I am about 6 months out from my bleed and I have what I think are side effects but need to know if someone else has similar symptoms at this point. I have talked to my neurosurgeon and he doesn’t really have an answer except that its stroke related but I just wanted to know if anyone else can confirm similar issues and what they did to get better or if they did get better.
First–my tastebuds especially sweet, are extremely dulled. I can not taste food the way I use to before I got sick. Sweet things like cupcakes, choclate bars (halloween) are like eating unsweetned chocolate to me. I can’t ever tell if my coffee is sweet enough and I have to rely on my husbands taste buds for things that I bake. I have lost almost 15 lbs as somewhat of a result of this. I know its not smell-nothings wrong with my sniffer. Anyone?? I have also had Drs. tell me to get use to it…aaagh.
Second-my left side was affected by my bleed but my right leg is in so much pain–almost in the exact place where I had my angiogram. My husband says that must have been the cause but this did not come about until about a month ago. It feels like I may have pulled a muscle in my groin. Just sitting cross legged on the floor is painful. I go to the gym to stretch it and that does seem to help but I have never experienced anything like this. I have iced it at night but I am not to regular about that–Anyone??
Hello, Georgia. While my situation is a bit different, I have been through some things that are similar enough to leave me thinking that the things you are experiencing are “normal” results of what you have been through. I had a similar-sized bleed in my left temporal lobe and my craniotomy left my sense of taste a bit “off”. Almost everything tasted different after my surgery. The only thing that tasted the same to me was corndogs… And maybe not even all corndogs, but I knew that corndogs from Wienerschnitzel still tasted the same. Fortunately, things eventually started tasting normal again, but it took several months.
Regarding your leg(s)… I had a loss of strength in my right leg and still have partial numbness in my right foot 4 years after my surgery. In the couple of years prior to my surgery I had a total of 3 angiograms, all performed on the same side (right leg) and while the swelling is pretty much gone these days, I still come across some soreness in my hip and thigh from time to time, as well as a bit of swelling right at the site of the cathederization.
Question #1–Since my surgery, sweet food doesn’t taste as good to me as it used to.
Question #2–What you have described sounds like it could be groin pain. My groin muscles have been weakened by a surgery I had to remove a Bartholin’s cyst a number of years ago. Ice helped me, but I also got some strengthening exercises as opposed to stretching exercises when I went to a sports clinic. You might try going to an orthopedic doctor. If it is indeed a groin pull, the doctor probably will give you some strengthening exercises to do.
Hope some of this helps and that the pain goes away.
Could it be caused by medication? I still have my AVM, but I went through about about a month of nothing tasting right, which was great for losing weight! lol
Thanks Jake this helps. Corndogs huh? I havn’t had one of those since after having my avm-no Weinerschnitzels down here maybe thats why. But Mac and Cheese tastes pretty much the same. So I bought a bunch of those. I think my leg is because of the surgery (only explanation I have) I just wanted to know if anyone else is having issues? Thanks for your input.
Jake M said:
Hello, Georgia. While my situation is a bit different, I have been through some things that are similar enough to leave me thinking that the things you are experiencing are “normal” results of what you have been through. I had a similar-sized bleed in my left temporal lobe and my craniotomy left my sense of taste a bit “off”. Almost everything tasted different after my surgery. The only thing that tasted the same to me was corndogs… And maybe not even all corndogs, but I knew that corndogs from Wienerschnitzel still tasted the same. Fortunately, things eventually started tasting normal again, but it took several months.
Regarding your leg(s)… I had a loss of strength in my right leg and still have partial numbness in my right foot 4 years after my surgery. In the couple of years prior to my surgery I had a total of 3 angiograms, all performed on the same side (right leg) and while the swelling is pretty much gone these days, I still come across some soreness in my hip and thigh from time to time, as well as a bit of swelling right at the site of the cathederization.
Hey Debbie, I have to know did you ever feel like your sweet taste buds ever came back?? Or did food ever get to tasting a bit better? I have felt a slight numbness on the tip of my toungue ever since this happened so I can tell their gone. I just hope they grow back. My rents seem to think it was the various tubes I had in my mouth for so long that left my tongue sticking out of my mouth and getting dried out. Any explanation will do I guess–
Debbie Considine said:
Hi Georgia,
Question #1–Since my surgery, sweet food doesn’t taste as good to me as it used to.
