Bouts of severe neck pain after AN surgery.

[JohnnieD]

Hi. I had a ~2.5cm AN removed on 4/7/2009. Afterward the surgery, I was deaf in my left ear, and had facial paralysis on my left side. I had extreme neck pain immediately following the surgery, and it came and went for about three weeks postop. There was a lull of about one month where I was more or less pain free, and then I started getting bouts of severe pain while sleeping. It happened at other times too, but more often than not, it was in the middle of the night. I tried changing my sleeping position, different pillows and just about everything I could think of to no avail. At five months out from the surgery, when I asked the surgeons, they didn't really offer much information at all about what was causing the pain. They just said it should go away....eventually.

Since then, I have been to see several doctors, and they all offer theories, and have suggested lots of medications to try, but have offered no real understanding of what happened. The neurologist suspects a neuroma of the occipital nerve, but it is just theory and he did not suggest any way to confirm anything. I had thought it was pain associated with the facial nerve healing process, but he said that is not possible. He also said I should not have had vision problems because of an acoustic neuroma, but that is what led me to get an MRI. I don't know whether he knows what he is talking about or not.

In any case, they put me on Lyrica, Opana ER, Savella, Oxcarbazepine, Tramadol, Hydrocodone, and Oxycodone in an effort to try to help with the pain. I am going to get a nerve block injection soon, to help resolve a pain I was having with the other side of my neck before even having the surgery. After that, they will work on doing something similar for the pain I get from the surgery.

The pain is hard to describe. It used to start right where they cut a hole in my skull, and then it would explode to where I could not move my neck in any direction, and my entire scalp hurt. This peaked in December of 2009, and then seemed to get better. I also noticed the hump at the site of the surgery reduced in size about the same time. I presume something was swollen and the swelling went down. I am left with a neck pain that is almost like a cramp, for lack of a better way to explain it. It doesn't feel like the muscle is cramping, but it feels like "something" gets "tight", and one wrong move sets off major pain. I had a cough last week, which really caused the pain to give me problems. Once it gets past the tightening phase, and something makes it start hurting, the best thing I can do it lie on a very hot heating pad, stay as still as I can manage, and try to relax all my body as much as possible. Pain killers do very little once the pain has kicked in, but seem to ward it off if I take them during the tightening phase.

In some ways, it seems like it is all getting better, but it always seemed to go through spells of pain and then would get relatively normal for a while. I can't figure out what is going on, which makes it hard to know of what I could be doing, if anything, to get past this pain. I go to an Orthopedist next week, but I don't know if they will have any ideas to get to the bottom of this, or will just start guessing again. Anyone have any insight into this sort of problem?

[tenai98]

Welcome Johnnie

I dont have any answers for you but just wanted to pop in and say 'welcome to our little club'.  I (almost ten months post op) do have some neck pain in the morning upon waking but nothing severe...probably the type of pillow I'm using...Soon going to invest in one of those memory foam pillows and see if that helps....I hope you soon get some relief
JO

[Jim Scott]

Hi, Johnnie - and welcome, although I wish it were under better circumstances.  

Unfortunately, I don't have any real insight on what is causing your neck pain but it might be connected with your positioning on the operating table during the long AN surgery.  However, that's simply a guess on my part and of course, I'm not a doctor.  Your description of the pain makes it sound like it's nerve-related.  My wife - who has not had an acoustic neuroma - went through something similar a few years ago.  'Out of nowhere' she began suffering excruciating pain in her shoulder/neck.  X-rays showed nothing, but over a week, the pain, already causing her extreme discomfort, intensified. She finally called her neurosurgeon (who had performed spinal surgery on my wife the year before) and practically demanded another examination.  He obliged, took 'fresh' X-rays and, lo and behold, spotted a bone spur in her shoulder that was pressing on a nerve, causing all the pain.  Long story short: he operated, filed down the bone spur and her pain disappeared.  She healed quickly and all was right with the world again.  

I have no idea if this possibly relates to your situation but the doctors you've consulted don't seem to have much to suggest, so I thought it might help.  I can only offer you my hope and prayers that you'll find the cause of your pain and that it can be successfully addressed, soon.

Jim

[cin605]

I have this n tried everything under the sun...tons of meds...heat ice..massage...have u tried chripractor?This didn't completely take it away but it made a huge differece in range of movement.
also try some stretching exercises they are painful but seem to help.
Turn head all the way to the left...then to the right not fast also up n down head to each shoulder up to left up to right.
I also started taking fish oil...n lorazepam to sleep or when u first get that tightineng feeling.Hot baths too.

[amymeri]

I have had pain in my neck and at the surgical site also, although not to the degree you describe.  I also think that my neck is weaker on that side (it almost feels like my neck muscles were cut).

I describe mine as almost feeling like one of those cold headaches but at the surgical site.

Mine haven't been bad enough to seek treatment but one thing that might help is BOTOX.  It may be muscle spasms that are causing this and I also know they can be helpful for migraines.

BTW:   My NS said many cranial nerves are in the same "zip code" as an AN would be and that it is common to have double vision, eye weakness, etc.

[cin605]

I thin they do cut through your neck muscles...Occipital triangle?

[Pembo]

I've had neck pain as well. My body doesn't tolerate medications well so I looked for the alternatives. I finally found a wonderful physical therapist who helped me with strengthing exercises and I also have an amazing massage guy. "Alan" and I have become very well acquainted over the years. 30 mins, neck and shoulders and I feel so much better. I always start sitting up, then move to the massage table. Oh, my med of choice is always Advil. Best of luck to you......

[TriMan]

Although my neck pain seemed to start earlier than yours, what you describe is exactly what I'm feeling. I just responded to a post started by Jill called 'occipital block'. Look that one over for more info. If we have the same issue at the neck/back of head, the nerve block procedure has helped a little so far. If nothing else, ask your doctor about the occipital nerve as a problem spot. I wish I had known about it earlier. You mentioned pain when coughing. I suppose a sneeze is even worse? For me, this makes a kidney stone feel like a splinter in my hand. I tried massage, accupuncture, chiropractors, kinesiologists and many drugs. Like you, the more relaxed I can get, the better.

[Mei Mei]

Dear Johnnie,
I'm betting it's from the surgery and being stretched on the table for so many hours.  My surgery was 9 hours and I too have had a pinched nerve on my neck and sore upper shoulders.   I use a moist heating pad made by Thermophor that you can get at the drug store and my primary care gave me patches (Free Samples and a prescription to refill) of FLECTOR Patches that you can cut up to match the size and shape of your pain.   I slap them on my rotator cuff shoulder and on my neck.   They have Flexeril in them and magically the pinched nerve in my neck is gone.

Get a Microwaveable neck heat wrap available at nature food stores and on the internet.   Then microwave for 4 to 6 minutes and wrap around your neck and lay down and enjoy.

I would try accupuncture but would wait for approval from your neurosurgeon.   Accupuncture helps you relax alot!!!

Take care,
Mei Mei

[kford]

I am wondering if you have thought of Acupuncture to help with pain management? Comlipentary therapies have proven invaluable in situations like yours.
I will keep you in my prayers.

[Lynn Mc]

Johnnie,

I have been one of the lucky ones and have not suffered from neck pain.  After reading all the neck posts,  I elected to try acupuncture & massage BEFORE surgery (also spoke to the surgeon about positioning my neck - Thanks Capt Deb).  I have also been back twice since surgery and I firmly believe that this has saved me from alot of the neck complications.  Not sure it would work for all but it sure is a drug free alternative.

Hope you are feeling better soon.

Lynn