Headaches, Head Pain, Neck Pain, Ear Aches.

[mmccullen]

I had AN surgery in Oct. 2009, and from the moment I woke up I had horrible neck & head pain.  The pain has continued and has not improved at all.  I have been to a Neurologist that specializes in headaches.  After several medications that didn't work, he referred me to a Physical Medicine doctor.  He told me it was muscular and I needed physical therapy so I did 6 months of therapy and no change.  I was then referred to a Rehibilitation Specialist, I went through several sets of trigger point injections, a couple rounds of Botox and a couple sessions of Acupuncture.  Nothing is helping and all the doctors have basically said that they can't help me.  I don't know where  to turn next, my personal physician has referred me to a pain clinic, but I'm not sure if I should go, is it going to be another waste of time and money?  Does anyone have any suggestions.  Thanks. 

[cin605]

I had surgery in 2008 and have tried all...i was refered to pain clinic /spine specialist....got trigger point injections....nerve ablaision...muscle relaxers,anti inflamatories......after that failed they refered me to sacral cranial therapy....no results from that.......grr...i figured if i kept going where they sent me someone would help.
i just got more stressed running from person to person....Its crazy....hang in and hope you find relief soon.
cindy

[CHD63]

mmccullen .....

Welcome to this forum.  I am so sorry you sought us because of your extreme headaches, neck pain, and ear ache.  Unfortunately this is sometimes a complication of AN surgery.

To answer your question, IMO I would go to the pain clinic.  You never know when the right contact will provide the relief you need.  Pain specialists are specifically trained to deal with pain, not to "cure" what is causing it.  Therefore they have many avenues to use in dealing with many different types of pain.  If you go and find no relief, at least you know you checked it out, but if you do not go, you will never know if you could have had relief.  Just my thoughts.

Clarice

[Jim Scott]

Mmccullen: Hi - and welcome ~

I'm sorry you're suffering with this neck/head pain .  Your frustration is evident and completely understandable.  Although I haven't had your experience, my wife has struggled with pain resulting from an auto accident and numerous spinal surgeries over the past 19 years.  She sees a pain management specialist (M.D.) and he recommended she try an implanted nerve stimulator to help alleviate pain she was experiencing in her legs.  The device ( a neuromodulation stimulator manufactured by the Medtronic company) was implanted (an outpatient procedure performed in a local hospital by the pain management physician) in December, 2009 and is monitored every few months by the doctor.  It gave my wife a noticeable level of pain relief, although not 100%.  My point is that, as Clarice suggested, a pain management specialist may be able to offer you some method of relief but you won't know unless you go.  I can understand your reluctance, based on your negative outcomes so far as you sought pain relief, but you can never stop trying.   I wish you success in your quest for relief.

Jim 

[mmccullen]

Thank you all for your replies, I just found out about the ANA Association a few weeks ago, as I read some of the forums, I realized I was not alone.  I was never told about the severity of the headaches you could get and the length of time you would have them.  The "some people experience mild to moderate headaches for a few weeks to a few months" line the the infomations brochure really wasn't something I was concerned with when given the surgery option.  Had I known, I would have thought twice about the surgery and probably opted for the wait & see approach.  But you can't go back, so I will keep going forward and hopefully find some relief soon.  Its just really nice to know that there is a place I can go and discuss with people who understand what I have been going through.  Thank you all again .

[Larry]

BYour headaches may go but also be prepared that they might stay with you. I've had headaches since day one of my surgery and that was 10 years ago. yes - very frustrating.

there are numerous posts on thsi subject and there are some surgical options available depending on the actual cause. Do some further searches on this topic and hopefully there will be another option for you.


regards


Laz

[Janet]

I spent years trying to treat and figure out what was causing my severe headaches, after my AN surgery.

It really was straight forward. The good news was it was the problem was outside my skull.

Left side - 1 damaged nerve with an artery embedded in it.
Rt side -  1- small nerve in the titanium mesh,  1 small nerve grown into the scar.

I had it surgically (outpatient) repaired by a plastic surgeon, that specializes in peripheral nerve surgery.

It dramatically helped me.

Good luck.  Janet




 

[Denise S]

I'm a bit curious as to what kind of surgery you had?  

