bizarre neck enlargement/spasms/vocal cord paralysis/HELP!

[dandee2talk2]

My father in law has been suffering from some bizarre disorder no doctor at Mayo or any other hospital he's been to can diagnose. Here are his symptoms in a nutshell and a little background.
It all started years and years ago with difficulty swallowing. That turned into these "attacks". About 3 years ago, the worsening of symptoms started... he collapsed at work, not breathing. They did an emergency trache. He still has the trache. He has these attacks where his vocal cords paralyze and his neck spasms...his neck quadruples in size..yes...4 times its normal size during these attacks. He has difficulty breathing during these attacks and his face turns red. He's had to be resuscitated 3 times...suffocated to death and brought back to life 3 times from these attacks because they come on suddently. Stimulation seems to bring them on in the form of eating soft foods as that's all he can eat what with the difficulty swallowing. However, they do come on in his sleep and that's very dangerous because he's unaware that the velcro strap on his trache collar comes undone and the trache comes out and he starts to suffocate. Luckily, he's woken up and been able to get his wife to help and call 9-1-1. WE NEED HELP. HE'S SUFFERING AND CURRENTLY IN THE HOSPITAL AFTER HIS 3RD RESUSCITATION. If you can help us...email me at dandee2talk2@charter.net THANKS!

[Tootsie]

What are the doctors saying? Cheerio.

[Boopers]

Hello Dandee2talk2,

This is horrible what your FIL has!!:eek: I do hope that someone here will be able to help in some way. I will keep him and his family in my prayers. Good Luck to you All.

Love,
Linda:)

[illusion129]

I'm sorry I do not have anything useful to say about this but the only thing I can think of to tell you is to possibly have a full allergy series run on your FIL. In my opinion, and I'm in no way a medical doctor, it sounds as if he's having some sort of allergic reaction to something. You mention that they come on in his sleep; I wonder if maybe the detergent used or some sort of perfume/hairspray/ANYthing can be causing it?

I'm sure if it were some meaningless product causing the reaction then the doctors WOULD have trouble finding out what it is. If you do think about it, see if he's had a full allergy work up done anytime recently (say within the past 2 years). Often times allergic reactions can be delayed and he/you may not realize exactly what it is and new allergies can develop at ANY time.

I do wish the best for your FIL because my father has suffered similar (yet nowhere near as severe) episodes before but it's due to him being a 4+ pack a day smoker. I'll be sending good vibes towards your family and be keeping your FIL in my thoughts. Good luck! I hope my insight gave you somewhere to look for answers. -RH

[jcc]

Not sure if this could apply, but I thought it wouldn't hurt to pass this along:

http://cantbreathesuspectvcd.com/

Carol "concerned lady" posts on the Peripheral Neuropathy forum sometimes.

Cara

[concerned lady]

Cara, thanks for posting my website address! I'll contact dandee2talk2 by email, to recommend docs in their area who know about VCD/vocal cord dysfunction.

Dandee, good advice from the others! Please see below, for some ideas, questions, etc., which I'll put in capital letters.

Carol
http://cantbreathesuspectvcd.com

*****************


My father in law has been suffering from some bizarre disorder no doctor at Mayo or any other hospital he's been to can diagnose. Here are his symptoms in a nutshell and a little background.
It all started years and years ago with difficulty swallowing.

HOW OLD IS HE NOW? HOW OLD WAS HE WHEN THE SWALLOWING PROBLEM FIRST STARTED?

DOES HE MAYBE HAVE GASTRIC REFLUX? IF YES, MIGHT HE HAVE ESOPHAGEAL DAMAGE CAUSING SWALLOWING PROBLEMS? IF HE DOES HAVE REFLUX (WHICH CAN BE "SILENT", MEANING, WITHOUT HEARTBURN), MIGHT HE HAVE SOME FOOD PROTEIN "SENSITIVITIES" WHERE CERTAIN INCOMING PROTEINS BOTHER HIS STOMACH, CAUSING REFLUX?

FOLLOW CARA, TO THE "GLUTEN SENSITIVITY/CELIAC DISEASE" FORUM, THAT SHE STARTED, HERE AT BRAINTALK.

