ANA Discussion Forum
Post-Treatment => Headaches => Topic started by: bridgie on July 09, 2008, 05:14:04 pm
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Last month, I visited my neurosurgeon 400 miles away. He wants me to have a brain MRI and new cervical spine images. Unfortunately my Neurosurgeon is very ill and hasn't even been able to dictate the note from my visit which is required for the MRI to be authorized. I'm on hold.
In the meantime I've been doing a bit of research. Found out about chronic head pain from the dura becoming attached to muscle due from adhesions. This may very well be a component of my head pain problem. Pain can come from the dura. My pain condition came along after a cranial bone infection and epidural abscess. Not surprised to have internal scaring like this. Already diagnosed w/"scar neuroma" from external scarring.
Check this link below!
http://ihs-classification.org/en/02_klassifikation/03_teil2/05.07.02_necktrauma.html
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Bridgie,
I have not only heard of a pain caused by muscle to dura adhesions, I lived through it for 10 years. My first surgery was 20 years ago and I have from that a huge incision that goes from the top of my head all the way down and including a good portion of my neck. The opening is wider than it is practiced now and is partially covered by a metal plate. The other portion of the opening has the muscle stuck in there, so every time I turned my head or did any activity that required any amount of straining or bending, I got a huge headache. The headache was almost always accompanied by nausea and/or vomiting. I learned over the years to control and prevent my flare-ups by doing stretching exercises regularly, taking Indocin suppositories because I could not hold anything down and getting acupuncture ASAP to abort the pain cycle. The muscle stuck into the incision, by the way, was a part of my own trapezoid muscle. To this day my right shoulder is weaker and bonier than the left. In fact, I have to do weights to even be able to lift the affected arm. A few days ago I looked at my old videos. It was taken about four years post-op and my right (AN) shoulder was significantly lower, smaller in volume and less mobile than the left. I guess I was trying to keep it still to prevent pain.
When I needed my second surgery, I asked every surgeon what he did to prevent headaches. Some, but not all, surgeons performed cranioplasty which in their experience reduced the severity and frequency of any headache incidence. My second neurosurgeon drilled through the metal and a very small opening was sealed by cranioplasty. The scar was also much smaller - only 8 or 9 stitches so that minimized any occipital nerve entrapment that could potentially happen. The result - NO PAIN, absolute ZERO.
Muscle to dura adhesions still occur but were more frequent in the old days. Nowadays more surgeons are aware of it happening. What makes you think that is what is causing your headaches? Thank you for the link, it is right on the nose. I wish something like this existed 20 years ago so that I could take it to my post-op appointment and get cranioplasty to prevent years of pain that made my existence so unbearable!
Eve
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Thank you so much EVE!
Short version of longish story: I had a temporal fossa craniotomy 2004. Its not likely I have the same sort of muscle adhesion trouble you had. After surgery I ran into complications. Lost my hearing and developed Bells Palsy. I was placed on 3 rounds of steroids. At 3 months post op I developed a cranial osteomyelitis (bone infection which is really serious) Had a second (but emergent) nraniotomy. The infected bone (the bone flap) was removed and the infection areas were debrided. I was on IV antibiotics one month but the infections continued. Had a third craniotomy w/mastoidectomy and debridement around the temporal area. More IV antibiotics. Had my first surgery in late June by this time it was late fall. Early December I was taken off antibiotics. One week later I developed a cranial epidural abscess: http://www.emedicine.com/neuro/TOPIC176.HTM
Back on IV antibiotics for 6 weeks. In the meantime I was hospitalized on Christmas day due to a gallbladder attack! Turns out I had a really really rare reaction to antibiotics. Still my GB was removed Xmas day! demoralized! Actually everything that happened to me was really really rare.
Anyway, Feb. 2005 I had a 4th craniotomy (temporal fossa again) to drain the abscess in my cranial fossa!
Ever since this happened I've had head pain issues. Pain clinic doc think its due to scar neuroma. He's been giving me botox injections. Still I've developed a new pattern of headaches recently and I have good reason to beleive its not just superficial response ie scar neuroma. My headaches do not follow any pattern I've come across in readings. just getting jarred around caused head pain. Mostly hurt from ear area and neck. I do have degenerative joint disease which is pretty bad but no stenosis. The hard part is I don't just get nauseated and simply vomit. I now get nauseated but once I start to vomit I wind up in the ER because I can't stop vomiting. Very often the head pain is also on top of my head like a feeling of traction. One of the more recent 'attacks' my nodes were a bit inflammed like I was coming down with a cold. so this was due o a more internal issue. It has to be more then just the eustatian tube being plugged. Pretty drastic response. I belive it could be a combination of problems stemming from scarring.
I'm wondering how you knew you had adhesions causing your head pain? Did the docs believe you and take your situation seriously? Was not till you had second surgery before they and you knew about the adhesions /dura problem? I've suffered like this for 4 years. I'm sorry you went along for 10! Now I'm taking MS Contin 3 times per day which is a long acting morphine. I've got phenergan and other antinausea meds. What a mess!
You know I found another (longer) article written about this subject. I'll see if I can post it. Its not available online for free.
Thanks again EVE!
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Bridgie,
It is absolutely unreal what you have to go through! I feel for you and sincerely wish for your pain to go away. I found out about dural adhesions when my original tumor started growing again and I was researching what was new in the field of neurosurgery because I did not want to go through the same pain (literally and figuratively speaking) again. A lot of patients complained about post-surgical pain and how it ruined lives. Doctors started looking to change things partially because radiation just took off, the tumors were smaller thanks to the MRI w/without contrast, and the surgery looked like an absolute horror story (which it was). Patients turned to radiation and neurosurgeons were losing business because microsurgery was now not the only option. I bumped into a lot of articles about dural adhesions. I also remember an article about bone dust and it causing pain.
Cranioplasty or anything else that cushions the incision (fat for instance) helps but having read your account, I seriously doubt that you would want to go through another surgery again. Thank God everything finally healed! I personally vouch for acupuncture: it helps with pain. I absolutely agree with just about everything article that you posted about pain says. You have to build up your immune system after this many surgeries and rounds of antibiotics. The only thing that was different from what this article states in my experience was Codeine. It made me vomit non-stop. I was like a fountain. When I went for my second surgery, I told the doctors about it and even chose the painkiller without Codeine. It turns out that I did not need it at all!
I was treated at NYU the first time, I saw a lot of doctors; it seemed there was a specialist for every symptom. They all dismissed that I was having intractable pain. I remember sitting in a neurologist's office who marvelled at my facial nerve and told me about the pain "It is simple: when you have a surgery on your leg, it hurts. When you have surgery on your head, it also hurts". That was easy for him to say! How does one live with chronic, unrelenting pain? How does one make it to work and does his/her work? How can one relax if you have to keep busy constantly otherwise the only thing you can do is cry? This is the first time I felt suicidal because there was absolutely no help for pain. Needless to say, I was never in his office again.
Best of luck to you. I hope you find relief and your days will be pain free!
Eve
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I had my scar revised after 4 years of pain. It fixed it. A nerve block can help diagnose which nerve the pain is coming from. Does anyone know how a stuck dura is diagnosed?
Janet
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Thank you so much for writing me back again Eve. I've tried lots of things for my head pain. Anti-depressents, anti-seizure meds, trigger point injection (auricular nerve) botox injections (been helping for awhile, now-- not so much), relaxation, meditation, psychotherapy, chiropractic adjustment, and acupuncture. The acupuncture triggered a one week long head ache. Tried it twice. Got the same response. Seems like I'm always seeing a doctor and trying something.
Since my cervical spine flared up last year I've had 8 different epidural and facet block injections.
One month ago I saw my NS. But this was before I ran into the dura pain notion. I do remember my Head & Neck surgeon whom operated with the NS I went to mentioned along time ago the notion of dura pain. Anyway, this NS wants me to have a brain MRI w/and w/out contrast. I'm also to get a new c-spine images w/flex & ext. I've lined up a neuro-radiologist I know to oversee the imaging and I'll sit with him in the reading room to go over the images. (cool,huh?)
Anyway, trouble is, I was the last patient this NS saw. He has my chart at his home and has not dictated it yet. Something happened to him. He's not showing up to work and canceling surgeries. Because he's not dictated my chart the insurance company can't authorize the MRI w/out his note! Pretty weird.
In the meantime I did tell my PCP about this situation. He's a medical acupunturist too. Anyway, he is treating my pain quite seriously and is treating me for Intractable Pain. (see my post under this IP) It took me 4 years to find this doc. I take MS Contin 3 times per day. This is long acting morphine. I lso have Norco for breakthru pain.
Still over the weekend I traveled (which is a trigger) and blew up when I arrived. Had to spend my first day of my trip in bed. This is a pattern for me. I did mange to keep from vomiting. Did have to call my PCP to get instructions as to which meds to use. He has created a little "kit" of meds for me to use when this happens. This way, I might not end up in the ER. It would be irresponsible to do otherwise. I'm still paying off on a $8000 hospital bill.
Eve, thanks again.
Janet, did you have adhesions?
I do not have a titanium plate where the bone flap was. It was removed when I developed osteomyelitis. So there is no cushion for my dura. I'm wondering if I need a new titanium plate or maybe just clean out the adhesions.
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I too had a cranioplasty for my headaches, back in 1998. My original AN surgery was in 1995 and I had a headache from that time to 1998, caused by the muscle adhering itself to my dura through the hole left in my skull. Dr. Max Steuer in Atlanta did my cranioplasty in 1998 and once that healed, the headache was gone. It's wonderful! Good luck in finding out what is causing your headache.
Diane
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Hi all,
I can't believe what some of you are going through or have been through. I am reading a lot of hope in these posts. I am so excited to read of actual headache cures. Three years ago, when I first came to this site, I could not find one person who was actually cured from these horrible headaches. Now cures are starting to be reported. Myself included. If I wasn't a RN with 30 years hospital (L&D, PACU and Operating Room) experience, I am not sure I would have been able to navigate myself to a cure. If I would have listened to most of the doctors I went to, I would still have headaches. It was a periphral nerve surgeon who zeroed in on the problem and fixed it. This is something the neurosurgeons, as good as they are, were unable or unwilling to take on. I was thankful for the treatment I got from the headache neurologist (Botox, Indomethacin) but, in reality they treat but do not cure.
In response to your question, I did not have a problem with the dura coming through the bone and attaching itself to the muscle.
I did have my lesser occipital nerve grow into the scar and the auricular nerve attach to the titanium plate. This was repaired by a peripheral nerve surgeon who used a technique so the nerves would not become problematic again. He also took a fat graft from my hip and lined the bed. I have zero pain from this area.
My most severe pain was from the occipital nerve on the opposite side of my surgery! Like all of you, everytime I moved a certain way or sneezed, I would get severe sharp electrical type pain. My life was trying to get through the day trying to minimize the pain. I slept sitting up for 4 years! When the periphral surgeon opened it up he found a "blood vessel piercing through the occipital nerve". I think the nerve and the vessel were always close together, but when my head was put in a headframe for the AN surgery it forced them together. This would explain migraines before surgery that increased to unbearable and intractable after surgery. I had this done in February and I have only an occasional mild twinge that is getting increasingly rare. (Tylenol takes care of it.) Life is back to normal.
I am so happy to hear this discussion. I am convinced that these headaches are best treated by fixing the root problem. The nerve problem is a fairly easy fix. (Out-patient) The nerves won't revert back to the same problem ,if your surgeon is experienced with nerves. Fixing the dural adhesions would require a neurosurgeon because the skull is involved. More complicated.
I still have a question. How do they diagnose a scar neuroma vs dural adhesions?
Best Wishes,
Janet
Janet
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Like you Janet, I'm now finding this discussion really helpful and encouraging. I will know better what to ask and who to ask. You both are giving me hope. I agree the root problem needs to be identified and gone after if the risk are low-ish. Now I want to know how to find a peripheral nerve surgeon. I guess we first need to identify what I've got going on. I'm anxious to get the MRI. Will that show adhesions? I do know I have scaring were the epidural abscess was located and the titanium plate was removed due the osteomyelitis (bone flap infection). Trouble is, I'm waiting for the NS to come back from medical leave which sounds like it will take along time to happen. So frustrating. I've been reading about arachnoiditis and worry about that too. Be awful if this is something that was progressing. I'm concerned about that because of the changing pattern of the head pain.
As far as knowing the difference between scar neuroma and adhesions: pretty much the scar neuroma was diagnosed based on exam, asking me questions and trying trigger point injections. I'm not yet sure about the adhesions. But the scar neuroma is more superficial.
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Finally heard from Neurosurgeons office Friday afternoon. He's come back to work! Yeah! Its been two months since I saw him and he wanted me to have a brain MRI and plain Cervical x-rays. He's been ill since I saw him last. The hour I saw him was the hour he became disabled and didn't even have the chance to dictate a note from my visit, hence we've not been able to obtain an authorization for the MRI without his note. His assistant says he has now dictated the note and now we should hear from the carrier next week or so. I'd already talked to a neuro-radiologist I know. I wanted him to oversee my imaging and review them with me.
Last week or maybe the week before I called Capt Deb's doctor (Ducic) in Wash DC to see if he'd be interested in helping me. His assistant called me right back. I also wrote Dr Ducic an email message telling him my story and checking to see if he would like to help me. His assistant said he was out of the country. Hopefully I'll hear from him. Seems like everyone these days that I need to help me has other larger then life problems themselves! Even the contractor whom is remodeling my kitchen. The medication I'm taking for pain (MS Contin) has decreased my appetite. So along with no kitchen and no appetite I've lost 10 lbs since I saw my Neurosurgeon in June! This caused my thyroid levels to go out of whack making me hyperthyroid which is making me cranky etc! Now my PCP has decreased my dosage. On and on. Be nice to have concrete answers and stop this madness!
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I missed this post but find it of interest...
I have had head aches ever since surgery and over last several month they have increased... lifting with right
arm can trigger that runs up neck and up the side of my head along scar and triggers head aches ...just turning
wrong or sneezing or bending over can trigger one...
Had an odd thing happen several month ago... up hear crown of head about an inch from the corner of my scar
I was having pain that seemed to be my scalp hurting ... after a couple days I heard a little pop that burned at
the point of pain then eased up...it left a dimple in my scalp about as big around as a dime and maybe a quarter
inch deep...they said it was adhesions between scalp and skull from where they peeled my head...
I had adhesions after abdominal surgery that had my innards stuck to each other ...had to go back in after a few
years to have adhesions removed... I was told that many people were prone to adhesions after injury or surgery
but had never thought of adhesions in my head... I am at present with out a doctor but am going to research this
and hopefully before months end I will have a new doctor and can look into it further... for now Tylenol ,hydrocodone
and Demerol are my friends
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Welcome to this thread Soundy. Yesterday I emailed my son's pediatric oncologist. He manages all the kids with brain tumors at a local Childrens' hospital. He was my son's doctor at one point. He also helps with headache management too. I aske dhim about headaches post craniotomies and this is what he wrote back today:
"Yes, any manipulation of the dura can lead to neuralgia, headaches, and pain syndromes. So, I agree you would best
hook up with someone who can handle these sorts of issues."
I finally had my MRI last week. Now I'll be sending it off to my NS. I hope and pray he'll really try to help me out. ???
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Hope you all don't mind my two cents, but for what it's worth I too suffered headaches post surgery where they started in the back radiating towards one or sometimes both ears, sometimes this felt more like a numbness/creeping sensation before pain, sometimes pain was in middle of head and finally settled behind one or both eyes. Neck muscles were tender too. So I "googled" "occipital neuralgia" and this was my problem.
I noticed the "head forward and down" position would bring on pain, also "head jarring" did this too. So, I started to apply ice packs/heat when I noticed the "numbing" sensation coming on and this has helped with the full blown head pain. I do self massage to muscles of head and neck along with stretching and this keeps the "tension-type" headaches at bay too. But, sometimes I have to resort to anti-inflammatories such as ibuprofen.
I know most of you have been told by your doctors about scar neuromas and dural adhesions, but thought this might offer some insight too.
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I had problems with the occipital nerve that was being set off by a blood vessel and tight muscles. I also had a scar neuroma from the lessor occipital nerve. These were on opposite sides of my head. The 2 problems from the occipital nerves are both considered occipital neuralgias but with different causes.
The term occipital neuralgia means pain from the occipital nerve but it doesn't indicate what causes it. It could be that the occipital nerve or even the lessor occipital nerve did grown into the scar and this is what causes occipital neuralgia. It could be that the occipital nerve is too close to a blood vessel or that the muscles are too tight around the occipital nerve. There are other causes, even viral.
In other words, occipital neuralgia is a symptom. What causes occipital neuralgia could be different.
I still have questions about dural adhesions. Would they have to rule out occipital neuralgia with a nerve block before they could give a diagnosis of dural adhesions? How would the symptoms be different? What is the fix? Do certain medications work better with dural adhesions vs occipital neuralgia? Is this cause of headaches a theory like the bone dust theory or has it actually been proven to be a cause?
Janet
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Janet,
Thanks for more insight, I found your words educating and perhaps you can enlighten me more. Can the diagnosis of dural adhesions be instead arachnoid adhesions/lesions/cysts? Just a thought here. Hope you all don't mind.
Buttinsky
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Just a little confused here. How can the manipulation of the dura, which is inside the skull, affect the occipital nerve, which is outside the skull. Also the nerve blocks work on me, leading to the theory that my occiptial nerve was somehow affected during surgery. It is nowhere near the surgical field as I had middle fossa. I need one of those 3-D models of the skull with all the nerves and muscle to look at! I really want to understand why I have this pain all the time. It won't lessen it, but understanding it WOULD ease my mind if not my pain!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/yellow_guy_crazy_sm_clr.gif)
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(http://i235.photobucket.com/albums/ee60/Captdeb_photos/yellow_guy_crazy_sm_clr.gif)
that is me since surgery...confused...
and I have different headaches that come on differently ,feel different and are relieved differently...
something I could never make my now song writing surgeon understand...
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Hi Capt! ;D and Buttinsky! :D
I'm really appreciating your conversation and questions because I have the same questions really. I've been doing some research about dural adhesions, but frankly information is hard to come by. There is a condition called Arachnoiditis, which can occur in the cranium but its more prevalent in the spine from failed back surgery, myelograms, and epidural injections. It can be progressive. From what I can tell, and I maybe off, but this is called adhesive arachnoiditis.
Last week i finally had my brain MRI but didn't find it too helpful really. The radiologist was checking to see if I have a recurrent epidural abscess or some other type of brain abscess continuing on. (Scary thought) He was not trying to help me beyond simply accessing if I was in any sort of acute trouble. He compared my MRI from 2004 when I did have a epidural abscess to this imaging I had last week. From the imaging the epidural space does not enhance as much as before. Still its not normal, it still enhances between the temporal bone and the dura.
Anyway, I've forwarded my imaging to my Neurosurgeon. He will review the images likely along with a radiologist at his institution and then respond. I'm hoping he'll be more helpful. From what little I know about dural adhesions, its possible to perform a procedure called a cranioplasty.
