My name is Patrik Hutzel from intensivecarehotline.com, where we instantly improve the lives of families of critically ill patients in intensive care. I’m a critical care registered nurse with over 25 years of critical care and ICU nursing experience in 3 different countries, where I have worked as a nurse manager for over 5 years in ICU. I’m also the founder and manager of Intensive Care at Home, and we have saved many lives with our intensivecarehotline.com consulting and advocacy service for our clients in intensive care, and you can verify that on our testimonial.   and the podcast section where we have done client interviews.

Here at intensivecarehotline.com, we instantly improve the lives of families of critically ill patients in intensive care so that you can make informed decisions, have peace of mind, control, power, and influence, making sure your loved one always gets the best care and treatment.

Today, I’m answering a question from Kerry who wrote in and said:

“Hi Patrik, 

My brother was diagnosed with multiple myeloma. They found a mass in his voice box, and his air supply was threatened. They did a tracheostomy, and today he found out from the doctor that the tracheostomy cannot be reversed. The myeloma damaged cartilage in his voice box. Would you get a second opinion?”

Kerry, thank you so much for reaching out. I am very sorry to hear what your brother and your family are going through at the moment. This is exactly the kind of situation where you need clear information, strong advocacy, real insights, and a second opinion, and I’m going to walk you through all of it in this video and blog post.

What is multiple myeloma and why did it affect the voice box? Multiple myeloma is a cancer of the plasma cells, the white blood cells found in bone marrow. It can cause masses — plasmacytomas — to grow in soft tissues or bone. When a plasmacytoma forms near or on the larynx, which is the voice box, it can compress the airway, threaten the air supply, and trigger an emergency. That’s almost certainly why your brother Kerry needed an urgent tracheostomy, a surgical incision into the neck to create a direct airway into the trachea, bypassing the obstruction. The terms tracheotomy, which is the surgical procedure, and tracheostomy, the resulting opening and tube, are often used interchangeably, and both are highly relevant here.

What does it mean when a tracheostomy can’t be reversed?

Normally, and in most cases, tracheostomies are temporary. Once the underlying reason for the airway obstruction is resolved, whether through surgery, radiation, or treatment of the primary condition, the tracheostomy tube can be removed — also known as decannulation — and the stoma closes naturally or is surgically repaired.

In Kerry’s brother’s case, the doctor is saying that decannulation is not possible because of damaged cartilage in the voice box, the larynx. When laryngeal cartilage is destroyed or significantly damaged, the structural support for the upper airway is compromised. Without that structure, breathing through the natural airway is no longer safe or functional. This means the tracheostomy tube may need to remain in place permanently, either as a long-term tracheostomy or, in some cases, leading to a laryngectomy — the surgical removal of the larynx — depending on how the myeloma is treated and how the tissue responds.

Key clinical terms to understand:

Tracheostomy — a tube placed through the neck directly into the trachea to maintain the airway. Decannulation — the removal of the tracheostomy tube when the airway is safe to breathe through naturally. Laryngeal cartilage damage — structural damage to the voice box that prevents the natural airway from functioning safely. Plasmacytoma — a tumor mass caused by multiple myeloma, which, in this case, affected the larynx.  Would I get a second opinion?

Absolutely yes, and here is why. Kerry, you asked me directly — would I get a second opinion? Yes, absolutely, without hesitation. When a doctor tells you something as significant as a tracheostomy can never be reversed, it is a life-changing statement. It affects how your brother breathes, how he communicates, his quality of life going forward, and every treatment decision going forward. A statement like that must be verified by an independent specialist.

What you need specifically is an opinion from an ENT surgeon — ear, nose, and throat specialist — ideally one who subspecializes in laryngology or head and neck oncology. A head and neck oncologist, because the underlying diagnosis is multiple myeloma with plasmacytoma affecting the larynx, and the oncology treatment will directly impact what is possible surgically. A radiation oncologist — radiation therapy is commonly used for plasmacytomas and may reduce the mass enough to change the surgical picture. A hematologist or myeloma specialist who should be coordinating the systemic treatment of the myeloma itself.

