ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mk on June 01, 2011, 07:36:14 am
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I am now a bit more than 4 weeks post-op - I had the retrosigmoid surgery. During the last week I have been noticing that the craniotomy area is very painful. It is not a headache, but located in the bone area and I feel it mostly when lying down. I had this pain right after surgery while I was in hospital, but now it has appeared again. Previously the area was totally numb, but recently I have started to get some feeling back - I wonder if it is just the nerves that are regenerating. Ibuprofen, or even the Tylenol/codeine prescription that I have don't work. So it is really hard to find a good position to sleep. Has anyone experienced something similar? I remember reading some posts about special pillows etc., any suggestions are welcome.
Marianna
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Hi Marianna .....
It is three weeks post-op today for me, but I had translab this time. It is still very numb and aches, but no pain really ..... so I'm not much help. I do remember after the retrosigmoid three years ago, the incision area was very sore and tender for a long time. Not sure what, if any, difference there should be. I would think a craniotomy is a craniotomy from either approach.
Since this is new in the last week for you, can you call or email Dr. Akagami? Just to check and make sure he considers this a normal part of the recovery. Never hurts to ask.
Quite a while ago, Brenda suggested getting a snoogle (long snake-like pillow) for back problems so I got one that I used for a long time. Not sure it would be very helpful in this situation. I'm still basically only sleeping on my non-AN side with a regular pillow ..... just more comfortable.
Hopefully someone will have some other suggestions.
Clarice
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Marianna ~
I had a similar problem post-op. The incision area healed just fine but I could not lie my head on that side for close to a year. It wasn't painful, but it felt sore. That resolved (on it's own ) within a year. The 'numbness' went away at approximately the same time. Although the incision area never regained 100% sensation it isn't really noticeable to me. I can feel my scalp so I'm good with that. Because I normally sleep on the opposite side of my incision area, I never needed any special aids so I'm afraid I can't be of any help, there. However, based on my experience, the discomfort is not permanent so there is 'light at the end of the tunnel', as it were.
Jim
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Marianna -
sorry to hear about your pain :(
I had retrosigmoid and fortunately the only pain I had post op was a stiff neck. Then again, my left ear and the surgical site were so numb I probably wouldn't have felt pain even if I had it :P My numbness lasted a long, long time. When I had my BAHA implant, 9 months later, I still had numbness.
I hope this pain is one of the few side-effects you are experiencing from your surgery. And I also hope that it passes swiftly.
Best,
Jan
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Marianna,
No to be "Negative Nelly" here, but I still have pain around my incision especially when I'm laying on it. It's almost 5 years since the surgery and 3 years since I had a scar revision. I think I'm an unusual case ::)
Anne Marie
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I am just over a year from my second retrosigmoid surgery and I still have pain at the incision. In fact I think it is more painful than the area near my translab incision from 5 months ago.
Tim
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So sorry to hear of your pain...I had translab and NO pain. As Clarice suggested, try and contact Dr Akagami??
JO
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Hi Marianna,
I'm now 6 weeks post-op and have had similar pain. I found that with my right side facial paralysis (AN was on right), if I slept on my left side, my sinuses on the right complete collapsed, and if my left sinuses were congested, I couldn't breathe. So I was sleeping on my right and my incision would be very painful all the next morning, with waves of severe pain. Now I use "breathe right" strips to open my right sinuses, so I can sleep on my left side. Being SSD on the right side makes it very quiet when sleeping on my left. ;D Every cloud has a silver lining.
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I went to acupuncture for 9 months and everytime I went I felt great, it even helped healing my ingrown hairs. Unfortunately, it is been almost 2 years and the area is still sore. Try to apply sabiila gel or oloe vera, I used to cut the plant, make an incision in the middle to expose the gel and put it in the microwave for 15 seconds, then apply it to the area, it used to give me the greatest relief.
Good luck!
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I did contact Dr. Akagami. He explained that the nerves in the incision area have been cut and are now regenerating (I suppose the occipital nerve?). He expects that this will cause all sorts of strange sensations, tingling and perhaps pain. He suggested to stick with the medications I currently use (alternating Aleve, Tylenol 3 and ibuprofen) and wait it out.
Meanwhile, I searched extensively older threads on the forum on the subject, trying to find some alternative ways (other than medication). I found out from one of Captain Deb's posts that cold packs can help with the nerve pain, and indeed they have helped a lot. I am also found a suggestion for a good anatomic pillow that provides neck and shoulder support - off this afternoon to buy it.
And yes, Rich I have also found that being SSD is very convenient when trying to take a nap in a house with noisy kids like mine. ;D
Marianna
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Yes, I used ice packs too for myheadaches and it worked really well, I never thought it could have worked for the incision area too. We never stop learning.. :)
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I have had my incision site "revised" three times over the past 5 years. My latest surgery, and with hope, the last, in Feb. The site finally stopped being painful about 4 weeks ago, I still have slight "Tingles" though, and some tenderness. In my experience, I would put a heating pad on the area a few times a day. Heat therapy seemed to speed up the nerve healing, at least for me. Good Luck!
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I did contact Dr. Akagami. He explained that the nerves in the incision area have been cut and are now regenerating (I suppose the occipital nerve?). He expects that this will cause all sorts of strange sensations, tingling and perhaps pain. He suggested to stick with the medications I currently use (alternating Aleve, Tylenol 3 and ibuprofen) and wait it out.
Meanwhile, I searched extensively older threads on the forum on the subject, trying to find some alternative ways (other than medication). I found out from one of Captain Deb's posts that cold packs can help with the nerve pain, and indeed they have helped a lot. I am also found a suggestion for a good anatomic pillow that provides neck and shoulder support - off this afternoon to buy it.
And yes, Rich I have also found that being SSD is very convenient when trying to take a nap in a house with noisy kids like mine. ;D
Marianna
I never even thought to tell you about the pillow. I bought mine right after surgery too, but to help with the my neck and shoulder pain that I've had for years. I have a contoured memory foam pillow, and I have had no neck or shoulder pain since buying mine. Actually I was away on a course last week, and my neck and shoulder were on fire by Friday...shoulda taken my pillow with me.
I hope it works out for you.
Nikki
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Memory foam pillows are the way to go. I have several pillows that I bounce around all night long, but my memory foam is my favourite.
Anne Marie
PS If my hubby even places a finger on my pillow after I have plumped it and gotten comfortable, look out the mean old witch rears her ugly head >:D