Nervous about Neck Dissection

Can anyone give me their firsthand experience about neck dissection? I have to have one pretty soon, and I'm quite nervous about it. Let's be honest, when we hear the word dissection, don't we think, FROGS?? Like, cutting up dead things :(

I feel a little betrayed by my surgeon, because I had my TT split into two surgeries, when apparently what I really needed was TT plus neck dissection and it could have been done all at once, instead of three separate surgeries. The swollen lymph node was what took me to the doctor in the first place, and they ignored it! Now I have a new surgeon, and 3 months out from TT, I'm still waiting for the date of my neck dissection.

I swear, the waiting is the hardest part. I've done TOO MUCH research on neck dissection, and it's driving me insane. My surgeon said the incision will start behind my right ear and go all the way to my thyroidectomy scar! This sounds horrific! Can anyone reassure me?

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Hi Sunnysue,
That really stinks that you have had to go through two surgeries already in addition to the neck dissection ahead. I had a central node dissection with my TT in December and I am also an ENT nurse who takes care of patients like us post op. Neck dissection incisions do typically start behind the ear and go to the front. The surgeon usually follows a path along the natural skin folds of your neck. Most patients go home the next day after surgery with their pain well controlled. Hang in there and best wishes that this will be the last surgery!
Blessings, Denise

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Hi Sunnysue,

Denise is correct, most people do go home next day and pain is well controlled. Is you neck dissection right or left or both sides? Also is it Modified, radical, or extended modified?

From what I understand and have experienced, your recovery is highly dependent on the number of levels dissected and the location of those levels. All neck dissections are not created equal. (LOL)

I had a central dissection in 2008, and it was easy as pie. No real difference between that and the TT as far as recovery etc.

I had a bilateral neck dissection in October (Levels 2-7), and that experience was totally different. I have a scar from ear to ear but The scar is the least of my worries. It is in the fold of the neck and I have shoulder length hair, so you can only see a small section. Dr's or nurses notice, but I don't think many others do.

Do you know the details behind your surgery (which level etc) that you can share?

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Thanks for the replies so far! He didn't tell me specifically what it was called, and I'm not sure exactly which levels, but it's on the right side only. I usually get all those answers, but I was kind of in shock I think. He was just calling it a neck dissection, and showed me with my hubby for an example where the incision would go. My other surgeon (they speak to each other) told me it was selective. I know he plans to preserve my spinal accessory nerve, sternocleidomastoid muscle, and jugular vein if possible, so it's not radical.

He told me I would in the hospital for 3-4 days though! I think it's because there will be a drainage tube, and they won't let me go home until I'm done draining, whereas in the states I think they let you go home afterwards and come in later to have the drainable tube removed? Being on the British system is pretty strange. Fyi I am a military wife.

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Since it is selective, and it preserves all major nerves/veins, I think you will have no issues with your recovery. The levels are below. Find out which level (s) they are clearing next time you speak with your surgeon. I had 3 drains and was released the next day, so you are lucky you are not in the states. It sounds like you are in good hands. Don't worry about it too much because it looks like all indications are good! You probably will not feel much worse than when you had the TT.

Good luck! and let me know if you have any other questions.

Level I – Submental and submandibular
Level II – Upper deep cervical
Level III – Mid deep cervical
Level IV – Lower deep cervical
Level V – Posterior triangle
Level VI – Paratracheal
Level VII – Superior mediastinal

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I am not finding alot of information on neck dissections on the internet. I have seen the chart of the sections of the neck. It definitely makes me nervous too !!
I may have a neck dissection for a suspicious Level lll node. The surgeon has ordered an MRI, to see if he can get a better view at the node, before deciding whether he needs to remove it. He did not explain to me, other than the cut around my neck would be larger,I'd have a drain, and I would stay in hospital longer. He did not discuss the specific risks that are involved in a level lll dissection. He didn't use the term 'selective'. I will ask him that after the MRI. This has me worried, too. Has anyone had a Level lll dissection, and can you tell me did you experience any after effects such as loss of range of movement, or excessive bleeding? I don't like fishing for a suspicious (unconfirmed) node, in an area that could potentially have extreme risks. Have you heard of looking for a specific lymph node? Am I over reacting, I hope so. Thank you!

