Recovery from meningioma surgery and effects of steroids

Just wondering about experiences anyone has had with euphoria after meningioma brain surgery. The dexadron (dexamethasone) made me talk manically, but I also had a calmness and feeling of serenity that I had never before experienced. It was like I was apart from humanity and feeling very blessed and grateful. It was like an out of body experience which lasted a few weeks. Any similar stories about the effects of these powerful steroids?

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I experienced significant mood swings, an increased sense of disconnection with humanity, and gained 80 pounds. I was on dexamethasone in various dosages for a year. I finally resolved to get off this EVIL (to me) drug, and have been off it for almost two months now. I think it's finally cleared my system and I'm beginning to get back my old energy level(s)...

No out of body experiences for me, but I sincerely wish you all the best (I never had surgery, my brain tumor was deemed inoperable because of location).

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Steroids were my worst enemy after 2 surgeries. I ate constantly, had no desire to sleep, me me me was all I thought about, hyper to the max, landed in the emergency twice because my body had reactions to going off steroids. After brain surgery we are set up to very high doses and our bodies become addicted quickly so we have to go off slowly when the time comes to stop. My surgeries did not cause me grief but steroids did.

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One of the best things we did was get my husband off steroids. They were terrible,and he was terrible while on them. Kathy, toms wife

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dexamethasone was horrible for me. I started feeling better when I was winged off of it. I only had to take it for a month after the brain tumor surgery. I instantly started feeling better when I was taken off of it. I think. that I may have had an allergic reaction to it also. I had an euphoria experience because I was so grateful to be alive. Yes we were blessed:)

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I was quite emotional and nauseous from decadron while doses were very high in the hospital. As I was weaned off it I was unable to sleep but had more energy than I have had in years. I have experienced euphoria but I am not sure how much of that was from the steroid and how much was from the removal of the very large meningioma. (Larger than a tennis ball in my right frontal lobe.) It has been 2 1/2 weeks since surgery. I feel fantastic and the emotional aspects of the steroid are pretty much gone. Good luck to you in your recovery!

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wow that was a big tumor! And you are communicating online. Sounds like you're doing great. My tumor was the size of a ping pong ball. The tumor took my sense of smell. Other than that I think I'm doing pretty good. Maybe a little depression?

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What symptons did you have with your meningioma? Did they go away after the surgery and recovery? My surgery is scheduled for July and I am hoping these constant headaches go away! How long were you off work?

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In my case, the symptom that brought me to the doctor was smudgy vision and visual field loss in my left eye. In retrospect, I was constantly tired and sort of depressed before the surgery but I never imagined it was from a brain tumor. I did occasionally get migraines. Since surgery my eye sight is back to normal. I have so much more energy and my mood is better. I feel like I did 15 years ago. The only problem I have now is tightness in my jaw. I have what's called limited mouth opening. This may be from the surgery since the incision started at my left ear and it's my left jaw with the issue. Or it could just be stress. I just started physical therapy for it and it's already improving. I did get just one bad headache just the other day but the PT said it was probably from tension in my neck due to my jaw. I'm a stay at home mom but if I had a desk job I could have returned after 3 weeks. I did get tired the first few weeks(after the steroids wore off). I guess it depends how demanding the job is. It's now been 12 weeks and I feel fantastic. My neurosurgeon told me I could jump out of a plane now if I want. I think I'll stick to tennis! :) good luck to you!

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Steroids are evil but allow people to live with much less tumour related disability. Never quit without medical advice because the body stops making the natural steroid it needs when faced with these high doses. However the natural dose when your body is not under the stress of surgery or vomiting or fever is only 1 mg per day of dex. Dex takes about three days to clear the system so you may feel fine from the tumour on day 1or 2 and have neuro symtoms on day three after a drop.

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Angelmiller,

The Neurosurgeon gradually took me off the steroids when the symptoms from the steroids were worse than the seizure that never happened. The VNA nurse noticed my hands were shaking, I would get upset more easily, and when I did the shaking increased. When the shaking increased, the dose of steroid was gradually reduced by the doctor until I stopped taking them. There were written instructions for the steroid reduction.

Communicate with the Neurosurgeon or doctor regarding symptoms.

Steven

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I haven't been to my pre-op appointment yet. I'm getting my list of questions together. Does everyone get put on steroids after surgery?

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Yes, steroids help with the swelling.

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Yes. I've worked on neurosurgery. They are almost universal post op, as are anti epileptics. What varies is how fast the are stopped

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anti-epileptics? I don't remember them.

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My symptoms were gradual loss of smell, tiredness and a pain in my head when I would stand and start walking. My surgery was in June and I went back to work in September. That was probably too soon but financially I had to. And was going to physical therapy after work. That was a lot. So my advice is if you can, take plenty of time before you go back to work. It was exhausting for me. And yes I had to take steroids and anti-seizure medicine right before surgery and for a month after surgery. With the technology today , you should do fine. Give yourself plenty of time to heal.

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I was not put on steroids after my craniotomy. I had a large tumor removed from my brain stem. I made myself get up and walk in the hospital every day to prevent any CSF leaks which are very common after the type of surgical approach they used. You'll most likely have your hospital bed upright too. I started a mild steroid about a month later for some neuralgia but was only on it for about 3 months with no side effects at all. Basically every situation is different, the steroids help with intra-cranial pressure (ICP) so if that's elevated you'll most likely be on a steroid.

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So wonderful you were not put on steroids. My Dr told me steroids are/were a major part of the after brain surgery life. I added 'were' because it's very possible after all the changes in surgeries over 10 years things have changed.

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they only gave me 2 days for the steroids. They did a MRI the night after my surgery and said there was no swelling so I didnt need to continue taking them.

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I am 2 1/2 weeks post surgery. All went well. A golf ball size tumor was removed from behind my right eye. I was not given either steroids or anti-seizure meds. The right side of my face swelled like a balloon and I had a black eye and then bruises came out on my chin. All of the swelling is gone now except for under my right eye and some bruising is still noticeable under my eye. The staples were removed Monday. I still get tired after being up for awhile but have been working on building up my stamina. I plan on going back to work Monday which will be one day short of 3 weeks out. I have an office job so am hoping it goes well.

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CJholwell
Sounds like your doing well. It takes awhile to get all your strength back. You sound really good and optimistic. Determination has a lot to do with it. And prayer. I went back to work about 12 weeks after meningioma surgery.My job requires standing all day. But I made it! Remember to pace yourself

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