i had mvd surgery more than 10 years ago. when I woke up from surgery I started having choking spasms. I've had them ever since - often frequently throughout the day, and even in my sleep. they've been getting worse lately, and I'm worried I will at the least pass out (or worse). has anyone else had this? it feels like I'm taking a karate chop to the throat and I have to gasp and wheeze (for 1-10 minutes) to get a breath. I'm scared since, like I said, it's getting worse, and no doctor has ever given me an explanation or a cure. it used to be an embarrassment and a nuisance, but now I am honestly afraid it's going to kill me, and I don't know where to get help. if anyone can tell me anything at all about having the same experience, or better yet how to get help, you would be my hero.
michele, that's sounds awful.
i have intense coughing jags since mvd but what you describe sounds far worse and terrifying. you need to see a neurosurgeon with lots of TN/GPN expertise. this condition sucks.
i hope you are able to resolve this. best
Thank you. I appreciate your words of concern... and yes, it does suck. Finding a doctor has been a nightmare for me, and since my diagnosis, many doctors, and even dentists have refused to treat me. I can't believe that doctors discriminate against people who are sick. I used to think that's why they were there. In case anyone else reads this and is going through the same thing, I found an article and video today that describe exactly what I have been going through. It's called a laryngospasm. Although it is comforting to find a name for what I have been suffering, it kills me that, yet again, there isn't much I can do about it.
Here are some references that could be helpful, Michele:
http://www.mdguidelines.com/esophageal-spasm
http://www.mayoclinic.org/diseases-conditions/gerd/expert-answers/laryngospasm/faq-20058269
I hope our members will have feedback for you as well. If you can get someone to video an episode, then the doctors might understand the severity better.
OMG this sounds terrible.
I had my MVD 6 weeks ago and my pain at least doubled and I am really messed up.
After I told my doctors that the pain is much worse since the surgery they more or less sidelined me and tried to put me in the psycho corner. The say it is not possible and I have mental problems … almost like you said, if something goes wrong, doctors refuse to help you.
I have consulted a psychologist, also specialized in chronic pain treatment and she assured me that there is nothing wrong with me and that my pain is based on physical problems.
Well it’s sad but that’s how some doctors are.
sorry I can’t help you with your choking problem, but at least now you know that you are not the only one that is mistreated by your doctors.
regards
Mike
Hi, Yes I have them sometimes but I did not have the surgery. Im to old to have the surgery,
at least thats what I was told 4 years ago, but that was for brain surgery to relieve the pressure.
J
I have had the same side effects that you are talking about after my mvd surgery. I went to a head and neck surgeon and they made me eat some jello and then put a scope in my throat and then they are able to tell that when you are swallowing there is proper airway. It is your Glosso nerve that is causing the spasms. My spasms have been less frequent over the years and you might want to ask your neurosurgeon about anti seizure medicine. They should help you. It is scary because you feel as if you cannot breath and your throat is closing up. Hang in there.
I’m very sorry that you are going through this. Is it possible that your Vagal nerve (X) is affected as well? Mine is affected and for me it causes me to pass out and have difficulty breathing. If it is affected it can be shown by wearing a heart monitor for a day or so. The Vagal regulates breathing and the heart among other things. It can often be affected in addition to the Glossopharyngeal.
Hello Michelle
Did you ever consider a nerve RHIZOTOMY to treat your condition?
Some people hard excelent results. There are risks associated to it but considering your condition you might want to consider it.
The link below describes the procedure "MVD + Nerve Rhizotomy"
http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM#.VCBmeWIaySM
The surgeon at Mayfield clinic is Dr. Mandybur. He will review your case before he invites you for an appointment, so you woun’t waste time and money traveling to Cincinnati in case he can’t help you.
I have not met him in person but he reviewed my case and the colonization with the hospital is straight forward and prices are very reasonable.
by
Mike
dancermom said:
Thank you.
Here are some references that could be helpful, Michele:
http://www.mdguidelines.com/esophageal-spasm
http://www.mayoclinic.org/diseases-conditions/gerd/expert-answers/l...
I hope our members will have feedback for you as well. If you can get someone to video an episode, then the doctors might understand the severity better.
thank you for the suggestion. I read about that many years ago, so I don't recall the details. I will definitely look into it again, and thank you for your suggestion
Mike said:
Hello Michelle
Did you ever consider a nerve RHIZOTOMY to treat your condition?
Some people hard excelent results. There are risks associated to it but considering your condition you might want to consider it.
The link below describes the procedure "MVD + Nerve Rhizotomy"
http://www.mayfieldclinic.com/PE-Glossopharyngeal.HTM#.VCBmeWIaySM
The surgeon at Mayfield clinic is Dr. Mandybur. He will review your case before he invites you for an appointment, so you woun't waste time and money traveling to Cincinnati in case he can't help you.
I have not met him in person but he reviewed my case and the colonization with the hospital is straight forward and prices are very reasonable.
by
Mike
I'm sorry for what you are going through. You have my empathy and my prayers.
Mike said:
OMG this sounds terrible.
I had my MVD 6 weeks ago and my pain at least doubled and I am really messed up.
