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Experience with brain surgery, tumor removal... recovery
Posted on 8/7/17 at 3:11 pm
Posted on 8/7/17 at 3:11 pm
Hello all...
A good friend of mine found out two years ago that she had a tumor the size of a small lemon on her brain stem. She traveled to Cali to have some surgeons familiar with that type of surgery remove it for her. They found out that it was an Epidermoid Cyst, that more than likely had begun formation in the womb and, over time, began to effect her daily routine.
It's been 2 years on the 19th since the surgery, but she is still in incredible amount of pain every day. We live in Oregon, so the devil's grass is legal. Her pain remedies are: medical THC/CBD oil combos, and other than that all homeopathic remedies. Accupuncture, massage therapy, she has a cranial sacral specialist that she sees regularly... and yet nothing helps.
After the surgery, she spent 2 days in ICU and the doctors sent her on her way (after brain surgery! lol)... no physical therapy, no psych therapy (surgery on your brain truly affects you post-surgery)... nothing. After 6 weeks, they told her to continue her daily routine.
Well, this didn't happen. And there seem to be no solutions for pain. She found out, while seeing her cranial sacral specialist, that the doctor had cut her SCM during the surgery... she was never told this before. That's where most all of her pain is. She will get "stuck" looking in a certain direction as that muscle will just completely tighten up. She describes it as the feeling you get when the bottom of your foot cramps up and feels like it's stretching completely, but it's down her neck/left side of her body. This pain will go on for hours, sometimes days.
I guess I'm wondering if anyone has any type of experience with this. Should she be seeking physical therapy? Are there exercises she can do to help this muscle? Are there any NATURAL remedies to fix this?
Never takes pain pills and won't. Doesn't take muscle relaxers and won't. Trying to stay off of taking any "medicine," since we know there's not always a good outcome when you begin taking addictive type drugs.
Open to any suggestions/insights on similar situations or possible solutions. Thanks.
---I wasn't sure if this topic belonged on the health and fitness board, move if necessary. Thought I would get more feedback/reach more posters on the OT
A good friend of mine found out two years ago that she had a tumor the size of a small lemon on her brain stem. She traveled to Cali to have some surgeons familiar with that type of surgery remove it for her. They found out that it was an Epidermoid Cyst, that more than likely had begun formation in the womb and, over time, began to effect her daily routine.
It's been 2 years on the 19th since the surgery, but she is still in incredible amount of pain every day. We live in Oregon, so the devil's grass is legal. Her pain remedies are: medical THC/CBD oil combos, and other than that all homeopathic remedies. Accupuncture, massage therapy, she has a cranial sacral specialist that she sees regularly... and yet nothing helps.
After the surgery, she spent 2 days in ICU and the doctors sent her on her way (after brain surgery! lol)... no physical therapy, no psych therapy (surgery on your brain truly affects you post-surgery)... nothing. After 6 weeks, they told her to continue her daily routine.
Well, this didn't happen. And there seem to be no solutions for pain. She found out, while seeing her cranial sacral specialist, that the doctor had cut her SCM during the surgery... she was never told this before. That's where most all of her pain is. She will get "stuck" looking in a certain direction as that muscle will just completely tighten up. She describes it as the feeling you get when the bottom of your foot cramps up and feels like it's stretching completely, but it's down her neck/left side of her body. This pain will go on for hours, sometimes days.
I guess I'm wondering if anyone has any type of experience with this. Should she be seeking physical therapy? Are there exercises she can do to help this muscle? Are there any NATURAL remedies to fix this?
Never takes pain pills and won't. Doesn't take muscle relaxers and won't. Trying to stay off of taking any "medicine," since we know there's not always a good outcome when you begin taking addictive type drugs.
Open to any suggestions/insights on similar situations or possible solutions. Thanks.
---I wasn't sure if this topic belonged on the health and fitness board, move if necessary. Thought I would get more feedback/reach more posters on the OT
3
Posted on 8/7/17 at 3:13 pm to emboslice
Get Gordon, get it done.
