Author Topic: Anyone told they have a "scar neuroma" from cranial incision?  (Read 19014 times)

terracotta

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #15 on: January 16, 2007, 05:11:56 pm »
Thanks for the feedback Bruce. I've been on the Cymbalta 8 weeks. I've been on the highest dose I can be on--- 120mg. I've tried changing the time of day etc. I'd say the sleep problems is a bit better but not to the point its allowing me to live my life as usual. A lesser dose does not help the head pain. I do like that I have fewer side effects such as weight gain and dry mouth as other meds.

Deb, now that I'm working with pain mangement specialists I'm still encouraged we'll find a solution.

Thanks for checking in.

terracotta

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #16 on: January 18, 2007, 08:06:13 pm »
Quick question Bruce. Does the Cymbalta give you weird dreams? I'm having these bazaar sci-fi type dreams just before waking up!
t

staypoz

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #17 on: January 28, 2007, 12:00:24 pm »
Hi, Janet.  I have not yoet spoken with any of Dr. Ducic's AN patients.  I was mistakenly given the name of a non-AN patient to contact.  So, I'm still waiting. 

Am intrigued with Jerseygirl's experience/diagnosis, and that the pain subsided after several years.  That is consistent with the experiences of two people in the AN support group here in the DC area.   

Janet

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #18 on: January 28, 2007, 04:31:29 pm »
Staypoz,

My AN surgery doctor told me that theses headaches would eventually go away but didn't really give me a time frame.  I have heard of people getting better around the 3 year mark but not totally headache free. I have heard from others who still are bothered 5 years out and if they stop taking their medications, "the headaches come back with a vengence."

A year ago, I sent for a tape from a previous AN Symposium. The doctor presenting the talk thought that most AN headaches came from a trapped nerve. In theory, if a revision was done it should help. (I hope I am remembering this right.)  Dr Ducic is the first doctor that seems to be doing this.  Keep us posted.

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

jerseygirl

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #19 on: January 28, 2007, 05:45:36 pm »
Hi, everybody,

It seems that the "scar neuroma" diagnosis explains only one out of three types of headaches that I ended up with after my AN surgery. I would like to elaborate on all of them since we now have an entire section devoted to headaches.

Let me start by saying that before my AN surgery in 1988 I was COMPLETELY HEADACHE FREE. My tumor was on the right side, 6x3x3 cm in size and removed by suboccipital approach with muscle flap insertion. The incison is huge, it goes all the way form the top of the head well down into the neck. My headaches lasted 10 years with progressively longer breaks between them. I am now headache free for 8 years, however, I am facing another surgery for recurrence and very afraid that no matter what approach I will choose, the headaches will return. The time of headaches disappearing coincided with the new tumor growth. Go figure!

Headache type #1 for me would be most consistent with the "scar neuroma" diagnosis. They did not start right away as initially the incison was numb for a few months. Then, as the numbness started going away, the pain started. It felt as if at the incision site I had a snake attached to my head which twisted and turned, bit me, grabbed my hair, sent shooting pains all over as well as turned alternately very cold or very hot. This is not the most severe headache I experienced but nevertheless was very unpleasant, distracting and tiring. It wore me out. Aspirin, Indocin or acupuncture all helped. This headache is mostly on the "outside" of the head.

Headache # 2 is a pure vascular headache with throbbing, pulsating sensations, sensitivity to light and sounds, nausea and vomiting. It ran in clusters of a few days to a few months, therefore, I was diagnosed with "cluster headaches". Indocin suppositories ( because I could not hold anything down) were somewhat effective. Acupuncture somehow ended the cluster. Moreover, it made me more focused and less spaced out. I tried some other prescription medications ( I am not sure of their names) but they either made me throw up a lot more or sleep like a baby all day long. You can't show up for work like that! This type of headache felt like it was deep inside of the head on the operated side.

Headache # 3 is related to my muscle flap. Basically, a portion of my trap muscle was harvested ( i love that terminology) and inserted into the opening that was not covered by the metal plate. It adhered to the dura and created exertional headaches and by "exertion" I mean any form of physical exercise. This proved amenable to stretching, massage and progressively increased exercise (!) as a prevention. If I wanted to stop from hurting, I had to stabilize my neck and stop it from turning. I had a desk job, so that is what I did. This type of the headache also interestingly enough felt "inside" the head.

For the first 3 years the entire cranial defect area was very raw and tender and I could not sleep on it, otherwise I would wake up with headaches. There were definetely trigger points there, so I slept at a 45 degree angle. If I was into my cluster, I sometimes slept in a chair to avoid the area touching anything. Headaches # 2 and 3 seemed to trigger each other, the first type was independent of the other two. The most awful days were when I had all three types of the headaches at once. That's when I was in bed all day screaming. Another thing that triggered headaches was sleeping more than 7.5 hours per night. Once I figured that out, I got up with an alarm clock even on weekends.