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Capt Deb-
I think we're talking about two separate issues here. My son's oncologist was addressing me in the quote I posted. It's probably not going to apply specifically to your situation. You have to look at it in general terms, which is why I quoted it. I didn't mean for people to take it literally but I can see how that could happen now. Didn't mean to create confusion. Often we are comparing apples and oranges and its easy to forget. I was specifically asking him about the dura, not the occipital nerve. You could however insert "occipital nerve" and remove dura and then for you it may or may not make sense. What I 'm saying is they probably didn't need to play around with your dura to get the neuralgia of your occipital nerve going. But I don't know. And I don't know why this happened to you since your surgery was temporal fossa like mine. You see for me there is a likelihood I could have dural pain from adhesions because I had an infection for months sitting in the dural space that surrounds the brain where all the surgeries happened. Also there was alot of trauma to my head both superficial and within. I had 4 craniotomies with debridement and one mastoidectomy with debridement. Anyway, I can see how this quote set you off as you don't know why your occipital nerve is creating pain and it would appear from this quote the dura would have caused it somehow but for you it would have to be indirectly. I honestly don't know how that could happen. You'd have to ask your neurologist. I'm like you I want to know. I understand my anatomy is altered since all this happened to me, so I try hard to understand how I'm operating. It does help to know what you need to get worried about and what weird symptoms I need to simply adjust to.
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I agree. 2 seperate issues.
Occipital nerves are outside the skull.
Dura is a membrane that covers the brain inside the skull. (The arachnoid and the pia are the 2 other membranes.) I have heard that the dura can get stuck to muscle through the skull incision. (My physical therapist gave me a print out on this, but I don't have the source.)
You might consider that the headclamps used in surgery could have damaged the occipital nerve. I think this is why my occipital nerve had a vessel piercing through it on the opposite side.
The occipital nerve route goes over the head on the side like a ram's horn. Deb, is your incision close to this?
Janet
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??? Really intrigued with this conversation ladies, thanks.
Confused once again--sheesh, I don't think there are nerves in the dura, pia or arachnoid linings so where does the pain come from? I know I had multiple arachnoid lesions removed and after reading article on them found out they can cause headaches and these little so and so spiders can return to same side or other side too! Whoopee for me! Seems they are formed by trauma so their return, as my new neurologists says I have a biggee in the surgical sight, is likely. Wonderful!
As for the "pain" thing, compromised nerves cause pain and the cranial nerves are on the outside of the bone/skull and intertwined with the muscles that are under the skin. But, how on earth does the dura make it's way through the bone flap and attach itself to the muscles? Wow there had to have been quite the hole for it to squeeze through no?
I don't know ladies I'm just thinking here and bouncing my brain off on to you. I'm not the expert just one of you who try many things to prevent the pain and in so doing must figure out what causes the pain. As for what Janet says I know mine to be occipital neuralgia, but don't know why it's firing. Guess I don't need to know as I'm able to handle it with what's in the kitchen. If the day comes where stuff here doesn't work then we will have take a closer look into opening me up and releasing the nerve.
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Interesting discussion!
I have a hard time picturing the dura coming through the skull and attaching to the muscle too. Maybe this is a theory? Maybe closure techniques prevent this now but earlier techniques made it possible? I don't know.
The scalp nerves, I know to be more than a theory. They cause headaches behind the eye, head, neck and shoulder.
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Arushi-
The dura is not likely going to travel outside my skull or your skull and attach to a nerve and cause a pain syndrome. The dura itself has pain fibers. Therefore, if the dura is attached to adhesions we may get pain. See note below from article I posted earlier within this thread. My surgeon removed my bone flap and the titanium plate when I became infected. Now all I've got is skin, muscle and scar tissue between my scalp and brain in the temporal area of my head. Pinned on top of this are nerves that likely grew back funny in the course of healing. Does your doctor say you have arachnoiditis?
"The pathogenesis of chronic headache after craniotomy is unclear but may involve meningeal inflammation, nerve entrapment, adhesion of muscle to dura or other mechanisms. Modifications in the operative procedure, including the use of osteoplastic cranioplasty, may lead to a reduction in the incidence of post-craniotomy headache by preventing adhesion of muscle and fascia to the underlying dura."
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Bridgie,
Haven't been back to see my "new" neurologist since my first and last visit to her. She wanted me to go for another MRI, I thought this too soon since the previous one and told her office assistant to have doc call me if she felt it urgent I repeat MRI so soon after. I have not received phone call either way, so have opted to wait until December (another year) so don't know if the dx is arachnoiditis or what. At the time of my visit with her I saw her open up my MRI on her puter and she said "oh yes, there is arachnoid on side where operated and it's big." The fact I haven't gotten phone call from doc makes me wonder about her professionalism and has got me thinking if I'm with another "winner" specialist in my home town. Either way I'm waiting until December's MRI with Antonelli and will pass on copy to new neurologist to compare with one year ago.
Thanks for the "update" info on dura seems if you don't have a bone flap and dura sits next to muscle is where the pain comes from. Am I understanding now? Thanks again. Oh yes, then those of us that have the bone flap or flap made out of another material the dura isn't involved but rather it's a muscle, occipital or trigeminal neuralgia--yes?
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Arushi, one of the headache presenters at the ANA conference in Philadelphia last year talked about a syndrome, and explained that those of us who suffer from head pain may experience different kinds of pain from different sources, sometimes all at the same time. I have been doing some reading up on post head-trauma pain, and what we experience sounds very similar.
staypoz
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Good to see you posting "staypoz." I appreciate that you go to some wonderful sources to understand this type of head pain. Arushi, its true what Staypoz is saying. I've mentioned I also likely experience "scar neuroma" pain which is probably coming from the auricular nerve. I could even have an entrapped nerve to boot! Our anatomy has been altered. I don't think you could say that because you Do have a bone flap doesn't rule out a issue with the dura. I'm simply saying that in my particular situation its more likely--at least in my opinion.