After I told my doctors that the pain is much worse since the surgery they more or less sidelined me and tried to put me in the psycho corner. The say it is not possible and I have mental problems ... almost like you said, if something goes wrong, doctors refuse to help you.
I have consulted a psychologist, also specialized in chronic pain treatment and she assured me that there is nothing wrong with me and that my pain is based on physical problems.
Well it's sad but that's how some doctors are.
sorry I can't help you with your choking problem, but at least now you know that you are not the only one that is mistreated by your doctors.
regards
Mike
I hope that you're able to find some relief.
Hurts so much said:
Hi, Yes I have them sometimes but I did not have the surgery. Im to old to have the surgery,
at least thats what I was told 4 years ago, but that was for brain surgery to relieve the pressure.
J
Thank you Kim. I tried many meds over the years, but so far none that have helped or that I could tolerate for long. I think I'm going to keep a food diary since my GERD is clearly one of my triggers. I'm also improving my asthma protocol, because allergies and asthma can also be a trigger. Lastly I'm going to try some treatments for coughs. I had a cold a while back and the spasms were happening all night long. It was unbearable. I finally took children's Dimetapp cold and cough, and it made a big difference in the frequency of my choking fits. It had a cough medicine and an allergy medicine, and possibly even a sinus medicine. Anyway, I know there will still be events, I'm just at least trying to limit them in any way possible.
Kim Licht said:
I have had the same side effects that you are talking about after my mvd surgery. I went to a head and neck surgeon and they made me eat some jello and then put a scope in my throat and then they are able to tell that when you are swallowing there is proper airway. It is your Glosso nerve that is causing the spasms. My spasms have been less frequent over the years and you might want to ask your neurosurgeon about anti seizure medicine. They should help you. It is scary because you feel as if you cannot breath and your throat is closing up. Hang in there.
and yes... it is terrifying! I hope things go better for you as well.
Michele Squeo said:
Thank you Kim. I tried many meds over the years, but so far none that have helped or that I could tolerate for long. I think I'm going to keep a food diary since my GERD is clearly one of my triggers. I'm also improving my asthma protocol, because allergies and asthma can also be a trigger. Lastly I'm going to try some treatments for coughs. I had a cold a while back and the spasms were happening all night long. It was unbearable. I finally took children's Dimetapp cold and cough, and it made a big difference in the frequency of my choking fits. It had a cough medicine and an allergy medicine, and possibly even a sinus medicine. Anyway, I know there will still be events, I'm just at least trying to limit them in any way possible.
Kim Licht said:I have had the same side effects that you are talking about after my mvd surgery. I went to a head and neck surgeon and they made me eat some jello and then put a scope in my throat and then they are able to tell that when you are swallowing there is proper airway. It is your Glosso nerve that is causing the spasms. My spasms have been less frequent over the years and you might want to ask your neurosurgeon about anti seizure medicine. They should help you. It is scary because you feel as if you cannot breath and your throat is closing up. Hang in there.
thank you. I wore a heart monitor years ago due to difficulty breathing, but the doctor said it didn't show anything. in the end all the doctors I saw think it's probably the pressure in my throat that makes me feel like it's harder to breathe. I'm thinking the pressure in my ear may be what's giving me dizzy spells too. The problem is what to do about it all?
hmschmom said:
I'm very sorry that you are going through this. Is it possible that your Vagal nerve (X) is affected as well? Mine is affected and for me it causes me to pass out and have difficulty breathing. If it is affected it can be shown by wearing a heart monitor for a day or so. The Vagal regulates breathing and the heart among other things. It can often be affected in addition to the Glossopharyngeal.
I have these too. i'm sue my Vagal is being effected too. My doctors are worthless. I'm afraid too.
I'm sorry for what you're going through. I wish we could all find good doctors and hope.
Malibu1 said:
I have these too. i'm sue my Vagal is being effected too. My doctors are worthless. I'm afraid too.
I finally got confirmation that my Vagal nerve is in fact inflicted too! You need a better Doctor! Keep going! My Doctor left practicing completely (retired) just as it was all getting straighten out, and I have had to fight once again and I am winning MD surgery is happening! Finally on Gloss and Vagal!
I'm reposting this:
One thing that I have learned over these past 9 years of hell is that ALL perfumes, soaps, shampoos, cleaning chemicals, and laundry detergents, laundry softeners etc. all make these Neuralgias far worse, or in fact caused them. I live very green now with non/unscented everything and clean with all basic green products as well as Baby shampoos and Dove unscented soaps etc. etc. Planet and Seventh Generation etc are my best friends. If you take all of these (Society excepted) products out of your life your symptoms will be greatly tamped down and gotten rid of over a period of time. I believe that all of the Chemicals (which are ALL neuro toxins) are the reason that I have neurological Problems...If you read up on the chemicals you use daily you will have answered your own question as to why we are all so sick!
Also if you get new furniture that has formaldehyde (or other Chemicals) Or dyes in new products etc.. in it, with the off gassing of it can cause neuro-toxins and effect the nerves/gloss in your throat and make you choke, because you are now sensitive. Living as green as you possibly can will change some of this. It has for me. It took years to get to understand that Neuro-Toxins that are excepted by society are killing us played a big part in my condition...and we are the canary' in the coal mine so to speak.