Trouble Swallowing - Need new doctors and advice and help 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 group.

@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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Hello @musikbliss. I'd also like to welcome to you to Connect along with @jenniferhunter who has shared a great deal of her experience and history with you.

First, I want to be sure you feel like you can keep yourself safe. I have no doubt that what you have shared is frustrating and unbearable at times when the pain is at its worst, but I also have to believe that there is help out there for you.

Do you have someone you live with that is there to help you or friends/family nearby? What are you doing for the pain?

REPLY

@musikbliss are you able to come back and give an update? I am worried about you after your post and just want to make sure you are OK. I am here.

REPLY
@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

Jump to this post

Hi Jennifer,
Thank you for responding and the information. I can swallow but the pain is constant. I just left the pain doctor. He gave me a nerve blocker that might help the pain, if not a little bit. It's kinda working.

I have a PCM and many other doctors I see. But no one has said what it is wrong with me. I mean I have a psychologist cause I'm on a high interest list and speech pathologist I see weekly.

I haven't heard of MFR before but appreciate you mentioning it. I'll look it up.

What else would u like to know?

Crystal

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@amandajro

@musikbliss are you able to come back and give an update? I am worried about you after your post and just want to make sure you are OK. I am here.

Jump to this post

Amanda,

I'm still here. Just sad. Every day but I survive everyday trying to figure this shit out. I'm sorry I scared you

REPLY
@musikbliss

Hi Jennifer,
Thank you for responding and the information. I can swallow but the pain is constant. I just left the pain doctor. He gave me a nerve blocker that might help the pain, if not a little bit. It's kinda working.

I have a PCM and many other doctors I see. But no one has said what it is wrong with me. I mean I have a psychologist cause I'm on a high interest list and speech pathologist I see weekly.

I haven't heard of MFR before but appreciate you mentioning it. I'll look it up.

What else would u like to know?

Crystal

Jump to this post

@musikbliss Hi Crystal! I am so happy to hear from you! Have you had a physical therapy evaluation? I'm not sure if the speech pathologist does that. One good thing about a physical therapist who does myofascial release is that they don't have to have a name or label for what is causing your pain. What they will do is have you lie on the table and put their hands on you to feel where there is tension. The fascia is a big web that extends through the entire body and recently doctors defined it and called it the interstitium. I have a pattern of tightness that is mainly on my left side and it has pulled my jaw out of alignment so I wore out the fillings on the left side, and it goes down my neck and causes cervical vertebrae to twist a little bit from time to time (which causes a muscular headache), then it makes the left side of my chest and rib cage not expand enough, and it can pull my left hip forward and pull my pelvis out of alignment. My PT evens me out by stretching the fascia and if she pulls on a spot near my arm pit, I can feel the pulling all the way from my jaw to my ankle of the left side, and cross pulling to my opposite shoulder. I do my best to maintain what I can by self treating at home. It is easy to do, but you can't always figure out a way to stretch fascia yourself. I have balls and foam rollers to lay on and you can always push up against a wall on a ball or use several small balls. Sometimes insurance doesn't want to pay for MFR, so a PT also has to do some traditional work along with it to get the session covered. I think because of your surgical procedures, you must have a lot of scar tissue that could be adding to your pain. The great thing about MFR is you can add it along with other treatments you need and there won't be a conflict. I know from experience that MFR can work wonders and it does need some patience because there can be many layers of tight fascia and it takes time to work through them. If your doctors don't understand MFR, don't worry, just ask for physical therapy and find a MFR therapist. Did you check to see if there are any MFR therapists near you? Would you consider trying it?