WHAT IS A TYPICAL DAY'S DIET (EVERYTHING) THAT HE EATS, DRINKS, SNACKS ON, USES (THAT MIGHT BE SWALLOWED EVEN A LITTLE BIT, SUCH AS TOOTHPASTE, THROAT LOZENGES, COUGH DROPS, ETC.). INCLUDE ALL INGREDIENTS.

WHAT MEDICATIONS IS HE ON, IF ANY? FOR WHAT CONDITIONS? DOES HE HAVE ANY CONDITIONS (EVEN IF NOT TAKING MEDS FOR THESE)?

HAS HE BEEN SEEN BY A GOOD NEUROLOGIST?

WHAT TYPE OF WORK DID HE DO? AS OTHERS MENTIONED, WAS HE MAYBE EXPOSED TO TOXIC (POISONOUS) CHEMICALS, DUSTS, FUMES, MOLDS, BACTERIA, VIRUSES, ETC.?

MIGHT HE HAVE HAD POLIO, WITH A POST POLIO SYNDROME?

DID HE EVER HAVE THE FLU, TAKE FLU SHOTS, ETC.? (THINKING OF POSSIBLE GUILLAIN BARRE SYNDROME HERE)

DID HE GET MILITARY VACCINATIONS EVER (LIKE FOR ANTHRAX, ETC.)?

HAS HE HAD ANY KIND OF OPERATIONS (SURGERIES)? IF YES, WHAT TYPE, AND FOR WHAT REASONS?

HAS HE HAD ANY INJURIES, CAR ACCIDENTS, ETC.?

DOES HE HAVE ANY KIND OF THYROID PROBLEMS? HAS HE SEEN A GOOD ENDOCRINOLOGIST, TO CHECK ON HIS (DUCT-LESS) GLANDS?

HAS HE SEEN A GOOD ENT/ear, nose & throat DOC, WHO SPECIALIZES IN VOCAL CORDS, THROAT, NECK, ETC.? (This type of ENT doc would be a LARYNGOLOGIST).

I AGREE WITH THE IDEA OF POSSIBLE SEVERE ALLERGIC REACTIONS (ANAPHYLAXIS). HAS HE BEEN TESTED TO SEE IF HE HAS A LATEX (RUBBER) ALLERGY? HAS HE SEEN A VERY GOOD ALLERGIST?
_________________________

That turned into these "attacks". About 3 years ago, the worsening of symptoms started... he collapsed at work, not breathing.

WHAT KIND OF WORK? WHAT TIME OF DAY? AFTER EATING A CERTAIN FOOD? AFTER BEING EXPOSED TO BAD AIR QUALITY? WHAT WAS HE DOING AT WORK, AT THAT TIME WHEN THE WORSE SYMPTOMS HAPPENED?

WAS HIS WORKPLACE A NEW BUILDING, OLD BUILDING, BEING REMODELED?

HAS HE SEEN A GOOD PULMONOLOGIST (LUNG DOC)?

DOES HE OR DID HE SMOKE? WAS HE EXPOSED TO SECOND HAND CIGARETTE SMOKE?
__________________________

They did an emergency trache. He still has the trache. He has these attacks where his vocal cords paralyze and his neck spasms...his neck quadruples in size..yes...4 times its normal size during these attacks. He has difficulty breathing during these attacks and his face turns red. He's had to be resuscitated 3 times...suffocated to death and brought back to life 3 times from these attacks because they come on suddently. Stimulation seems to bring them on in the form of eating soft foods as that's all he can eat what with the difficulty swallowing.

THIS MUST BE TERRIBLY FRIGHTENING AND FRUSTRATING FOR HIM AND THE WHOLE FAMILY!

WHAT EXACTLY ARE THE "SOFT FOODS" HE WAS EATING, JUST BEFORE EACH "ATTACK"?

DOES HE EVER CHOKE WHEN SWALLOWING THESE SOFT FOODS? CHOKING CAN LEAD TO VCD ATTACKS, BUT THE CAUSE OF THE CHOKING NEEDS TO BE FIGURED OUT.
______________________________

However, they do come on in his sleep and that's very dangerous because he's unaware that the velcro strap on his trache collar comes undone and the trache comes out and he starts to suffocate. Luckily, he's woken up and been able to get his wife to help and call 9-1-1.

