What questions should I ask my surgeon?
At your very first appointment with your doctor these questions will help you determine whether this is the right doctor to be treating you. You only get one airway and you want it handled correctly from the start:
How much experience do you have with airway stenosis?
How many airway stenosis patients do you have?
How long have you been treating patients with airway stenosis?
Establish how confident the doctor is in this field, given it is a rare area of treatment and many ENTs will have only read about it while studying. The more patients they treat and the longer they have been involved with airway stenosis, the better – you do not want to be their first patient.
Where/with whom did you do your training in this area?
If they trained at a high-volume centre then it is likely they have a lot more experience and therefore you can feel confident they have learnt from the best.
What is the average reoccurrence rate of your patients' stenoses? i.e., how frequently do your patients generally have to return for a dilation surgery?
Alarm bells should ring if their patients are all returning for surgery every six months or more frequently. This should ideally be the exception rather than the rule.
Has any of your airway stenosis patients ever needed to have a tracheotomy? Under what circumstances? What about other complications?
Tracheostomy is a rare (but sometimes necessary) occurrence among airway stenosis patients – important to understand what led to this (or other complications) happening.
What are your thoughts regarding putting a permanent stent into my airway to keep it open?
This is a trick question – any doctor with experience in this area would NOT recommend a stent – there are many risks – including complete blockage (requiring a tracheotomy), movement of the stent and creation of more scar tissue, movement and damage to vocal cords. If your doctor entertains this as an option, seek another opinion.
What treatment options do you offer?
e.g. steroid injections/dilation/wedge resection/Maddern/resection
How many dilation surgeries have you carried out in the past three months?
Where would you refer more challenging patients to, if anywhere?
What do you propose to be the plan for my ongoing treatment?
The treatments offered (and variety of them) will help you understand their experience. More experienced doctors/centres offer more options (or will be happy to refer you to another surgeon and know who to send you to). The more surgeries they have carried out in the past three months, you can infer their skills will be more up to date.
If your doctor does one thing well (eg dilations) that is great, as long as they are aware of other treatments and where to send you, should you choose that path.
What do I do if my breathing suddenly deteriorates, and I need to see you urgently?
As an airway patient, the majority of doctors will put a flag on your record to alert their gatekeeper (admin/appointments/secretary) to prioritise your appointments if you need one urgently. It is worth raising this with your surgeon to make sure it is the case so you don’t have issues scheduling an appointment. They may also recommend particular hospitals to attend/avoid if you need to present at emergency.
Please can I have a copy of the image of my stenosis?
The doctor should look at your airway using a laryngoscope/bronchoscope which involves a camera going up your nose and down your throat.
Usually the doctor is able to sight your stenosis through your vocal cords, and should be able to save a photograph of your stenosis.
If you are able to take a printed copy of this image it gives you something to take to other doctors, should you choose to go elsewhere.
When having dilation surgery:
How long should I expect to be in hospital?
Most dilation surgeries are done as day surgery, but if you are susceptible to swelling, have other potential health issues or have a long way to travel then you may need to stay overnight – either in hospital or within easy reach of the hospital.
What can I do to protect my teeth from damage?
Many hospitals will insert a mouthguard to protect your teeth from the surgical instruments, but not all. It may be worth getting something specific to fit your teeth, if your surgeon is agreeable to this.
What surgery are you planning to perform?
A laser dilation? Balloon? Coblation?
Understanding what type of dilation your surgeon plans to proceed with is important. For example, coblation is a dilation technique performed at several centres, but anecdotally is not recommended as it increases the likelihood of the scar spreading up your trachea. If your surgeon suggests this technique, then request an alternative or seek a second opinion with a surgeon that does not do this operation.
Self-help tracheal stenosis's note: In Germany, the best results are achieved with balloon dilatation, in which a steroid is also injected. Some clinics also perform laser dilatation. We are not aware of coblation dilatation here.
Will you be doing any steroid injections?
Applying Mitomycin-C?
Being aware of what treatment you are having is important in assessing success rates, side effects and so on, especially if you may potentially see another surgeon at some point.
Are you planning to do a biopsy of the scar to test for ANCA? Or take bloods to test for this?
A test for ANCA (autoimmune disease) is recommended each time you have a dilation. A negative result in the past does not mean there might not be a positive result in the future.
At every appointment with your specialist:
What is the current diameter of my stenosis in millimetres?
Your doctor can best answer this when they have seen your airway under a general anaesthetic, and they can measure it accurately. This will be in millimetres (mm).
At which percentage is my airway closed?
