The Surgery: Thymectomy (Removal Of Thymus)
A thymectomy is a surgery that involves the surgical removal of the thymus gland.
This blog post contains graphic images that are REAL from this surgery.
There are few chronic illnesses that would require this type of surgery.
After consulting my neuromuscular specialist, this surgery was the obvious next step in attempting to control my Myasthenia Gravis symptoms.
The thymus is a gland in our bodies that is located behind the sternum (breastbone).
It is responsible for producing important key players in our immune system.
After the time around puberty, it no longer functions the same and shrinks in size.
Unfortunately, in my condition, the thymus is commonly enlarged or seen with mostly benign tumors in that area.
The difficulty of finding out of the thymus is enlarged is very challenging for medical professionals.
The size of the thymus and its tissue is not always seen on imaging.
You know how I'm always saying trust yourself? This is why...
Personally, I have had a minimum of 20 PLUS cat scans over the years that never showed the appearance of an enlarged thymus.
Even in the last few cat scans they were specifically looking for an abnormal presentation in this area...
Nothing was seen. Ever.
Now onto the surgery...
SPOILER ALERT: My thymus was 100grams (30 or less would have been normal) and its tissue was wrapped around my heart and grew in my neck region.
There was also a cyst (or two) found on my thymus.
Determining how a neurological consultation could lead to this surgery has to be saved for a separate post.
I KNOW that finding a neuromuscular specialist that studied Myasthenia Gravis exclusively for years was the holy grail of my survival.
Now on to the cutting...
Let’s say that you have been recommended to have a thymectomy.
This time can be a little stressful as you are probably experiencing some type of symptoms related to your illness.
Scheduling has to be lined up with your medical team and the surgical team.
One difficulty I had during scheduling was due to COVID and the ICU’s being full.
All elective surgeries were postponed ONE DAY after my surgery was scheduled, so it is something to be aware of if your time is during a world wide health concern of any kind.
It is also important to understand that this is a MAJOR SURGERY and you want to make sure all resources are available to you just in case your breathing becomes a concern.
In Myasthenia Gravis, this surgery can actually make your symptoms worse from the anesthesia and stressors of the surgery.
Some of the tests that may be ran prior to the surgery include:
CBC/Bloodwork: This is to ensure that you have no active infection and that there are no other surprises for your medical team.
Catscan: Even though it is not always possible to see a thymoma (tumor on the thymus) or hyperplasia (enlargement of the gland), it still can be seen sometimes. This is a chest CT that is usually done with/without contrast. Keep in mind that if you have Myasthenia Gravis, the contrast may cause unwanted symptoms from your condition.
PFT’s: Lung function tests may be performed to see how well your breathing is and that it is at a level where you can handle the anesthesia. Common tests for Myasthenia are the MIP/MEP tests that measure the diaphragm function specifically, but the lungs also need to be evaluated. For more information on breathing tests CLICK TO READ HERE.
There may be other testing that your medical team asks you to go through.
A lot of times with chronic illness, we have more than one condition that is effecting our daily lives, and these will need to be check on (such as thyroid issues, diabetes, etc).
It is very important that your MG is in control and pretty stable before undergoing a thymectomy.
Prior to surgery it was suggested that I had plasmapheresis.
I'll have to explain plasmapheresis in another post.
The reason for doing this treatment was to make sure my body was as strong as it could possibly be.
I was admitted to the hospital and plasmapheresis was performed prior to my surgery.
This is the access for the plasmapheresis... I think this was the most uncomfortable part in my opinion.
This was the safest way for my personal situation and the location of my surgeon was about four hours away, so it made the most sense.
Choosing your surgeon should be a top priority!
It was very helpful to have met the person who was going to be cutting me open.
After listening to him explain the procedure, I was confident I had made the right choice.
I chose a cardiothoracic surgeon that worked closely with my neuromuscular specialist.
This decreased so much anxiety about the surgery itself.
I felt like this was "riding a bike" for him and that was impressive to me considering how rare the condition and surgery are.
Types Of Surgery:
I had the trans-sternal option of this surgery.
When first considering the thymectomy, we planned on VATS (a video assisted thoracoscope surgery).
Again, I can not emphasize the importance of choosing the surgeon.
Mine decided he would need a clearer field of view, and wanted to go in through the sternum.
He explained that since nothing showed on the scan, if the thymic tissue had grown in other places, this would be easier.
He was absolutely correct. As mentioned before, my neck and heart were both in the equation.
Different Types Of Surgery:
Trans-sternal: This is the one that is similar to open heart surgery or a sternotomy. The incision will be over the sternum. Your chest cavity is basically opened down the center. The sternum is then reconstructed with wires.
