Trouble swallowing after stroke - Need advice, please

Posted by musikbliss @musikbliss, Oct 11, 2021

I had a hemorrhagic stroke on August 27, 2020. I went into the hospital for a breast reduction and on the way from the pre-op room to the operating room I had my stroke. I don't remember it. I just remember waking up with a trachea two days later in another hospital wondering what happened and why was I a vegetable. I was in the hospital. It wasn't a great stay. I couldn't eat i had to get a Peg tube inserted but they couldn't wake me up so I got another trachea and woke up in the ICU 1hey1 days later. I'm now in chronic pain. That chronic pain is literally killing me. I want to take me own life every day. And the chronic pain is likely from the hospital stay. The pain started there and continued when I left getting worse and worse after I left. My mouth and throat are bone dry so eating bread is like eating sawdust. I can eat now but its not easy. And after I eat the pain begins again. It feels like someone is choking me, taking a knife down my throat and pouring acid down it. And it constantly pushes up but only a slight bit of saliva come up. Its like the muscles that you hawk a loogee with don't work at all. I write this because I need help. Does this sound familiar to anyone? How can I help this. Will it go away? Is therre a doctor who can help me? I have military insurance . Please Hlep. I was 38 When this happened. I'm 39 and am getting medboarded out of the air force. I need hep. I have to be able to work again. I can't live with this pain. Please help. Thank you.

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Lisa Lucier, Moderator | @lisalucier | Mar 30 7:18pm

In reply to @alana68 "@jenniferhunter" + (show)

@alana68 - I think the rest of your post to @jenniferhunter didn't come through. I'm sure she'd be interested in hearing from you, if you'd like to post it again.

alana68 | @alana68 | Mar 30 4:14am

In reply to @jenniferhunter "@musikbliss Hello and welcome to Connect. First, I do want to say thank you for your..." + (show)

@jenniferhunter

@musikbliss Hello and welcome to Connect. First, I do want to say thank you for your service to our country. One of my uncles was in the Air Force in World War II. I don't think we thank our military service people enough.

My heart goes out to you. I took care of my dad with a PEG tube which was from a head injury that affected his ability to swallow. Do you still use the PEG tube or are you swallowing on your own? I do want to tell you that there are a lot of caring people on Connect, but we are not doctors. We can share our own personal experiences of health issues. Are you in pain all the time or just when trying to swallow? I know there are products like Biotiene to add moisture if you are low on saliva. Do you think something like that may help you? There are also products like Thickit which will add bulk to thicken liquids and it may make it more comfortable. That is a guess on my part. Have you tried something like that?

I sometimes do have choking sensations too, but not serious. I have had cervical spine surgery and have an incision on the front of my throat which gets tight, and I also have thoracic outlet syndrome which causes tightness between the neck and chest and even enough to interfere with proper movement of the left side of my rib cage. What really helps me is physical therapy with myofascial release which is a gentle way to stretch out all the tight fascia and scar tissue. All surgeries create scar tissue not only on the skin surface, but in the fascial layers and those connect like a spider web through the body. The fascia gets pulled and twisted affecting proper body movement and causing pain. When you stretch the fascia and wait, it can remodel itself which is how MFR therapy works. With swallowing, there is a bone that sits across the front of the throat called the hyoid. It can become misaligned which will cause pain and a feeling of choking sensation. A good therapist can check that with their hands. If you have had a couple of Trachea tubes inserted, I could understand why that possibly could affect the hyoid if you have fascial tension there.