I suffered from some neck pain and base of the skull pain BEFORE going into surgery, but not severe.   It was brought to the attention of my neurotologist and neurosurgeon prior to my middle fossa surgery.    Well, after my surgery, I started actually having some lower back pain along with the neck acting up too, and head pressure at times.    I did some P.T. and some meds for awhile, got a bit better and back was great.      My situation was tricky because I also was diagnosed with another thing (that I've had all worked up on and they seemed to rule out as source of pain for now, so I'll skip adding that confusion for now).    Anyways, suddenly my pains got worse again anytime I cough, sneeze, bowl strain, etc.   My main head pain seems to be the base of the skull, into the neck area, and then the whole head pressure at times.   I have seen neurologist who said muscles, and tension migraines, etc.        

I too went to a pain clinic who did some trigger points and an occipital nerve block and some other oral meds, over a period of time of course.   This all helped keep me from trips to ER in my pain.   Well, the pain isn't getting better and the pain clinic doctor, who is also an anesthesiologist, recommend I go to the Michigan Head Pain and Neurological Institute here in Michigan.  He said he thought I needed a better diagnosis to work with.     I just went March 1st.   There we did discuss something that I have read on here before that was related to trauma to nerves, muscles and ligaments after surgeries.    We talked about how the head is positioned in a vise like device for such a long period of time while doing the surgery and it can be a huge trauma to parts of the body.    For me they said especially made since how it went about because I had some mild issues before the surgery and it all worsened after.      I was in a car accident where I hit my head very hard on the front dash and had a bad concussion 20 years previous to the surgery too, it is possible that some degeneration/arthritis stuff has set in my neck area because of that too.?.?

I ended up being diagnosed with cervical facet syndrome, cervecogenic headache, myofascial spasm , tension migraine, TMJ disorder   and they said that is it for now.    I have to go back.       Also because I am deaf on the one side I tend to turn my head a lot to try to hear, so that puts a lot of extra strain on all those areas, ugh.     I had never heard of the 1st 2 diagnosis, but when looking into them, they made lots of sense to me.     Now as for treatment, they actually recommended me for an inpatient hospital stay, which I want to do, but haven't done yet.    I was shocked at the TMJ thing too and mentioned I thought I had a tooth ache the past few days, NOPE low and behold I needed a stupid root canal.   I  have to take care of the tooth and go back.          So, no good treatment plan for me yet, sorry.


Sorry this ended up SO long, I think your topic is basically a lot of what I was thinking, so I thought I would explain my 'story' a bit here.    I have not been one to post too much on the ANA forum about my neck & head pain because I still believe my pain/situation was here somewhat prior to the surgery.   BUT, since I have been following lots on here about similar stories, I figured I need to share now my findings anyways.    

I DO believe the surgery positioning and vise and length may have an impact on these head & neck issues!   "My opinion"

Denise (MI)

[Janet]

The repair was not that big of deal. He just fixed, what had already been messed with. In other words, put things back better.  I had 2 out patient surgeries.  (The nerves are between your skin and your skull.)

On the rt, I had a scar revision. The nerves were cut and implanted, so they would not cause problems. He did a fat graft to line the indented area. This gave me 100% relief on the rt side. In my opinion, a work of art.

On the left, he separated the artery and the nerve. This helped and made my life manageable. He was hoping this would be enough, but the already damaged nerve still seemed to fire. (Not nearly as bad). I went back and he cut the nerve a year later. This gave me 80-90% relief.

Good luck.

Janet

[ombrerose4]

I think that when doctors mention the post op "headache" issue during the initial visit, it seems to be thought of as a minor issue. I know when I was told about headaches, I though to myself "what's the big deal about some headaches". Of course now 18 months post op, I know better   Like many of you, I too suffer daily cervical type headaches and facial pain that turns into headaches. I hope in the future doctors will take this issue more seriously and explain that these headaches can be chronic, daily interruptions in our day to day life. Although my headaches have lessened in number from 3-4 times a day to mostly 1x a day, the intensity and duration of the headaches are just as bad. Some seem to occur on and off all day long, with intense periods and milder periods, but eventualy they get to the point where I need to take pain relievers. I have been trying to hold off the meds as long as possible because they upset my stomach ( I have reflux issues), and I tend to get nauseous after taking meds. I use ibuprofen, have been put on many other meds but I find ibuprofen works better for me. I hope that one day I will be pain free, but in the meanwhile I try to take it one day at a time.

[Syl]

Mmccullen:

I still suffer from post-surgical headaches & find that a combination of my electric heating pad, topical meds & sometimes Tylenol have put me in control of my pain.

It has gotten better for me. I used to wake up just about every day with pain that began at the base of the head & developed into a debilitating headache. More often than not, my heating pad helps. I have gotten into the habit of applying heat to my neck for about an hour just before bedtime. I can now go for days, sometimes even weeks without a headache in the early hours of the morning.