Posted on 8/7/17 at 3:15 pm to emboslice
quote:
medical THC/CBD oil combos, and other than that all homeopathic remedies
Yes. I had a childhood friend who has brain tumors removed and to this day swears that weed saved his life post surgery.
Posted on 8/7/17 at 3:15 pm to emboslice
quote:
And there seem to be no solutions for pain. She found out, while seeing her cranial sacral specialist, that the doctor had cut her SCM during the surgery... she was never told this before. That's where most all of her pain is. She will get "stuck" looking in a certain direction as that muscle will just completely tighten up. She describes it as the feeling you get when the bottom of your foot cramps up and feels like it's stretching completely, but it's down her neck/left side of her body. This pain will go on for hours, sometimes days.
If this is causing the pain, there is likely some scar tissue causing tightness. I would imagine that some physical therapy would help, but surgery may be the ultimate solution. She should definitely be having a doctor confirm what the issue is, and if the doctor did cut the SCM and never told her, I would sue the frick out of that hospital. Have her request a copy of her medical record now.
Posted on 8/7/17 at 3:15 pm to NIH
Jim Adler, the Texas Hammer
Posted on 8/7/17 at 3:26 pm to guedeaux
quote:ah, definitely not a solution for her. Only because I don't think she would want to be cut open again... but you are absolutely right it's probably scar tissue.
would imagine that some physical therapy would help, but surgery may be the ultimate solution
We have been juicing marijuana leaves, taking lots of turmeric to help with inflammation. I need to look into aloe vera juice and other remedies.
I also know mushrooms can be incredibly healing for the brain.
I think she has her medical record with all the info on it.... don't you think the doctor should have mentioned he was doing it/asked if it was okay?
The most frustrating part of the whole experience was that the doctors did next to nothing for her post-surgery. She lost a good job because she was incapable of getting out of bed and functioning and they said "you should be back in your routine"
They treated it like, 'we did our part' and the surgery was technically a success (removed 98% of tumor)..... though they said it may grow back in 30
More years
btw this are very good, well known doctors in Santa Monica who do this surgery often. Wonder if anyone has had a similar experience
Posted on 8/7/17 at 3:28 pm to ellishughtiger
THC and CBD really do incredible things for tumor, cancers, aging in general.... but we all know that already so we don't have to get into it.
Personally know a kid (18 now) who was having awful ulcers and IBS type stuff going on where he couldn't function. He takes 3 CBD pills throughout the day and hasn't had an ulcer since:... shitting like a champ now.
Personally know a kid (18 now) who was having awful ulcers and IBS type stuff going on where he couldn't function. He takes 3 CBD pills throughout the day and hasn't had an ulcer since:... shitting like a champ now.
Posted on 8/7/17 at 4:03 pm to emboslice
quote:
The most frustrating part of the whole experience was that the doctors did next to nothing for her post-surgery. She lost a good job because she was incapable of getting out of bed and functioning and they said "you should be back in your routine" They treated it like, 'we did our part' and the surgery was technically a success (removed 98% of tumor)..... though they said it may grow back in 30 More years btw this are very good, well known doctors in Santa Monica who do this surgery often. Wonder if anyone has had a similar experience
American doctors herd patients in and out like cattle. -
The best source of knowledge I've found come from people who have shared similar experiences. There are likely facebook groups and forums for people who have had different types of brain surgery where you can learn all about what experiences they've had.
In my experience, a lot of doctors can't provide much information outside of what they learned in medical school. Odds are they haven't had brain surgery, so they have no idea what recovery is like and don't have the time or motivation to scour the internet researching it like someone actually afflicted with an illness would.
Posted on 8/7/17 at 7:09 pm to BulldogXero
quote:thanks and I completely agree. A group on Facebook is what led her to the doctor in Ca. The doctors in Louisiana did not want to operate and said to leave it be... which would've been impossible because she couldn't function with it there
The best source of knowledge I've found come from people who have shared similar experiences. There are likely facebook groups and forums for people who have had different types of brain surgery where you can learn all about what experiences they've had.
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