ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: terracotta on December 08, 2006, 07:03:35 pm
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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
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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
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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
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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!
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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. ÂÂ
staypoz
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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.
T
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Quick question Bruce. Does the Cymbalta give you weird dreams? I'm having these bazaar sci-fi type dreams just before waking up!
t
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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.
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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
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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
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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
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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
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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
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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
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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
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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