Staypoz, I called Dr Ducic office and left a message and emailed him about my situation. His staff called and said he was out of the country. This was about 6 weeks ago. Now I'm thinking he's not interested in helping me figure this out. Still, I'm hpeful my NS will help me in some way at least find answers.
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Arushi, one of the headache presenters at the ANA conference in Philadelphia last year talked about a syndrome, and explained that those of us who suffer from head pain may experience different kinds of pain from different sources, sometimes all at the same time. I have been doing some reading up on post head-trauma pain, and what we experience sounds very similar.
staypoz
Hey staypoz! I missed that workshop. I had a screaming headache on that Sunday. I think I'll order the CD transcript.
Capt Deb
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Bridgie, I'd call his office again. I got frustrated with his staff and what I experienced as real disorganization.
Capt Deb, I remember that you were nursing a brainwreck and missed the presentation. Of all the docs I've talked to and heard talk about our pain experience, his explanation made the most sense. I would definitely order the CD.
staypoz
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Thanks for the advice regarding Dr D. I keep running into head trama as a parallel as well. Just from my own experience and observations, minus the cognitive impairments, I feel like I go thru the same type of experiences the soldiers coming home from Iraq go thru with tramatic brain injury. Not just the symptoms but the experience of finding care--- being such a struggle. I'd recently read an article about a guy w/chronic head pain from brain injury in Iraq. Even after the issue about the poor care at Walter Reed hit the media, this guy got lost in the system and one day they found him dead from overdose on similar treatment I'm getting. Recently I felt "lost" while being treated and can see how this could easily occur. This guy had not shown up for a regular check in and the military was very casual about it. He was very vulnerable as he'd just been placed on the meds and was supposed to be increasing his dosage in stages. When he didn't show up they should have been alarmed and gone to his housing. His wife had called the base when he didn't check in with her and they still were not alarmed or compelled to check on him. In the article it sounded like he could have been resusitated if he'd been found earlier. He was finally found at his computer so its likely an accident on his part. I too have this sense of getting lost and dismissed sometimes. This feeling has improved since I've found my current PCP however. It didn't help that my neurosurgeon became disabled as soon as I visited him however!
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Staypoz, what was the name of the work shop or CD?
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Here's the link: http://www.ctran.com/scripts/shopplus.cgi?DN=ctran.com&FILE=/orders/ANA/orderform.htm (http://www.ctran.com/scripts/shopplus.cgi?DN=ctran.com&FILE=/orders/ANA/orderform.htm) and the #s are 707-12 and 707-13. They are the 2 headache workshops by Drs Silberstein and Young, but i believe the one staypoz is referring to and the one I missed was the one by Bill Young.
Capt Deb 8)
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Thank you Capt Deb-
Are these workshops discussing headaches post craniotomy or headaches before crani?
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Thank you Capt Deb-
Are these workshops discussing headaches post craniotomy or headaches before crani?
The workshops focused mainly on post-surgical headaches. This is where I learned about Topamax being the drug treatment of choice by Dr Silberstein and demanded that my headache neurologist prescribe it for me. He hadn't done it befor for 2 reasons--cost and I had tried it befor and found the side effects difficult. I toughed them out and got on a dose that has really tamed my tough migraines--lessened their severity and frequency quite a bit. It goes generic in March 09.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Sorry to keep bothering you about the tapes...if you were going to purchase any of the ehadache tapes, how far back (time) would you go?
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I just would purchase the 2 most recent ones myself. Since I attended the Silberstien lecture, I just ordered the one by Bill Young.
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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bridgie, any chance you could make it to Chicago? The docs there are pretty good about talking to you one on one if you can corner them after the workshops. I did that to Silberstein. Also networking withother patients was a big help, too. I just toughed it out and was buzzed on hydrocodone the whole symposium and spent the last day partially bedridden, but I really came home with some good ammo in the war on pain!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Boy, wouldn't that be cool? So its next August? Since its so far out in time, I could possibly do it. I live like that too Capt Deb, buzzed out on MS Contin & Norco! ::) Traveling is rough on me but I still like to travel. My PCP created a "kit" I use with a variety of meds like anti-nausea and other narcotics. I'm like a traveling ER pharmacy. I agree, be nice to talk with the experts and see what their take on al this is. Thanks Deb.
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Someone asked how adhesions could cause pain...
my theory ... when I had adhesions from abdominal surgery , when I moved ,bending or twisting at waist ,
the internal organs that were adhered to each other and the peritoneal lining... the peritoneal lining was
adhered to under side of my abdominal muscles and so when I moved one way and the lining was trying to
stay still it pulled causing stabbing pains ...this according to the doctor that removed the adhesians and put
in some mesh to keep me from getting them again from the surgery to remove them
I have no bone flap or titanium plate ...just piece of muscle and skin over skull bore hole which is sunken in
but covered over well with hair so not noticeable to anyone but me ... in theory and again it is just mine , if the
dura is attached to skin or muscle and you move such as turning your head or reaching up the skin and muscle move
pulling at the dura causing pain...
