Author Topic: Released occipital nerve, but still some pain  (Read 6711 times)

dmulley

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Released occipital nerve, but still some pain
« on: January 24, 2008, 12:54:33 am »
I've been reading this forum off and on since shortly after my AN was removed in late May 2007.  It's been quite an experience and I feel like I should be a part of this community.

I'm 29 years old and had my AN surgically removed using the retrosigmoid approach by Dr. John Leonetti (skull base surgeon) and Dr. Douglas Anderson (neurosurgeon) at Loyola Univ Med Center.  I was fortunate in that the tumor was found before any permanent damage was done to the nerves involved; I was completely asymptomatic.  Also, my hearing and balance were mostly preserved during the surgery.  I did have facial weakness for about five months after surgery, but that has almost completely come back.

My headaches started when I came off the first round of prednisone I was taking for the facial weakness.  They started near the top of the incision, above my left ear spread, over time, along the length of the incision.  A CT and MRI showed no problems, so Dr. Anderson put me on Neurontin and referred me to the pain clinic at Loyola.  I received my first nerve block in early October, targeting the greater and lesser occipital nerves.  I had immediate, partial relief from the pain.  By late October, the headaches were starting to spread to the front and back of my neck and my face, all on the left side.  Dr. Rana at the pain clinic theorized that the spreading pain was a result of what he called nerve windup, which I understood to conceptually be similar to electrical induction.  He moved me off the Neurontin and onto Lyrica. 

I went to see Dr. Rana again in late October.  He was not able to do another nerve block that day because I had not stopped taking my blood-thinning drugs far enough in advance (it would be nice if they would tell you these things...in advance).  At that point, none of the drugs seemed to be doing much.  That was my lowest point.  If it were not for the sight of my beautiful, smiling baby girl to wake me up each morning, I would not be here.  Having read so many posts on this forum of people who have had headaches for years and feeling like I had few medical options, I didn't see my life improving.

Dr. Leonetti got me in to see Dr. Candido at the Loyola pain clinic in early December.  He added Cymbalta and gave me Darvacet to take at my worst times.  Also, I was taking the maximum allowed dosage of ibuprofen with decreasing effect, so I started taking tramadol in it's place.  He did a nerve block that day on the greater auricular and lesser occipital nerves.  I felt great, like myself again.  The effects only lasted about 24 hours, though, and I felt terrible again.  A few days later, I stopped the Cymbalta and started taking Celebrex, as the Cymbalta seemed to be making the pain worse.

I went in to see Dr. Leonetti on Jan 2.  He said the he was confident that at least part of the pain I was experiencing was a result of entrapment of the occipital nerve and others in close proximity to the incision.  He is normally booked two to three months ahead, but he made an opening for me on Jan 10 to release the entrapped nerves.  He reopened most of the original incision and removed a lot of scar tissue and all of the smaller nerve fibers it contained.  He also removed about 2 cm of the occipital nerve, which showed what he described in the surgical report as "thickening".

I'm taking only the Celebrex now to help with the inflammation.  If I don't take the Celebrex, I have pain just like before in my face and neck.  I don't have any of the pain from about the front of my ear, back, though.  I'm trying to be optimistic about the outcome of this surgery, but I'm starting to get skeptical of it's effectiveness.

I finally come to my questions:
  • Has anyone else had the occipital nerve released/transected and continued to have pain in areas not associated with that nerve?
  • If so, what treatments have been pursued in those cases?
  • Are there drugs with generics that have the same anti-inflammatory effect as Celebrex (it's getting expensive) that I might ask about trying?

Thanks to everyone for the helpful information that you've made available through this forum.
29 years old
2.0cm AN - left side
Removed May 31st, 2007
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

Janet

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Re: Released occipital nerve, but still some pain
« Reply #1 on: January 24, 2008, 12:39:05 pm »
dmulley,

I am so happy you have posted here and shared your treatments. So sorry you are going through this. These electrical type headaches are in a class of there own. This site is like getting second opinions from many different doctors.  In answer to your questions,

I am scheduled to have surgery to release the greater occipital nerves (bilateral) with a peripheral nerve surgeon at the end of February. He does not touch the nerve but creates room around it, so it isn't irritated. It is similar to carpel tunnel surgery, only in the back of your head. I also have a spot in my incision that appears to be a scar neuroma involving the lesser occipital nerve. This he will revises.  These are out patient procedures.

Indomethacin works very well. It is an anti-inflammatory and is cheap. Long term use can be hard on your body. When I asked my doctor if rebound headaches would be a problem with this, she laughed and said I would have headaches without taking the medication. This drug has been around a long time so the side effects are time tested, unlike some of the newer drugs. Blood tests to assess kidney function and an elevated BP would alert you to early problems. I take Prilosec to counter stomache irritation. Botox also works well for the muscle tightness. (Expensive, but my insurance covers it.) Any break through pain is treated with Maxalt 10 mg mlts. This works for migraines. All of these treatments don't make you drowsy of alter your mood. That is a big plus for me. If the surgery doesn't work, I will go back on the Indomethacin. I rather have a shorter pain free life than be incapacitated with electrical pain or drugged with a medication that doesn't really work. Some people never have any problems with long term use. I feel I should try to fix the problem than treat the symptoms, so I am willing to give surgery a try. (He said he won't make me worse.)

