Hello everyone. First of all, I have never seen a braver group of survivors. Your stories, words of encouragement and positive outlook is amazing.
My question is how everyone that has had VATS lobectomy surgery have dealt with your nerve pain. I am 3 weeks healing from surgery and feel just like me except I seem to have waves of pain from the nerves being cut. Some times I am completely pain free and others, it seems unbearable. Is there something I should be doing or a medication that may actually work to thwart off this nerve pain? It can be debilitating at times.
I start 4 rounds of chemotherapy in two weeks as they found 2 active lymph nodes while removing my upper right lobe. That should be once every 3 weeks. My doctor tells me I will lose my hair, feel sick and tired. I'm glad it's only 12 weeks.
Any advice on nerve pain management would be greatly appreciated. You are my heroes!
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tvf60
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Many people here have had good luck using gabapentin. It is certainly worth a try. I wish I had known about it when I had my surgery 3 years ago. Wishing you the best with your upcoming therapy.
Welcome! We are glad you joined our community. You will find lots of support and practical advice in this great group. I will also private message you about some of our resources.
tvf60 i had nerve pain for about three years i was miserable. My pain dr gave me oxymorphon 20 12 hour twice a day. oxymorphon 5 mg twice a day this was after living with it for three years. It helps that nerve pain god it was awful. hopfully yours won,t last that long. They don,t tell you its going to happen. susiejo1948
Gabapentin did wonders with my nerve pain. Don’t let them start you on it at 300mg x3 times/day. For me 100mg was enough. 300 made me sleepy. If gabapentin doesn’t work for you then ask for Lyrica.
Be advised that I have discomfort still 6 years out from the surgery. It’s much lessened and I no longer feel the need to use medication for it.
Thank you Denzie. That was very helpful. Now I can at least know what to ask for. I go today to get my port put in for my upcoming Chemotherapy. I can ask my surgeon today.
Gabapentin is the real deal! It really helps with the burning sensation. I was a week post op and suffering, It felt like hot boiling water was being poured on me. I am on 300mg in the morning, 300mg in the afternoon and 600mg at bedtime. That was prescribed by my primary Dr. now with the opioid crisis the surgeon was only able to prescribe one week of pain meds. They referred me to a pain clinic. I am now prescribed hydrocodone 7.5 mg. This is in addition to the Gabapentin.
The pain is subsiding, but I do have some numbing and occasional sharp stabbing pain. With all of this said I am so much better than I was and I am getting better all the time. Best wishes to you 😘
I did not have nerve pain from my VATS surgery, but wish you well dealing with it. Concerning the possibility of hair loss from chemo- I had cisplatin which caused my hair to thin. I thought I would loose my hair since it started coming out the 3rd week after chemo, instead it just thinned like I said. Every 3rd week after chemo I continued to loose hair, so don’t give hope that you will loose your hair. Also, you may want to get a port to help with getting the chemo. I had one an it made the process so much easier since my veins are small and roll and blow. Keep thinking positively!
I had a middle right lung lobectomy october 27th. I had this kind of pain for 6-8 weeks. It’s been ~12 weeks now and these pain episodes are less now and the intensity is also much Better. The surprise for me was the amount of sleep I needed from 8 hours at night to 10-12 hrs a night. I’m back at work however I still get periods 2-3 days of needing to sleep more. Things will get better. Wishing you and yours the best.
I had surgery July 2013 to remove the upper left lobe. I was very lucky, my cancer had not spread and my pain only lasted about 4 weeks. I never lost my hair from chemo, so who knows, maybe you won't either.
Glad you are getting the port put in, they killed my veins.
Good luck with everything, let us know how you are doing.
tvf60 I was on strong pain medicine and it still hurt.i was in pain for three years i didn,t think it was going away. i don,t want to go thru that again. hopefully i won,t i,m a five year survior. susiejo1948
I don't want to get you upset and im not sure what vats surgery is but I had a right upper lobe removed and 3 ribs to get to my tumor im very happy to be alive !!!! the suregery was june 2016 BUT ive had so much nerve pain in my right hand I want to cut it off!!!! and it seems like doctors don't really believe me I guess they are just keeping you alive im finally going to a pain management doc to see if they can help did therapy and tried the nerve med nothing works sorry let me know if u find the answer!!!
