Anyone told they have a "scar neuroma" from cranial incision?

[terracotta]

Hello,
Its been over a year since my last craniotomy (had 4). I've experience moderate to severe head and ear pain mostly on the operated side for over 2 years. I've tried various meds and am now visitiing a pain clinic. The MD's at the PC have decided I have scar neuromas along the scar. This was decided after trigger point injections along the scar. The pain improved after the injection but only lasted approximately 7 hours. The next step is to receive botox injections along the incision scar. Apparently the botox can possibly relieve pain for several months after the injection. I'm wondering if anyone here has received botox injections? Has anyone had local surgery to perhaps decompress the nerve? One more thing... Does anyone get head pain starting identically on the opposite side before it ramps up on the affected side? My pain clinic docs are doing a study related to this phenomenen using functional MRI and watching the brainstem in action.
Thanks for listening. I look forward to any replies!
T     

[nancyann]

Terracaotta,  4 craniotomies, geez, you must have gone thru it!!!    One is enough for me!

I use to get botox once a year, but it was for the worry lines above my nose, I didn't feel a thing in that area after that, won't be needing it for awhile,(lol), It sure numbed everything. I'd give it a try for the pain.   My incision line is so numb, just feels weird.

I don't get any pain opposite side.

Best Wishes Terra, Nancy

[Captain Deb]

I've been stugging with headaches scince day 10 post-op and there is a lot of pain along my MF incision line that accompany them.  When I had the TP's at my headache clinic, the lidocaine in it did give alot of relief, but it was also very short term.  I see the doc again next month and I'll ask him about the botox. Too bad my insurance won't cover it!! Would scar neuromas show up on an MRI?
Capt deb

[Battyp]

I had botox injections for migraines before I was diagnosed with the AN.  It did work for me and was covered by my insurance.  The best part if they offered me the extra for my facial lines or lips if I wanted it  LOL  They injected in my shoulder area to loosen the trap muscles where the migraines were orginating from.  They also did the sub occ nerve in the back of my head.  I was migraine free for almost two years.  The migraines started again after the tumor grew bigger and discplaced my brain stem.  Since surgery i'm do ok with the headaches so haven't resorted back to the botox but if I had them as bad as our capt does I'd being running for the vial!

[staypoz]

terracotta,
I did do botox for post-op headaches, but it didn't work for me.  Like many others who have posted about their head pain, I've tried lots of different treatments and have had several different doctors pose a variety of theories about the origin of the headaches.  Scar neuroma has been suggested to me by my neurologist.  I am seeing a Dr. Ducic at Georgetown University next week for an evaluation; he does peripheral nerve surgery to decompress the nerve and has had some success with headache patients.  (I understand this kind of decompression is different from other kinds of nerve decompression.)  I don't know if Dr. Ducic has operated on any AN patients, but I'll find out and post back.

Good luck with the botox.  It may work for you.   

staypoz

[terracotta]

Nancy.
I have'nt had the botox injection yet (waiting for authorization) but I did suggest they squirt a little botox more medially while theyre at it when they do get to it (as in between my brows)! 

Deb,
i'm not sure if a scar neuroma (entrapped nerve) would show up on an MRI. So far its a theory due to my response to the trigger injection and my history.

Staypoz,
I'd sure be interested in what Dr Dudic suggests. Although it was nice to have a reason for my headaches, who knows. I'd been concerned for along time that I had an underlying chronic infection. I'd ended up with a bone infection three months post op which eventually resulted in a brain abscess, hence all the surgeries. Keep me posted.
T   

 

[staypoz]

terracotta:  I just got back from seeing Dr. Ducic and was given the diagnosis of a scar neuroma.  He has treated 7 AN patients with peripheral nerve surgery for the head pain and is preparing a paper for publication.  I am waiting to be given the name(s) of his patient(s) who are willing to talk about their surgical experience.  He seemed very confident in his diagnosis and his ability to eliminate the pain.  He said my symptoms were classic.  Although all of the healthcare professionals I have sought help from since my surgery have been very helpful, he is the first doctor who has not only named my condition but given me hope that it can be corrected.  What a Xmas present!

staypoz 

   

[Janet]

I can hardly wait to see Dr. Ducic's paper! Thanks Staypoz, you have given us all a Christmas present of a little hope. Imagine, a cure for AN headaches.