Trans-cervical: The sternum IS NOT divided. This is a surgical procedure through the neck.
VATS (Video Assisted Thoracoscopic Surgery): One of the most common because it is less invasive. There are several small incisions made on the chest and on the side of the chest. There is a camera inserted in one of the incisions. The surgeon is then able to use other incisions to remove the thymus and its tissue.
RATS (Robotic Assisted Surgery): A surgeon is still required, but uses the robotic arms for removal of the thymus. A camera is still used for vision. This is also a less invasive approach where the chest is not opened up, and the ribs are not separated.
Depending on several factors, your type of surgery will be chosen by your medical team.
We are all different.
I assumed the best route would have been the VATS, but I was completely wrong in this way of thinking.
Even though it was less invasive that the trans-sternal, I needed for the surgeon to be able to remove ALL OF THE TISSUE that may not have been seen using the robotic technique.
There are several factors that your medical team will have to look over to see which type of surgery is right for you.
Several of the support communities I was involved in told me this was way too risky, or not the "right procedure", but had I listened to them I would've had to been "opened up" anyway because of the location of the thymus.
Did I Have Concerns?
As with every surgery, there are risks.
I am still undiagnosed with other conditions, so a fear of mine was going under the knife and no one knowing what else was going on.
This was just something I had to mentally work through and weigh the benefits out.
I made sure to have blood panels ran and visits made with all doctors I was working with at the time.
Because there were no issues found on my scans, I began to question my doctor’s judgement.
I mean, how could everyone miss something growing in my body for over nine years?
Was I being misdiagnosed again?
Clearly, this should not have been a concern. A thymectomy was the solution, but after years of being told the wrong diagnosis... it was a challenge.
Regardless of a diagnosis, I had too large of a gland with a cyst that was growing outside of its normal area.
It needed to be evicted.
Anesthesia was another concern.
This is contraindicated with my condition.
I have had other surgeries, and the aftermath of anesthesia left me almost paralyzed in specific areas of my body.
Because the specialist was aware of this, different anesthesia was used. This is common with MG.
Even though I am still recovering, I do think my concerns were valid, but addressed.
If you have other medical conditions, I think preparing for this surgery is very important at least for the peace of mind.
I had the trans-sternal thymectomy performed on August 9, 2021 by a cardiothoracic surgeon.
The night before I was instructed to clean with wipes in the area that I would be operated on.
I was not allowed to eat or drink after midnight because of the anesthesia.
The morning the surgery, I had a blood draw, my blood pressure taken, and my pain level assessed.
Before I could go under, there was a time period of about twenty minutes to make sure all of my information was correct and medications were verified.
Each person from the surgical team came in and introduced themselves and verified my identity.
I was given an extra dose of a steroid. This was explained to be important to have prior to the surgery and after because of the extra stress the body is about to go through.
Once the common protocols were completed, I was wheeled back into the actual operating room.
There was already an IV placed in my arm from my previous treatments.
I was not given the anxiety medication due to the effects it may have on my breathing.
I remember laying on my back and speaking with the surgical team around me.
For at least a half an hour I think everyone verified my identity and MADE SURE I knew what procedure was happening and what to expect.
And yes, they joked and laughed with me which HELPED TREMENDOUSLY.
This part of my experience was awesome and I am thankful for each individual who made this an easier and low stress time for me.
The surgery took place.
When I woke up, I was in the recovery room in some of the most immense pain I have ever felt in my life.
I have had other surgeries but this one topped the cake.
My breathing was terrible and my pain was in my chest and back.
I did have a bipap machine on that was assisting me with my breathing.
I had major swallowing difficulties and felt like I could not speak.
I was SO swollen and although I had gained over 100 pounds on prednisone, I think this made me even more "puffy" by about 20 pounds.
But I was alive, not on a ventilator, and on my road to recovery.
Pain medications were given at this time and I was monitored until stable enough to go back to the floor with my own room.
After Surgery In Hospital:
Pain medication. Pain medication. Pain medication.
I usually am one to vote on the natural remedies first, or to avoid the strong narcotics.
Not in this situation.
Take the pain medication.
Trying to get the pain under control requires you to take the medicine BEFORE it gets our of hand.
I felt like I could not sit up or use any abdominal muscles.
The middle of my back was cramped and on fire like I had ran a mile.
My breathing was not as great as normal, so I was on oxygen that really helped.
The pain in my ribs was so severe that taking a shallow breath was almost impossible.
Chest tubes were in my upper abdomen when I woke up. I do not remember someone placing these.