Hi, I'm happy that you have joined us here. I have found that just reading has helped me a great deal. I'm 2 years out from my lower right lung removal and the doctor gave me Gabapentin. I still take it every so often and I hope and pray that your pain will ease up as well. My doctor was top notch and he told me about all the different pains I would have and dear Mother of God he was right on the money. I was extremely lucky and didn't need chemo or anything other than the surgery and as you know, this is the hardest surgery anyone will ever go thorough. Good luck to you and I will be sending prayers your way for the Chemo treatments
Yeah I had swelling and I still have swelling in my abdomen I never got an answer to this they looked at me like I’m crazy but I am two months out from VATS. So when I go back in March I’m going to ask again and this time get an answer and not be brushed off
As you can see, everyone's journey is very difficult and personal, but, we draw strength from each other. I am 4 years removed from surgery and have a lot of rib pain. It also seems i have a lot of scar tissue, especially where the chest tubes were. I rely on otc pain killers. I too, had 4 rounds of chemo, but mine was 3 consecutive weeks, then a week off between each round. I did lose all my hair, but, came back quickly. Good luck to you , and this may sound corney, but don't try to look ahead too fat and focus a day at a time. Im sure you will discover, as all of us have, you are much stronger than you think. God Bless!
I had a VATs 6 months ago on my right side, and the pain decreased to a certain level and has not improved since. There's some numbness under my right underarm, but that's okay. The problem is the intense stinging pain in the scar on my bra line, and pain that feels like 10 hornets stinging in the front side - all nerve pain since I was not cut there. My ribcage wall hurts all the way across, though nothing was done to the left side. The doc prescribed ibuprofen and assure me that it'll get better, but it doesn't help much. I'm so glad to see the suggestions for Gabapentin! I'll definitely be asking my docs about it!
I have the exact same discomfort. The band under my breast line tightens so bad and abdomen swelling. I tried gabapetin no change 400mg 3x i stopped that. Oxy 5mg takes only the edge off
Yeah I don’t know how long the pain stays but I have pain the same as you and then my nipple area I get sharp pains as well where my Incisions are. I am on Meloxicam and gabapentin they upped the gabapentin but I’m better than I was before but sometimes the pain is really bad and don’t work .
The chemo sounds like what I experienced. First, have some support, family. Be gentle to yourself. My hair did thin out. Hang in there, listen to your team. This is going to be rough, but you will make it! If they suggest you go to a pain clinic or other specialist, do it! I thought I could save money by not going, I think it was unwise. Praying for you....the chemo should only be 12 weeks. Lean in to those who love you !
Hi i had my right side vats resection 1 year a go and still in pain to the point i have just had to stop working have other peaple had the same thing ??
Yes, I had VATS in 2017. It is still painful. It can be depressing. Such is life. I do not want pain meds. With the current opioid problems and all the media coverage could one even ask for relief? I think not. Medical marijuana is not legal where I live so scratch that. There is still a stigma attached to that. I take over the counter meds..and frankly am not pleasant. Pain has an affinity to mask an otherwise pleasant person.
I’m so sorry you are feeling so lousy. I know what you’re talking about. I, too, am afraid of addiction to pain meds. I take low dose gabapenten for nerve pain. I do believe it has helped a little.
I am 7 mos out and still in extreme discomfort. Ct scan 6 mos was clear. But i feel the swollen and uncomfortable feeling after eating something is wrong
Lyrica is the drug of choice these days for neuropathy. It is not a narcotic but it can be something you learn to like it will make you sort of loopyand you probably shouldn't drive on it at least until you get used to it.
I do not have cancer( right now) but I had VATS surgery in November. I have had severe nerve pain since right after surgery. Feels like my skin is scalded but nothing on skin. Gabapenten has helped a bit over time. I have what I think is some kind of muscular pain around my torso and a very tight band that restricts movement and is very painful. Surgeon and doctor have no idea what’s going on.
Hi everyone, I’m also new here. Underwent VATS surgery 4 years ago to remove upper right lobe. Was very lucky and didn’t need any other treatment. I still have sensitivity on my right rib cage which, frankly is getting worst since last year. The bra line is the most sensitive area. Also, sometimes when I twist my torso - and I’ll do my best to describe this - it feels like my organs on my right side are moving, and while it is not a horrible pain, it’s certainly extremely unpleasant. The area feels like there is inflammation and blotting
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