My wife had a surgery for a brain aneurysm 26 months ago and she is still experiencing these symptoms, does anyone have any advice? What type of medications are helping?
Burning and pain on top of head
Pain in ears and jaws
Burning in feet and ankles
Severe debilitating headaches every 2 weeks
Pressure on temples of head
Hey Christos,
Welcome to Ben’s Friends.
Neurosurgery can be a nasty beast. I’m often saying ‘…two people can have exactly the same surgery but have vastly differing outcomes…’. The Dr’s can only give approximates on outcomes or best case scenarios because in all honesty every brain is very individual.
Personally my belief is that these symptoms could have a number of causes. Some could be related to the neurosurgery, some may not. BUT I ain’t no neurosurgeon nor neurologist and how one surgery can affect one person in a particular way compared to another person is often difficult even for them to explain. Post neurosurgery my symptoms were a mess. I have some temperature issues but nothing ‘burning’ as such. There are a few other conditions that have some similar symptoms like burning feet or ear/jaw pain that maybe worth investigating in regards to how other people manage symptoms and alternative treatments.
Now the ‘Pain in ears and jaws’, the ‘Severe debilitating headaches every 2 weeks’ and the ‘Pressure on temples of head’ are all VERY common post neurosurgery. I’m years on from my last operation and I still have symptoms 8yrs on (with no answers).
If a Dr has suggested a treatment I’ve given it a go everything from acupuncture to reflexology to hydrotherapy to Botox to a TENS machine. I’ve varied my diet, my sleep, my activity but all to no avail.
As for medications, we try not to give advice on meds. We are unaware of your wife’s situation, her health, other medications she’s tried or is presently on and many other factors that could/would influence which meds may help. Some meds interact with each other and can become lethal in combination. This is why a Dr needs to make such assessments. I’ve tried all sorts of meds uppers/downers, heart meds, epilepsy meds etc but none of them have been my key.
I’ve attending ‘Pain management clinics’, but I’ve already tried their suggestions and if one more person tells me ‘You just need to learn to relax…’ I’m not a violent person but I might be tempted to punch them in the end of the nose. Stress does play a role, that’s undeniable, but telling me to ‘Just relax’ is telling me the obvious. But in saying all of this do not write off any treatment, because you never know, that one treatment might be that ‘key’ your wife’s been searching for.
I’m not going to tell you it will all settle. Some things may settle but then some things may not. You and your wife will learn differing coping skills and how best to manage for you both because this doesn’t just affect your wife, it affects you too. And It is NOT easy for anybody involved, we know this because we live it too.
Merl from the Moderator Support Team
Did they say it was inflammation or brain adjusting? Since I am sensitive to many meds, I sometimes use Arnica topically. Also, Epsom Salts (Magnesium Sulfate) foot baths for 15 mins or longer. Did they say she might be clinching her jaws because of head pain? I had a sis that did that.
Best,
G
I have just recovered from this wonderful coronavirus. It’s has taken me since January of this year 9 months. My wife and I caught it on our Christmas cruise. This is why it’s been a while since I have been to this site.
The one thing that I can tell you is that at any time you can get a migraine headache, I had my cranny in 2008 I had a blood clot at the base of my brain and had 3 anny’s clipped.
Everyone brain is different, never ask about drugs to try, you could be allergic to one and if you borrow one from someone it could kill you.
I am allergic to a whole lot of drugs, which made treating my virus very difficult. I still get a horrible headache 12 years later, my doctor explained it to me that even though they cut my skull in half, sometimes you will have a couple of minor nerves grow back and they will set off a horrible headache.
On your feet burning this could be a problem in your lower spinal cord. Take a look back at the number of CT’S,MRI’S MYLOGRAM’S that you have had if any. The dye they used in the old Scans became a problem for a lot of people including my self. I now have a sever case of Arachnoiditis, we’re all of your nerves are bundled together at the base of your spin. This is slowly paralyzing me, I am now stuck in a wheelchair for the rest of my life.
So talk to your doctor and bring up everything you can think of, also ask about what I am suffering from.
This is the best advice that I can give to you.
God bless you and stay safe. The virus is tough for all of us to get rid of, remember our immune systems are not the best.
Our bodies were pumped full of steroids after our surgeries to bring down the swelling.
So to everyone I am happy that I can contribute once again, this is a great site.
Ray Dempsey
I have had terrible nerve pain. No medication for it.
so I would go with natural way which God provides it in the earth.
I decided to realize the power of fruits and vegetables. I eats one bowl watermelon every morning.
Juicing and blending are good choice to take. These machines are not so expensive anymore.
Now, my nerve pain from high thigh to toe, it was disappeared, I still have a pain in my head, but try no to worry since I am taking the right food with guidance from doc because sometimes the nerve is starting to get healed. (my aneurysm hit my brain stem which made me like veggie 2 years ago). My right eyes is getting more open now (not looping). I start to do more my activities. I have to accept that my weight gains 36 points for my situation, but remember we could start to decrease my weight, but we could not behind for other things
Try to think positive and stay calm and in peace.
