"Bilateral" neck dissection?

• By BrennaMichelle
• Reply 3708518
• January 15, 2013 at 4:27 pm
• Report post

I had a modified bilateral neck dissection done Dec 18 2012. Mine was modified because he did not take out anything other than lymph nodes. If they are not taking out anything besides the lymph nodes and thyroid- I would not cosider that a radical. I am up and moving. I was walking the halls of the hospital the day after surgery. The only complaint I have was the swelling two days after. They took out 34 l. nodes. So I have mild lymphodema. If you are looking at me you cannot even notice the swelling. Of course, I can:)
I had my TT and a central neck dissection done last August. This one is harder but the wound went right over the TT scar- so I imagine it will be the same as yours will look. It is 11 inchs from ear to ear... but after three weeks- it already looks good!
I am hear if you need any questions answered!!

• By BrennaMichelle
• Reply 3708524
• January 15, 2013 at 4:31 pm
• Report post

I barely took any pain meds afterwards. Honestly, the swelling was the only issue! I had a sore throat from intubation which was what I took the meds for. I am only 33 and never had surgery prior to this. It sounds awful. It is awful to look at. But I can tell you that you will feel a huge relief when it is over and some of that cancer is out of your body!! Between the two surgeries I have had- I have had 44 out of 58 l.nodes be positive. I wish that the dr would have done it in one feel swoop!

Also- I ran a 5k in 15 degrees at an elevation of 6500 ft here in Germany on Jan 1, 2013... exactly 2 weeks after bilat. neck dissection. So- that tells you that a decent recovery is not impossible!! And that is with lymphodema which I havent heard of anyone else having!! Age is on your side!

• By BeeBee01
• Reply 3708598
• January 15, 2013 at 4:54 pm
• Report post

Sorry you are going through this, and at such a young age. I would get a second opinion too and then find the best possible surgeon available. I accepted the surgeon on duty and will pay for it for the rest of my life. They cut through the tumour, leaving part behind and killed my parathyroids. I wish I had found this board before my surgery. I had a modified neck dissection, central compartment clearance and TT at the same time. Surgery was 6.5 hours.

It's been 3 years and my scar has faded. But it wasn't something I was worried about. Having no parathyroids is a major issue!

Ask your parents to help you research the.best surgeon and hospital for your surgery, or ask others on this board. Then get a second opinion on your cancer! You have time. This is a slow growing cancer, so an extra few weeks won't matter.

Contact Dr Lupo on the experts forum on Medhelp as well. He is a super surgeon and may know of someone good in your locale.

Good luck!

• By yolandat
• Reply 3708755
• January 15, 2013 at 5:49 pm
• Report post

Usually, neck dissection surgery for thyroid cancer is selective neck dissection involving removing the lymph nodes and some tissue around them from various lymph node levels. Radical neck dissection surgery removes much more from the neck, including internal jugular vein, sternocleidomastoid muscle, and spinal accessory nerve. A modified radical neck dissection is somewhere between the two. Radical an modified radical would only be done if you had spread into these structures of your neck beyond the lymph nodes, which is unusual. My guess would be that you are having selective neck dissection surgery, but definitely ask your doctor, as I think the recovery varies quite a bit between the different types.

I had lateral (not bilateral) and central neck dissection surgery (levels 2-6) about 2 weeks ago, and the recovery has been very fast and gone well. I was off all pain meds after about day 4, there hasn't been a lot of swelling, nor pain. I have some shoulder problems from the surgery, but not bad. I had a TT in a separate surgery last year, and my neck dissection recovery is pretty similar to that one, which was also pretty fast. Your surgery will be longer, more involved, and likely the recovery will be a bit more involved, but you are also quite a bit younger than I am, so you may recover more quickly than me.

I want to strongly agree with others' recommendations that you seek out a surgeon who specializes in this type of surgery, and who has done a lot and who continues to do a lot of them. There is a lot of very important stuff in your neck, and you want to make sure that you get someone an expert who has done a lot of these surgeries and who does them all the time. There are some hospitals/centers/universities in the US that specialize in thyroid cancer treatment and research, and one of those would be ideal. Also, any place that specializes in head and neck surgery for cancer will have expert head and neck surgeons. Large university hospitals tend to be a good bet. I know that on the east coast Sloan Kettering and UPenn specialize in thyroid cancer treatment (and I'm sure there are others). I would guess that Johns Hopkins also does and there is likely somewhere in DC, both of which would be closer to you. Maybe someone else here will have a recommendation for a good place to go near you.