I used to be a person who feared pain, and the most painful event I have experienced was an epidural injection in my cervical spine. It was so bad that I was convulsing and shaking uncontrollably immediately afterward and I was getting electric stabbing shocks in my hand and fingers. I always used to pass out from things like that, but I told myself to breathe long slow breaths and I visualized being in another place, a beautiful place. That is not hard for me to do since I am an artist, and it helped distract me and let me get control of my fear. I was working and even though I was still in pain, I had passed the danger point and regained control. I had spinal cord compression from an old whiplash injury years earlier. Now I'm a survivor because I made it through that spine injection and when I compare other painful events to that, none are as bad and I congratulate myself for handling that and staying in control. I was really afraid of going through spine surgery, but I found ways to cope with art and music. I never thought that in my life, I would defeat my fear of pain, but I did and it completely changed my life, so much so that that is why I am here on Connect. Fear will increase pain a lot, and fearing that the pain will never end will just make it worse. You have to find some hope and a way to think about it that will help. I was in a pretty tough place loosing the coordination of my arms, and loosing my ability to do my art work. I was afraid of surgery, and I was also of afraid of what would happen if I didn't have surgery. I decided that fear will not choose my destiny.

I would like to share a discussion with you on that, and on the first page, there is a video interview of a Podcast where I was the subject. Would you watch the video and tell me what you think, and if it gives you any ideas about things that you can do for yourself? You have friends here. I just wanted you to know that. I am also the subject of a Sharing Mayo Clinic " story.

With kind regards,
Jennifer
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@musikbliss

Amanda,

I'm still here. Just sad. Every day but I survive everyday trying to figure this shit out. I'm sorry I scared you

Jump to this post

@musikbliss I am so so glad to see your response. Just wanting to check back in and see how you are.

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@amandajro

@musikbliss I am so so glad to see your response. Just wanting to check back in and see how you are.

Jump to this post

Hi Amanda. A lot of bad stuff have happened in the past two days. I can't win at anything. My throat is killing me right now. What will stop it. Did you say scarring? How long did it take to get an appt with Mayo Clinic. I want someone to help me before I do something stupid

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@musikbliss

Hi Amanda. A lot of bad stuff have happened in the past two days. I can't win at anything. My throat is killing me right now. What will stop it. Did you say scarring? How long did it take to get an appt with Mayo Clinic. I want someone to help me before I do something stupid

Jump to this post

@musikbliss Hi Crystal. Would your doctors provide a medical referral request for an appointment at Mayo? Sometimes having a referring physician helps because they can explain the issues, etc. Here is the page from the Mayo website to show to your doctors. Would you be able to travel to one of the Mayo campuses?
https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient
Do you want to talk? I will listen if you need me.

When I applied to Mayo, I was told it may be a 3 month wait to be seen. It all depends on what department you are seeking and availability, so there is no standard answer. Due to a cancellation in neurosurgery, I was offered an appointment 2 months after I sent in my imaging with my request. It may help to have your doctor make your request for you. I certainly sympathize, but the moderators and mentors on Connect do not have the ability to influence getting an appointment at Mayo. I think your doctor has a much better chance of helping you get an appointment.

Have you given any thought to myofascial release therapy? I know it helps me a lot. Are you in a safe place right now? What else may I do to help you?

REPLY
@musikbliss

Hi Amanda. A lot of bad stuff have happened in the past two days. I can't win at anything. My throat is killing me right now. What will stop it. Did you say scarring? How long did it take to get an appt with Mayo Clinic. I want someone to help me before I do something stupid

Jump to this post

@musikbliss I am sorry you have had a challenging last couple of days. I can hear you calling out for help. I think calling 9-1-1 or going to the ER would be wise, given what you are feeling physically and emotionally. Also, if at any point you start to feel like you may consider hurting yourself, please call the National Suicide Prevention Lifeline at 1-800-273-8255 for immediate help. Your safety is the most important thing to us. Will you let me know what your plan is?

REPLY
@jenniferhunter

@musikbliss Hi Crystal. Would your doctors provide a medical referral request for an appointment at Mayo? Sometimes having a referring physician helps because they can explain the issues, etc. Here is the page from the Mayo website to show to your doctors. Would you be able to travel to one of the Mayo campuses?
https://www.mayoclinic.org/medical-professionals/provider-relations/refer-patient
Do you want to talk? I will listen if you need me.

When I applied to Mayo, I was told it may be a 3 month wait to be seen. It all depends on what department you are seeking and availability, so there is no standard answer. Due to a cancellation in neurosurgery, I was offered an appointment 2 months after I sent in my imaging with my request. It may help to have your doctor make your request for you. I certainly sympathize, but the moderators and mentors on Connect do not have the ability to influence getting an appointment at Mayo. I think your doctor has a much better chance of helping you get an appointment.