A second opinion isn’t about distrusting the first doctor. It’s about making sure that all options have been considered that the assessment is accurate, and that your brother’s care team has the full clinical picture. It’s also often what I find when we look at medical records

for our clients in the ICU — we’re always finding that the intensive care team is always telling only half of the story to families in intensive care. When we look at medical records, we find many other things that haven’t been discussed, but that actually impact on what families are being told.

The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care.

What are the treatment options for your brother Kerry? There are several layers to this and they all need to work together.

Number one — treatment of the multiple myeloma itself. The myeloma must be treated systemically. Modern myeloma treatment has come a long way, with options including chemotherapy and novel agents such as proteasome inhibitors such as bortezomib and carfilzomib, immunomodulatory drugs such as lenalidomide and thalidomide, stem cell transplantation — autologous stem cell transplant is a standard part of treatment for eligible patients — monoclonal antibodies such as daratumumab, which have significantly improved outcomes in myeloma, targeted CAR T-cell therapy (chimeric antigen receptor T-cell therapy), and bispecific antibodies, newer options for relapsed or refractory myeloma. The response of the plasmacytoma on the larynx to systemic treatment may directly affect what is possible for the airway down the track.

Number two — radiation therapy to the laryngeal plasmacytoma. Plasmacytomas — the localized tumor masses caused by myeloma — are typically very radiosensitive. Radiation therapy to the laryngeal mass may significantly reduce or eliminate the tumor, which could change the assessment of whether decannulation is possible in the future. This is a critical question to ask the radiation oncologist: if we treat the plasmacytoma with radiation, does this change the reversibility of the tracheostomy?

Number three — laryngeal reconstruction or repair. If the cartilage damage is the primary reason the tracheostomy cannot be reversed, a laryngologist or a head and neck surgeon may be able to assess whether laryngeal reconstruction or cartilage repair is surgically feasible, particularly after the tumor has been treated. This is a highly specialized field, and not every hospital will have this area of expertise. A major head and neck oncology center is the appropriate place for the assessment.

Long-term tracheostomy management.  If the tracheostomy is confirmed to be permanent or long-term, the next question is where and how does Kerry’s brother live his life. A permanent tracheostomy does not mean a permanent ICU stay. With the right level of support, people with permanent tracheostomies live at home, work, travel, and maintain excellent quality of life.  What is important here, Kerry, is that radiation therapy is often the treatment of choice for localized plasmacytomas. Ask specifically — if we treat the plasmacytoma with radiation, could the tracheostomy become reversible? This is a critical question for the oncology team.

Why access to all medical records is non-negotiable.  Before any of these conversations happen, Kerry — with second opinion specialists, with treating teams, with anyone — you and your brother need access to all of his medical records. This means all imaging: CT (Computed Tomography) scans, MRI (Magnetic Resonance Imaging) scans, and PET (positron emission tomography) scans of the larynx and neck. Pathology and biopsy results confirming the myeloma diagnosis and plasmacytoma. Surgical notes from the tracheostomy procedure. Endoscopy or laryngoscopy reports documenting the state of the larynx and the extent of cartilage damage. All clinical notes from the treating team explaining why decannulation is not considered possible.  Without this documentation, you cannot get a meaningful second opinion. Any specialist you consult with, will need this information. Do not accept vague verbal summaries. Request the full records in writing. You are legally entitled to them. This is not optional. Medical records are the foundation of every decision that follows, and the foundation of informed decision-making.

How a consulting call with myself or my intensivecarehotline.com team will help.  Kerry, it sounds like you’re feeling overwhelmed by what the medical team is telling you, or you’re not sure what questions to ask, or you feel like you’re not getting clear answers. That is exactly what we are here for at intensivecarehotline.com.

When you book a consulting call with me or with one of my team members, we can review your brother’s medical records with you and help you understand what the clinical picture actually means. We can join a call with the ICU team or treating specialists to ask the right questions, clarify what has been said, and advocate for your brother’s best interests. We help you understand what treatment options have and have not been explored. We guide you through how to obtain a second opinion and who to see. We support you in navigating the hospital system when you feel like you are hitting walls.