Most of my day, the electrical pain is under control,  until the Indomethacin wears off. I rarely get migraine type headaches with my course of treatment. Without treatment, I would be very discouraged. Hang in there. You will get releif, if you keep at it. I know it is a rough road.

Best Wishes,
Janet

Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

dmulley

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Re: Released occipital nerve, but still some pain
« Reply #2 on: January 24, 2008, 01:26:57 pm »
Janet,

Thank you for your responses.  I'll ask my doctor about the indomethacin.

Doug
29 years old
2.0cm AN - left side
Removed May 31st, 2007
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

jerseygirl

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Re: Released occipital nerve, but still some pain
« Reply #3 on: January 25, 2008, 12:15:54 pm »
Doug,

I am so impresed with your neurosurgeons because in my experience nobody will even admit that you are having chronic pains! I had pains for 10 years after my first surgery and Indocin worked somewhat, acupuncture worked also. I checked my records and Naproxen also helped but increased my lightheadedness. Now it is available in a smaller dosage without a prescription and is called Alleve. Hope it helps!

                   Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

staypoz

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Re: Released occipital nerve, but still some pain
« Reply #4 on: February 01, 2008, 04:36:20 pm »
dmulley: 

One of the doctors at last summer's symposium said we headache sufferers have a syndrome, and are probably experiencing the effects of several things including nerve damage, surgically induced migraine, etc. -- separately and sometimes at the same time, which accounts for the different kinds of pain we experience.  That makes sense to me since no one thing seems to take all of the pain away, and I have tried everything, short of surgery, although I did see Dr. Ducic about the kind of surgery Janet is scheduled to have. 

I am now 3 and a half years post op.  I can say that the worst of the headaches have lessened in frequency and intensity, and I am able to participate in moderately vigorous exercise without experiencing a headache every time.  A couple of people in our local AN support group  have experienced the same thing as jerseygirl and are now pain free.  I am able to get by on NSAIDs with Prilosec to help protect my stomach, with the occasional anti-nausea. 

Hang in there!  It really will get better.
staypoz

jerseygirl

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Re: Released occipital nerve, but still some pain
« Reply #5 on: February 01, 2008, 06:13:59 pm »
Staypoz,

It is great that some of the members of your support group are now pain-free. For how long did they experience pains after the surgery similar to mine? I was just wondering. 

Several things reagarding pain makes a lot of sense to me. Do you thing anything works for you, even somewhat? I hope you are pain free on most days!



                              Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

dmulley

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Re: Released occipital nerve, but still some pain
« Reply #6 on: February 02, 2008, 12:33:54 am »
staypoz,

Thanks for the encouragement.  The "syndrome" label does make sense given the variety of pains.

I've been feeling better and better every day since my second surgery.  The NSAIDs make all the difference.  I've been fortunate to not have any stomach problems, though it sounds like that is probably going to happen sooner than later.  I wonder it it's better to take a proactive approach to dealing with it and try to prevent the damage from occuring in the first place?  Maybe I'll ask my doctor about that given how common the problem seems to be with the long-term use of NSAIDs that is common in this treatment.

I'm looking forward to that vigorous exercise; the post-op steroids for the facial weakness were not kind to my waistline.  My trigeminal flares up when I look at the weight bench.

Have a good, pain-free weekend,
Doug
29 years old
2.0cm AN - left side
Removed May 31st, 2007
Dr. John Leonetti & Dr. Douglas Anderson
Loyola University Medical Center
Chicago, IL

Captain Deb

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Re: Released occipital nerve, but still some pain
« Reply #7 on: February 02, 2008, 02:30:31 pm »
Absolutely be pro-active on protecting your stomach with the NSAIDS.  My stomach has become the source of a variety of problems from those things. I ended up in the ER from taking 2 ibuprophen, with a follow-up test that cost me $1000. Now I have degenerative disc disease in my neck and can't take any meds for it that don't set my stomach into a tailspin.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Soundy

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Re: Released occipital nerve, but still some pain
« Reply #8 on: February 03, 2008, 06:59:18 am »
Te syndrome thing is what my doctor says is going on ... I have three definitely different
headahes...and the treatment can be a Tylenol , or a Tylenol and after a bit a hyrocodone chaser
if not improving or straight to the hydrocodne ... it helped me early on after initial surgical pain
subsided to pay attention to what was going on before a head ache and seeing what worked ...

I take Pepcid AC to protect stomach and hoping it works ... if you ask your doctor about it ,  ask for
a prescription... it is a lot cheaper as a prescription than over the counter
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery