s name into my lists of VCD-savvy docs (in whatever state you are in, in New England). Email me at fsds@rkymtnhi.com
I agree with you, that happily, many more docs now know about VCD, than did formerly.
However, from emails I still get, it appears that there are still some docs out there who don’t yet know a lot about VCD, or, who think it’s “all in one’s head”, or, who don’t push hard enough to refer patients to specialists, in order to get the patients fully & accurately diagnosed.
One of my main goals, is to recommend names of doctors to patients or parents, who haven’t been as lucky as you have, when they contact me, when they tell me that they haven’t yet found VCD-knowledgable docs in their areas!
I don’t think that everyone needs to go to Nat’l Jewish, although they are excellent (and kind), and they diagnosed my hubby and me (but that was back in 1998 & 2000). That’s the parent’s or patients’ choice, like if it’s a complicated case, that local docs haven’t been able to solve.
I get names of VCD-savvy docs, from both a voice forum (sid3voice listserve) and Nat’l Jewish, and I urge people to contact both), that I share with patients who contact me.
I also add names of VCD-knowledgable docs to my lists, as people tell me they like them!
My “alarmist tone” (mainly on webpage 4), came after a reality check, a few years ago, when a VCD patient died, because no-one suspected (until it was too late) that more was happening to him, than just VCD.
Although sometimes annoying and scary to some (I apologize for this), I prefer to at least alert parents and patients who look at my website, that if they or their children are having SEVERE breathing problems, requiring going to an ER (or which involves passing out), that in my opinion, they should assume that some breathing problems can be potentially life-threatening, until proven otherwise, taking into account each individual’s case.
Patients who have contacted me, were generally relieved when they saw that I took their fears of dying seriously, and when I urged them to see VCD-knowledgable docs, as soon as possible, and not to hesitate to get to an ER, for severe breathing problems (to be safe).
At the second of 3 VCD Conferences that I attended (in 2003), a question from the attendees (audience) came up, of what they should tell their VCD patients, who asked the question: “Can I die from VCD”?
You can imagine the intensely controversial discussion that took place! One ENT doctor in the audience, said it was theoretically possible that the vocal cords might not open up (in a VCD patient who had fainted/passed out in a severe VCD attack), until it was too late, and the patient had expired. (whoa! controversial!)
The speakers shushed this doctor bigtime, because they were worried about the possibility of drivers’ licenses not being issued to VCD patients, similar to the situation with epilepsy patients.
So, to ensure survival in some severe cases, I decided that it’s better for my website to warn people in advance, to lose any people.
Lioness, since you realize that your child’s VCD attacks are not severe enough to ever require an ER visit, you can ignore my warnings, if you choose to, as can anyone else.
In severe cases of VCD (where people pass out, for example), I do recommend that they not be alone (until they are fully & accurately diagnosed and have cured or learned how to completely control the VCD), so that if fainting/passing out occurs– in for example, a swimming pool (this has happened, with a rescue needed), lake, ocean, etc., or while driving (this has happened, with an accident resulting), another person can rescue the patient, before injury or worse takes place.
Regarding your athletic son’s situation: Might he have a not yet discovered food protein sensitivity, that contributes to reflux (as does strenuous exercise), resulting in VCD attacks during exercise? See http://www.finerhealth.com which is Dr. Fine’s “EnteroLab” website, all about various food protein sensitivities, which can cause or contribute to reflux, leading to VCD.
Might he have a sensitivity (different from allergies) to gluten (in wheat, rye, barley, etc., but rice is gluten-free), milk proteins, etc.?
Good luck to you and to all, who are on this helpful blog!
Sincerely,
Carol
http://cantbreathesuspectvcd.com
July 29, 2007 at 12:38 am |
Carol,
We don’t think my son’s VCD is related to reflux because attention to his breathing and running posture has already cut his attacks down tremendously. We have looked into the reflux angle somewhat “casually” since he does not get any heartburn pain or burning in the throat. I also don’t think he has a protein sensitivity. I think in his case it was a “classic” case of stress over the game combined with tense running posture.
