since i had my bleed and surgery in april 2014 i have lost ALL sense of smell, i can taste very little and i'm having serious sinus issues. sinus pain. the doctors tell me that it's all because of weather changes. now i do agree with that to a point. that yes, i have more intense sinus pain when the weather does change. however all the other symptoms are not caused by the weather.
does anyone else suffer from this and can you tell me what you've been told or if you've healed from it or not?
I too have had horrible sinus issues this fall. My bLeed and surgery were in July. I also get temporal swelling and pain but it usually goes away with rest and Motrin. Feels like a face lift gone bad on that side some days
Hi Marcii, I had my craniotomy on 7-1-10 and still have sinus issues, my nose constantly drains and I have constant headaches. My neurologist said that if the symptoms I have didn't go away after a year that I would most likely have them the rest of my life. I moved from northeast Ohio to Florida, thinking that the massive changes in the weather in Ohio were making it worse. I have to say that being in southwest Florida has helped some it wasn't the cure all I was hoping for. I guess it could be a hell of a lot worse for me, I just take it a day at a time. Good luck to you, I hope you find some relief!
Yes yes yes! So glad you mentioned this. I had my SAH and clipping last year. My sense of smell was gone, though somehow I could still taste. I also had an actual “click-click” sound in my sinuses which freaked me out, and some liquid deep in one ear which sounded like the ocean! I was checked to make sure nothing serious and those issues have since resolved. Even my sense of smell has returned somewhat. BUT - starting a month ago I have sinus “burning” sensation and…this is a weird one…sometimes I’ll smell something ordinary (like shampoo) and for some reason it smells completely rancid to me (but no one else) AND it also feels like I swallowed a cup of it! It’s like I can actually taste it and the sensation doesn’t go away for hours. Huh??
I had sinus/allergy issues before my bleed in 2012. Now if I get a sinus infection it is awful. My surgeon said I would feel things that happened in my head more. I have been very blessed not to have had too many headaches but ouch when the weather changes. Good thoughts to you that a dr can prescribe something or you.
I had my operation in 2003. Over time I totally lost my sense of smell. In the last year I'm beginning to smell things again and it always shocks me. I thought I started having allergies too but that was not true.
I developed something called meineres disease. It causes my ears to feel like they are stuffed or if you have water in your ears. It makes hearing a little difficult. If the stuffiness lasts long enough, I get vertigo. They don't know how to treat it excpet to stay away from sale and drink lots of water.
I had issues with taste and smell, My surgery was in May 2013, and I did not have this issue with tast untill around July, anything slightly process had a chemical taste, I ended up losing weight at that time, it was hard to eat anything unless it was meat made with little seasoning, or vegetables and fruit. It got better with time.
I'm the caregiver for Eve, the survivor of a ruptured ba (level 5) back in 2001 . She "died" several times in the first few days thereafter. She spent Weeks in a coma and months in rehab.
She lost much of her sensory awareness and physical self-awareness Eve couldn't tell when she was cold, or her nose was running, nor could she feel the urge "to go". Needless to say, she had minimal sense of smell or taste. The ba also affected her vision--causing her to be legally blind in one eye. She could not sense this--or communicate to me. I found out by taking Eve to an eye doctor a year or so later just to have her checked out.
We worked hard at restoring self awareness and ability to sense. She took time to savor her food. She smelled it before putting it in her mouth, chewed slowly, concentrated on what she was eating/drinking. (The ba left her with a paralyzed swallowing mechanishm for several months, so she has always had to pay attention to how she eats and drinks at meal time)
Eve regained some of her sensibility. The recognition of the urge "to go" came back --but maybe 30% weaker than pre-ba. We corrected her vision with glasses (she passed her driver's test--yes she is a miracle and she's also 70 now so....)
Eve still complains about her minimal ability to taste and smell -- but amazingly chocolate tastes really good to her.
Though she suffered from bad sinus problems before, she has had none since the ba. Nor has she ever had another headache....since the awful one that came pretty close to killing her.
I take pycnogenol it is natural. I do not do synthetic drugs. I also use magnesium oil or gel daily it helps to get the pain under control. I drink a gallon of water a day as water is so important for the brain. Our brains are 85% water and our bodies are 75%...water is very important.
