Living with OPMD

Throat Stretching Procedure

Jersey Girl
65 posts
March 26, 2015 12:22 PM MDT

Today, I started the process needed in order to get my throat stretched. I’ll share a bit after each appointment so that others can hear about the experience.

Today was my first visit to the ENT doc. He sprayed some mist with lydocaine in it up my nose and then, after I was numb, went up my nose and down my throat with a long, skinny scope to make sure there were no growths or obstructions as a first step. I thought it would be horrible but it was just fine. I barely even felt the scope tube going down or coming back up. Even a sissy could easily endure it, lol.

Next week I get the swallowing test and endoscopy where you drink some stuff with dye and then they watch you swallow with some kind of a real time xray machine. This way, they determine whether your swallowing is ineffective enough to warrant the throat stretching procedure.

I’ll provide updates as I march through the process.

Captainjen
8 posts
March 28, 2015 7:10 AM MDT

Hi Jersey Girl

Sending along all my good luck karma your way!

Debbie

Jersey Girl
65 posts
March 28, 2015 9:03 AM MDT

Thank you, Debbie! Have you had one of these prodedures done?

Captainjen
8 posts
March 28, 2015 9:35 AM MDT

Hi Jersey Girl

I have not had this procedure yet but I have recently booked a vacation to Disney World. I made advance reservations at all these wonderful places to eat. I laughly told my husband that I plan to choke my way around the “World” LOL I am hoping to be able to eat these delightful meals without someone having to come up behind me and perform the Heimlich Method on me !!!

Jersey Girl
65 posts
March 28, 2015 10:09 AM MDT

Captainjen,

Oh I sooooo appreciate your sense of humor! I try to stay upbeat as well, and I have a bit of an offbeat sense of humor about my OPMD.

I eat teeny weeny bites when I’m at a restaurant; I just hate having to make awful “hocking” noises to cought stuff up that is stuck in my throat while in public. Its funny, I remember as a teenager thinking that some of the noises my grandparents (and even parents) made while coughing, hacking, sniffing, snorting, etc. etc. were just gross. And now, I’m ONE OF THEM!!! LOL

I’m always on the lookout for good, homemade soup on a menu. Not only do I love soup, but its one thing that I know will go down without a fight! :smiley:

Can you tell us about your trip when you come back? I don’t know if you have any mobility issues, but it would be great to hear about a trip to Disney World through the eyes of someone aware of some of the challenges we OPMD’ers face.

Have a WONDERFUL TIME!!!

Carol

SK
11 posts
April 3, 2015 7:12 PM MDT

LOL! Though this is funny, not being able to swallow is certainly not. I can imagine this throat stretching proceedure will be ‘memorable’!

Captainjen
8 posts
April 4, 2015 7:25 AM MDT

I did not mean to make light of the fact that someone would need this proceedure, I just mentioned my vacation plans because like a lot of us here eating is difficult and at times embarrasing. But I am excited to give it a try anyway because I love Disney and I do not want to ruin my husbands delight at eating at all these wonderful places. To answer Carol’s question on mobility I can walk for miles but I am slower than I used to be. If my husband is not paying attention he will find that I am suddently four feet behind him. My main problem seems to be stairs (going up not down) especially if I am carying anything heavy such as groceries. I can lift my leg up to the next step but it seems that I can’t propell myself forward. I need someone behind me with their hand on the small of my back (or I can take the groceries in one can at a time :slight_smile: Wishing all of you a wonder Spring and for those who celebrate it a Happy Easter!

Debbie

Jersey Girl
65 posts
April 4, 2015 7:52 AM MDT

Oh Debbie, I know you didn’t make light of the procedure. I soooo appreciate someone who can keep a sense of humor about OPMD!

I too, can walk on a level surface for a long time, though slowly and with a rest or two.

I am almost at the same place in terms of stairs. We have four steps into our house from the garage. My husband and I have a deal; if he carries the groceries inside, I put them away. If I stop at the store on my own and have things to carry into the house, I swing them up to the top of the steps,then wait until I myself am up before I pick them up.

My husband jokingly said he should make a bucket on a rope so I can place my things in it and pull them up once I get to the top of the stairs; but I’m not so sure that isn’t an excellent idea!

Jersey Girl

Jersey Girl
65 posts
April 4, 2015 7:59 AM MDT

Yesterday I had the swallowing study. It took about half an hour (with lots of talking about things, in addition to the actual procedure). It was quite easy.

I sat down in front of a machine with a screen. They had a tray in front of me; thick liquid, slightly thinner, and thin. Applesauce, peaches and a graham cracker.

They had me swallow or chew/swallow all of them while they watched on the screen. They said that in a “normal” person the base of the tongue makes a distinct push to get the food down into the esophagus. Mine makes a gentle “bump”.

I have an appointment next week with the ENT to discuss the results and see if the throat dilation is warranted. I am also going to see the speech pathologist who was at the swallow study to get some tongue exercises.

I asked her if the dilation procedure was unpleasant. She said that they give you a twilight medication and that most people find the feeling of pressure in their throat unpleasnt, though they think the results are worth it.