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I had a Level 2-7 neck dissection (which includes level 3). Generally speaking, they will need to find the node and do a FNA to test for cancer prior to removing it. If it is found to cancerous, they will remove all lymph nodes in that section. Unless they cherry pick (just take that one node). Cherry picking is frowned upon these days by the large cancer hospitals, because chances are that there are other nodes in the area that have trace amounts of cancer and could enlarge over time. Doing a complete removal of that section minimizes the chance you will need another surgery.

Level 3 is a common level for thyroid cancer mets, so it is not unusual.

If your node is found to be cancerous, make sure that you have an excellent surgeon that has done this surgery many times. If you can go to a large cancer hospital that specializes in endocrine cancers or head and neck cancers, it is your best bet.

Neck dissections are done frequently for head and neck cancers so you should be able to find someone.

That is not the level that generally causes permanent range of motion issues but you may need Physical therapy afterwards. Good luck! and don't worry too much

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Thank you for the info. I may require another FNA, that is interesting . I have a Head and Neck surgeon, at the University of Miami, Sylvester Cancer Care Center, so, that is a step in the right direction. I appreciate the explanation concerning the removal of the node. I am trying not to worry, but for me, that is really difficult !!!! Thanks so much.

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Hi i hada neck dissection in the Uk ASt the end of May 2010, the incision goes from behind my right ear down to my collar bone then along the base of my throat, they removed 29 lymph nodes of which 9 were positive for papillary cancer. As i am resistant to RAI, i have had to have external bem radiotherapy.
I had the op on a Friday and was home on the Sunday.
Hope everything goes well with your surgery. XX

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Finally got a date for my surgery, it will be on the 12th of February. It was my surgeon's secretary who called me with the date, so I still haven't been able to get the info on what levels will be dissected. She told me that she had forwarded an email I sent with the request to him but he never got back with me. I know surgeons are busy and highly-sought-after surgeons are even more busy, but geez, it would only take about five minutes to let me know! And I guess maybe they use different names than in the US because she told me it was listed only as a "right neck dissection," not Modified Extended Radical Selective or anything like that lol.

To Xmas... just want to say, I would never have agreed to a surgery like a neck dissection without a biopsy confirming cancer in there. So if they haven't mentioned an FNA or a core biopsy, you might want to bring it up to THEM.

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I think everyone's neck surgery is unique and it depends on where the cancer was located and what lymph nodes need to be removed. I've had two and my scars are not bad. My first scar is like a thyroidectomy scar, but a little longer (wider, I guess). My second one is like a "cat scratch" from just below my ear heading vertically down. Both aren't even visible now unless I point them out to people (it's been 15 years). But again, each person's will be unique. Hang in there!
dj

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Sunnysue,

Based on your posts and everyone's great replies, I wanted to wish you a speedy recovery this week after surgery.... I just had my surgery on 1/27 and I had a TT and left side selective neck dissection. Please know that I was planning to stay for 2 nights and got released from the hospital the next day. I am doing great and the soarness is manageable. My scar is from my ear to my center neck (thyroid zone...). I had a great surgeon and one thing that made it easier was having him explain so much in detail. I hope that your doctor will or has now taken the time to answer your important questions and give you some peace of mind before the surgery.

Thinking of you this week and looking forward to hearing that you're feeling well soon!
Leah

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Thanks everyone who replied! I feel like you've made this surgery seem like something manageable rather than something incredibly scary.

Leah, I'm so glad you posted! They have me scheduled to stay two nights but I was really hoping they might send me home the next day instead, since I can never get comfortable in hospitals. (I stayed overnight for both my right and left lobectomies and I couldn't sleep at all~!) Happy to hear that you're doing great with manageable soreness. Gives me hope for myself ;)

Daria, it's really nice to know that the scars won't be as visible eventually. I still stare at my thyroidectomy scar in the mirror although people tell me that even after 3 months they think it just looks like a line in my neck. Hopefully someday I won't be so self-conscious about it! I've been really worried about the dissection scar, so having you refer to yours as a "cat scratch" makes me feel better.

I know it probably seems like my surgeon didn't give me much info since I haven't been able to pin down the exact levels he is dissecting, but he really did. He spent over an hour with me explaining what the surgery would be like and answering all my questions. I took in a long list of questions about structures in the neck and side effects, and when I told him I thought he had answered them all, he even asked for my list and looked it over and told me a few more things. I definitely think that knowing more about the surgery has made it seem less frightening!