HAS HE BEEN TESTED IN A SLEEP LAB, TO SEE IF HE MIGHT HAVE SLEEP APNEA? I'M GLAD HE'S A SURVIVOR AND A FIGHTER!
________________________________

WE NEED HELP. HE'S SUFFERING AND CURRENTLY IN THE HOSPITAL AFTER HIS 3RD RESUSCITATION. If you can help us...email me at dandee2talk2@charter.net THANKS!

I'LL SEND YOU A PRIVATE EMAIL, SO YOU CAN LET ME KNOW WHAT AREA HE'S IN. I'LL SEND NAMES OF DOCS WHO KNOW SOMETHING ABOUT VCD, IN HIS AREA. DON'T GIVE UP!

CAROL
http://cantbreathesuspectvcd.com

[concerned lady]

Dandee2talk2,

I tried to send you a private email, at your email of:
dandee2talk2@charter.net

and here's the message I got!

Subject: Undeliverable mail for dandee2talk2@charter.net

The following message could not be delivered because the address
dandee2talk2@charter.net was rejected by host charter.net (209.225.8.224).
501 #5.1.1 bad address dandee2talk2@charter.net

Is there a problem with your email address?

Carol
http://cantbreathesuspectvcd.com

[dandee2talk2]

Well, we've been very busy with trips to the hospital and what not. My email address is ddbraun@charter.net. I must have been up too late when I posted the incorrect email address. Sorry about that...I'm really sorry about it because I could have been receiving valuable information from you all out there! Anyone feel free to email me with information.
He's having episodes where if anyone touches his face to wash him, wipe his nose, anything....his facial muscles tense up. It looks like he's trying to suck through a straw really hard when his facial muscles tense up. (for lack of a better description) He gets very very restless and seemingly distressed when he's having a hard time coughing up mucus/breathing. How much of that is psychological from suffocating so many times I don't know, but he says he can't control the involuntary reflexes of his face, etc. He gets very red and sweaty and "antsy".
He has a lot of secretions and although the pneumonia is gone, I suppose it's no different than what we experience after bronchitis, or a bad cold..the lingering cough and mucus thing. It's just hard to bring them up for him because of the trache, etc.
We can't leave him alone, he has to have someone with him 24/7 at the hospital and it's been a month and a half there.
All spasms and "anxiety" are worse at night although not limited to the night time, just more intense..seems worse when laying down...he's on strictly "formula" that's injected through his feeding tube, no food of any kind orally. He was a tool and die maker by profession before forced into retirement because of this illness.
He's never been tested in a sleep lab..I'm assuming because the attacks aren't always when he's sleeping..but apparently sitting up is better for him, but doesn't mean the attacks don't come on even when sitting up.
My husband remembers that when he was a child, he remembers his dad choking on food much easier and more frequently than the average person. It's not the kind of choking where you swallow wrong and it goes "down the wrong tube"...it's more that it won't go down..like weak muscle kinda choking. It just progressed slowly over the years. We assume it has something to do with is paralyzed vocal cords..they just slowly seized up more and more over the years, but we're not sure on that..that's just what it seems like.
The doctors have told us that if he removes his vocal cords everything will go away. I know I'd say yank them out but for some reason they (my in-laws) haven't jumped on it. Which is incredibly frusterating to me. Then again, why do his facial muscles tense up when someone's near him...maybe it's anxiety...like a clausterphia or something.
That's all I can think of for an update or to get more specific. They have been to Mayo and Froedtert Hospital in Milwaukee...and no one can come up with a diagnosis. They think it might be something in the brain stem or the hypothalimus (not sure if I spelled some of these words right). But the infusions he's gotten over the last few years have helped somewhat, his swallowing had improved. A doctor lowered his valium (for some reason) and he had the attack that night that popped the trache out..which lead to the pneumonia, and here we are. But..it does seem like he's gotten worse since being in the hospital with the pneumonia. I'm not sure if he's been going for the infusions and if he's not been, do the effects of the infusions he's gotten over the last couple years wear off that fast?? So many questions, so few doctors it seems that can really help. If yanking his cords out will help for sure, I'd push for them to do it....although I think he's too weak and feable to be able to withstand a surgery right now.
Any information you have please email me... ddbraun@charter.net

[Tootsie]

I have two. The first is, check out alexandertechnique.com and see if this makes sense. The person who developed the technique was an actor who would find himself unable to speak on stage. I've used this for some time, for my own problems.