Ummmm, not for this girl. If they don’t give me something to knock me out completely, I don’t know if I’ll do it. If the tongue exercises can help, I’ll put off the dilation for the time being unless they can do it while I’m unconscious. I’m not really a woosie, but I’ve just had so much crap done to me that I avoid unpleasantries like the plague if it is feasible.

Jersey Girl

SK
11 posts
April 4, 2015 8:11 AM MDT

Dear Debbie,

Please know that my answer was not a reprimand, or guilty trip. I was laughing too. I have Sjogrens Syndrome, which robs the body of moisture, so swallowing is pretty tough for us too. Might as well laugh about as much as you can, but knowing the things I’ve personally been through, I cannot imagine the throat stretching is something I’d volunteer for, think I’d choke myself round the world too! Hopefully my humor has not turned too dry or dark. :slight_smile: it’s all good!

Jersey Girl
65 posts
April 9, 2015 7:06 AM MDT

Today is my follow-up with the ENT to discuss the results of my swallowing test.

I’m really interested to hear what he has to say. During my swallowing test, the Speech Pathologist and Radiologist didn’t seem to think my swallowing was too bad.

I don’t agree with that; there is absolutely no question that when I eat “real food” (as opposed to the liquids, applesauce and peaches they gave me during the test) gets stuck and has to come back up so that I can breathe.

I’ll write some more about what the ENT says later.

JG

Jersey Girl
65 posts
April 10, 2015 6:37 AM MDT

The ENT doesn’t feel a dilittation (throat stretch) is the way to go for me right now.

He wants to start conservatively, and directed me to a Speech Therapist who will give me tongue and throat exercises.

As soon as I have that appointment, I will be sure to share those exercises with y’all!

JG

SK
11 posts
April 11, 2015 10:51 AM MDT

I like the sound of that option, don’t you?

Jersey Girl
65 posts
April 11, 2015 12:05 PM MDT

Yes, as long as it is feasible healthwise I think it is a good option, SK. Having been sliced and diced on more than my share of occasion, I certainly don’t want to start with the most radical treatment.

Particularly since Bioblast’s new drug, Cabaletta, has been put on the Fast Track program for FDA approval. I’m going to put off having my eyelids done again as long as I can as well, in the hopes that the drug becomes available to OPMD’ers soon!

JG

Jersey Girl
65 posts
April 30, 2015 9:37 AM MDT

As a follow up to my swallowing study, I saw a Speech Therapist yesterday and she recommended some tongue and swallowing exercises. I thought you all might find these interesting.

Tongue-Hold Exercise:

1.Stick your tongue out as far as comfortable. (The farther out you stick your tongue, the harder it will be to swallow. Don’t push yourself; do what is effortful but not uncomfortable.)
2.Gently use your front teeth to hold your tongue in place, to keep it sticking out.
3.Swallow
4.Release your tongue and relax.
5.Do this excercise twice a day, repeat 3-5 times (if you can do so comfortably).

Effortful Swallow:

1.Swallow as normal, but concentrate on squeezing all of your swallow muscles in your throat.
2.Relax.
3.Do this excercise twice a day, 10 times each “set”.

Tongue Base Exercise:

1.Pull your tongue straight back into your mouth as far as possible, as though you were trying to touch the back of your tongue to the back of your throat.
2.Hold your tongue at the back of your mouth for 1-3 seconds.
3.Repeat 5 times.

Jersey Girl
65 posts
May 15, 2015 7:13 AM MDT

I’m on week two of my swallowing excercises. I have to admit I did not do them for about five days. I had a pinched nerve in my shoulder, and if any of you have ever experienced pinched nerve pain you’ll know that it grabs all of your attention! lol

I go back to the Speech Therapist in two weeks. That will mean almost four weeks of doing the exercises. I have to admit that I do not see a difference in my swallowing … but the exercises are free and they are easy so there is no reason to not continue doing them. :slight_smile:

One important thing I recently read … make sure you are sitting up straight and keep your head level. One OPMD patient had become so accustomed to tilting his head back to see (due to ptosis) that he found some immediate swallowing improvement from positioning himself correctly.

JG

Jersey Girl
65 posts
May 25, 2015 8:44 AM MDT

I have been doing my tongue exercises for almost four weeks now, and I have to admit that I have not experienced an improvement in my swallowing. I won’t stop; in fact I’ll probably do them for the rest of my life.

Originally, the speech therapist wanted me to come back in two weeks. Honestly? I thought that was a little crazy, and that even a person with normal muscle function wouldn’t necessarily experience a change in that time frame. I pushed my next appointment out to four weeks, and I still don’t think that another appointment is necessary at this juncture.

I find that I need to strike a balance in my own mind, life, available time and personal expenses when it comes to what is logical and what is not where doctors and OPMD are concerned.

Whether it is intentional or not on their parts, I do not know, but I do not wish to pour money into a doctor’s pocket who doesn’t know or understand OPMD and therefore orders frequent doctor visits.