• By BrennaMichelle
• Reply 3708872
• January 15, 2013 at 6:27 pm
• Report post

I had a referral to a general surgeon for my neck dissection (thank you Tricare). Luckily he referred me to an ENT surgeon who specializes in Head/Neck surgeries. That is definitely who I would recommend. I remember hearing that some were near my carotid and freaking out. He calmed my worries with a comment along the lines of "It is sort of where I live. I work only in those areas. Now dont ask me to repair your hernia." lol

• By eo0010
• Reply 3708944
• January 15, 2013 at 6:54 pm
• Report post

Thanks for all the advice everyone! I agree, second opinions are important. The surgeon I mentioned is just that, and he is a head/neck cancer specialist who has been practicing for over 30 years. Everything will be at the University of Virginia, which is a very good hospital. It doesn't sound like the radical one. He said they will only be taking out my thyroid and the lymph nodes (about 50 total). Full recovery expected within 6 weeks, then RAI 131. He did mention the risk of damage to the parathyroid glands, and I'm on calcium supplements until Monday just in case. Is intubation common with this procedure?

• By BrennaMichelle
• Reply 3709002
• January 15, 2013 at 7:12 pm
• Report post

Ask about risk of lymphodema. I had 34 taken out this last go round and have a minor
Case... Just so you can prepare and maybe avoid it:)

• By eo0010
• Reply 3709138
• January 15, 2013 at 7:51 pm
• Report post

Ahaha he sounds a lot like the doctor I went to! Very easygoing, yet very professional. They said they will be placing two "drains" by the incision to drain excess fluid for a few days. Would that be for lymphodema?

• By BrennaMichelle
• Reply 3709444
• January 15, 2013 at 9:40 pm
• Report post

Partly I assume. I had 2 drains. Hopefully you will not have an issue but with having as many l nods removed as we have had- it is a risk.

• By cflo
• Reply 3709625
• January 15, 2013 at 10:53 pm
• Report post

I had a left neck dissection. Two weeks after surgery I still had staples in my neck and I did a fast walk to the fridge for a sprite. Every surgery is different, ask your docs ahead of time for specifics and see what info they can give you.

• By LuvMy2wins
• Reply 3710306
• January 16, 2013 at 8:51 am
• Report post

I had a bilateral dissection in March of 2012 (TT was June 2011) and Dr Levine was my surgeon at UVA. Is that who is doing yours? I'm now sporting a wonderful earlobe to earlobe scar but he was wonderful. He took 39 lymph nodes and 7 were positive. I had to take pain meds for a few days after surgery but not for my neck. It was for my arms...apparently the way they were positioned during the 6 1/2 hr procedure. I did have 11th cranial nerve damage and had PT to help which did wonders. I still have some noticeable to me swelling and the nerves are still trying to regenerate. They say the nerves grow a millimeter a day and can fix themselves for up to a year. I still have a fair amount of numbness also. Sometimes I feel like I'm wearing a neck brace when the nerves tighten up.
Do you live in the Richmond area? I will be in the Charlottesville area tomorrow seeing a homeopathic Dr. Because of all this cancer stuff is out of my control, I have been working with this other Dr to change my diet etc to allow me some control. I'm still not cancer free but my Tg is going down each time I do labs! Hoorrrraaayyy!!
Best of luck to you. If Dr Levine is who is doing yours, know you are in great hands!! Let me know if I can help you in any other ways!
Tami

• By eo0010
• Reply 3711299
• January 16, 2013 at 2:01 pm
• Report post

Yes, actually! It is Dr. Levine! He's been really great so far, much better than the local doctors in my area. No, I'm actually about an hour north of Charlottesville but it's worth the drive. That's so reassuring to hear from someone who had the same surgeon :) he did mention the risk of that same nerve damage but if it can be fixed with time and PT it's worth getting the cancer under control. Like he said, I'm young and very active so I should make a fast recovery (fingers crossed!). Thanks for all your insight! Don't worry, you've come this far! Your cancer probably doesn't have much longer before you kick it out for good ;)