Tracheal Stenosis

So you have probably heard me mention many times about my tracheal stenosis, but I dont think that I have ever explained what it is.

Tracheal stenosis is basically a narrowing of the airway (trachea) My main issue is subglottic stenosis, which is the region just underneath the vocal cords. It can occur for no reason, but this luckily dosnt happen that often. It can also be caused by a disease called Weggners or from trauma or chemicals. In my case, it is caused by prolonged ventilation and previous tracheal surgery. I was ventilated for abour 18 days using an endo tracheal tube (Normal tube that goes through the mouth) but eventually had a tracheostomy put in to make me more comfortable while ventilated. This was in for about 2 months before I managed to get rid of it and allow it to heal. About a week after it healed I developed a serious case of Pneumonia and had to have the trach put back in to allow ventilation again.

So what symptoms are associated with tracheal stenosis?
The severity of the symptoms depend upon how much of the airway is occluded, but basically anything that restricts your breathing.
So the main symptom is shortness of breath. There is also often a stridor present (like a whoosing noise when breathing, or noisy breathing.) College friends used to call me Darth Vader as they could hear me before they saw me. It can also cause difficult or laboured breathing, which can result in extreme tiredness. If the occlusion gets to bad, you can literally be fighting for each breath. Because you are not breathing as well, you can show signs of cyanosis (Which is a blueish tint to the skin, lips or nails) Because it irritates the airway, stenosis can often cause a lot of coughing.

Tracheal stenosis can be diagnosed in a few different ways depending upon your presenting symptoms and your medical history. Breathing tests, where you breathe out as much as you can into a machine, can often indicate that their is a restriction and how server it is, but they can not locate where the restriction is. X Rays, MRIs and CT scans can all show where the restriction is giving the surgeons a better idea where they are working, however it is difficult to know what the tissue is like using a scan.

Laryngoscopy and Bronchscopys are the best form of examining tracheal stenosis. They allow the surgeon to have a fully look at the area and take samples should they been needed. For me Bronchscopys became my life at one point, where I had 5 in one week.

Who looks after a tracheal stenosis patient.

Usually 98% of the time, you will be looked after by an ENT (Ear, nose & throat) doctor however you may also see other doctors too. I was first reviewed by a Chest doctor due to breathlessness and repeat infections and hospital admissions. After trying a few treatments and tests, he reffered me to the ENT doctor.

The ENT doctor did what they could, but the damage in my throat went fairly far down so they then refered me to a Thoracic doctor. The thoracic doctor tried a few things that didnt really help and so I was discharged for a while.

Things gradually got worse and I was sent back to the ENT doctor, who liased with the thoracic doctor and both went to theatre with me to work together. I am now cared for by these two doctors, but I am seeing a specialist in London in ENT.

What does stenosis feel like?

There is a little test you can do to try it yourself.
Get a piece of card and cut some holes in it. They should be about 2mm, 4mm, 6mm, 10mm and 12mm in diameter. Put your lips over a hole and blow out. This is what it would feel like if you have that level of stenosis. For those with stenosis, do the same activity starting with the largest hole. Once you feel resistence, that is your level of stenosis. I often describe it as trying to breath through a straw. Perhaps try getting a straw of about 4mm-6mm and put it in your mouth and plug your nose. Attempt walking around and getting up the stairs to see how it effects you. People without stenosis begin to feel resistence at about 8-10mm.

Subglottic Stenosis scale

You hear people talking about percentages in lung function which is how much of their lungs are useable, but with stenosis, its more about how much you can breathe at once. Subglottic stenosis is graded by the occlusion to the trachea.
*Grade 1 - Obstruction is less than 70%
*Grade 2 - Obstruction is 70-90%
*Grade 3 - Obstruction is greater than 90%
*Grade 4 - Full obstructed.

In the past year, I have gone from grade 1 to grade 3, where I am now. Without my trach, I would be breathing through less than 10% of my airway, which would be less than 2mm, hence why I have virtually no voice.


How is it treated?

Treatment will depend upon the level of stenosis and how it effects you.
If you hardly notice it day to day, I would advise not going for treatment

Providing you are not in a position where your airway is compromised (Where there is a chance it can quickly become fully obstructed) generally the surgeons will start with some laser surgery, which basically burns off the extra tissue that shouldnt be there. They may also use Dilation, which is a technique where they cut into some of the tissue, then blow a balloon type thing up to help expand the airway. These can all work in the short term but you will often require more.

The next stage is to try placing a stent into the airway. A stent is like a piece of material that expands and holds the sides of the trachea open. Stents, for most people can work long term with no problems.

I had a couple of laser surgeries on my trachea to remove the stenosis, but the area was so large, that my trachea became floppy and unsupported, meaning that it would not hold itself open. Therefore a stent was required to make sure the trachea did not collapse upon itself.

My body however, did not like the stents. As a for of fighting off the stent, my body tried to cover it with scar tissue, which once again blocked my trachea. The tissue was removed a couple of times, but kept coming back quicker each time, making my airway very unsafe, very quickly.

Therefore, the next treatment after a stent, is a tracheotomy. This is a tube place in the throat, that comes out just under the chin. It by passes the stenosis so avoids the danger of the airway completely blocking. However, trachs are not the best option long term. They have a high infection risk as well as having other risks and limitations such as the risk of water going down the tube.

The next stage of treatment is classed as open surgery and again varies depending on the level of damage. A tracheal resection can be performed. This is where the trachea is opened and the damaged rings removed. The two ends are then rejoined and stretched to create a full trachea. This is major surgery and involves a lot of recovery time. It might even be nesscary to have your chin stitched to your chest to prevent the trachea from moving whilst it heals. However, this kind of surgery has shown great results, with few complications. The downside to this surgery, is that generally, they can only remove upto 4cm of trachea in an average adult. (Last september, I had 5cm of damage, but it has since increased)

The other treatment option is tracheal reconstruction. This involves taking some cartilage from your ribs. The damaged tracheal rings are then broken, to have either one or two gaps in them. The rib cartilage is then used to fuse the gaps in the tracheal rings and therefore holding them open. This is a long and painful process requiring a few surgeries as time goes on to remove any scar tissue that may form. It is also not a good idea for idiopathic (No known cause) of stenosis as the stenosis can return fairly quickly.

Future advancements

There is currently a lot of research being put into tracheal transplants. This would involve putting a donors trachea into the patient, which can be tricky as it is a tissue which needs a full blood supply. Scientists have found ways in which they can strip the donor trachea of its cells and coat it in the patients cells, therefore tricking the patients body into thinking that it belongs their, so not to attack it, like would happen with a normal transplant.