Hope, the best!
I nave Been for the last 3 year sorry for my trespod it take me a while to write on my own tell your wife it will get better with time am am getting there 
sorry folks about my spell as got yous phone love to all .
Welcome christos! We are glad you found us. It’s awe inspiring what are caregivers are willing to do, I applaud you! As Merl said, we are not doctors so suggesting medications isn’t wise. Ray points it out well, allergies to meds, even OTC’s can be a horrible thing.
Did your wife have a craniotomy or coiling? The different procedures can cause some different reactions, and a lot of similar ones. Did she rupture? This too can cause different issues than an unruptured aneurysm that was stabilized. Was she in ICU for a long time? Laying in a bed for weeks can cause some issues. Is she allergic to the dye? Do her symptoms worsen after an MRA or CTA with dye?
By this time, she probably has a Neurologist. What does the Neurologist say?
In all of this, make sure she increases her water and protein intake.
Ray, I was very interested in your explanation of Arachnoiditis as I have had surgery for Cauda Equina Syndrome. I don’t know anything about this doctor in CA, but maybe it can help you. https://static1.squarespace.com/static/54d50ceee4b05797b34869cf/t/5c5da41b15fcc0bf5f1eba59/1549640736378/Arachnoiditis+Handbook++5th+Edition+.pdf
Moltroub,
Thanh you for the link to this report. It’s very helpful. My neurosurgeon is very well versed in Arachnoiditis, but this report I will send to him. He knows that I have this problem is very advanced in my body.
I am now confined to a wheelchair, I have lost my left leg and in the right one I have just 2 nerves left working.
The worst part is that I am about one year from having to watching my bladder toes if I am starting to leak.
The reason I brought this problem up is this that a lot of people could have this and not know it.
The best test to have is an EMG, because this is going to tell you were your nerves are. The doctor can talk you through the whole test and let you know which nerves are dead and which ones are begin to die.
Then have the MRI, so that you can compare both of them.
Right now to control the pain, I take 2 80mg OxyContin 4 30mg morphine 3 200mg Lyric a day.
To be able to fall asleep I smoke about 1/2 of a joint of marijuana every night. The medical marijuana is so potent it will put me out in about a half hour. That’s the only way I can get 3 to 4 hours of sleep.
Everyone should look at there systems and print this information you just sent me, because there are not that many doctors that know anything about this problem.
Thanks,
Ray Dempsey
Glad you have a good Neurologist, Ray. It’s very important isn’t it? Thanks for the heads up for all of us. I wish you all the best. With Cauda Equina Syndrome, I had lost use of my bowels. I had no reflexes from the waist down. So be mindful on your symptoms and try to do as much stretching as possible to get the fluid moving.
Moltroub,
I just wanted everyone to know what this can do to you. I know that a lot of people who are visiting this site looking for answers to many different problems, and they know nothing of this sever nerve damage and the effects it has on your life.
Not everyone lives in or near a large city we’re there is excellent medical care. The biggest problem with Arachnoiditis, is that no one knew anything about it, until 3 to 4 years ago. I started studying about it 3 year’s ago and their was nothing out there in the medical community.
The first study I read about it came from a report out of England. They had 3 different doctors who were studying a case of a woman that had all of the symptoms that I am going through. They all thought the lady was going nuts, because nobody could explain to her why she was in so much pain.
As I said that I have about a year before I will not get out of this chair. The other problem is the pain that you are in, everyone needs to understand that as your muscle starts to deteriorate the pain is almost unbearable. My left leg quad muscle is in so much pain because the muscle is dying. On my right leg the nerve spikes, are just unbearable. I am allergic to so many drugs that the only relief I get is from a heavy dose of steroids, which is not that great on the rest of your body.
So to everyone out here on this site, please stay safe, you don’t want to catch this virus because all of our bodies are compromised by the amount of steroids that were used to reduce the swelling on our brains.
I am still having problems recovering from the virus and this is now 10 months of recovering from it.
If anyone has any questions about the virus or Arachnoiditis please post your questions and I will try to answer them. I will never tell anyone what drugs to take because that advice is deadly to try, you always need to ask your doctor, and if your doctor doesn’t know anything about what we are talking about you need to find one who knows what you are asking about.
Ray Dempsey
It sounds like you are a good support. Immediately after the craniotomy, I had a variety of different pains. I am now two years out and the pains have changed.
I like to use topical analgesic to reduce jaw and head pain. I like the OTC lidocaine spray or cream-it’s not pretty, but I’ve massaged lidocaine cream into my scalp. i alternate between lidocaine and voltaran for my jaw pain and use ice/heat along with pressure from wrapping my head or jaw.
I’ve also become aware hydration plays a huge roll in headaches. When I was pregnant with my daughter, I had Braxton Hicks contractions and was recommended to drink a gallon of water before seeking medical attention. I learned that water consumption improved multiple my pain issues.
It’s great to see you posting again! Thanks for the wonderful information.