The way I work is I always have 15 minutes of my free time for an initial consultation, and then I do charge a fee for any ongoing consultations that you want.

if your brother needs long-term ventilation or tracheostomy care at home.  Kerry, I want to bring in a very important resource, which is our sister service Intensive Care at Home, and you can find our website at www.intensivecareathome.com.  If your brother ends up needing long-term or permanent tracheostomy, invasive mechanical ventilation with tracheostomy, non-invasive ventilation such as CPAP or BiPAP, or palliative care with ongoing respiratory support, then Intensive Care at Home will make all the difference by providing specialist home care nursing delivered by ICU and critical care registered nurses, allowing your brother to live at home with his family rather than spending months or years in an ICU or in any long-term facility that’s not equipped to look after tracheostomies and ventilation.

Intensive Care at Home is third-party accredited

for intensive care at home nursing and for ventilator-dependent tracheostomy adults and children, which means going home is not a fantasy, Kerry. It’s a realistic, safe, and cost-effective alternative to prolonged ICU admissions, and for many patients, it is what keeps them out of the ICU predictably and permanently.

If your brother needs long-term ventilation, tracheostomy care, or palliative care support at home, go to www.intensivecareathome.com, and you can also find our evidence-based mechanical ventilation content on our website that will show you that what we do is evidence-based.

To summarize — what should you do, Kerry, right now?

Get a second opinion. See an ENT, laryngologist, head and neck oncologist, radiation oncologist, and myeloma specialist. Request all medical records immediately — imaging, pathology, surgical notes, laryngoscopy reports, clinical notes. Ask the oncology team specifically: if the plasmacytoma is treated with radiation, could the tracheostomy become reversible? Book a consulting call with myself or with someone at my intensivecarehotline.com team to review the medical records and advocate with the treating team. If long-term tracheostomy or ventilation is confirmed, explore home-based care through Intensive Care at Home.

Your brother, Kerry, is very lucky to have someone advocating for him. Do not stop asking questions. Second opinions and advocacy save lives. And please know that a tracheostomy, even a permanent one, does not have to mean a lifetime in ICU. We’ve shown that with Intensive Care at Home over and over again — we keep patients out of ICU permanently and predictably.

I have worked in critical care nursing for 25 years in three different countries where I worked as a nurse manager for over five years in intensive care. And I’ve been consulting and advocating for families in intensive care since 2013 here at intensivecarehotline.com. And I can very confidently say that we have saved many lives with our consulting and advocacy, because of our insights, and you can verify that on our testimonial section  at intensivecarehotline.com and you can verify it on our intensivecarehotline.com podcast section, where we have done client interviews.  And because our advice is absolutely life-changing, right?

The biggest challenge for families in intensive care is simply that they don’t know what they don’t know. They don’t know what to look for, they don’t know what questions to ask, they don’t know their rights, and they don’t know how to manage doctors and nurses in intensive care. And that’s why we help you to improve your life instantly, making sure you make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always. And that’s why you can join a growing number of members and clients that we have helped over the years, saving their loved ones’ lives.

And that’s why I do one on one consulting and advocacy over the phone, Zoom, WhatsApp, whichever medium works best for you. And I talk to you and your families directly. I handhold you through this once-in-a-lifetime situation that you simply cannot afford to get wrong. And when I talk to families directly, I also talk to doctors and nurses directly, asking all the questions that you haven’t even considered asking but must be asked when you have a loved one critically ill in intensive care.  I also represent you in family meetings with intensive care teams.

We also do medical record reviews in real time so that you can get a second opinion in real time. We also do medical record reviews after intensive care, so, if, in case you have unanswered questions, if you need closure or if you are suspecting medical negligence.

We also have a membership for families of critically ill patients in intensive care, and you can become a member if you go to intensivecarehotline.com. If you click on the membership link or if you go to intensivecaresupport.org directly. In the membership, you have access to me and my team 24 hours a day in the membership area and via email, and we answer all questions intensive care-related. In the membership, you also have exclusive access to 21 e-books and 21 videos that I’ve personally written and recorded. And all of that will help you to improve your life instantly, make informed decisions, have peace of mind, control, power, and influence, making sure your loved one gets the best care and treatment always.

And all of that you get at intensivecarehotline.com. Call us on one of the numbers at the top of our website or simply send us an email to support at intensivecarehotline.com with your questions.

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Thank you so much for watching.

This is Patrik Hutzel from intensivecarehotline.com, and I will talk to you in a few days.

Take care for now.