There was a small adapter attached to them for drainage.
This would measure the output so the medical staff could keep track.
I used pillows to support both arms and kept my bed elevated almost to a sitting position.
It was difficult to drink anything, and eating was out of the question.
My muscles were extremely sore. This pain was muscle pain.
I could feel the sternum area as tender to the touch, but the majority of my pain was actually coming from my de-conditioned muscles. I had been in bed for over a year at this point, so that is to note.
Nurses checked on me every hour at this point.
It was so nice to know that anything I needed could be brought to me.
I pretty much slept as often as I could other than getting up to use the bedside commode.
There was one time that I could not handle the pain and needed to use a bed pan.
I should’ve brought that bed pan home.
Getting out of the bed was the hardest part. Walking hurt, but getting out of the bed felt impossible.
For the best example, imagine trying to do a crunch exercise and being unable to complete one. As if your neck could not reach your chest because the muscles did not work.
Catching my breath so difficult and my voice was very weak, and hoarse.
I had one bandage on my sternum/ wound that covered a second bandage.
I also had an abdominal binder on over the dressing and around my breasts.
This felt like a sports bra and was pretty comfortable.
I even chose to leave it on for my four hour drive home a few days later.
Two-Three days was all I chose to stay in the hospital after the surgery, but this would have possibly been extended a little longer if COVID had not started filling up the ICU.
The risk of COVID was not worth it to me (I was still on Prednisone also), so home I went.
The drive was a four hour drive, so I was buckled in and braced with body pillows.
What a freaking car ride! I never knew how many bumps were on the highway.
POST SURGERY AT HOME:
My home was where I chose to recover.
I am not a millionaire, so this made the most sense.
I designed a chronic illness room for this type of situation.
Nothing fancy... just the basics and a sterile environment.
We did change it around a bit, but I'll share that later.
• Prevention of Blood Clots: walking really helps this. Compression stockings are also options for some people (not myself).
• Prevention of Constipation: Walking is also one of the best remedies to get the bowels moving after surgery. Making sure a high fiber diet and lots of water is consumed is also helpful. Now, I have GI issues, so I had no problems going back to my normal IBS style bathroom breaks.
• Pain Management: I continue taking my pain medication around the clock. I am on a lower dose than in the hospital and it is doing very well managing my pain at this time (one week to the day after). Sitting in an elevated position for sleeping was also helpful with keeping my pain levels lower.
• Log Roll: This is a technique used in nursing facilities. This allows you to roll out of bed without pushing off with your arms (which you are not supposed to do afterward for at least 2 weeks). I needed help sitting up even with an adjustable bed. Log rolls really helped me get up and down. This kept me safe and healing.
None of this was easy.
I was scheduled with a follow up appointment with the surgeon for two weeks after the surgery.
My neuromuscular specialist is also going to evaluate my muscle weakness and over all well being one week and three days after.
There is no driving!
I have not felt the energy or possibility of driving, but it is not allowed for a minimum of 2 weeks. With each type of surgery, this differs.
Ten weeks was the “recovery time” I was given to be able to lift, push, or pull anything over five pounds.
The recovery so far has been very difficult in terms of pain and movement.
I was given a body pillow for holding when I need to cough or deep breath. THIS HAS BEEN MY MOST FAVORITE TOOL.
It helped hold the chest together and also relieved some pain when coughing (the worst pain).
I would not be able to have been home without the help of my spouse.
If you have someone that can come to your home and at least make meals for you and help you transition from the bed to the bathroom, this would help so much.
This was my experience having my thymectomy.
Each person will have their own unique plan of action when getting this surgery.
There are different surgical approaches, other medical conditions, and of course locations to think about when having a thymectomy.
I was more than happy with the choices I made in choosing my medical team.
One of the MOST HELPFUL parts of this whole experience was having the confidence that my specialist would see my procedure from start to finish.
Having a competent and experienced professional gave me great comfort.
Surgeries can be scary, but necessary.
I think that educating myself on as much as I could really decreased my over all anxiety.
If I could change anything, it would be to have more support in place for my spouse who was struggling from a shoulder injury at the time.
He helped bathe me, feed me, all of the things… I think it’s safe to say he needed a vacation as much as I did after all of this.
If you have an upcoming thymectomy or any questions, feel free to ask me below and I will do my very best at answering the questions.
Hope you have a better kind of day today!
The CSPOT.org does not offer any medical advice. If you are experiencing an emergency, please seek the appropriate resources or services in your area. I no longer hold a medical license and these encounters are based on personal experiences. For more information see the terms and conditions. Affiliate product links may be used throughout articles or the website itself.