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Leah, have they given you some exercises to do? I had a neck dissection in June 2010 i wasn't given any exercises to do and now my neck is extremely stiff.

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Ok, question, my neck dissection is looming huge over me now, it's in two days, on Saturday, and I'm wondering how soon will I feel ok being left alone afterwards? My husband has the weekend and Monday off but is supposed to go back to work on Tuesday, do you people who have been through it think three days afterwards I'll feel alright enough to be by myself? It wasn't an issue for my thyroid surgeries, he had plenty of time off (long story) and I don't remember when I felt like I was ready for him to go back to work anyway. Let me know if you have an opinion!

I'm pretty curious about the exercises too, I know I'm not looking forward to not being able to do my daily yoga for several weeks afterwards. I feel like any stiffness I had after thyroid surgery I was able to work out with that yoga. Anyone have any info about all that? :)

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Sue,
I didn't find this thread until tonight, and you should be a few days post-op by now. I read your story, and all the comments that have been given. I am about 20 months post-op now for a Selective Neck Dissection where they took zones 4-5. I found that I felt fine from the day I came home (Aside from complications of the breathing tube... grrr), and never really needed my wife to stay home to take care of me. I slept more than normal for a couple of days, but after about a week, I was feeling pretty good. I think I was given 2 weeks off from work, though I felt good enough after the first week.

Just today I went back to see my Doc for something that is a little concerning. I've regained almost full sensation in my neck and ear, even though they told me that my ear was almost certain to not come back. What's concerning me now though, is that just last week, I started noticing that I am losing strength in the left side of my face. It's pretty minimal, and nobody notices it but me and my wife, but I'm hoping it's only temporary. I went to see Doc today, and he says it's uncommon this far out from the surgery, but still thinks that because my post-op pathology reports came back clean, it's probably just scar tissue pressing on the facial nerve. His supposition is that it will settle itself out in a couple of weeks. In the meantime, he's ordering an MRI for next week. We'll see. He's been a good doc, so I trust him, but it's nerve wracking! No pun intended!
Jim

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Oh, and of course! The whole reason I wanted to post!! I was wondering how things went for you!!! It's been a few days now, and I don't know if you're feeling up to checking online, but Im sure Im not the only one curious to see how things went for you.
Jim

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Jim, thanks for posting. I really hope that it is just a bit of scar tissue and it goes away! That sounds like it would be pretty scary, and not one of those things you would expect to happen.

I had what I guess I think of as a complication after my dissection, which is that two days later I started to have extreme pain in and under my ear, which now hurts from my jaw to under my ear and down my neck (behind the incision) all the way to my back in an arc. I put up another post called Neck Dissection Horror where I explain it a bit... it's been six days now and the pain is still pretty bad. I guess I can see why they would say this isn't a painful surgery because the incision has not hurt at all, but this muscle pain is just insane. I went to see my first surgeon (the one who did my thyroid surgeries, not the dissection) to have my stitches out, and he gave me flexeril to take hoping at least to stop the SPREAD of the pain, and it does seem to be helping some.

I realize that they can't anticipate everything that might happen during and after a neck dissection, but I find it really irritating that it seems like my surgeon refuses to admit it could be anything relating to the surgery. I mean, he said he thought it was TMJ! What are the chances that I suddenly developed an unrelated condition that was causing my pain right after I had surgery on my neck? Does he think I'm stupid?? My first surgeon said that he thinks that they didn't get the root of the spinal nerve that they would usually cut during this surgery, and of course once muscle pain starts, it spreads if not taken care of.

I guess I would say I am doing ok, not great, but ok. The pain is slightly less every day but I am very grateful I don't have a job because there is no way I could go back right now. For a surgery that is "painless" this one is sure doing a number on me!

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Hi Sunny Sue, since i have had radiotherapy to my neck (I am RAI resistant) I have had a lot of muscle pain down the side of my neck and across the front of my throat, so much so that sometimes i think it is affecting my breathing with the pressure.
I too had surgery in the UK, they do not seem as hot on with thyroid cancer here as they do in other countries. I have broached the subject of the pain and stiffness on several visits back to the surgeon and he just keeps fobbing me off. I have an appointment on the 7th of March and i intend to get some answers. Surely i shouldn't still be having problems 8 months post neck dissection and 3 months post radiotherapy.

Hope your pain eases for you, there is nothing worse than muscular pain. XX

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