I am having some trouble and need some guidance. I am having more pain now than when I first came out of the surgery and came home...I feel like I have going off the deep end...I know I am not immagining the pain but I am not understanding why I am having so much more pain...My wounds are healing very well as far as the nurses can see there is no more infection and I am done with the antibiotics. My neck movement is so much better. The swelling is coming down except in the morning when I feel like the godfather talking with a mouthful of marbles. I am wondering if this is normal the last few days it has been getting worse tonite it is slowly leveling off but still quite painful..my homecare nurses seem to think that it is because the wounds are starting to heal and nerve endings are coming back to life this sounds reasonable but if it is not normal I would really like to know cause I will contact my doctor. I know that you folks aren't doctors but anybody with similar experiences would really help. If there are no similar experiences I will definately contact my doctor.

Thank you in advance for easing my mind...

Dianne

Dianne,

My sister experienced what you are after her mastectomy - real pain as the nerves 'reconnected.' Her surgeon told her some patients really feel it but most don't. I think if it continues to be bad, you should speak to your doctor, though.

Hang in there!

- Margaret

Thanks margaret...I was starting to think I was going crazy...I didn't feel anything really for so long just swelling...Guess that would have been too easy to get away with numbness...I have always believed in no pain...no gain...

My family is more concerned than I am actually...It is a pain I can live with but it has its moments where there are sharp jabs and my gums are itchy (which I know is good sign) and also feel like I have tooth aches...so for now I think I will just keep monitoring it. My nurse told me to keep an eye on it and it is somewhat normal to have the more intense pain now that the numbness is going away...

Yep, I had those sharp twinges of pain as my nerves were reconnecting and the numbness was fading. They were really annoying, but they do go away. Hang in there!!!!

I have those feelings now but I don't believe the nerves start reconnecting or regenerating until months after surgery. Different for everybody but best policy is to discuss with your doctors and nurses and make sure you're comfortable with responses. Best wishes for a swift and full recovery.

I'm not having any mouth/neck pain at 3.5 months past surgery, but I had head/neck radiation (2.5 yrs ago) so that may be a factor. Nerve regrowth can be very slow (nerve cut during hernia repair took years to come back).

Thanks for your response...it is hard to tell everyone is so different. I guess I just don't know what to expect and am probably a little over axious until it heals that everything is ok. From my previous posts it is evident I am a worrier and I still have got to learn more patience. I still have pain but it is more on the side they removed the tumor from and ear ache but only off and on. My mouth is sore but I think I am expecting a little too much after all it has only been a month post surgery. I go see my doctor on Nov 5 and now have a family doctor seeing next week to consult. For the most part it is mostly stiffness and when I do get pain I don't realize how sore it and I end up waiting too long but I don't wanna take pain killers every four to six hours seems too much...anyway thanks for helping it is soon bedtime...

Hi, just wanted to chime in, I think it is important that you talk it over with your doctor but I don't think it is too unusual to still be experiencing pain. It looks like my wife had her surgery about a week before you and we are still using a lot of pain medication. Her pain has generally moved around from the fore arm flap area, to a PEG infection, and now to mouth and throat sores while going through radiation. Don't know what you are using for the pain but I would encourage you to keep using your pain meds and if they don't seem to be working, ask for a different one. I know the top of our dresser looks like a pharmacy but we have been told that you want your body to concentrate on healing not dealing with the pain.

Diane,

I completely understand how you feel. My husband recovered from surgery without hardly any need for pain meds. Only two weeks after surgery (lt modified radical neck dissection) he drove us all the way from Alabama to Colorado to visit with family.
Well that was certainly only a honeymoon. Almost exactly 5 weeks after surgery he was in excruciating pain. Shooting pains running along his jaw and up his temple. It was so bad it put his BP thru the roof and he was admitted in the hospital so they could try to manage his BP. After 3 days in the hospital with no relief of his pain. (they were only giving him high doses of hydrocodone) I demanded something else. I suspected this was nerve related and hydrocodone does nothing for that! I asked for neurontin. Luckily our Dr. is the sort that actually listens and agreed and put him on Lyrica. Pretty similar to neurontin but newer. within 36 hours he was feeling so much better and his BP went down to almost normal (go figure!)
He thought he was gonna go crazy too and was so worried. He couldn't understand why he was in so much pain and was worried as heck that the cancer was coming back with a vengeance. Thankfully it was only the nerves waking up. thankfully? well not that he was having such serious pain but that it wasn't the cancer returning. He still has pain and twinges and headaches from it. But the Lyrica really helps control it now. And as a consequence he has been taken off all the BP meds he was on. He didn't need them after all. His high BP was all due to the pain.
His Dr. explained he could have nerve pain for yrs. that as time passed it would come and go and eventually (not always tho) it should go away for good.
If they have mentioned that it is probably the nerves waking up you may want to ask for something that will directly treat the nerve pain. Most importantly don't wait till the pain is sooo bad that you finally take something. Start with the minimum frequency and dosage ordered by the dr. Stick to it! and increase it if needed up to but not over the maximum frequency and dosage ordered by the dr.
For example: if he ordered 5-10ml every 4-6 hrs. then start taking the pain meds 5ml every 6 hrs. If that is not managing the pain then take 10ml every 6 hrs. If your still not finding relief then take 10mls every 4 hrs. It is very important to manage the pain so you can heal. Plus only taking pain meds here and there really just makes the pain more intense each time you go too long before taking another dose.
I hope I made sense. and don't be hesitant to ask for something else or something stronger if yur still not managing the pain. Different meds work better for different people and you need to let them know if your one of those your current meds are not working for.
All my best, ~Ija~

Wow that information is both really interesting and helpful. I too after surgery was doing really well everybody couldn't believe how well I was doing. Even still like I said it isn't too bad but I have my moments. I am kinda afraid to take pain meds and use them all up in fear that they won't give me any more. Concerned about addiction. I have had that problem in the past (other surgeries) when the doctor decides you shouldn't be having any more pain then they won't give you any more scripts. I don't know what this doctor is like concerning pain meds....I am taking regular asa for the swelling and it seems to help. Like I said I am going to my new family doctor on tuesday and see my oncologist on Nov 5th. I am hoping that the pain meds last till then. They have given me tylenol #3 for pain and it helps. It seems to be true as you heal the pain is getting worse...but dealing with it day to day..When it gets hard I am just try deep breathing. It is really hard when I am left alone alot...I am getting cabin fever yet as I am healing I seem to be able to do less. It seems to be I am having a bit of a pitty party for me but I am in a lot of pain that I am not used to and I thought I was just being a complainer. But if this is the chain of events to happen I will just have to learn to breathe deeper....