One reason I don’t think there is another physiological problem involved in his case is the fact that he almost never has an attack during a soccer practice, no matter if it is as strenuous as a game or even more. But (before he got things under control) he would have attacks in every game. Now that he has things under control, he rarely has any attacks at all. But, if his team is short on players and has no subs, he will often have an attack in the first 15 minutes of play, just, it seems, from knowing he won’t get any breaks, even though he can play longer than 15 minutes in a regular game with no problems. I would never say it is “all in his head” but in his case, now that he has the posture and breathing under control, his only remaining trigger does seem to be stress about the game.
I should clarify that he is not athletic. He loves soccer but plays at a recreational level. And I think his stress comes from fear of letting his teammates down, since he is not one of the stronger players on the team.
Thanks for sharing your thoughts.
July 29, 2007 at 12:59 am |
Dear Lioness,
It sounds like you have your son’s VCD pretty much under control! Keep doing whatever you are doing. I trust your mom’s gut instincts about your child, who you know better than others do (including docs)!
I’ve been updating my website (did some today, and recently, & will do more soon), so feel free to look in it again, since I appreciate feedback, and to find new info that I’ve learned, that you may find interesting or helpful!
The high up LPR/laryngo pharyngeal reflux, that causes many VCD attacks, usually doesn’t cause heartburn, and, may even be “silent” (without even tasting the acid, etc.), or can be subtle (just tasting a bad taste or bad tasting burp, for example). It may not produce any visible “signs”, for a laryngologist to see, during a laryngoscopy!
I’ve also learned that food protein sensitivities are way more common (like VCD) than was previously thought! (and these can promote or cause reflux!, etc.) Check out Dr. Kenneth Fine’s very interesting and forward thinking (non invasive, too) website, at http://finerhealth.com Fascinating, and helpful!
Well, Lioness (love that name!) thank you for your thoughtful replies, and for helping your son, and for helping others on your great blog!
Sincerely,
Carol
http://cantbreathesuspectvcd.com
September 13, 2007 at 3:45 am |
I was glad to find this web site as I’ve started my own search for assistance. My 14 year old daughter was recently diagnosed with VCD by a pulmonologist. I had taken her there because her pediatrician hadn’t been able to get what we thought was asthma under good control. But we had been puzzled because she described really 2 symptoms-1 her chest feeling tight, which her albuterol inhaler helped, and her throat being tight, which nothing helped. The pulmonologist referred her to a speech therapist who specializes in treating this disorder.
Here’s my question-she is a swimmer and has the most problem when she is swimming butterfly. She gets symptoms at other times that I can recognize as being related to stress (running, when she had a coach that pushed her to keep running, even when she was having trouble breathing-don’t get me started on that!), but it seems like there is something about the stroke itself that causes problems.
From what I have read so far, the focus of treatment is on relaxing the neck and throat muscles, and focusing on abdominal breathing. But the butterfly stroke is counter to all of that-the neck kind has to strain upwards to allow the swimmer to breath air and not water, the inspiration breath is during the maximal effort time, and exhalation during less effort, and the abdominal muscles are actively tensing and relaxing to assist with the dolphin kick. So is a speech therapist going to be able to help with that?? Or would she be better off with a sports trainer?
And, interestingly, she doesn’t really have problems when she swims other strokes, or at least to the same degree, even during competition.
Any thoughts? Does anyone know of anyone in the Phoenix-Scottsdale area who treats this problem?
September 13, 2007 at 12:47 pm |
It does sound like in her case a sports trainer familiar with VCD would be her best bet. The butterfly stroke does sound like a challenge for a VCD patient! However, I think that once your daughter learns how to control the attacks once they start, she will be less afraid of one starting, and that in itself can make them less likely to occur.
I would still keep the speech therapy appointment. Ours was pretty helpful with the sport-specific aspects as well, and even if yours doesn’t have the answers for swimming butterfly, she may be a good bet as far as someone to refer your daughter to a sports trainer who would be appropriate.
Good luck, and I hope you will come back and let us know how she is doing!
September 6, 2008 at 2:11 pm |
Hi, I am 12, and I was just diagnosed with VCD a month ago. It can be really scarry when I have an attack. I’ve been to a speech therapist and I am on Xenox ( not sure if I spelled it right) and these help- most of the time. I was wondering if there’s anything that I can do tho make this go away completley. I am in the 8th grade now and am the only one who can’t stay home alone or anything cause it gets me nervous and I get sick. In like 5 years I will be going to college, and I don’t know if I will be able to go because of my fear association with VCD. Any ideas or suggestion to stop attacks easier or anthing would be really appreciated.
