Trouble swallowing after stroke - Need advice, help please

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!

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

@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

@jenniferhunter