Surgery day – Branchial Cleft Cyst Removal Surgery

Surgery Day – Branchial Cleft Cyst Removal Surgery

**Warning** This post has some images that may make your tummy hurt.  Nothing TOOOO terrible though 😉

Hey guys!  Today was surgery day for me! Finally!  I felt like the past month of waiting for it seemed to take FOREVER.  I had my branchial cleft cyst removal surgery this morning at 7:30 am.

If you’re following my blog, I was diagnosed with a branchial cleft cyst in my neck (read first post here about how I found out).  This is a rare congenital defect which means I’ve had it since BIRTH but never knew about it until recently.

This type of birth defect is also called branchial cleft remnant.

It occurs during fetal development when tissues in the neck and collarbone, or branchial cleft, do not develop normally. It may appear as an opening on one or both sides of the neck. Usually these things (sorry if this is all TMI) have a tract that looks like a long tail attached to it.  The tail can either wrap around other nerves & muscles (making it much harder to operate on), muscles or even form a skin tag which has an opening to OUTSIDE your skin where fluid drains out through your neck.  (very glad I didn’t have that type!!) Luckily I had a type II branchial cleft cyst with no tract.

Sometimes these tissues form a pocket, or a cyst filled with fluid draining into it from within the body.

I never knew I had anything like this going on in my body until recently.  There are no side effects and no pain.  Why it decided to swell up NOW when I’m 30 years old?? No F’n Idea! Lucky me I guess.  haha

Surgery was scheduled for today at 7:30am but I had to get there at 5:30am so it was an EARLY morning.  I was super anxious last night so I barely got any sleep at all…if any.

I threw on my sexy hospital gown, socks and had an IV put in.

Branchial Cleft Cyst Surgery

Excuse the no makeup pic but I’m not the kinda gal who goes to surgery with a full face of makeup haha.

Branchial Cleft Cyst Surgery

My hot man was SUCH a trooper all day.  He woke up with me at the butt crack of dawn, made me calm down when I got anxious (which was like every 2 seconds haha), texted my family with updates all day, picked up my prescriptions, carried around my purple zebra bag and drove my drugged up ass while listening to me make zero sense. I found myself a keeper! <3

Branchial Cleft Cyst Surgery

He looks THRILLED to be up at 5:30 am, right? haha

One of the bigger risks of this surgery is nerve damage since the incision is right by major nerves for the face, tongue, ear and shoulder.  This took my anxiety to another level.

My anesthesiologist noticed my anxiety and loaded in some Valium into my IV which was a total game changer for me.  I went back to the operating room without a care in the world!  I’d HIGHLY recommend that to anyone going into surgery!

The surgery took about 3 hours.

They told me before I went in that they would try to send my cyst to pathology while I was asleep.  If they found it to be cancerous, they would also probably have to remove my tonsils and several nearby lymph nodes.

THANK GOD BECAUSE THE RESULTS CAME BACK CANCER FREE.

BEST . NEWS . OF . MY . LIFE!!!!!!

I was then stitched up and moved to the post op room.  As soon as I woke up, I tried moving my face, shoulder and tongue around and realized I had no nerve damage.  THANK GOD!

After I woke up and they managed my pain and nausea with meds, one of the docs said “aww our entertainment for the day is leaving us???”  I was like ohhhhhh boy, what did I do? haha

The doctor said I was being hilarious and talking quite a bit.  They said usually everyone tries to rip off the oxygen mask after surgery but apparently I wanted to wear the oxygen mask on my head, upside down instead.  I kept doing it and was referring to it as some type of hat (she couldn’t remember the word I was using) hahaha I remember ZERO of this little stunt.  Great job, Erin.  haha wow.

Well I hope I entertained the staff!

Knowing my luck, one of the nurses probably have it on video somewhere.  🙂

These pictures are a bit gross….so scroll down fast if you don’t want to see them.

Branchial Cleft Cyst Removal Surgery

My cut is from one side of the tape to the other so it’s even bigger than I thought it would be…but hey..it’s not cancer so I can’t be upset about it.

