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Radical Neck Dissection--harumph

rubyseaglass
Posts: 4
Joined: Nov 2009

OK--I feel as I am all alone. I look over the forum and everything posted is dated years ago.
IS THERE ANYONE OUT THERE???
I was diagnosed w/ thyroid cancer in 07. In May 09, I had a radical neck dissection. 80 lymph nodes removed along with 8 tumors. The incision starts behind my left ear (top) down the left side of my neck and part way up the right. Now I understand this was a difficult surgery. I have done all the therapy, physical therapy etc... Right now I am terribly frustrated. I feel like I have an ACE bandage wrapped around my throat. My head feels like a huge basketball. I am working on range of motion but it is painful but I keep doing everything that I am told. I am terribly dizzy--walls, the floors and I have become good friends. Being a dancer, I don't know where my body is at any given time. I am terribly fatigued. 3 hours is a good day. I have asked the doc what to expect and I have yet to get a definite answer. I realize that cancer doesn't play by the rules. This whole thing is alien to me. It has complicated my life. It is a parasite and I resent it. I know that it sounds like I am whinning but I have no one to ask. I am blessed with good friends (family of choice) but it is so difficult on them when I feel blue. I feel so out of control. I know that the normal that I once knew has become a different kind of normal. I need to know --is there anyone out there who is experiencing what I am experiencing? The date on this forum says December 1969--don't get it

S_G_W
Posts: 1
Joined: Nov 2009

The surgery you had is HUGE and it takes a long time to heal. I had bilateral radical neck surgeries when I was 13 years old (1970). While it was a massive challenge and the recovery process extremely difficult, I am alive today because of it. It is very likely that you also had some muscle tissue removed in order to get all the cancer and that is why you are aware of your head feeling different (heavier). Anger is an expected phase we all seem to go through (and some believe depression is anger turned inward) so it is a good idea to find ways to vent and let off steam. A good counselor can be valuable for working through all the negative emotions that go with this diagnosis and exploring new tools that might boost your ability to cope. You will find that over time, the physical scars fade and your life will gradually begin to feel more normal. In the meantime, you need to treat yourself lovingly and be patient with the extensive amount of time it takes to heal. Stay the course with your physical therapy because that is the best way to optimize your level of functioning and train backup muscles to do the job of those you may have lost. I wish you well.

rubyseaglass
Posts: 4
Joined: Nov 2009

i really didn't expect to get a reply. was hoping but no expectations. so my deepest thanks for getting back to me. just a couple of questions--how long if ever did u take before u actually felt somewhat normal? i am not worried with the scar--the surgeon did a beautiful job. what i am worried about is the dizziness, the lopsided head syndrome, the difficulty of swallowing,talking etc... did u experience any of these symptoms. i am grateful that they got all the cancer. but i need to know about quality of life. i have always been very active and the fatigue and dizziness is really difficult to deal with. i just want to know if there is a light at the end of the tunnel. again, my sincere thanks for getting back to me. feel like a whimp. 1970, i was 13 too with no worries---u are a brave soul. thank you again.

andreapj
Posts: 6
Joined: Jan 2010

I hope it's not too late to reply to this; I joined only yesterday. My surgery was Oct. '09 and similar to yours. I had a total thyroidectomy and neck dissection, along with one parathyroid autotransplant. My dr. removed 75 lymph nodes; 26 were malignant. The primary tumor was 2.1 cm. and I am stage 4a. I know exactly what you are talking about when you say it feels like an ace bandage around your neck. It wasn't clear to me if you are getting physical therapy. If not, I recommend it. I had PT for a couple of months and it has helped tremendously. There are both PTs and audiologists who work with balance issues. It may be necessary to interview some PTs in order to find one who is experienced with neck surgeries and/or with vestibular (balance / dizziness) problems. Good luck. Being miserable is not fun.

ltecato
Posts: 2
Joined: Jan 2010

I had a radical neck after radiation for ca. of nasopharynx in 1976. Since then, I have only seen one, maybe two, people who have had this surgery. I get the feeling there's not many of us.

If you feel lousy after this, it's only normal. I felt like hell for the next two years at least. There was the pain, of course, but also the muscle spasms or torticollis. A spasm would pull my head down in one direction, and the only way I could get it to stop was to use my hand to push or pull my head in the opposite direction.

The numbness was so bad that a doctor was able to cut a post-op cyst out of my neck without giving me any anesthetic. I didn't feel a thing. Worse, though, that tingling and itching! It just about drove me insane.

All I can say is that over time, the pain and spasms diminish, but mine have never completely gone away. Just a day or two ago, I had a muscle spasm in my neck that seemed to trigger another spasm in my rib cage. It was really scary, almost had me thinking it was a heart attack. It was over soon, but I'm glad I wasn't driving when it happened.

At least the itching and tingling are gone, along with most of the numbness.

changoslf
Posts: 4
Joined: Jan 2010

I had the same im 26 and 2 years ago i had a radical neck following my first regular thyroid removal because it spread in a month to left lymph nodes..i had 56 removed both right and left lymph nodes 8 cancerous on right 0 on left..now its in my clavicle..i feel ok other than constantly feeling fatigued..and im always checking my thyroid levels to ensure there good..so i guess a tip would be to stay on top of your endocrinologist and radiation oncologist..hope i helped in some way

skcalkins
Posts: 39
Joined: May 2010

Hi Changoslf,

I was wondering what they did for the one in your clavicle? I just found out mine has spread to lymph nodes and has a mass behind my clavicle that he said is inoperable. Is there any thing that can be done for this? We are waiting for the biopsy results before we go forward with the second surgery. Thanks for any help.