~Arielle
September 6, 2008 at 3:02 pm |
Arielle, I think that once you’ve been dealing with your VCD for a little longer, you will be more confident about being alone. I am confident that it won’t prevent you from going to college! Monkey found that after only a few months of doing the breathing techniques, that he got very good at controlling attacks. Knowing that you can control the attacks will give you confidence and courage. Keep working on the techniques that you learned from the speech therapist — these seem to be the key to long-term control. Also get your parents to help you identify if you have any triggers other than fear, that you can control. Good luck to you!
January 20, 2009 at 1:19 am |
my 11 year old son was diagnosed 2 weeks ago with VCD after having the symptoms for some time. The major attacks are rare and usually brought on by exercise. However, after many doctors and diagnoses of GERD, Gi issues, and incorrect diagnoses of asthma, to parasites — he is not confident that the doctors are on the right track. His main concern is that he has difficulty breathing several times throughout the day where his throat does not close up. He feels like he can’t get enough air even though he can breathe in and out ok. It feels like he has been holding his breath for a long time and just trying to breathe again. He feels like he neds more air than he is getting. He has had x-rays, PFTs, and all are normal. Please help. He is very scared and starting to be afraid to be alone.
January 20, 2009 at 1:31 am |
Elizabeth, a few things:
1) GERD can be a trigger for VCD, so it’s possible that the GERD is a true diagnosis, and is related to the VCD.
2) If he’s feeling like he’s breathing through a straw even if he doesn’t feel like his throat is “closed up” it’s probably a milder attack of the VCD. If he learns breathing techniques, they may be able to help him reverse this.
3) It’s possible that he has asthma in addition to VCD, even with normal-looking PFTs at rest. Check out this post. It is definitely more confusing when they have both!
Until your son gets his breathing under control, it is quite reasonable for him to not want to be alone. It is horribly scary when you can’t breathe!
My son was also very skeptical of the VCD diagnosis, until the first time that he turned around an episode using his breathing exercises!
Best of luck to your son in this journey!
January 21, 2009 at 10:59 am |
Lioness,
My son was so excited that someone actually answered us because he is feeling “scared and very alone” as I mentioned earlier. I thank you for your very good advice. I am learning that this is a very multidimensional problem and one doctor is rarely going to be the way to fix it. We are seeing a speech therapist this week and talking to a counselor about stress, even though he has spontaneous attacks, when they started out when playing tennis or lacrosse.
The anxiousness and anticipation of having attack, not to mention only being in the 5th grade has causaed so much additional stress and fear of an attack that his entire quality of life has been significantly effected. He is afraid to go to the movies, he is afraid to do his sports, he is afraid to hang out with friends if I am not close by. I understand he needs support but he really wants his life back and I think it would be helpful if he could e-mail other kids who not only had large VCD attacks but the new intermittent ones he is having daily.
My son was interested in talking to other kids who have gotten through this — especially the “relax and breathe slowly and you will be ok” parat because as he says, “How can you relax when you can’t breathe and don’t know how bad the breathing attack is going to be?” He wants to listen to mom, but “mom can’t possible understand what it really feels like!”
Thank you again for your great advice.
My son said he wants to help other kids through this journey and difficult path once he is “fixed”.
January 21, 2009 at 2:28 pm |
I don’t think “just relax” is possible. At least with the breathing exercises, they have something constructive to do *while* they try to relax. Also, once it has worked once, it makes a *huge* difference. Because if they know they have a tool that works, it is much less stressful!
My son has only had one or two non-sport attacks during the day. He started having attacks at bedtime about a year ago. These we seem to have gotten under control by getting his allergies better under control — they seemed to be triggered by post-nasal drip when he was lying down.
Although my son’s pattern of attacks is different than your son’s, if your son would like to have an email discussion with a now-15-yo with VCD who has it mostly under control, I’ll ask my son if he would be willing to take part in that exchange (he probably would).
My son was at an age where he was not inclined to listen to me or *anyone* when he started having his attacks! But boy did he turn around the first time the breathing worked.
Best of luck to both of you.