› Forums › General Melanoma Community › Pain after Modified Radical Neck Dissection
- This topic has 21 replies, 4 voices, and was last updated 8 years, 4 months ago by
mattg.
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- January 25, 2017 at 2:02 pm
Some history:
I joined the melanoma club on October 25th, 2016 following the biopsy of a birthmark mole near my left sideburn. Following a haircut, I knew something wasn't right. The depth was reported to be at least 1.5mm putting me at 1B. Went for surgery #1 on Nov 30th for the wide local excision and SLNB. One lymph node came back positive (micrometastisis I believe is the term) putting me at 3A. After discussions with an onologist and my surgeon a Modified Radical Neck Dissection was performed on Jan 6th. We have coverage through Kaiser Permanente so all doctors, etc work for Kaiser.
During the neck dissection, the sternocleidomastoid muscle was removed and a major nerve (forget the name) cut and repaired. I had a previous neck surgery as an infant which produced scare tissue complicating the dissection. I have the planned incision from behind the ear almost to my adams apple, but then also have an incision forming a T shape towards my shoulder. Thankfully, all 48 lymph nodes removed were clean. Pain immedately following surgery was very minimal as I couldn't feel much at all due to the nerve damage.
Several days following surgery, the pain intensified especially near the base of where the sternocleidomastoid muscle was removed (near the collarbone). I am now approximately 19 days post surgery and the pain is still intense, with little improvement. Surgeon has refilled my oxycodone and told me that pain from thie surgery may last 1 to 2 months. Some days I've needed to pair the oxycodone with tylenol to boost the effectiveness. Initially I was told I would be pretty beat up for about a month, but honestly, I wasn't expecting that since I bounced back so fast from the first surgery.
Long post, but I was hoping to get some experiences from others who had this procedure and had the muscle removed – which is where I am assuming the pain is coming from. How long did you expereince the upper chest pain?
Thank you
- Replies
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- January 25, 2017 at 6:41 pm
no experience on this particular procedure. Just wanted to ask if you are seeing a Melanoma specialist? If not, that should be your number 1 priority. I would hate for you to have any further treatment without the expertise of an specialist. Many people undergo unnecessary surgeries when not seeing the right doc. I am by no means say that this was unnecessary, just food for thought. I hope you are feeling better really really soon!!
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- January 25, 2017 at 6:41 pm
no experience on this particular procedure. Just wanted to ask if you are seeing a Melanoma specialist? If not, that should be your number 1 priority. I would hate for you to have any further treatment without the expertise of an specialist. Many people undergo unnecessary surgeries when not seeing the right doc. I am by no means say that this was unnecessary, just food for thought. I hope you are feeling better really really soon!!
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- January 25, 2017 at 6:41 pm
no experience on this particular procedure. Just wanted to ask if you are seeing a Melanoma specialist? If not, that should be your number 1 priority. I would hate for you to have any further treatment without the expertise of an specialist. Many people undergo unnecessary surgeries when not seeing the right doc. I am by no means say that this was unnecessary, just food for thought. I hope you are feeling better really really soon!!
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- January 25, 2017 at 7:03 pm
The surgeon is an ear nose and throat surgeon specializing in melanoma. I was given the information, his recommendation, and made the decision to go ahead with the surgery. My thinking was better safe than sorry. I wanted to be sure it had not spread further and was willing to accept the side effect risk.
I've only had 1 general information consult with the oncologist. I see her again on the 27th and I'm more prepared this time to intelligently discuss everything. The oncologist is who Kaiser assigned to me (yes, I can easily request someone else if I want/need to change). Considering the amount of resources Kaiser has in this area, I would honestly be shocked if she wasn't a melanoma specialist. It is on my list of questions though.
Thankfully the pain I am experiencing is not a sharp pain, but feels like someone is firmly stepping on my chest most of the day.
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- January 25, 2017 at 7:25 pm
Kaiser will not be able to provide you with a proper melanoma specialist in their system. I had Kaiser when I was diagnosed and thankfully it was around the same time of having to either renew or find new insurance and I switched to a PPO in order to be seen by a real mel specialist at a university hospital who is hands on in melanoma research and very informed about the immunotherapies and clinical trials. A general oncologist, even one that has a "special interest in melanoma" just doesn't have the knowledge that a melanoma oncologist has, especially when it comes to treatment. Just want you to keep your mind open to asking for a referral outside of Kaiser because we all deserve the best doctors and the best treatment.. and I honestly don't know where I would be if I hadn't looked outside of Kaiser.
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- January 25, 2017 at 7:25 pm
Kaiser will not be able to provide you with a proper melanoma specialist in their system. I had Kaiser when I was diagnosed and thankfully it was around the same time of having to either renew or find new insurance and I switched to a PPO in order to be seen by a real mel specialist at a university hospital who is hands on in melanoma research and very informed about the immunotherapies and clinical trials. A general oncologist, even one that has a "special interest in melanoma" just doesn't have the knowledge that a melanoma oncologist has, especially when it comes to treatment. Just want you to keep your mind open to asking for a referral outside of Kaiser because we all deserve the best doctors and the best treatment.. and I honestly don't know where I would be if I hadn't looked outside of Kaiser.