The red tube is a drain that I have to leave in for 1-3 days.  Sorry it’s gross..I told ya 😉

I hid the drain in my bra under my sweatshirt but there’s no way around hiding that big tube to my neck.  Gross.

Looks like this girl isn’t going in public for several days.

Branchial Cleft Cyst Removal Surgery

My pain is pretty rough but tolerable at this point.  I’m sure I still have some pain killers in me from the awesome hospital IV cocktails though 🙂  I was also given hydrocodone as a pain killer and that crap knocked me the F-out.  I slept like a rock for a few hours on the couch today.

I’ll do another update post in a few days to tell you how my pain is and what the incision is looking like.  I’m so scared to see what it looks like and face reality when I take the tape off.

Luckily I have no eating or drinking restrictions and I’m able to eat with no problem.  I thought my throat would be too sore afterwards to eat but it’s not somehow.  Another plus! (for today at least, not sure how tomorrow will be!)

Recovery time will be about a week.  No lifting anything over 10 lbs for 4-6 weeks (yep….that officially sucks) but hey…again…I DON’T HAVE CANCER so I’m doing a happy dance (in my head or course since that would hurt like hell right now haha)

I see a lot of movies, reading and writing in my near future.

Now I’m just going to pray that recovery goes well and the scar isn’t too terrible! (Read my recent post about how my next surgery scar looks)

P.S – I shared this info for two reasons.  #1 – I share just about everything with you guys…I’m an open book. #2 – I searched for days and days on this rare condition to find similar people who went through this procedure and couldn’t find much information.  I hope that someone, somewhere finds this information useful and calming.

XOXO

Erin

25 thoughts on “Surgery day – Branchial Cleft Cyst Removal Surgery”

  1. At least it’s all over, and Cancer free! My mom had a mastectomy a few years back and had to have three drains. Consider yourself lucky to only have one. 🙂
    Get some rest!

    Reply
  2. Hi there

    Can you tell me how long where you in hospital?
    I have to go but I am petrified!!!!!!

    Almost 2.5cm big

    Regards
    Johanna

    Reply
  3. Thanks for the post, it is really hard to find anything about recovery etc when it comes to the removal process. I noticed my cyst a year ago when it was 1.5 cm, and I was told it would pose no danger to my health. Albout 8 months later and 2 months before my wedding, it had grown to 3cm and I went to get a second opinion, who said i would have to have it out. It’s now 5cm + and i’m scheduled for surgery later this month and it was really reassuring to read your post. Thank you for writing something I can relate to and not some boring medical mumbo-jumbo.

    Reply
    • Alex, I’m so glad my post helped you. I wish you the best of luck in your surgery and try not to stress about it too much because that made everything worse for me. Come back and let me know how everything goes!!

      Reply
  4. This was exactly the kind of thing I was looking for. Thanks for posting about your experience and the pics too. Like you, my cyst suddenly appeared out of nowhere at 30 years old. Grew from nothing to full size (like a golf ball in my neck) in the space of about 8 weeks. Was a bit freaked out til I found out that it was just a branchial cyst (which I had never heard of before, and assumed the worst like some sort of cancerous tumor). I have my surgery in a couple weeks, and had been told about the drainage tube thingy that they leave in afterward, so I wanted to see what that was all about, hence why I found your blog. I do feel a bit…queasy…at the thought of having to leave a tube coming out of my neck draining fluids….but whatever works I guess. Did it feel unpleasant or painful having it in your neck? Ugh, the faster that thing comes out and it all heals up the better.

    I checked out your scar healing post and yet again you provided exactly the kind of thing I was hoping to find, so thanks again! It’s a pity the scar didn’t seem to vanish as much as you’d hope, well at least not yet. Time will tell. I’ll try to keep on top of any sorts of scar healing remedies I can find to help mine along. At least I also have the advantage of being a guy, so I can grow my beard in a bit for added camouflage of the scar if I really want to (not that neckbeard is a fashion statement I’d want to wear often, but hey, lol).

