Persistent Headaches - After Meningioma Removal

[mrsmommy]

Hello -

I had a meningioma removed from the front left (left forehead) area of my brain in September of last year. I had a post-op infection and had to have the bone plate removed in a 2nd surgery in November and went through an antibiotic regimen. The plate is still missing, and I have to wear a helmet when active. I have had multiple MRIs and CT scans, which show no recurrance of the meningioma, and no abnormalities. They all come back clear. My neurologist says that he thinks the headaches are tension headaches, and may be stress of trauma related seeing as they start at the base of my incision site. Gabapentin was attempted, but failed to help at all.

Since my 2nd brain surgery I have had a persistent headache. 2 months, and no relief. I have tried hot baths, hot and cold compresses, sleeping it off, OTCs, herbs, massage, eliminating certain foods from my diet, and I eliminated caffiene from my diet 5 months ago... and my PCP has recently upped my pain medication to 12 10/325 Vicodin a day - yes 12. I expressed to my doctor that while it helps with the pain somewhat, I do not accept this as a long term pain solution. It does not make the pain managable - it just takes the edge off. Especially since there is nothing to prevent these headaches. My PCP attempted to switch me to Dilaudid, but that did not do anything to quell the pain. So I am back on 2 Vicodin every 4 hours.

My question is this - is there anything more that I should discuss with my doctor? Any treatments that can be looked into? Any preventative measures that I should be taking? I need to know what I should be telling my doctor to get some relief.

Please help. My headaches are so bad that my vision blurs, I can't concentrate, and alot of times I have to sit down because the pain gets unbearable when standing. I literally feel like I am going to fall over.

Thank you,
Mrs. Mommy

[Mcnickyo]

I have no suggestions. The hearing loss is on a decline but the neurosurgeon is more concerned w/anneurysms. I have an ENT appointment in late August. End of this week a head and neck ct scan.
What docs have u seen?
I am so thankful for my GP being willing to treat pain.
Nicky

[Runfola]

Rosalie I am having same sytoms.

[Runfola]

Iam having same problems any answers

[rumpled]

Sorry... I volunteer at a museum and in doing so, it makes me have huge pain and I sleep a lot. So I am not on the computer.

It is like the spoon thing, I can do one thing, or another, but not both... it really bites that life is choices when you want to do it all!

No, I am not pain free... I have days when it is "less-ish" but then I go crazy thinking WOW I can do stuff and totally blow it and pay even more... I live an every-other-day life.

I am not always happy though...

[Mcnickyo]

Hi. Looking for a word of encouregment, if u might have an extra to spare. Hope today went well for u.
Nicky

[Mcnickyo]

Hi. I am feeling hopeless and in headache and fibromyalgia pain. A little relief from pain meds. You seem to have a positive attitude, I'm jealous. Do u have pain free days?
Facing anneurysm surgery...there is no way to imagine I won't have post op issues plus pain. I think my Meningioma is causing hearing and vision problems. Fibromyalgia is the pits. I feel like I have the aches and pains of the flu, skin sensative. I just can't deal.

[Mcnickyo]

Thank you SO much. I really feel ur support and appreciate you words.
Nicky

[rumpled]

Dang...
I don't know what to say...
Pain is very draining so I feel really bad for you... I wish I had a solution or advice worth something more than nothing to give you.

[Mcnickyo]

To follow up on ur comment about trying non medical means of pain relief, headache pain in particular. Over the years I have tried bio feedback, several chiropractors, acupuncture from 3 sep practioner , physical therapy 6 times- six diff people over time, each tome 6 months at least . Yoga, 2tmj dentists with mouth guards etc...each time 6-9 months of trying. At end both dentists said my tmj was fixed and why I still have headaches a mystery. Numerous diff massage therapists. Some helped at the time of the massage but no lasting help. Meditation, swimming, lost and gained weight. Sure I left off some things ( 3 headache clinics ) but I think I have met the challenge of chronic daily headaches , and have lost. Nicky

[rumpled]

"In my humble opinion".

[Mcnickyo]

What is IMHO? Thnx

[Mcnickyo]

What is IMHO? Thnx

[rumpled]

It may be that you need to look. IMHO, for another source of relief.  I go for anything non-medical before I hit a pill.  Heat packs or ice packs, positions of head to drain blood... Massage, acupuncture or whatever to experiment and see if any of those help.  

Headaches really are draining.

[Mcnickyo]

It's been so long since ur post. I hope your headaches are better. I am 40+ yrs of chronic headaches, no days off. I took a med holiday many years ago to deal with people thinking I had rebounds. After being off meds for a couple of months my headaches were sadly, as present as ever and for me, rebound was not much of an issue.
Best wishes
Nicky

[Mcnickyo]

It's been so long since ur post. I hope your headaches are better. I am 40+ yrs of chronic headaches, no days off. I took a med holiday many years ago to deal with people thinking I had rebounds. After being off meds for a couple of months my headaches were sadly, as present as ever and for me, rebound was not much of an issue.
Best wishes
Nicky

[rumpled]

After a while, narcotics can give you rebound headaches.
So, the pain med can give you more headaches.
I was in a lot of pain after a different kind of surgery, and was bed-bound until I started acupuncture. So maybe you can consider some alternatives to wean off, and see what happens.
You have done a lot to change diet, etc. and so your body is obviously unhappy at something... I feel for you - headaches bite.