This is going to be a best guess by your doctor when you are seen with a scope. If you know the diameter of your airway when it is at its most open, you can calculate the approximate diameter in millimetres (mm
What is the current distance of the top of my stenosis from my vocal cords?
This will help you to understand any risk to your voice quality from the movement of the scar and may help you make decisions about a change to the type of treatment or surgery you receive.
How has my stenosis changed since my last appointment?
You are aiming to understand what is happening in your airway – whether the scar is changing – is it moving towards your vocal cords? Is it moving further down your trachea? Is the scar getting thicker or thinner? Is it corkscrewing or remaining the same? Are there any new areas of scarring?
Your surgeon should take regular photos and /or have a detailed description of the stenosis each time to refer to and make comparisons with previous exams.
What are my ANCA test results? And when were they last tested?
If you have been diagnosed idiopathic (not if you have been diagnosed with GPA or other autoimmune (AI) disease) then it is recommended this is tested annually along with a basic-metabolic profile – your GP/primary care doctor can usually organise these. Even if you have tested negative in the past, the result can still change, and the treatment will be slightly different if you are shown to have an AI disease.
Do both my vocal cords work as they should?
If there are any issues with your voice it is worth understanding whether it is related to your scar, to mucus or whether the vocal cords are not working properly. Knowing this will help you to get a referral to a specialist to help with voice such as a speech and language therapist or otolaryngologist which specialises in voice.
When considering major surgery:
How many resections/reconstructions have you done?
How many on idiopathic patients?
How many on nonidiopathic?
Help understand your surgeon’s experience in this difficult and delicate surgery. You want a doctor who has done many successful operations, specifically with patients like you. You also want one with an excellent team around them and a recovery department at the hospital which is used to dealing with this type of surgery.
What is your success rate?
How do you define success?
For example, a resection will last, on average, ten years. Does your surgeon consider this a success? What percentage of their patients return for more surgery within a decade?
What do you see as the general risks of this surgery?
For example Restenosis? Nerve damage? Infection? Trach? Weak voice? Unable to sing?
What do you see as my personal risks?
Help you understand any potential issues specific to your situation and health – also help you feel comfortable the surgeon has considered all options in recommending this operation for you.
How can I personally reduce my risks of complications?
For example this may mean gaining or losing weight, cutting out bad habits, doing preoperative exercises or stretches
How long will I stay in the hospital?
You may have work and/or family issues to consider when booking this surgery, so timing can be a consideration in deciding whether to or when to proceed.
Can I talk to any of your former patients?
Most experienced surgeons will have patients who are willing to share their surgery story and help you decide whether you are comfortable proceeding with the surgeon and procedure.
What is your major complication rate?
What major complications have you experienced?
This will both help you prepare for the worstcase scenario, and help you build confidence in your surgeon’s ability to cope with unexpected issues during a major surgery. If you feel uncomfortable with their answer, then seek a second opinion.
What happens during the operation? How long does it last?
The more you understand in advance, the more comfortable you will feel about the surgery.
What can I expect when I wake up? (e.g. lines, drains, masks, catheter, feeding tube)
If you know what to expect when you wake, then you will be mentally prepared to accept your situation and move forwards with healing. You can warn friends and family in advance what to expect if they visit you post-surgery.
How will I feel when I wake up?
(Pain? If so where)
Understand more about managing expectations and how the recovery team will be managing this – through pain killers or muscle relaxers, steroids and so on.
When will I be able to eat and drink normally?
For example moving on from ice chips to solid food or having a feeding tube removed.
How long before I can go home?
Understand how long you are likely to be in hospital before discharge. If you live a long way away from the doctor and need follow up appointments, it may mean staying somewhere nearby to attend those.
What sorts of complications might I encounter after leaving the hospital and how should I deal with those if they occur?
It is worth having a plan in place for any difficulties such as challenges breathing, swallowing, or talking, pain in your neck or elsewhere, and how to manage those. Will your doctor share a direct email or phone number for you to contact? Or is there a nurse or registrar you can call if you are concerned?
Will I have any restrictions once I go home?
For example there may be restrictions on voice (voice rest), driving or exercise. You may need to eat soft food for a while or avoid certain foods or drinks.
Am I likely to need to take medication once I am discharged? For how long?
These could include steroids, anti-reflux medication or antibiotics for example.
Gibt es irgendwelche Geräte, die ich zu Hause benutzen müsste?
For example after surgery you may be told to nebulise three times a day to help keep your airway moist and aid the healing. Others may recommend a humidifier to make dry air (e.g. in heating or air conditioning) easier to breathe.
Above all, make sure you never feel bullied into having surgery with a doctor if you do not feel 100% comfortable. It is your right to seek a second opinion, it is your body, you can always say no.