This doesn't guarantee that I will remain pain free during the rest of my day. But these morning headaches have been my biggest challenge. Sometimes the pain is too intense and a bit much for my heating pad, and I end up taking Tylenol. I try to limit my Tylenol intake to no more than twice per week. Too much Tylenol can lead to rebound headaches.

I also keep topical meds handy. When I begin to get that weakness/tingling at the base of my head & I don't have my heating pad, I sometimes use these topical creams. Sometimes I get pain right where my surgery scar is. I apply the cream right on the scar. It burns, but really helps. The more I use the cream, the more effective it is. The key ingredient is capsicum. I've tried several creams and find that the most effective is Flanax. Most of these products have a potent odor, but that doesn't bother me anymore.

I hope this helps.

Syl

[Mei Mei]

My symptoms were exactly like yours.   Then I was sent to a nurse practitioner at Gtown Hospital in the Neuro Dept.   I also had two sessions of Cranio Sacral massage and ever since then had pins and needles in my left hand and arm.

What turned things around at long last was the Myofacial Release therapy.   I haven't had my nightly headaches and only one on Sunday when I was stressed out about my father in the hospital this week.   

Give this Myofacial Release Therapy a try.   It's the only thing of EVERYTHING I have tried.    Just google Myofacial Release Therapy and there is a spot on the  website for finding a qualified therapist in the area where  you live.   If you live in the Wash. DC area, just message me and I can give you more details.

It's incredible how many knots and bumps they have worked out of the side of my neck, shoulder and scalp.

Good luck with your treatment.
Mei Mei

[4cm in Pacific Northwest]

The key is trying to figure what causes or triggers the headaches.

For me these started around 2.5 years after surgery. I came to understand that the muscle (and possibly nerve) was growing into the titanium mesh plate  that was used to cover the craniotomy hole. Some surgeons use a calcium phosphate putty to prevent this but that too is controversial as there are studies documenting that the putty breaks down, with time, and can cause other problems. (It is very much a debated topic amongst the surgeons.)

I had my spouse message that area and actually pull the hair along the surgery incision scar up and away from the scalp… this seemed to work. When the headaches came on I would ask him to do this and it helped… the headaches disappearing quickly. (For those newbies with recent fresh scars from surgery do NOT do this... we did this 2 years after my surgery)

The funny thing is I recently had the Baha (hearing implant device) surgery. The new surgeon commented he could see the plate and screws when he was in there implanting the baha abutment. Coincidentally after this surgery- the headaches stopped. I am guessing he was manipulating the muscle when he placed in the BAHA abutment the muscle (by chance) was pulled away from the mesh -just enough. He also deadened the nerves in that area around the abutment so that too could have helped solve this problem.


Some days when I have some stress or tension these headaches can return (although not as bad now since the baha surgery)… I have a teenager daughter  … what can I say…  maybe the headaches have nothing to do with the AN… and this is a normal parenting thing for a mom…   

I have a heat pad that is the length of my spine. It is made of synthetic micro-suede and stuffed with couscous. I heat it in the microwave. I have another heat pad made of the same material that I place over my neck and area close to the scar and the base of the skull.

I lay in a relaxed position on the bed; flat on back with knees elevated under 2 pillows with one heat pad under the spine… and the other placed on my neck & shoulders at the base of the skull. The heat relaxes the muscles instantly. Once you have done 15 minutes of heat … try messaging around the skull base, the neck and the shoulder (best if you can get someone do it for you)

Try that and get back to us to let us know if that helped you- at all.

The key is to find “the source” (cause) of the headaches. 
This can range from:
* skull dust getting into the Dura during surgery when they initially make (drill) the hole in the skull,
* muscle tissue growing into (or catching on) the titanium mesh plate that covers the craniotomy hole,
* muscle scar tissue being overly tight

Trying different methods may help to narrow it down. Because you have already tried the Botox I am thinking that tight-scared muscle may not be it.  It could be one of the other two. It is a process of elimination- in attempts to find the cause.

DHM

[ombrerose4]

I'm curious- how do you determine that your muscles are the cause of your headaches? Are there specific tests that can show muscle involvement? I've had MRA's and MRI's and CT scans, what's next?

[Mei Mei]

Try Myofacial Release Therapy with a certified therapist.   No more headaches for me.  Still have pins and needles but have more sessions scheduled.   He's working on the facia and releasiing from the nerves.   It's fantastic!
MM