I would be willing to pay any amount of money to a doctor who could help me. But knowing what I know, and what can and cannot be done about OPMD, I feel it is important for me to avoid unnecessary expenses. This comes not only from my OPMD experience but from some other chronic conditions that I have paid a lot of money towards, to no end.

Which is just another way of saying we need to advocate for ourselves in every way, shape and form.

JG

A Eymard
1 posts
June 1, 2015 6:03 PM MDT

Hi Jersey Girl,

I have been doing the throat stretching exercises for over a year. I think they have helped, but I, too, am careful about what I eat. I had the tube down my throat 4 different times. As you said, it is no big deal. I have had the swallowing tests done twice over 2 year period of time. Unfortunately, the tests showed that I have cervical osteophytes which are calcium deposits that form behind the back of the throat. hey are not unusual in people who are aging, but they are impacting on my already compromised throat. Because of them, I am not a candidate for throat stretching. So, I do the throat exercises faithfully because that is the only way to help myself to continue to be able to eat. Hang in there!

A Eymard

Captainjen
8 posts
June 2, 2015 4:38 AM MDT

A Eymard said:

Hi Jersey Girl,

I have been doing the throat stretching exercises for over a year. I think they have helped, but I, too, am careful about what I eat. I had the tube down my throat 4 different times. As you said, it is no big deal. I have had the swallowing tests done twice over 2 year period of time. Unfortunately, the tests showed that I have cervical osteophytes which are calcium deposits that form behind the back of the throat. hey are not unusual in people who are aging, but they are impacting on my already compromised throat. Because of them, I am not a candidate for throat stretching. So, I do the throat exercises faithfully because that is the only way to help myself to continue to be able to eat. Hang in there!

A Eymard

Captainjen
8 posts
June 2, 2015 4:41 AM MDT

I understand how you feel. Most physicians really have very little knowledge regarding our physical problems and they sometimes seem like they are just giving suggetions that do not always make sense. It is still such a pain in the butt to have to leave the lunchroom at work because you are gasping and choking on a small piece of Watermelon :frowning: And I soooo love Watermelon!

Debbie

Jersey Girl
65 posts
June 2, 2015 7:04 AM MDT

A Eymard,

Thanks for sharing your experience. I will undoubtedly go back to the Speech Therapist, but I thought two weeks after beginning the exercises was a pretty optimistic timeline to expect to see results (if there were going to be any).

I hate that I even have to think this way but to me … telling a patient with compromised muscle function to come back in two weeks for a progress check - smacked of a way to make money.

Again, is the medical industry in the US just so programmed to follow a schedule that they don’t take the individual’s disease into consideration? Or are they trying to make as much money off of patients as possible? Or is it the fact that they have no experience with OPMD and therefore do not have a realistic idea of what to expect for a patient’s results?

I am somewhat jaded about this; I admit it. I have personally experienced, at least twice, doctors ordering unnecessary testing. Mayo, which we are part of, has an online patient records program by which I can log on and see what doctors have indicated in my records. As someone who has long suffered with insomnia, I was sent to a pulmnary doctor. I questioned that, because I am quite certain I don’t have sleep apnea but it was explained to me that it was a process of elimination.

So I went, but I told the doctor that I was certain I don’t have sleep apnea based on my own observations as well as those of my husband. I told him that I do not snore … at all. Three weeks later, I pulled up the transcription of the pulmonary doctor on my record. The doctor’s report started out with, “Patient came to me complaining of severe snoring.” I was NOT HAPPY and after addressing this with the Mayo “complaint department” I had it rectified. The doctor’s report contained thirteen observations about me that were just plain incorrect. (He stated that my mother suffered from lifelong migraines; my mother never had a migraine in her life. He mentioned my brother, who had been a diabetic. I have one sister ONLY!!! It went on and on an on like that and it was a shocking experience for me, to think that the doctor either wasn’t paying any attention to me or changed the nature of my visit to justify further testing for sleep apnea, and the prescription of necessary equipment to address that.

This is just one unfortunate experience I’ve had; there have been many. I do not like having to follow up on my doctors, but I read my transcriptions after every visit to make sure they are accurate.

JG

Jersey Girl
65 posts
June 2, 2015 7:06 AM MDT

Debbie,

I find that when we do go out to eat, or I eat in public that I have to choose foods that are the least likely to cause choking. It goes without saying that I am always working on my tenth mouthful of food when everyone else is finished; ready to get up and leave.

I order soup whenever possible when we go out. There is nothing I hate more than having to cough and choke my food back up in public. Yuck! lol

JG

1 Like

Trehalose from BioBlast is supposed to target the throat issue mostly. The clinical trials will follow throat swallowing improvement.

Jersey girl,

I understand exactly what you are saying about doctors we have such a rare disease that I have
Cannot find a doctor that understands OPMD.

I have had my throat stretched 3 times and I still have problems eating coughing and coughing up my food. I just don’t know what else to do :disappointed:.

My mother eventually had to get a feeding tube
I really am trying to prevent this from happening to me.

Glo

@JerseyGirl we’d love to hear from you! How are you doing these days?

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