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- January 25, 2017 at 7:25 pm
Kaiser will not be able to provide you with a proper melanoma specialist in their system. I had Kaiser when I was diagnosed and thankfully it was around the same time of having to either renew or find new insurance and I switched to a PPO in order to be seen by a real mel specialist at a university hospital who is hands on in melanoma research and very informed about the immunotherapies and clinical trials. A general oncologist, even one that has a "special interest in melanoma" just doesn't have the knowledge that a melanoma oncologist has, especially when it comes to treatment. Just want you to keep your mind open to asking for a referral outside of Kaiser because we all deserve the best doctors and the best treatment.. and I honestly don't know where I would be if I hadn't looked outside of Kaiser.
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- January 25, 2017 at 7:03 pm
The surgeon is an ear nose and throat surgeon specializing in melanoma. I was given the information, his recommendation, and made the decision to go ahead with the surgery. My thinking was better safe than sorry. I wanted to be sure it had not spread further and was willing to accept the side effect risk.
I've only had 1 general information consult with the oncologist. I see her again on the 27th and I'm more prepared this time to intelligently discuss everything. The oncologist is who Kaiser assigned to me (yes, I can easily request someone else if I want/need to change). Considering the amount of resources Kaiser has in this area, I would honestly be shocked if she wasn't a melanoma specialist. It is on my list of questions though.
Thankfully the pain I am experiencing is not a sharp pain, but feels like someone is firmly stepping on my chest most of the day.
-
- January 25, 2017 at 7:03 pm
The surgeon is an ear nose and throat surgeon specializing in melanoma. I was given the information, his recommendation, and made the decision to go ahead with the surgery. My thinking was better safe than sorry. I wanted to be sure it had not spread further and was willing to accept the side effect risk.
I've only had 1 general information consult with the oncologist. I see her again on the 27th and I'm more prepared this time to intelligently discuss everything. The oncologist is who Kaiser assigned to me (yes, I can easily request someone else if I want/need to change). Considering the amount of resources Kaiser has in this area, I would honestly be shocked if she wasn't a melanoma specialist. It is on my list of questions though.
Thankfully the pain I am experiencing is not a sharp pain, but feels like someone is firmly stepping on my chest most of the day.
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- January 26, 2017 at 3:51 am
Mattg, after reading your post I see that you and I have similarities in our modified radical neck dissections (MRND) even though the original melanoma site was different. I too, had a melanoma with microscopic traces of disease in one sentinel node and I too had the rest removed (32 in total). The only real difference here is the location, on my ear and the depth .86mm. I did have a mitotic count of 1, which is relevant to my staging as I am a 3b not 3a.
While I did not have the sternocleidomastoid muscle removed, my surgeon did remove a thin layer of muscle known as the platisma and other structures that cover the auxiliary nodes. My surgeon did not cut the major nerve you speak of, the name of that is called the spinal accessory nerve and is predominantly the reson I am responding to your question here.
My spinal accessory nerve was moved and 'bruised' during the surgery last August, and I still get a real discomfort in my shoulder. It has only been 5 months since the surgery and I still have a bit of that lasting soreness, tightness, as well as ache-especially when I wake up and when I have my arm or shoulder in a position for a prolonged period of time (ie-driving).
I imagine that if this kind of 'soreness, ache, pain' still impacts me months after, than having had the nerve severed would be quite painful. I felt the pain in the same area roughly as you did, upper chest and shoulder. The removal of your sternocleidomastoid is probably compounding that.
The best advice I could give would be to, once your wound is healed completely to seek physical therapy options in your area or through insurance. I went 3 days a week for about 3 months after my surgery and it has helped tremendously. They also give you a great foundation to build off and work on at home.
Best to you, and good luck.
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- January 26, 2017 at 10:27 am
Thank you for sharing your experience. My main concern was wondering how normal it was to be going through a significant amount of pain 3 weeks post op and in what location. The rest of the area isnt really all that bad. Doesn’t sound uncommon I guess.PT is already scheduled for this Monday (30 Jan). When I returned to the surgeon 3 days post op (drain removal) he went ahead and scheduled me for physical therapy. Prior to surgery I was told it would be a good possibility that I would need it. Post surgery I couldn’t physically tell my elbow to even reach shoulder height prompting him to schedule it for me.
Other currently scheduled appointments are with the Oncologist tomorrow and what should be my final post op on Feb 15.
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- January 26, 2017 at 3:00 pm
I had a bit of pain 3 weeks following as well, mine was also associated with an infection I got from the incision. That was the worst I experienced.
Essentially the same problems that you have now, being unable to lift your elbow and the weakness you'll have in that arm, I had as well. Lifting a milk jug was difficult, but with PT I can now easily do all of that including a weight lifting routine at my gym. It really gets better with time.
Good luck with your Onc. meeting, I have been on anti-pd1 and am handling it well.
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- January 26, 2017 at 3:00 pm
I had a bit of pain 3 weeks following as well, mine was also associated with an infection I got from the incision. That was the worst I experienced.