Sorry this is so long but I wanted to be specific because headaches can be very different.

                                    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: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #20 on: January 29, 2007, 09:27:38 am »
Jerseygirl, thanks for your last post.  Your classification was spot on.  I have different kinds of head pain also, although I have not been able to describe them so eloquently, and sometimes they all seems to strike at once, so it's hard to distinguish one from the other. 

I wish you didn't have to have surgery again.  We'll all be rooting for you!

Janet, I will keep you posted, I promise.   I am now 2.5 years post-op and if I take the long view, can seet some dimunition in the frequency of the worst of the headaches and an increase in my ability to tolerate certain activities and not trigger a headache.  It's hard to see the progress in the moment sometimes.  But I am now able to work out without provoking a major headache, sneezing doesn't send me to bed, and I can garden for longer periods of time than before. 

staypoz     

jerseygirl

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #21 on: January 29, 2007, 11:03:52 am »
Staypoz,

I am now an avid gardener, too. In fact, I credit gardening to returning my very impaired balance and coordination to functional level. I get less headaches with gardening than with other forms of exercise, too, presumably because it is so relaxing. To think that before surgery I was a city slicker and couch potato! Now I exercise practically every day and happily dig dirt whenever I can. Brain surgery changes your personality in more ways than one!

                              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.

Janet

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #22 on: January 29, 2007, 12:37:54 pm »
Wow, the 3 different catagories of headaches are very familiar to me to. What a great description! I did get the migraine type prior to surgery. I describe these one sided headaches as,

Raw nerve with muscle tightning
Migraine
Dull ache

With Botox and Indomethacin, I only get the raw nerve pain. The migraine and dull ache are gone. The raw nerve has lessened but still dictates my behavior.

The raw nerve is what a "scar neuroma" feels like it would cause when movement triggers it.  All of my pain and ear fullness is on the oppisite side from my surgery. You can imagine trying to explain to someone the 3 different headaches and that it is on the opposite side. I was so baffeled until I read a paper from Harvard from Dr Oaklander about pain being felt on the opposite side. You can't imagine my relief to find an explaination. (I started a thread in the headache section of the forum on this subject.) My incision is still tender.

Funny you both mentioned gardening. I love to garden too! In fact, yesterday I was out weeding. I can't bend over without my head becoming an issue so I sit on a pad. Seattle has been cold and sunny. Can't wait until I can open my doors and spend more time in the garden.

Thanks for all the info and support.

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

staypoz

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #23 on: January 29, 2007, 03:25:46 pm »
Jerseygirl and Janet:  Gardening is wonderful therapy for all sorts of reasons.  I hadn't thought about helping with balance, but that makes sense.  The day after I came home from the hospital I went to my garden plot (I have a community garden) and harvested tomatoes -- with a lot of support so I wouldn't fall over.  I am a member of the local Master Gardeners and until I was ready to go back to work I helped out to my ability in our demonstration gardens and worked in the office, to get me used to sitting at a desk for long periods of time.  The support of my fellow gardeners and the act of gardening itself has always been very therapeutic. 

You grow girls!!!

Staypoz

jerseygirl

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #24 on: January 29, 2007, 05:20:58 pm »
Staypoz and Janet,

This forum is absolutely wonderful because finally there are people who understand my aches and pains! I wish I could do more for your headaches; I know how incapacitating and exausting they are. May you be headache free soon!

                                                      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.

terracotta

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Re: Anyone told they have a "scar neuroma" from cranial incision?
« Reply #25 on: February 17, 2007, 02:51:13 pm »
My pain doctor had told me scar neuroma pain can cause various types of pain not just localized to one area. It can be more superficial as well as seem more deep seated and can even escillate into a migraine type headache. CAn also radiate along the nerve that has the neuroma and can also cause pain to the opposite side of injury. Its weird what our brain tells us.

I'm still on the Cymbalta which I have mixed feeling towards. The botox gave me only subtle results. I'm not sure it is worth the $600 I had to pay for it. It seems to have worn off at this point. Last week I had a horrendous migraine. On the bright side it tells me I'm alive! I'm sure the stress I'm under isn't helping. (My son had spine surgery and now that he's home I'm caretaking 24/7.)  Interesting, he was taking Darvocet and had hallucinations. Now I'm wondering if it was the Darvocet I was taking for breakthrough pain that's been giving me what I thought was weird gothic-type dreams rather than the Cymbalta! Funny!
T