I had a partial glossectomy on May 10th and selective lymph node dissection.I was released from the hospital after 7 days. Right now, my big concern is that I am experiencing a lot of pain in my chest where my drainage tubes were, as well as a lot of pain and numbness in my shoulder. I am also painful and numb in my left ear and around my neck and scar on the side of the ND. If anything, I feel worse than when I was in the hospital.

I am also experiencing what feels like a sore throat--just on the affected side. Nothing is relieving it. I called my surgeon's office and they called in an antibiotic for me, but that hasn't helped at all. At the time I left the hospital, I was issued Oxycodone, but I tried telling them I was allergic to the stuff, but I am just a silly patient. After a week of a bad rash and being sick to my stomach, they sent me a prescription for Percocet, which seems to be no better, to tell the truth. My pain isn't relieved by anything and I am still itching. My surgeon, who seemed so great at the outset, seems to be just another "cutter" now, and keeps asking me why I am still in pain. (DANG! I wish I knew!)

As a long-time migraine sufferer, I am used to stronger drugs than this, and maybe that is why my body isn't responding to what they are giving me, but all I know is that I am not sleeping or eating because I just can't get comfortable. Has anyone else had this problem? (It has taken me four days just to feel up to to typing this message on the computer.)

Thanks to all.

Dear rim-I thought twice about posting this-but here goes. If you can't get your surgeon to work on adequate pain relief, do you have a family physician that you can go to? My guess is that[and this was true for John] while in the hospital, you were getting stronger pain meds and probably more often. Also, are you able to stay hydrated and are you getting enough nourishment? You have just had major surgery and it is going to be some time before you feel up to par. Remember, the "squeaky wheel gets the grease". Keep asking for pain relief that works. Amy

Adequate pain management is a basic patient right. All of the painkillers you describe are moderate pain relief agents. I get itchy when I take Vicodin (AKA Hydrocodone) also.

There exists pain management centers for this, if they are not available in your area , like Amy said, call your PCP. If you have an oncologist, he(she) should be managing all of your meds. If your pain is between 7&10 I would go to emergency. Some hospitals have small injury clinics and you can get in and out of them much faster than a standard ER.

Hi Rim,

I can address some of your issues as it appears that you and I had similar surgeries.

I had no idea that surgery like this could knock the wind out of me as much as it did. I, too, had and still have numbness in my cheek and neck from my ear to my mid neck. This has not gone away and I don't expect it to. I can certainly "live" with this.

As far as the rest is concerned, you did have major surgery and it causes pain for quite some time. As you were told above, you should be getting the right meds from someone. Seems like your surgeon is not the right one for that. If the pain you're experiencing is just post-op pain, then it will soon start getting better. But, we are not treating doctors here, and if the right pain meds don't work, then someone needs to check and find out what is going on.

The fatigue will take a long time to go away. This is very normal. It took me longer to get back to the computer than you. Once you are feeling better you will need physical therapy for your shoulder. This will help you get your full range of motion back. If your speech has been impaired, as mine was, you will also need speech therapy.

PS You should never continue taking a drug that causes itching and a rash. Allergic reactions can have very serious side effects.

Good luck in finding a doc that will help you with your pain management and follow-up treatment.

Jerry

Thank you all for your suggestions. I don't mean to sound uneducated, but I guess that is just what I am when it comes to these issues. But Gary mentions a "PCP"--what is that? We live in a very small town and my oncologist is a long way away. Not anywhere near me. So should I be calling him to say I am having difficulties?

As far as getting stronger pain meds in the hospital, I actually had difficulty getting them there, too. My doctor kept mentioning that they wanted to wean me off morphine (I only had it for one day when he started talking this way) and to get me lined up on something to go home on. If it weren't for the efforts of one valiant nurse, I probably would never have gotten it at all. She cornered my doctor and asked him to at least let them leave the morphine on in case I had pain in the night. When I did, I was allowed to have it. But I didn't get regular pain relief until the last two days I was in the hospital, and then it wasn't as bad as the first few days had been.

I don't know about calling my family doctor, as I really haven't had one except this new guy that I moved into our town and I saw last year to get my blood checked. Other than migraines, I have been very healthy. Go figure.

I just find that I don't have the energy or the will to do anything. I just hurt so much all of the time. I have so many issues going on at home and I can't deal with anything adequately. I have two beloved dogs--I mean BELOVED dogs--who have both been diagnosed with cancer while all this was going on with me, and normally I would be taking charge and making plans to treat them. I can't even do the research I need to do to take care of it. Sometimes it just feels like my life before was just a house of cards waiting for a big gust of wind to blow it all over.

rlm, I'm guessing Gary is using PCP as an abreviation for Primary Care Physician. You need to either rattle the cage of your surgeon or FIND a primary care doctor (many insurance programs require you to have one, even if you've never seen them before, this would be a good time tog et to know them) who will help you manage your pain.

Nelie

Nelie--
Thanks for helping me figure out such a simple acronym. I can tell that this pain is getting the better of me since I found that one so hard to work out!

I appreciate so much everyone taking the time to give me their advice. I know that many of you have gone through so much more than I and yet, your patience and caring come through in the way that you give such thoughtful advice to others who are trying to find their way--like me.

I am normally a great advocate for everyone in my life who needs aid, my dogs, my Mom, my husband, but this thing just has me all knotted up. I just can't seem to think straight or figure out what to do next. Maybe that is normal, too. Everyone is just so darned used to having me get up and go, they don't quite seem to know what to make of me now that I am down and out.

What Jerry said about having no idea that this surgery would knock the wind out of him like it did is exactly how I am feeling. I just want to get back to feeling like the old me, but she is nowhere in sight. I think if I could just get the pain managed, I could work on dealing with the rest of it.

I will try to take everyone's advice and get in touch with someone tomorrow. I know it is a holiday, but perhaps somebody will be in somewhere and give me a break. If not, there is always Tuesday.

Thanks, Nelie you were right on the money. The PCP can change depending on what phase of treatment you are at and who's following you the closest. Since chemo was such a big deal, in the beginning my MO (medical oncologist) was the PCP. Then that shifted to the head & neck surgeon and he was following up every 6 weeks for a time. Now I have to go to an internist as my PCP, although I am still followed up every 6 months by the RO and the MO and every 4 months by the H&N Surgeon.

It's a slow process and you must have great patience.