At period time, actually right before it, I always get much worse, alot of it is hormones as well and seeing as our hormones are located in our brains...the endocrine system consisting of the Hypothalamus, pineal gland,Pituitary gland all part of the endocrine system and in our brains, one could surmise that if the brain has had trauma then that system can be out of whack.
I personally had a stroke after my surgery and the part of my brain that runs a bulk of the endocrine system died, once it is dead it cannot come back, the body/brain must reroute itself and that takes time, no one knows how long. So I take it one day at a time and help to heal myself.
If you read and like to help yourself since the Drs are at such a loss or do not want to learn more than they feel they need...(remember they call it a practice for a reason) plus the brain is still such an unknown mystery.
I recommend "The magnesium miracle" by Dr. Carolyn Dean
"Water Cures, drugs kill" and" Your not sick, your thirsty" or any book by Dr. F. Batmanghelidj
He also has a site... WaterCure.com
I wish you all much luck on your journey. It is sad that we are left to fend for ourselves and cannot get many answers but we are blessed and there is much out there if you are willing to look and learn. It is a journey we must face alone at times but the upside is we wake up each day and are alive. So be grateful for all that you have and keep a positive attitide. Many blessings to all!!!!!!
Cause of the operation, back in 03' lost sense of smell and to this day haven't regained. Sorry to hear your situation. original doctor told me that in 2 months will able to small. a brain surgent didn't have a clue.
Hi Marci,
I had my ruptured Annie on October 6, 2012. Since then I have sinus problems but only on the side of my head that was not operated on. I have always had sinus problems, I live in West Texas, but now when they are acting up my left eye is the only one that tears and my left side becomes stuffed up and my pain is only on that side. I know this sounds bizarre but that is what happens. I recently had problems and it was only on the left side. My taste sense was affected also as I had no desire to eat for most of the first year after. And I was nauseas most of the time. It would wash over me and make me feel like I was going to throw up. I have no major disabilities so it is not much to deal with.
Octobersix
Since the surgery, I have smell hallucinations, where I smell smoke when no one else does, or smell horrid things that no one else can. My neurologist says it is a sign of temporal lobe scarring. Wish I smelled roses or lilacs, but the smells are always noxious.
There is a more important issue. Those who have a draining nose after brain surgery should contact their surgeon. This can be a sign of a cerebrospinal fluid leak. This is important to diagnose, because meningitis is a possibility when the seal for this fluid has been broken.
This is from Johns Hopkins' web site:
Cerebrospinal fluid (CSF) is a watery fluid that circulates through the brain’s ventricles (cavities or hollow spaces) and around the surface of the brain and spinal cord. A CSF leak is a condition that occurs when the CSF leaks through a defect in the dura or the skull and out through the nose or ear.....
When a CSF leak occurs, it may cause any or all of the following symptoms:
headache
nasal drainage
meningitis
visual disturbances
tinnitus
Please have it checked out, because surgery is recommended due to the risks. My dura had tears in it from the first surgery and they had to use something called 'durafoam' which is a sealant to close these tears in the second surgery. Be careful out there...
jennifer, thanks for your reply, i had a rupture anny in april 2014. i think it was called cerebral rupture, SAH subarachnoid hemorrhage HCC. they also put in a permanent shunt.
sounds like we're have a few of the same issues. phantom smells. although i have NO ability to smell ANYTHING at all, i get this weird smell in my nose. i can't explain what it is but it's a bad smell for sure. it reminds me of what stink bugs smelled like. i too can taste very little. mostly sweet things but savory things are hard to taste at all.
did you sense of smell ever come back?
thank you again~
marcii Jennifer said:
Yes yes yes! So glad you mentioned this. I had my SAH and clipping last year. My sense of smell was gone, though somehow I could still taste. I also had an actual "click-click" sound in my sinuses which freaked me out, and some liquid deep in one ear which sounded like the ocean! I was checked to make sure nothing serious and those issues have since resolved. Even my sense of smell has returned somewhat. BUT - starting a month ago I have sinus "burning" sensation and...this is a weird one...sometimes I'll smell something ordinary (like shampoo) and for some reason it smells completely rancid to me (but no one else) AND it also feels like I swallowed a cup of it! It's like I can actually taste it and the sensation doesn't go away for hours. Huh??
thank you for sharing Eve's story. i at first had to scroll past it for i couldn't face reading it. it was too much too soon for me to face since i am only six months out since my rupture and am still fearful of not waking up. but then i had to go back and read it out of respect for her. she has a right to have her story heard for although we've all suffered from aneurysms, it sounds as if we are much more fortunate than she.