Shawna

rubyseaglass
Posts: 4
Joined: Nov 2009

Thanks for all the replies. I really thought that I was the only one out there. I agree that we are few and far between. It seems that ''time'' is the only thing for all of this. I have talked to a PT and was undergoing some PT to work on muscle problems, spasms,
numbness etc... PT helped but as with many of us, Insurance only covers only a certain amount of time and money is tight. Having cancer is not a disease that has the insurance companies on it's side. I am trying to be optimistic and positive, but I wouldn't wish this on anyone. Again, I appreciate everyone expressing their kindness. I wish everyone success with all of this. Please keep in touch

Newcomer
Posts: 3
Joined: May 2010

It's been a while. I hope you are doing better. I'm a dancer too and I say dance as much and often as you can. It's the best PT. Do spotting drills. As soon as they took that catheter out (no one warned me about that before I went under!) I was doing footwork in my hospital room- I was so excited my legs still worked when not much else did. Focus on what you can do and keep gently pushing yourself. try partner dancing if you only do solo dancing. your partners can catch you and help you keep your balance as well as push you to be your best.
____________
3/10/10 total thyroidectomy, thyectomy, parathyroidectomy, and right central and lateral compartment neck dissection

15 out of the 35 lymph nodes in III, IV, V, and VI that they biopsied had metastatic papillary thyroid carcinoma and there was some "extra nodal extension noted" in the central compartment lymph nodes.

The left lobe of my thyroid gland had a papillary thyroid microcarcinoma 0.2cm

The right lobe of my thyroid gland had a papillary thyroid carcinoma, classic type, 1.1cm

My thymus had to be removed along with an intrathymic parathyroid adenoma. (My right lower parathyroid.)

One of my upper parathyroid glands was accidentally damaged and had to be cut into fragments and transplanted into my right sternocleidomastoid muscle,

BRAF mutation V600E Detected

Hashimoto’s Thyroiditis

nmh
Posts: 1
Joined: Jul 2010

I had a left neck dissection Dec 09(previously I had a total thryoidectomy)and just started getting feeling back in my left shoulder. My neck is still numb. Over the past month I have been experiencing what I think are muacle spasms in the base of my skull. It seems like a long time between the surgery and these symptoms for them to be related but after reading the posts maybe they are related. Does it really take this long to recover?

animhgf
Posts: 1
Joined: Sep 2010

My neck dissection was in Jan 2010 after a glossectomy in Sept 2008 which was supposed to have taken care of the tongue cancer. It came back in my neck a year later. 42 lymph nodes removed --6 cancerous. After 6 1/2 wks of radiation which ended at the end of March 2010, I now (Sep '10) have a new lump. My neck is still very tight and tingling with the nerves attempting to regenerate. What really pisses me off is that neither the surgeon nor the radiation oncologist told me what to expect. The radiation also totally destroyed my salivary glands so dry mouth, sore throat, incipient tooth decay is something I live with --it remains to be seen how long. I'm not buying any green bananas.
I do the exercises and try to eat well but those clowns haven't a clue. Cancer cannot be cured, only held in abeyance...

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

On 2/8/11 I had my thyoid and 54 lymph nodes removed from my right neck. The incission starts just under my right ear, down to just above my collar bone and across to the left side, aproximately 8.5 inches in all. There were four tumors in my thyroid from .8 to 2.6 mm and one lymph node was cancerous. Initially my shoulder was the biggest problem but the PT exercises have been very helpful. Now my neck is the biggest problem, unfortunately no PT exercises were given to me for my neck. So I just do the big circle neck exercise Arnold Schwartzenager had the little kids doing in Kindergarten Cop which is helping. I've had only minor balance or swallowing issues. Just a slight feeling of unsteadiness when on stairs, which might be psychosematic. My throat feels a little constricted when I swallow, but it's not limiting. Currently my symptons are hypersensitivety in my right shoulder, neck and upper right chest. My right neck is swollen, my right shoulder tires easily and I can't lift my head nearly as far as I was able to preoperative.

I've been told the swelling well take at least 2 months to go away and it will be at least a year before I no longer feel any postoperative symptoms at all.

I've had no cancer symptons, my Thyroid Cancer was diagnosed as Stage III Papillary after a Lymphadenectomy on 1/18/11 of a node that had been swollen at least since I discovered it in mid-September 2010. After the 2/8 surgery my endocrinologist told me in some ways my cancer could be described as Stage I. He also said thyroid cancer tumors under 5 mm never metastasized, or as he said, I rewrote the book. Has anyone else had papillary thyroid cancer tumors under 5 mm that have metastisized?

===

I guess some do better than others. I'm 50 so I can't say it's age dependant. But it does sound like my surgery was less invasive than yours. Were all the nerves, major vessels and the sternocleidomastoid muscle preserved? In my surgery they were exposed and retracted but not cut and reconnected. This could be the difference.

sunnyaz
Posts: 582
Joined: Oct 2010

Yes, I had a very small Thyroid tumor stage 1 (2.1 cm's) and I had a right neck dissection six months later and then a redo in December of last year. Two RAI treatments. Last one was last month. I have a B-RAF mutation gene however which makes Papillary Thyroid cancer more aggressive and more difficult to treat. Just hanging in there from appointment to appointment and hoping it doesn't come back. Still have a lot of numbness and tingling in the neck, chest and jaw line. May never get feeling back entirely but learning to deal with it.
Julie-SunnyAZ

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Millimeters, not centimeters, yours was about 5/6ths of an inch, mine were from about 1/10th of an inch to about 3/100ths of an inch. As I said, according to the endo, this was previously unknown for a tumor under 5 millimeters {about 1/5th of an inch} to metastisize. I'm not particularly happy about being unique in this way. Since this is previously unknown, there is no clinical experience as to what to expect. Hopefully I will respond well to the RAI.

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