My husband was intubated 57 days. He has not been able to swallow since intubation in March 2020. Swallow therapies have not worked. Can anybody recommend a physician who deals with extreme dysphasia?
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Can anybody recommend a physician who has had success in addressing extreme swallowing problems?
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Good morning! I can’t imagine how frightening and uncomfortable it must be for you not to be able to swallow! Since you placed this comment in the Post-covid recovery group, did this happen after you had Covid? How long has it been going on?
The important thing is to have this checked out by a physician to make sure there aren’t some underlying conditions such as enlarged thyroid gland, paralyzed vocal cord, or conditions with your esophagus, etc.
Have you gone to your primary care provider or an ENT? (Ear nose throat)
Hi @pran, welcome. You'll notice that I moved your 2 posts into one discussion about dysphagia or swallowing issues. Depending on the suspected cause, your health care provider might refer you to an ear, nose and throat (ENT) specialist, a doctor who specializes in treating digestive disorders (gastroenterologist), or a doctor who specializes in diseases of the nervous system (neurologist).
I agree with @loribmt that you might want to start with an ENT specialists since you believe the swallowing issues may be related to intubation. They will want to rule out possible causes or damage.
Was your husband hospitalized for COVID? Has he been experiencing any other post COVID issues?
Hi @pran I would like to welcome you to Connect and I have had an experience like you speak about. I was not incubated as long as your Husband was mine was for a Heart Transplant Surgery but I did have some complications afterwards. During post surgery period my voice was pretty horse and I could only speak for 10-15 min at a time It literally wore me out to chat with others and especially on the Phone. I also had lots of trouble swallowing and I required a type of suction tube to remove phlegm for the first few days after surgery.
I had my transplant at the Mayo Clinic in Phoenix, Arizona and the initial ENT department was there also. During my initial exam it was found that my voice box area was damaged and part of it wasn't moving. Now mine was temporary as my voice over the next few months got better, it was determined it would heal on its own. As for swallowing I had a swallow study where they have an active xray watch you swallow and see if there are any issues with your swallowing mechanism. During mine it was determined that there was a delay in solids going al the way down after one swallow but usually went down the second time. Now i haven't really had a serious issue in eating keeping in mind to try and not take to big a drink or amount of food in each bite.
I'm now 4 years later and I have a regular ENT who follows me on a regular basis and just recently I've noticed some changes in my voice and swallowing so we are going to redo the swallow test.
So Long story short my initial study was done at Mayo Clinic and I can recommend them particularly the Phoenix campus. I found out recently my outside ENT PA I see regularly did do a fellowship at Mayo so that was a nice thing to know.
So By chance do you live near a Mayo Clinic there are 3 locations Rochester Minn., Jacksonville, Florida and Phoenix, Arizona as I can highly recommend them. I have found that one word I have to describe the Fine Staff at the Mayo Clinics is that they do not give up until all resources have been exhausted . But I'm sure there are many fine Ear, Nose and Throat (ENT) Doctors elsewhere.
I am available if you have any questions as to the procedures for a swallow study. I look forward to hearing how you decide to proceed?
Have a Blessed Day
I developed a condition called TrachealBronchialMalacia (TBM) after a long surgery under general anesthesia . Little did I know that if the cuff during intubation is too tight it can permanently damage your trachea making the tissue very floppy. This affects your breathing because the trachea doesn't propel the air out as well and it builds up in your lungs causing sob. Other things can cause TBM besides this but this is a very real consideration when/if you are ever intubated for any reason. I never see this anywhere listed as a cause of S>O>B> so I like to suggest adding this to the list of possibilities when considering the cause of S>O>B>.
@pran An ENT (ears, nose, throat doctor)
I had this problem. I had a scan of throat and neck.
My husband also had dysphasia after a 70+ day icu stay. He was intubated and extubated five times He had absolutely no airway protection and was on a feeding tube for months. He did throat exercises every day. Gradually his swallow improved. One year post the start of this nightmare he is eating normally.
@marilynckennedy, thank you for joining the community to share your husband's story. It brings hope to others. What persistence and dedication he (and you I suspect) to commit to doing the throat exercises daily for a whole year. It paid off. You both must be so relieved.
His being in ICU for over 70 days, with multiple intubations and much more, must've been very scary for you. How are you doing now that he seems to be out of the woods, so to speak? Have you had time for you to take everything in?
He still has some challenges in addition to PICS: his stoma still hasn’t closed completely 8 months since decannulation. He had his tracheostomy for over 16 weeks and he developed a fistula. We were going to try and see if it would close on its own but he is getting very sick of having to wear the gauze and tape over the stoma. Even though he is worried about being intubated again for the surgical closure ( and having to stay overnight in the hospital), he may decide to have it repaired sooner rather than later. As for me, I’m still suffering from PTSD. He had his valve replacement and aneurysm repair April 6, 2021 and it all fell apart within days. He had a major gastric bleed from six bleeding ulcers, had an endoscopic repair and got 7 units of blood. Then he got a deep sternal wound infection and had his sternum removed and had a flap surgery. Then his nurse got Covid and he was in isolation for 14 days. On the 13th day of isolation he had a code blue and had CPR for 12 minutes. He came back and got a tracheostomy. He had icu delirium for 60 days. He came home after 70 days in the hospital, got sepsis from the unresolved sternal infection and was readmitted to icu for another week and 2 more weeks in the hospital. In July he came home again with a nasogastric feeding tube and a pump, a trach, 24 hour oxygen, suction machine, nebulizer, a pic line for IV antibiotics and other equipment. He was terribly confused, had no bowel or bladder control and was extremely weak. All that I had was hope. Today, he is walking 2+ miles a day, off the antibiotics and oxygen, no trach, eating a normal diet and regaining his abilities. This experience changed both of us forever so I don’t know if I’ll ever feel like I can let my guard down.
Marilyn, I can imagine that this experience had changed both of you forever and that you feel like may never be able to relax or let your guard down. Have you sought help to give some time to focus on you and the resulting PTSD from all this?
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