Trouble swallowing after stroke - Need advice, please

I’m so sorry that has been an issue with me also which has gotten worse in last year. Eating mostly liguid or very soft foods. Also loosing weight. We have come to the conclusion mine is the dryness from sjogrens disease. Now as I’ve talked about before I have a terrible taste in my mouth. I’m seeing a GI Doctor in a few weeks. I’ve come to accept the fact of this and just trying to work with a nutrition specialist to get as much nutrition as I. Am to not have to put on an eating tube. Have you talked to an nutrition specialist? My Doctor connected me with one that is covered by my insurance. I totally understand and sorry you are going through this also.

My trouble swallowing seems to be from the mouth not throat. No obstruction or restrictions. No known cause. Losing weight fast. Cannot eat. Only consume smoothies. What is the cause?

@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.

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.

@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 or text the 988 Suicide & Crisis Lifeline https://988lifeline.org for immediate help. Your safety is the most important thing to us. Will you let me know what your plan is?

@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?

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

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

@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/

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