    Reply
    • Don’t worry about the drainage tube.. after surgery you’ll just be so relieved it’s over you won’t care about that stupid tube. It’s not in for very long either so it’s not terrible just a little annoying to make sure it doesn’t get caught on anything and tugged at.

      I’m so glad you found my post helpful. Best of luck to you and your surgery. Come back and let me know how it goes!!!

      Reply
      • I had my surgery on March 11. I have been quite impressed with how relatively simple and painless the whole ordeal has been. Very little pain afterward, just a little background aching/throbbing every now and then. Didn’t even really need the pain medication they gave me (although I took some anyway just to help a bit). You’re right about the drainage tube, the idea of it was probably worse than actually having it. It wasn’t a big deal, although despite my doctor’s reassurances to the contrary it did hurt a moderate amount when he took it out (more acutely painful than any of the residual surgery pain to be honest).

        The main difficulty after the surgery has been with eating, since the motion of the jaw and neck while chewing and swallowing causes a bit of pain and discomfort. So I’ve stuck with mostly fluids and things that are small and don’t require much chewing.

        All in all a fairly straight-forward and quick recovery. Stitches come out at the end of this week. Then I can actually see the damage and start working on the healing process.

        Reply
  5. Hi again Erin,

    I wanted to follow up with another question regarding your recovery. It has now been 2.5 months since my surgery and I still have some numbness (not a lot, but is a bit strange/uncomfortable to the touch) around my jawline/neck on the side of the surgery. I imagine you probably experienced something similar? If so, has it returned to 100% normal feeling by now, or is there still some numbness?

    Reply
  6. Had this done at age of 6 with the dreaded news with it so feel ur pain had forgotten lot about this until reading this in it’s of strange way brought back a lot of memories I’m 32 now so can’t complain I’m alive and kicking

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  7. Hey, I also had this operation on 19th of this month. I was very nervous after everything that had been explained to me by the doctor. I only drained 9ml out of the 20ml i was told i needed to drain before i went home. On the Saturday I felt immense pressure under my jaw, so i went to the hospital & the nurse told me i may have a blood clot. We waited for a doctor to come & he just gave me antibiotics & pain killers & told me to go baxk if i still felt that way on monday.. so i went back as i could still feel it & they sent me hime saying i need to rest, but that is exactly what i have been doing. It has now been 7 days since my op & I’m not feeling the best. Im getting alot of pain in the baxk & side of my head & i sont know what to do, I don’t believe this is normal but no1 seems to want to do anything about it. I have to wait a further 2 weeks to have my check up with the doctor at the hospital. I’m going out of my mind.

    Reply
    • I forgot to mention, I have numbness along the side of my jaw & this may sound abit weird but my bottom lip is slanted abit like 😏 but it is up on the side where I had my surgery not dropped down, the doctor told me i should be fine but I don’t know

      Reply
  8. This is a tad late but I just had a branchial cleft cyst pop up on me last week at age 20! I’ve had two other cysts in my neck caused by birth defects, but I had them removed 12 and 15 years ago. I was actually curious how my new scar would look with my other two, so I’m glad I came across this. Thank you for this!!

    Reply
  9. Thank you Erin so much for sharing your story, it was very helpful with so little shared info on this. My 12 Y/O had a branchial cyst diagnosed 8 months ago. She had a stubborn infection and was hospitalized for 8 days for iv antibiotics. We were terrified of having her operated and for few months were hoping this will disappear. Eventually this didn’t happen and it got reinfected. As we prepared for a surgery her blood tests came out with some coagulation problem. She went through hematologist workup which revealed she had decrease in 2 coagulation factors ( we never noticed anything wrong with her clotting ) this added some complexity , and some preparation was needed for the surgery. Finally 2 days ago while it was growing once again she had her surgery. All went well and she is recovering Home already. A 5 cm cyst full of puss was excised. Surgery lasted 40 min. and was uneventful. A drain was left in for 1.5 days. So grateful to be after the operation and in the recovery phase.