Essentially the same problems that you have now, being unable to lift your elbow and the weakness you'll have in that arm, I had as well. Lifting a milk jug was difficult, but with PT I can now easily do all of that including a weight lifting routine at my gym. It really gets better with time.
Good luck with your Onc. meeting, I have been on anti-pd1 and am handling it well.
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- January 26, 2017 at 3:00 pm
I had a bit of pain 3 weeks following as well, mine was also associated with an infection I got from the incision. That was the worst I experienced.
Essentially the same problems that you have now, being unable to lift your elbow and the weakness you'll have in that arm, I had as well. Lifting a milk jug was difficult, but with PT I can now easily do all of that including a weight lifting routine at my gym. It really gets better with time.
Good luck with your Onc. meeting, I have been on anti-pd1 and am handling it well.
-
- January 26, 2017 at 10:27 am
Thank you for sharing your experience. My main concern was wondering how normal it was to be going through a significant amount of pain 3 weeks post op and in what location. The rest of the area isnt really all that bad. Doesn’t sound uncommon I guess.PT is already scheduled for this Monday (30 Jan). When I returned to the surgeon 3 days post op (drain removal) he went ahead and scheduled me for physical therapy. Prior to surgery I was told it would be a good possibility that I would need it. Post surgery I couldn’t physically tell my elbow to even reach shoulder height prompting him to schedule it for me.
Other currently scheduled appointments are with the Oncologist tomorrow and what should be my final post op on Feb 15.
-
- January 26, 2017 at 10:27 am
Thank you for sharing your experience. My main concern was wondering how normal it was to be going through a significant amount of pain 3 weeks post op and in what location. The rest of the area isnt really all that bad. Doesn’t sound uncommon I guess.PT is already scheduled for this Monday (30 Jan). When I returned to the surgeon 3 days post op (drain removal) he went ahead and scheduled me for physical therapy. Prior to surgery I was told it would be a good possibility that I would need it. Post surgery I couldn’t physically tell my elbow to even reach shoulder height prompting him to schedule it for me.
Other currently scheduled appointments are with the Oncologist tomorrow and what should be my final post op on Feb 15.
-
- January 26, 2017 at 3:51 am
Mattg, after reading your post I see that you and I have similarities in our modified radical neck dissections (MRND) even though the original melanoma site was different. I too, had a melanoma with microscopic traces of disease in one sentinel node and I too had the rest removed (32 in total). The only real difference here is the location, on my ear and the depth .86mm. I did have a mitotic count of 1, which is relevant to my staging as I am a 3b not 3a.
While I did not have the sternocleidomastoid muscle removed, my surgeon did remove a thin layer of muscle known as the platisma and other structures that cover the auxiliary nodes. My surgeon did not cut the major nerve you speak of, the name of that is called the spinal accessory nerve and is predominantly the reson I am responding to your question here.
My spinal accessory nerve was moved and 'bruised' during the surgery last August, and I still get a real discomfort in my shoulder. It has only been 5 months since the surgery and I still have a bit of that lasting soreness, tightness, as well as ache-especially when I wake up and when I have my arm or shoulder in a position for a prolonged period of time (ie-driving).
I imagine that if this kind of 'soreness, ache, pain' still impacts me months after, than having had the nerve severed would be quite painful. I felt the pain in the same area roughly as you did, upper chest and shoulder. The removal of your sternocleidomastoid is probably compounding that.
The best advice I could give would be to, once your wound is healed completely to seek physical therapy options in your area or through insurance. I went 3 days a week for about 3 months after my surgery and it has helped tremendously. They also give you a great foundation to build off and work on at home.
Best to you, and good luck.
-
- January 26, 2017 at 3:51 am
Mattg, after reading your post I see that you and I have similarities in our modified radical neck dissections (MRND) even though the original melanoma site was different. I too, had a melanoma with microscopic traces of disease in one sentinel node and I too had the rest removed (32 in total). The only real difference here is the location, on my ear and the depth .86mm. I did have a mitotic count of 1, which is relevant to my staging as I am a 3b not 3a.
While I did not have the sternocleidomastoid muscle removed, my surgeon did remove a thin layer of muscle known as the platisma and other structures that cover the auxiliary nodes. My surgeon did not cut the major nerve you speak of, the name of that is called the spinal accessory nerve and is predominantly the reson I am responding to your question here.
My spinal accessory nerve was moved and 'bruised' during the surgery last August, and I still get a real discomfort in my shoulder. It has only been 5 months since the surgery and I still have a bit of that lasting soreness, tightness, as well as ache-especially when I wake up and when I have my arm or shoulder in a position for a prolonged period of time (ie-driving).
I imagine that if this kind of 'soreness, ache, pain' still impacts me months after, than having had the nerve severed would be quite painful. I felt the pain in the same area roughly as you did, upper chest and shoulder. The removal of your sternocleidomastoid is probably compounding that.
The best advice I could give would be to, once your wound is healed completely to seek physical therapy options in your area or through insurance. I went 3 days a week for about 3 months after my surgery and it has helped tremendously. They also give you a great foundation to build off and work on at home.
Best to you, and good luck.
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Tagged: cutaneous melanoma
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