Have you given any thought to myofascial release therapy? I know it helps me a lot. Are you in a safe place right now? What else may I do to help you?

Jump to this post

Yeah, I do plan on having my PCM send the referral but because of everything I'm working on the insurance part so I can see her and try to get on her schedule. Thank you for the info about the Mayo Clinic. Was it a helpful experience for you?

I do want to try the mayofacial release therapy. I need to find someone who does that here.

REPLY
@musikbliss

Yeah, I do plan on having my PCM send the referral but because of everything I'm working on the insurance part so I can see her and try to get on her schedule. Thank you for the info about the Mayo Clinic. Was it a helpful experience for you?

I do want to try the mayofacial release therapy. I need to find someone who does that here.

Jump to this post

@musikbliss Yes, everything about being a Mayo patient was great for me. I also did everything I could to be a good patient that doctors wanted to help. I had spent 2 years with spinal cord compression looking for a surgeon to help me, and none of the local non-Mayo surgeons would help because they misunderstood my case. A lot of surgeons don't want to take on complicated cases if they don't know if they could fix it because they don't want to fail. As a patient, you may run up against this too. I found medical literature with cases similar to mine, so I knew what the doctors had missed. With that literature, I requested an appointment at Mayo and told them about being denied by 5 non-Mayo surgeons. Previously, I had watched videos of spine surgeons presenting at conferences and instructing other surgeons on how to choose patients. One of the surgeons who had refused surgery to me was saying not to do surgery on patients with mental health issues because you can do the best surgery in the world and they won't appreciate it. The reason I am saying this is because you want doctors to help you, so it would be in your best interest to get the help that you need emotionally first. I have a good friend who has been suicidal at times because she has a painful condition that doctors have not been able to fix, and it brought back suicidal thoughts that had been in her past. By finding a new doctor and getting her psychiatric meds optimized, she does much better in functioning so much so that if I didn't know her past, I would not know that she had ever thought about suicide because she is happy and positive and fun to be around. She is also getting nerve block injections to control the pain and is really doing well. It's all about advocating for yourself and getting your life back in control.

I cannot speak for Mayo as I am not a medical professional or employee of Mayo, and I do not know how they review applications for appointments, but I want you to have the best chance you can to be accepted as a patient, so please work with your doctors to get your emotions into positive territory. You can do that now. You have a lot of power over your own healing when you believe that you can do it. I came to spine surgery knowing in my heart that it would resolve my all over crazy pain even though none of the doctors could promise that to me. I was right, and decompressing my spinal cord resolved all the pain I was having everywhere.

When doctors think that you may harm yourself, you will be directed toward mental health help instead of trying to solve the issues that are causing your pain. I do understand how frustrating this is, and I was frustrated also for 2 years while I was drawing diagrams of pain all over my body and trying to find a posture that would lessen my pain and going through a parade of doctors who didn't want me as a patient. My physical therapist sure did help a lot by realigning my spine and relieving muscle spasms and doing the myofascial work. I read a lot of medical literature about physical issues and I have learned a lot from my physical therapist, so I have learned to question how the body works and have an understanding about alignment issues that can cause problems. That is why I sent you the information about the hyoid bone and temperomandibular dysfunction in case that was relevant to you. These are things that a physical therapist would treat, so that may also be something to pursue now with your current doctors.

If you do feel like harming yourself again, please call the Suicide Prevention Hotline like Amanda suggested. You will get someone right away instead of waiting hours for us to find your post here. I hope that I have been able to help, and please do not feel like any of this is criticism. It was pretty shocking to me to hear a surgeon talking about choosing which patients he wanted to help and to know that I was not one of them. I always thought that doctors wanted to help everyone, by that is not how it is when there are big risks to consider. Sometimes doing surgery would cause more harm than good, so it is a balancing act. If you need the MFR provider search link again, here it is.
http://mfrtherapists.com/
And I need to say this too… I'm glad you came back.

REPLY
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