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  10. I am so thankful for this, I have just been diagnosed and couldn’t find anything. I have 2 in my neck one is 5cm big and the other is 7.5cm, very scary times shuffling for surety later this month.

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  11. Thanks for posting about your surgery. My 2.5yo is having this done in a few weeks. The day we took him to the doctor for a bump on his neck, after an ultrasound, they sent us directly to a children’s hospital ER 2+ hours away from where we live. While in the ER, I went in to labor with our 4th child and had him in that hospital’s L&D. It was quite the day! My youngest will be almost 6 months on surgery day. My 2.5yo had a procedure in May where they cauterized the tract opening hoping to avoid full cyst removal, but the cyst came back a few weeks later. It’s a rare enough condition that even with google, it’s hard to find much to read about it. The surgery definitely makes me nervous, but I’m ready to have it behind us! When his cyst flared up, it would cause difficulty swallowing, and he would throw up as well. Poor kid. But this Mama will be having some anxiety on surgery day too!

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  12. Yes, thank you for this blog! I was diagnosed with the cyst in the spring of 2018 and now it is October and I’m ready to get things rolling for having it removed. I live in a small city and nobody does this here, so I have to travel about 4 hours for the surgery.

    I can’t find any info on what the size of it is, but this is one sentence from my doctor: The mass extends fairly deeply into the soft tissue spaces of your neck and face.

    Thanks for your positive experience and I like the responses too! I’m 59 years old and only discovered the cyst because my dog was licking my neck LOL and it was a touch sensitive. I got to looking in a mirror and noticed it was “swollen.” I waited a month or two before seeing my doctor. She ordered an ultrasound and then they wanted a better view so I had a CT scan. My next step is to travel to meet with the new doctor(s) and go from there!

    I wonder how long it has been there or newly developed? The past two times I had a head cold I had excruciating pain in my face, I mean unbearable, and wonder if drainage is not right because of the mass. I lost a dog this spring and from the crying (cry baby), and had the same facial pain. I have not had a cold in a good 4 years (lucky me) though.

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  13. Thank you so much for your post. I also had a branchial cleft cyst, which was removed a fortnight ago.

    When I was diagnosed I also searched the web for information and found very little until I stumbled across your posts. Honestly, they have been so informative and really helped put my mind at ease.

    I’m in the UK where the healthcare is different and I ended up with a two night hospital stay. This was probably down to two reasons. Firstly, the surgery was late afternoon and I wasn’t out of the recovery room until 9 o’clock at night. And secondly, the cyst was rather large and had a tail that was wrapped around the nerve to my shoulder. This meant the surgery was more invasive than I would have preferred, and the incision went from below my ear to the front of my throat and was held together by 24 surgical staples.

    But, and this is the good news, there was no damage to my nerves at all, so I have retained full movement and I found out today that there definitely was no cancer which was a huge weight off my mind.

    Anyway, thank you SO much for your post. It really was the most informative and practical information that I could find and it helped me a lot during the sleepless nights when I was waiting for my surgery.

    Reply
  14. Hi my name is Fran, and I had a noricably large mass on my neck that popped up about 1 year ago in April. After ignoring it for a few months, with stress, agggravation, an illness, the mass had gotten larger, and painful with eating and moving. I am 52 years old, and it popped out at the age of 51. I noticed that everyone else on these posts had their cyst pop out much earlier. I think that is crazy! Like Erin, we had a cancer scare also, so thank God it all turned out to be benign. I had the surgery on March 26th. No drain, but I am still having to this date numbness annoying to touch mild pain sensation. I was wondering if anyone else was experiencing the same ? The Dr said at the follow up appoint that it was normal. So far the numbness is starting to slowly go away , however there stilll is an area under the chin and mandible that is still numb. Is anyone else experiencing the same thing?

    So grateful it’s not cancer will take the numbness in exchange! I await your response.

    Reply
  15. Hii! I’m getting this surgery in two weeks and the doc said it takes aprox 45 minutes? (since he opens and closes, not counting the anesthiasia thing) yours lasted 3 hours?? I’m soo scared

    Reply

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