God bless her and God bless you for helping her <3
marcii Eve Kasper said:
I'm the caregiver for Eve, the survivor of a ruptured ba (level 5) back in 2001 . She "died" several times in the first few days thereafter. She spent Weeks in a coma and months in rehab.
She lost much of her sensory awareness and physical self-awareness Eve couldn't tell when she was cold, or her nose was running, nor could she feel the urge "to go". Needless to say, she had minimal sense of smell or taste. The ba also affected her vision--causing her to be legally blind in one eye. She could not sense this--or communicate to me. I found out by taking Eve to an eye doctor a year or so later just to have her checked out.
We worked hard at restoring self awareness and ability to sense. She took time to savor her food. She smelled it before putting it in her mouth, chewed slowly, concentrated on what she was eating/drinking. (The ba left her with a paralyzed swallowing mechanishm for several months, so she has always had to pay attention to how she eats and drinks at meal time)
Eve regained some of her sensibility. The recognition of the urge "to go" came back --but maybe 30% weaker than pre-ba. We corrected her vision with glasses (she passed her driver's test--yes she is a miracle and she's also 70 now so....)
Eve still complains about her minimal ability to taste and smell -- but amazingly chocolate tastes really good to her.
Though she suffered from bad sinus problems before, she has had none since the ba. Nor has she ever had another headache....since the awful one that came pretty close to killing her.
thank you so very much! i appreciate all your advice about being your own advocate. when i was a child i had cancer and it seemed the doctors worked so hard for me. but as an adult it's quite a different story.
funny, i had a doctor tell me that i was in a sense imagining much of this, that it was all in my head. i laughed out loud and said "now you're getting it! because it is all in my head! now fix it!" hahahah
Mechell said:
I take pycnogenol it is natural. I do not do synthetic drugs. I also use magnesium oil or gel daily it helps to get the pain under control. I drink a gallon of water a day as water is so important for the brain. Our brains are 85% water and our bodies are 75%...water is very important.
At period time, actually right before it, I always get much worse, alot of it is hormones as well and seeing as our hormones are located in our brains...the endocrine system consisting of the Hypothalamus, pineal gland,Pituitary gland all part of the endocrine system and in our brains, one could surmise that if the brain has had trauma then that system can be out of whack.
I personally had a stroke after my surgery and the part of my brain that runs a bulk of the endocrine system died, once it is dead it cannot come back, the body/brain must reroute itself and that takes time, no one knows how long. So I take it one day at a time and help to heal myself.
If you read and like to help yourself since the Drs are at such a loss or do not want to learn more than they feel they need...(remember they call it a practice for a reason) plus the brain is still such an unknown mystery.
I recommend "The magnesium miracle" by Dr. Carolyn Dean
"Water Cures, drugs kill" and" Your not sick, your thirsty" or any book by Dr. F. Batmanghelidj
He also has a site... WaterCure.com
I wish you all much luck on your journey. It is sad that we are left to fend for ourselves and cannot get many answers but we are blessed and there is much out there if you are willing to look and learn. It is a journey we must face alone at times but the upside is we wake up each day and are alive. So be grateful for all that you have and keep a positive attitide. Many blessings to all!!!!!!
Thanks for your thoughtful comments Marcii. I hope you find answers to your questions and solutions to your medical challenges soon. The idea behind my comment was not so much to overwhelm you as to show you that even in extreme cases there can be recovery from similar problems. I was trying to give you some encouragement that there could be solutions out there to your problems, too.
I’m two years out and the only sense of taste that I have is spicy items. Black pepper for sure… Now the smell thing is horrible - I use to smell everything and I do mean any and everything! But now I can only smell things like rotten fish, potatoes, or burning leaves. I hate it … I’ve only had the sinus issues a couple of times but they were bad.