Here is our discussion on Connect about Hyoid Bone Syndrome. Perhaps this may be helpful.
https://connect.mayoclinic.org/discussion/hyoid-bone-syndrome/
I don't know if this is relevant, but this is an article about dysfunction in the Tempero Mandibular joint (jaw connection) which cause excruciating pain. https://mskneurology.com/true-cause-solution-temporomandibular-dysfunction-tmd/

Here is our discussion on myofascial release and you can do this even if you don't know specifically what is wrong that might contribute to pain. A good therapist can feel the tight patterns of fascia with their hands. The first pages in the discussion have lots of links to information and some videos that explain, and there is a provider search on the MFR website at http://mfrtherapists.com/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
If you are interested in seeking an appointment at one of the Mayo Clinic campuses, you may use this link. http://mayocl.in/1mtmR63
There are 3 main locations in Rochester, MN, Phoenix, AZ, and Jacksonville, FL. There is also a Mayo Care network where hospitals across the US are affiliated with Mayo so their doctors may consult Mayo specialists directly. You can see those locations at this link.
https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Can you tell me some more about your condition? Are you under the care of a doctor at this time? I would love to know what you think about all the myofascial release information. It is fascinating stuff. It has helped me a lot. Have you been working on swallowing with a speech therapist? Is there anything here that seems familiar?

With kind regards,
Jennifer

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@jenniferhunter

MelissaDawn | @mdawn | Mar 20 4:14pm

In reply to @lisalucier "@mdawn - wondering if you ended up going back to speech therapy? If so, how did..." + (show)

@lisalucier Hi Lisa. I have been to speech therapy many times and multiple swallow studies. No answers..

Lisa Lucier, Moderator | @lisalucier | Mar 20 11:30am

In reply to @mdawn "My pcp sent me for a barium swallow study. I thought i would be having the..." + (show)

@mdawn - wondering if you ended up going back to speech therapy? If so, how did it go?

sphillips1952 | @sphillips1952 | Aug 15, 2022

In reply to @mdawn "Thank you for this information. May I ask....Did they give you a diagnosis for the motility..." + (show)

Sorry, having issues with my brain and this website. Not tech savvy😢
Think it was “Minimal Esophageal Motility Disorder”? It’s not as bad the problems some people are having! Mine is from the muscles in the lower esophagus not allowing food to go down into the stomach, I think my IBS is not helping at all. During the Esophogram with Barium Swallow, the pill got stuck in the aortic arch?? Oh, that test I cdnt do was the ESOPHAGEAL MANOMETRY….trying to swallow that tube and practically barfing up my stomach! Praying for you to get the help you need. Blessings.🙏

MelissaDawn | @mdawn | Aug 14, 2022

In reply to @sphillips1952 "See the ESOPHAGEAL MOTILITY SPECIALISTS at MAYO. JAX, FL thru the Gastro Dept….Funny, doing this same..." + (show)

Thank you for this information. May I ask....Did they give you a diagnosis for the motility issue?

sphillips1952 | @sphillips1952 | Aug 14, 2022

In reply to @mdawn "My trouble swallowing seems to be from the mouth not throat. No obstruction or restrictions. No..." + (show)

See the ESOPHAGEAL MOTILITY SPECIALISTS at MAYO. JAX, FL
thru the Gastro Dept….Funny, doing this same thing, DYSPHASIA, the swallowing thing.🤪. It’s so upsetting to my GERD!! I did all tests..
Esophogram, Endoscopy with biopsies, Echogram, but CD NOT do the Esophogeal Motility test with swallowing small tubing thru the nose and into the stomach. NO GO., gagging, spitting, and choking.
I tried it. Just a bad gag reflex! Some people can do it fine.Try it if u can, VERY Diagnostic for the Doctor and diagnosis❤️Blessings🙏

Colleen Young, Connect Director | @colleenyoung | Jul 31, 2022

In reply to @mdawn "My pcp sent me for a barium swallow study. I thought i would be having the..." + (show)

That is a shame. Speech therapist most definitely help with swallowing issues. Might you get a referral from a different physician?

MelissaDawn | @mdawn | Jul 30, 2022

In reply to @colleenyoung "Melissa, have you consulted with a speech pathologist? They specialize in swallowing issues." + (show)

My pcp sent me for a barium swallow study. I thought i would be having the modified swallow study with a speech therapist, but my pcp said that was only for stroke patients, etc.... I didn't agree with her on that, but she was adamant. I saw a speech therapist years ago when this started, and feel I need to see one again. I would need a referral, but again my dr sounded firm on this!