Heard of Dural adhesions causing post crani headaches?

[bridgie]

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

[jerseygirl]

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   

[bridgie]

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!

[jerseygirl]

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

[Janet]

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

[bridgie]

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.

[diane]

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

[Janet]

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

[bridgie]

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.

[bridgie]

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!

[Soundy]

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

[bridgie]

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.

[Omaschwannoma]

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. 

[Janet]

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

[Omaschwannoma]

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