Janet

[staypoz]

Janet, I told him a lot of people would be interested in his work.  He's at Georgetown University Hospital and there is information about the kind of surgery he performs on their website, although it is not AN-specific.  He's in the plastic surgery department.   

Once I talk to some of the folks he's treated, I'll post back.   

I'm a little wary of more surgery and want to know more about long-term success, but at least we know someone is doing this kind of work and who knows, there may be other docs out there treating ANers with our post-op side effects that we don't know about.

Merry, merry!

Staypoz

[Janet]

Thanks Staypoz,

I looked him up on the website and was encouaged to hear someone talking about the occipital nerve. I've figured out that it must be my occipital nerve but I can't figure out where it is trapped. (neck, scarr?) I'll be following your posts closely. Thank you so much for keeping us informed.

I worked in an OR where I saw a lot of complicated and amazing surgeries. I loved watching the skill of the plastic surgeons in particular. I can see where their skills with fine detailing would be an asset for this type of procedure working with tiny nerves. 

Janet

[terracotta]

thank you staypoz! had my first botox injection this morning. worth a try. staypoz, are you sure the docs that injected the botox hit the correct spot? you'de hate to have surgery if a botox injection might help. i'll check out dr d's website. i see dr carroll at stanford pain clinic. i asked him about peripheral nerve surgery but he didn't have much to say. my husband did'nt think decon surgery could be done on a scar neuroma but could be performed on other types of nerve injuries. sounds like dr dudec is adventurous and pushing forward something new to help us. dr carrol says if the botox doesn't help he'll send me to a neurosurgeon who can implant a stimulater type device in the injured nerve. for me, its the aricullar nerve.
thanks again.
happy holidays,
t

[staypoz]

Hi, Terracotta.  Keeping my fingers crossed that the botox works for you.  My neurologist gave me the injections and since he has also treated other AN patients with post-op pain, I'm confident he hit the right spots -- I had several injections.  One of his patients did have relief, so it can work!!  I guess we're all different in how we react to stuff. 

My headaches are from the occipital and suboccipital nerves -- maybe that makes a difference.  I know that the kind of surgery (as this layperson understands it) is also performed on patients who have intractable pain from other kinds of surgery scars.  Wow, a stimulator device!  Hope it doesn't come to that for you, but isn't it good to know there are options out there?  I'd never heard of that approach before.     

I think it's important that we all continue to share information about our various treatments.  We can take that information to the various doctors who are treating us and contribute to the body of medical knowledge about how to help those of us with this darned side effect. 

I hope the new year and the botox brings you some relief from the pain.

staypoz

[Janet]

Just for comparison, here is what I am getting for Botox headache treatment.

I get 31-39 injections in 7 specific muscle areas. Frontalis, corrugator, procerus, occipitalis, temporalis, trapezius, and cervical paraspinal muscles. This is repeated every 3 months.

Janet

[terracotta]

An update. Its been nearly a month since the botox injection. I don't think its working for me. I've had several major headaches. I'm also trying Cymbalta along with the botox, so looks like neither are the ticket of me. Also I'm having so much trouble with sleepiness from the Cymbalta that I have a hard time driving. I called in to the PC and for now am being backed off the Cymbalta while getting started on Lyrica(sp?). We'll soon see what's next.
T

[Janet]

Terracotta,

Sorry to hear that your headaches are continuing and that the Botox and Cymbalta are not working for you. I am curious if you were given injections on both sides of the head and how many. I know how hopeful you were that you would get relief from your latest treatment and I hope you are not discouraged. It seems that the trial and error process is what eventually gets people the relief they are seeking. I wonder why everyone seems to respond so differently to headache remedies? Is it the location of the nerve involvement? Or how much of the nerve? The health of the nerve?  Different nerves?

I am anxiously awaiting for Dr Ducic paper regarding surgical treatment of 7 AN patients with peripheral nerve pain. So far his work at Georgetown University seem like the only attempt to cure the problem. Staypoz , Have you heard anything more?

Janet