Headaches just starting -- 8 months post-op

[POH_]

I had my surgery last June. Retrosigmoid, 3 cm tumor. Everything went great--I lost hearing on that side, but I had very little pain except for neck soreness, and I was riding a bike in just a month.

About a month ago, I started getting headaches that seem to start at the incision and then spread to the rest of my head. Unlike other headaches, they feel "physical" -- as if there were a buildup of pressure at that point. They also feel vaguely muscular, and massaging my neck and the incision tends to provide some relief.

They can get pretty painful, but I have found that 1 advil takes care of 90%, and 2 advil can tackle any of them. But what worries me is that they are getting more frequent. By now, I think that I get them 2-3 times a week.

Did anyone have a similar experience? Can I expect them to get more painful and/or frequent? I told my ENT surgeon and he said he's not worried as long as an advil takes care of them. But he said to speak to my neurosurgeon if they get much worse.

Thoughts? Thanks.

[CHD63]

POH ...... Welcome to this forum!

I did not have the problem you are describing, but others have so someone will respond to this, I know.  If it were me, I would contact the neurosurgeon's office just to get their take on it.  After all, that's what you (or your insurance company) paid the big bucks for .....  This is part of the follow-up care.  The fact that it began 7 months post-op is a bit unusual.  Not to scare you, but I would want to know it is not a build-up of fluid ..... which, of course, can be treated if it is.

Best wishes and let us know what you find out.

Clarice

[bell]

I always had headaches after surgery, but by 1 year they were worse. Went to Neurologist and tried several drugs then Botox. Keep reading the forum and you should find similarities with your stories. I think everyone is different and many things work for some and not others.
If it does continue to get worse don't waste time with a Physician see an Neurologist that specializes in headaches.
Good Luck,
Bell

[Nickittynic]

Mine started around 3 months postop. They also frequently feel like pressure but more in like my temples so not really the same as yours. I'd agree with your dr that if the advil works just keep going with that for now. Hopefully the headaches don't get worse. I also agree with Bell that if the headaches get worse and you want to see another dr about them a neurologist is a good choice!

[Mei Mei]

I went to a neurologist and he kept giving me drugs last summer:   two months on Verapamil, one month on Lyrica, and one month on Lithium.   There were so many side effects and my hands shook with the Lithium so he cut the dose in half and my hands still shook.    I now take Indomethecin three times a day but have to take Prilosec because it is so hard on the stomache.   Can't take the drugs long term.

Am now getting Myofacial Release therapy.   The first two sessions were incredible and I fell asleep.   Now that he broke up the entrapment with the adhesions, he is working more on  releasing the C2 and Occipital entrapment but now I don't get sleepy any more but more numb and horrible headaches at night.   It is a difficult process to get through.

Mei Mei

[Patti]

cranial-sacral therapy helps me a lot. i went once a week for a few months and now go every 5 weeks for mainainence.  insurance covers mine because my therapist is a doctor and not a massage therapist.  he explained the whole brain membrane thing to me.  it makes sense.  google it to learn more.  good luck!

[Mei Mei]

I did cranio sacral therapy and after the first visit I had pins and needles all the way down my arm.   It still hasn't gone away.   I went twice and I stopped.   Maybe I should go back.   I am now doing myaofacial relelase therapy and it is helping a lot.
Sincerely,
Mei Mei

[Sunflowers]

Hi, I had my surgery one year ago tomorrow...2.5 cm,translab method. Recovery was also great  and I was back at work full time in September. My headaches started in the fall, I live in Ontario and blamed it on the changing weather...I have since realized that my head really does not like -20!! I have missed work a few days a month..but I am noticing that the headaches are more frequent, for the most part I can function with a couple of advil and tylenol...but I do tend to have more pain when the barometric pressure changes quickly. I also have dizziness and a strong salt taste in my mouth and the ringing in my deaf ear gets louder as well. I am staying positive,trying not to get frustrated, because the healing process can take up to a couple of years especially when nerves are involved. My left eye still does not tear,but I feel alot of twitching on the surgery side,which hopefully means healing is still on going. I am due for my MRI in May at which point I will talk with the doc about this. So I guess my only thought about this is to stay positive and be patient and listen to your body...massage therapy sounds like a great option...and if I find out more,I will definitely post it!!

[Tod]

POH,

I didn't think I had anything to say about this topic until I started updating my Deficit and Progress List for next week's MRI and neuro consult. This will be 14 months post and the last one was at eight months. In making up the update, I realized that I had been developing headaches in months seven and eight. Apparently they went away because I clearly haven't thought of them for awhile.

Mine were similar to what you describe and never took more than two or three acetaminophen to knock out (or at least knock down). I offer no explanation or advice, other than to stay in contact with your docs. If you are concerned, call or email your neurosurgeon and ask if you should come in for an appointment.

-Tod

[yardtick]

Sunflowers,

Welcome!!  I too am from Ontario, Hamilton/Stoney Creek to be exact.  I too suffer from headaches and facial pain.  Yesterday and today haven't been very good for me because of the changing barometric pressure.  Where did you have your surgery and who is your doctor.  I see Dr Rutka at the Toronto General but he isn't the surgeon who operated on me.  I had my surgery done at St Joseph's in Hamilton.  Mine is a rather long story with a few minor events that resulted in nerve damage.  I have suffered from migraines since I was about 12 or 13 and weather has always been a contributing factor.  When my headaches got more frequent and stronger prior to surgery I never thought in a million years I had a brain tumour.  Did you suffer from headaches prior to your surgery? There are medications that may help with the headaches, you may want to see your family doctor and get him/her to refer you to a neurologist.

I wish you much luck, I wish you didn't have to find us, but you will find this is a very informative place. Many of us are not doctors but we do have a few, I feel our collective experience is knowledge and strength.

Anne Marie

[Sunflowers]

Hi Anne Marie,

Yes I was a headache sufferer prior to surgery..more like migraines...these new headaches are different. I had my surgery at sunnybrook in Toronto,even though I am from the Ottawa area. I had much more faith with the surgeons in Toronto and they did an excellent job. I guess because my recovery was so wonderful...I was hoping that I was over the worse of it. It's abit like a rollercoster ride when it comes to the pain and dealing with it as well as the dizzy spells and horrible salt taste. I am trying to maintain a positive attitude, I do understand that I won't ever be the same as before when it comes to energy levels etc, but I do feel that I should be having more good days than bad. My spouse is wonderful and very supportive, but I do know that he worries, along with my kids and mum...I would just like to have a better understanding of why these symptoms just kind of appear...

I am grateful for this forum, it is comforting to know that others are also dealing and sharing there experiences. I consider myself quite lucky to be able to work fulltime and lead a somewhat normal lifestyle. It just gets exhausting at times when the bad days come. I am hoping when I go for my follow up that the doc can also give me more insight and I will be on here alot as well as it is very helpful.

Thank you for the welcome
Cheryl

[4cm in Pacific Northwest]

I posted this on another headache thread. It may be applicable
http://www.anausa.org/smf/index.php?topic=14985.msg979725603#msg979725603

DHM