Question #2–What you have described sounds like it could be groin pain. My groin muscles have been weakened by a surgery I had to remove a Bartholin’s cyst a number of years ago. Ice helped me, but I also got some strengthening exercises as opposed to stretching exercises when I went to a sports clinic. You might try going to an orthopedic doctor. If it is indeed a groin pull, the doctor probably will give you some strengthening exercises to do.
Hope some of this helps and that the pain goes away.
Hey Connie–I have to say before this happened I was not on any medication-not even bc- but for the first time since my bleed I am medication free. I have recently been taking bladder medicine that my uroligist suggested I go off of to see if I get better on my own. That takes a little while to get out of your system as you may know. I’m not back to the way I was before but I’m keeping my fingers crossed-And my husband monotired my pain medicine intake like an eagle. I look back on it and watch a lot of Oprah these days to be certainly glad he did! So short answer to your question-No medication as of now so maybe my symptoms will improve.
Connie T said:
Could it be caused by medication? I still have my AVM, but I went through about about a month of nothing tasting right, which was great for losing weight! lol
Hi, Georgia- I can’t speak to the taste issue but I had the same thing happen after an angio. Debbie (below) is right, we eventually decided it was a groin-pull. Exercises, etc. eventually helped but boy it hurt in the meantime. I think the radiologist was too rough.
The taste buds still haven’t come back nor did my tongue every feel numb. Another thing I have noticed, though, was that I’m more sensitive to sour food, espeically salad dressings made with vinegar. If I don’t take my time eating, I end up having coughing spells. Glad you got several responses to your post.
Take care,
Debbie
Georgia Thompson said:
Hey Debbie, I have to know did you ever feel like your sweet taste buds ever came back?? Or did food ever get to tasting a bit better? I have felt a slight numbness on the tip of my toungue ever since this happened so I can tell their gone. I just hope they grow back. My rents seem to think it was the various tubes I had in my mouth for so long that left my tongue sticking out of my mouth and getting dried out. Any explanation will do I guess–
Debbie Considine said:
Hi Georgia,
Question #1–Since my surgery, sweet food doesn’t taste as good to me as it used to.
Question #2–What you have described sounds like it could be groin pain. My groin muscles have been weakened by a surgery I had to remove a Bartholin’s cyst a number of years ago. Ice helped me, but I also got some strengthening exercises as opposed to stretching exercises when I went to a sports clinic. You might try going to an orthopedic doctor. If it is indeed a groin pull, the doctor probably will give you some strengthening exercises to do.
Hope some of this helps and that the pain goes away.
Hello Georgia,
I lost the sense of smell, but I can still taste, not as good as before, I kown it is terrible not being able to taste food, especially sweets, my sister lost her tast too, dr. told her she will get it back in a mo. 4 yrs. still can’t taste. sorry can’t provide an answer to this taste situition.
On the subject of muscles, I get sore muscles often, extercise help some. Infrared treatment helped more.
Hi Georgia,
I had a cerebellum avm and I had embolization 4-16-09 and GK 7-22-09 to remove it.
I had a stroke on 12-12-08 from a bleed from the avm. Most of my problems were vision and balance related. I vomited a lot.
When my taste issues started it was after I was given a second stroke during embolization 4-16-09
With the second stroke that I was given , I had balance issues, vision, taste issues and my whole right side is numb, my hearing in my right ear is not as good either. I can walk but I am numb on the right and I can’t feel hot or cold. I can’t tell if objects are dull or sharp either.
Six months later, I can hear better in m right ear, my taste is still off, like you, it is mostly sweet things. I think my taste buds were going a little before the stroke, just a little when it came to sweets.
Unlike you, I have gained weight, not tasting makes me want to eat more.
I notice, I can’t taste salt either.
I can now taste things with the first few bites, but after that I can’t taste as well.
It’s been six months and it does seem a little better. I’m not on much medicine either, a low dose
pressure pill and iron everyday. I take tylenol for pain, almost everyday, I guess I don’t want any pain LOL.
My physical medicine doctor said that stroke can destroy muscles, so he put me in a muscle building class,
it helps. Tylenol does help with the minor pains I get in my legs, face, and head.
Not being able to taste is a nerve thing. The nerves are damaged that is why tastebuds are not good. Nerves can heal, so doctors may not know if a person will get their taste back or not.
I’m glad to be alive whether I can taste or not LOL.