If I turn my head to far to the left or stretch for something on a shelf with right arm I get a tugging
sensation across the scar and over bore hole... sneezing which tightens scalp gives an instant pull and headache
(with in seconds ) ... this all makes sense to me ... if movement of muscle and skin in other parts of body would
cause pain from adhered bits and bobs , then dura stuck to muscle or skin would act in same way ... I think :)
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Great "visual" explanation Soundy, thanks!
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That could be it Soundy. Also I've heard there can be traction on the little nerve fibers themselves caused by the adhesons to the muscles. This would be the microscopic explanation of what you I believe you are saying. ???
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Its been 4 years since my last craniotomy. When I had a MRI recently I still get enhancement. I'm wondering if others here whom have had craniotomies in the past (not recent) still get enhancing on their MRI?
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My fat plug lights up like a lightbulb. The radiologist still reads it as a possible acoustic neuroma until I send my films out to House and have them read by the docs there.
Capt Deb
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That's interesting. The radioogist mentioned enhancement from fat packing where I had the mastoidectomy, not part of the original surgery but part of osteomyelits treatment/debridement that was the third surgery. Still, I also have enhancing in other areas. Namely, at the "interface between the remaining temporal bone and dura" and also there is enhancement for what is likely a venous angioma, which is incidental. The concern is with the tempral bone and dura. no doubt as Dr silberstein claims, these are multiple issues going on.
I got the two tapes already! I appreciate knowing how much is not known---at least thats how I feel today! Now I understand why the doctors can't answer my questions. I'm hopeful this won't always be the case. But I'll be better able to ask questions. The NS asked I send mymost recent MRI of my C-spine to review witht the flex/ext plain films I'd sent with the brain MRI. I do for sure have instability at two levels called spondylolesthesis. Wouldn't you know it, this is another rare thing--but I know this is also part of the multiple things contributing to my head pain. Was it Dr Young that talked about stabs and jabs? Interesting when people talked about head pain rather then headache--so true. Anyway the NS will be calling me shortly and probably suggesting two level fusion of the c-spine. Scarey notion.
Thanks for telling me about these tapes etc Capt Deb!
Bridgie
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Bridgie,
You are quite welcome--I got my Bill Young CD yesterday but haven't had a chance to slip it in the old CD changer and I doubt if Dr Love would have wanted to listen to it on our 2 hr car trip down here to Charlotte. I was so peeved to have spent all that $ to go to Philly for that workshop only to have that dang brainwreck during the thing! I'm just glad to have been able to attend the ones I did. I get the stabs and jabs, too. Middle of nowhere all of a sudden someone sticks a knife in the side of my head, or the back of it.
I sure hope your docs get you sorted out enough to come to Chicago. The camaraderie and fellowship amongst us AN survivors is truly amazing at these Symposiums.
Hugs,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate-2.gif) (celebrating International Talk Like A Pirate Weekend)
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stabs and jabs are exactly what I get that my former doctor now songwriter ??? didn't
understand or care enough about to investigate.. and pulling sensations that lead to stabs and jabs
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Thanks Capt and Soundy. Here's a weird one. for two years after surgeries the whole side of my head felt like this blob of jello was attached. When I'd walk about, it felt like this portion of my scalp did not move in sinc with the rest of me. It was odd. Now and then I'll get a similar sensation. My NS said he's not heard that before.
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if you can raise your eyebrows and make your scalp move try it ... along my scar the scalp doesn't move while
top of my scalp and left side does... I used to could wiggle my ears but now can't ...I moved them by tightening
the back of my scalp and now it doesn't tighten... I think my scalp is on too tight :D
something else funny happened maybe 6-8 month out ...I may have posted it here...can't remember exactly when
and too lazy to go look in my journal I scribble in to find exactly when... but anyway...
I was having alot of burning pain at crown of my head ...I was rubbing it and putting heat on it ...this went on
for several weeks and then one day while rubbing my noggin it made a popping sound , followed by super burning
pain , then eased up... but it left a dimple (doctor called it a divot) where the pain was radiating from ... when I
went in for a check I showed it to him and doctor said the scalp was just to tight right there and pulled loose and was
nothing to worry about
my thoughts are that if it could be too tight in one spot what's to say it isn't too tight in others and causing
some of the headache pain... I thought your scalp just kinda sat on your head without tight attachments...anymore
I know little about how my head is suppose to be held together ...
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Soundy,
Sounds like your scalp skin has built up scar tissue. You can soften this up with cross-fiber frictioning all along your incision. I understand this won't help with headaches, but will help with more pliable skin.