The second suggestion is ask his doctors if Botox injections might help. It sounds to me as if he has some kind of hypersensitivity to stimuli that cause his facial muscles to seize up. I have heard of a young girl who had some kind of dystonia that caused her jaw muscles to seize and cause intractable pain. She was helped by Botox. This would need to be done periodically and falls into the realm of controlling the symptoms. Cheerio.

[dandee2talk2]

Well, that's the thing...brings up yet another solution that, for some reason, he and his wife (probably more his wife) haven't opted to try. Thanks for posting that reply..it refreshed my memory about that option..I will try to find out why they haven't done that. He did go to a different hospital today and so he's new to them and hopefully they will investigate things more and maybe go over some old options if not come up with some new ones.
Thanks!

[Tootsie]

There is also the concept that even without knowing the cause of all these symptoms, by interfering with the manifestation of them, it reduces the severity and possibly interferes with the mechanism causing them. Does that make sense?

Think of the conditioning response of Pavlov and the dog, salivating. By repeatedly ringing the bell, the dog's response becomes more automatic. If somehow the salivation can be prevented when the bell rang, then perhaps the entire process would be disrupted.

Since this has been such a devastating experience and interfered with his quality of life, I'd be willing to try but of course the decision is up to them. Cheerio.

[fireweed]

someone mentioned dystonia in the jaw - dystonia can occur in all skeletal muscles, which includes in the throat. dysphonia is in the vocal cords, oromandibular dystonia in the jaw, etc - someone mentioned oromandibular dystonia.

just some thoughts - i know a woman locally who has severe spasms in her throat that cause her not to be able to breathe. she has to take o2 with her everywhere. it started from exposure to chemical fumes. she approached me at a clinic once to ask my about my child's dystonia (that covers his whole body) because she had been told her problem was spasms in her throat.

when i saw this post i thought immediately of her. i sure hope the docs figure out something and can help this man - i'm sure it's very scary for him and the family.

two things did strike me about what was posted - the worsening of symptoms at night, and when lying down. these are absolutely true of many people who have movement disorders that make their muscles spasm.

as for botox - it's very tricky in the throat and neck area. you have to have a hot shot botox doc who does this a lot. they will be the first to tell you if they aren't experienced injecting botox into these areas. these doctors can be found through the dmrf - dystonia medical research foundation - here is their website:

http://www.dystonia-foundation.org/

[Tootsie]

Fireweed has excellent advice. The person I mentioned that used the Botox for dystonia had to travel 500 miles to find the specialist to do this. That was several years ago but having fireweed as a resource should help, if they decide to try this option for relief. Cheerio.

[dandee2talk2]

It turns out the first two hospitals he was at was mis-dosing his valium..giving him only 1/3 he was supposed to get!!! He's doing TONS better, and has no spasms for days. Unbelieveable! It doesn't cure him, but he's back to how he was before he entered the hospital almost two months ago. They took some tests the other day and withdrew 3 vials of fluid from the area surrounding the lungs. The nurse said that's double what they get from the average person who gets that done! So, they're trying to figure out why he had that much fluid around his lungs now. Maybe this hospital will figure the whole deal out! Wouldn't that be wonderful! Keep sending info if you have any please! ddbraun@charter.net

[uvamomb]

I'm soooo sorry about your dad, but it brought a couple of things to mind. I have dystonia (where parts of my body literally get stuck). I also have difficulty swallowing and regurgitation of undigested food. One of my problems turned out to be a motility problem of my esophagus, in addition to the dystonia. I also have a member of my Chronic Pain Support Group who can barely talk because the dystonia has hit her vocal cords. For the motility problem (diagnosed by a test on my esophagus ordered by a gastroenterologist) I will be having the lower spinchter of my esophagus opened by botox injections. My friend does water theraphy with very warm water to get her vocal cords moving. I don't know if any of this will help, but i sure hope so. As to his stopping breathing, Esophageal Reflux (severe) can spill over into the lungs and cause tis problem. Maybe you could start with a gastro doc at a teaching hospital.
God bless and keep us informed, please. If you need to talk, please feel free to email me at my personal email uvamomb2007@hotmail.com.

Take care,
Kathy