Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by vsudd on Mon Mar 14, 2011 04:08 AM
My husband had a radical neck dissection 8 months ago. He is in constant pain. All the surgeons tell us is that he needs to go to pain management/ physical therapy. He has done both. I have heard two different things . One that it is something he will have to live with and then I have read on post it takes time but it has been as I said 8 months and we don't see much improvement. He has lost all strength in is right arm ,the side of the dissection. He is on pain med every 4 to 6 and is starting neurontin and it seemed to be getting a little better but last few days has been bad. Has anyone had this problem. He is a very positive person but he is really getting down. I hope to hear from someone that has had this surgery. Thank you
by PopPop on Mon Mar 14, 2011 03:14 PM
I had a radical neck disection also and had the SCM removed. I did lose the strength in my right arm. I had the physical therapy and it helped. But, the thing that helped me even more was learning the gentle massage to get the Lymphnode System flowing again.
The fliud build up around my face, neck and shoulder area caused me allot of discomfort. The Physical Therapist that I went to was trained in her field for Cancer Patients that would be subjected to Lymphedema. After learning the stretching exercises, she taught me the gentle massage so that I could do them myself. It took a few weeks to get it right (2 visits per week) and I now can do it when ever I feel the need to.
Is your husband having an issue with fluid build up along with the strenght issue? Just throwing this out for you to think about.
My Best to Both of You and Everyone Here
by Georgenone on Thu Mar 24, 2011 04:02 AM
You seem to have had a surgeon like many others. Not Worth a Dam! They try to impress you with how good they are because they've done this many times. My personal opinion is that such surgeons are just useless crap. If a surgeon does not know how to care for the person after surgery, performing the surgery should be illegal. There are many on this site who think your general physician should be the one who provides the after care. The only one who knows what was done and what was removed is the surgeon. Once your neck has been butchered the general physician has no idea what to treat or how. The general physician will do nothing but send you to see someone else. I had one like that. 2 years worth of I don't know and let's wait and see. All I got was the same, a pain management clinic. Odds are your pain management will amount to nothing but experimenting with pain meds. No one looks for a solution or way to help. Standard guideline for dealing with pain after cancer surgery appears to be a lifetime of horribly expensive drugs.
You are only 8 months out of surgery. You will probably still have another year worth of changes. Some of the pain and problem is from the formation of scar tissue. Scar tissue will continue to grow in areas that were exposed to radiation. Tissues that were radiated heal much slower and scar tissue will continue to form in these areas for 2 years or more. This is where physical therapy is most helpful. Pop Pop has said Lymph Fluid buildup may be a significant problem. I think that is something you should look into. Massage does nothing for me but many people say it helps. I had more surgery than most. Everything in my neck and lower jaws is very hard and painful. I have 24/7 pain in my neck with no relief. My system reacts differently to meds than most people seem to. Nothing tried has had even the slightest effect. I was taking Neurontin while wearing 2 fentanyl patches. They did nothing! Morphine is worthless. The only suggestion I've had from the medical community is nerve blocks that may stop the pain in some areas. The only thing Pain Management had to offer was Tramadol and Lyrica. Pain management had nothing further to offer. I did find some relief with Lyrica but Lyrica does nothing for pain. For me Lyrica has caused a reduction in fluid being produced. Less fluid means the metalic taste is gone and most of the time there is less pain from swelling in my mouth. I wish I had some positive information for you but there does not seem to be any. Unfortunately I think Pop Pop has given you the best suggestions available.
by HealthHope on Thu Mar 24, 2011 04:40 AM
"lifetime of horribly expensive drugs" and dont forget the lifetime of side effects from those drugs to the liver and other organs. may i humbly suggest to both of you with horrible neck pain , that I might know of something that would greatly lesson your pain levels and no its not drugs. I have a dear friend who injured his neck, had surgery and then wasnt smart and reinjured his neck. they were going to fuse his 4th to the 6th or 7th vertibrae but when they said he was too young and damage to disk's was too far gone that it wouldnt work, they didnt do it. sent him home to live with pain rest of his life at early 40's.
after less than 2 months his pain was 75% better and now 9yrs later he still is pain free as he was in less than 7 months. he loves sharing what worked for him with anyone that wants to hear. it also works really well with all cancers too. if anyone wants to talk to Jim S. please just ask me, glad to put you in contact with him.
p.s. not much to loose but pain in trying it, it does come with a money back guarantee which your expensive drugs do not!
praying for all with pain.
aka, ms. Paying it forward
by vsudd on Thu Mar 24, 2011 06:09 PM
Your experience is the same as ours has been. Thank you for the information. I hope an pray we can find some help some where. Thanks again Valerie
by vsudd on Thu Mar 24, 2011 06:13 PM
Thank you for your message. I think we have talked before . He is not having fluid, just pain. I bought him a bed frame that is adjustable and that is helping him sleep better. I just think he whats to be able to have a normal life again. Hope one day he will. Thank you , valerie
by vsudd on Thu Mar 24, 2011 08:17 PM
I think we are having the same experience as you have had. I hope and pray you and my husband find some relief . Thank you . vsudd
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