I started this just after I received the "nod" from surgeon to resume my "normal?" life and also would run my fingers up and down either side of the scar. This helps to keep scar tissue from forming. I did this with the fat scar, it's soft but still looks crummy, I wonder who practiced on me here as I went to Univeristy Hospital and instead of sutures they used glue. No matter it's hidden anyway.
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I have a personal masseuse ... my husband :D... he massages my head and it does loosen it
up ... he can put me to sleep rubbing... does do a number on my hair ... but have to stay clear
of the scar except top and bottom end ...most of it is kinda numb and tingly but the corner is
painfull... some days I can't pull my hair back and barely can run a brush through it... he also does
my neck... the right side from shoulder to side of head is tight... he rubs it or I heat it with a rice
pack before doing stretches ...
he offered to give me a shot of the lidocaine he has for vet use in the scalp :o ... although
tempting I didn't take him up on it
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;D ::)Gotta laugh at ourselves. Where my bone flap was or the area where the skull bone was removed--well the edges used to have these rice krispie bumps that would crackle if I touched them. I have this area in front of my ear where I'd get drainage from the infection. (Four months post op I'd take a shower and puss would start to perculate out!) Its a very sensitive spot, can trigger an electrical type shock if i touch it. I hate to touch the "soft spot" where there is no bone. It always feels bruisy and feels like a headache is coming on awhile after I touch it. Mostly it feels like I've been kicked in the side of the head all the time. Its not just a migraine type headace like Dr Young talks about--its our stabs and jabs and other weird senstations. There's a whole mini factory of little people in there having a carnival at our expense. Sometimes they get out of hand. ::)
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I finally spoke with my NS. Its taken 4 months! He's not diabled anymore! I'm sorry he was sick but the truth is, this extra time has allowed me to gain information, become informed so I could ask better questions. I'd likely been dismissed as I have in the past if I hadn't been prepared to the extent I am now. I owe my friends on this site for answering my questions or simply commiserating. ;D
Here's the low down:
Nothing acute in the head. The enhancement is likely scar tissue. At first he did not think it was due to dura being attached to scar tissue. Not had this happen in his 30 years of experience, but then he did say this kind of problem can arise in the back of the head when its an occipital approach. Then he thought again that it could actually be related to the temporalis mucsle becoming attached to the dura. He ask if I get head pain when I move my mouth etc. I do get direct pain or did w/out Ms Contin on-board. Now that I'm on this medication I do not feel much plus you get memory problems! He can't test this with local numbing medication because it would also numb the brain and then of course I couldn't give him feedback. I'd just need to be confident I'm having pain from this area, he could open me up, move the re-position the temporalis and place a titanum plate where the bone flap used to be to pad the area sothis would not happen again. At the same time the ENT doctor can place a BAHA abutement.
Neck: my neck is in trouble and likely not helping. The same time period I go for testing and surgery of the head I get testing on my neck for nerve involvement w/degenerative disc disease, see if there are nerve roots involved. The worst thing is the spondylolisthesis which is also likely causing pain and adsding to the issue with my head. This means the vertegbra is out of alignment. At one level its actually moving forward 4mm when I flex forward which is actaully a lot and means I'm not stable. This problem is more common in the lower back then cervical spine. Its a bigger problem as well because the cervical spine contains the spinal cord and th lower back doesnt.
So the NS proposes the head surgeries, testing for the neck and sooner then later cervical spine surgery as well at one or more levels. I'd stay at a hotel for a period of time before and after these procedures as the facility is 400 miles away. His assistant called me back shortly after we talked and relayed their medical center does not have a contract w/my insurance company (in negotiations) so now I'm unable to do any of the above! Breaks my heart after working so hard to get possible answers with one obstacle after another. I do not see myself taking MS Contin for the rest of my life, which is why I set out to defy the odds with this situation and get answers.
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Bridgie,
Don't despair here as it sounds as though you do have some good answers to your problems and how they would solve them, but now you can get second opinion with reputable surgeons. I know you will have to revisit the "searching, trusting" emotions once again in finding another doctor, but perhaps in the end you will see it is better.
P.S. An FYI here, but I'm pretty sure the spinal cord does go through the lumbar/lower back spreading out into smaller nerves in the sacral area to supply organs in the abdomen and legs.
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Its odd but true:
Spinal Cord
The spinal cord is part of the central nervous system of the human body. It is a vital pathway that conducts electrical signals from the brain to the rest of the body through individual nerve fibers. The spinal cord is a very delicate structure that is derived from the ectodermal neural groove, which eventually closes to form a tube during fetal development. From this neural tube, the entire central nervous system, our brain and spinal cord, eventually develops. Up to the third month of fetal life, the spinal cord is about the same length as the canal. After the third month of development, the growth of the canal outpaces that of the cord. In an adult the lower end of the spinal cord usually ends at approximately the first lumbar vertebra, where it divides into many individual nerve roots (L1).
from Back.com
Yes, I see this whole issue as a puzzle, etc. I may wait on the facility (while also visting other doctors) , see if they sign the contract w/my carrier.
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Thanks for educating me, once more, I appreciate the correction on spinal canal and cord. :)