Anyone had brain surgery before?

paul5186 said:
Meh, got news on Wednesday that it's progressing and quite fast. On the left of the picture is the fuzzy tumor which is now squashing my brains ventricle. Off on Friday to get some second opinions on treatment. As this was clear in September last year.
da9d8598a94e248cc4a869da6a596067.jpg
Click to expand...

Sorry to hear this, bad news indeed. :crying:

Holding thumbs the second opinion doc has something positive to offer.
 
@paul5186 How much was the bill for this surgery? I know your insurance paid but I would like to know what they paid. 500k? 800k? 1 bar?
 
So should start PCV chemo later this week. Fun oh fun.

Day 1 take CCNU (The C in PCV) capsule form

Days 8-21: Procarbazine (The P in PCV) - capsule form

Days 8 and 29: Vincristine (The V in PCV) - via IV at the hospital.

Repeat every 6 weeks for 6 cycles. I.e a minimum of 9 months.

I also have to be on a special diet due to the way procarbazine reacts. Though I doubt I will feel like anything.

The picture attached is from Jan till June. The cancer on the left of the picture of the brain which is physically on my right side.

Off for some rnr with the wife and no kid this weekend, relax, eat, sleep.

Awkward banking sperm session on Monday. Just in case.

4caee156375dccfd621044bdad4aa4a9.jpg
 
koffiejunkie said:
How are you doing bud?
Click to expand...
I finish cycle 2 of 6 on Thursday with IV. Luckily less nauseous than then chemo before. However lots more random things. E.g joint pain, tingling hands and feet. Severe random pain. Had 3 glasses of wine on new years over 5 hours and had an allergic reaction, went very red, bloodshot eyes, struggled breathing etc. Otherwise surviving and should finish in Sep.
 
Time for an update. Not because I need any validation but rather that cancer sucks and it's affecting younger people all the time these days.

Anyway

The PCV chemo was seriously rough. With IVs in hospital and tablets at home. Only managed to finish 3 of the 6 cycles. At one point I had an allergic reaction and could barely breathe.

After an MRI it showed that the chemo was not working and the brain tumor had spread
So we stopped the PCV chemo, and went back onto the normal regiment of temozlomide chemo. After about 12 cycles, I developed an abscess on my lower leg. As my white cell count is always so low due to the chemo a simple staph infection can get quite serious as I have low immunity... So I took myself for an x-ray of my lower leg to make sure there was no sepsis to the bone. There wasn't.... Phew. But I got called back the next day as they found something else.

They discovered a chondrosarcoma in my fibula bone, i.e bone cancer. Luckily it was in my fibula and not my hip of tibia. But it just sucked, another cancer. I firmly believe it was due to all the immuno suppresant chemo I have been taking since Dec 2020 that contributed to this.

So I had most of my Fibula bone removed in hospital, and luckily it had not spread to any soft tissue. Pre 1980 they would usually just amputate the leg.

This is basically the surgery

Tldr this all came together after deciding to have another child who rocked up 5 weeks early and I was on a walker. However couldn't have been more blessed and baby is a nice healthy 13 months old now.

Following the failure of the PCV chemo I completed 24 cycles of temozlomide chemo. My brain cancer has been stable, still there, but not spreading. So I made the decision to stop chemo as I think it was doing me more harm.. It has only been 4 months now and I have had only one MRI scan, but things are still stable still. Next MRI is in Jan.
1a6f4925b2d64f9ad732accb2c1dbbd0.jpg
9de01cf27cda944585ed8b79c3c069fb.jpg
b112485454f213cee8db9ae0cf974a99.jpg
49c34cc35e1817d89c96851540de9b36.jpg
 
paul5186 said:
Time for an update. Not because I need any validation but rather that cancer sucks and it's affecting younger people all the time these days.

Anyway

The PCV chemo was seriously rough. With IVs in hospital and tablets at home. Only managed to finish 3 of the 6 cycles. At one point I had an allergic reaction and could barely breathe.

After an MRI it showed that the chemo was not working and the brain tumor had spread
So we stopped the PCV chemo, and went back onto the normal regiment of temozlomide chemo. After about 12 cycles, I developed an abscess on my lower leg. As my white cell count is always so low due to the chemo a simple staph infection can get quite serious as I have low immunity... So I took myself for an x-ray of my lower leg to make sure there was no sepsis to the bone. There wasn't.... Phew. But I got called back the next day as they found something else.

They discovered a chondrosarcoma in my fibula bone, i.e bone cancer. Luckily it was in my fibula and not my hip of tibia. But it just sucked, another cancer. I firmly believe it was due to all the immuno suppresant chemo I have been taking since Dec 2020 that contributed to this.

So I had most of my Fibula bone removed in hospital, and luckily it had not spread to any soft tissue. Pre 1980 they would usually just amputate the leg.

This is basically the surgery

Tldr this all came together after deciding to have another child who rocked up 5 weeks early and I was on a walker. However couldn't have been more blessed and baby is a nice healthy 13 months old now.

Following the failure of the PCV chemo I completed 24 cycles of temozlomide chemo. My brain cancer has been stable, still there, but not spreading. So I made the decision to stop chemo as I think it was doing me more harm.. It has only been 4 months now and I have had only one MRI scan, but things are still stable still. Next MRI is in Jan.
1a6f4925b2d64f9ad732accb2c1dbbd0.jpg
9de01cf27cda944585ed8b79c3c069fb.jpg
b112485454f213cee8db9ae0cf974a99.jpg
49c34cc35e1817d89c96851540de9b36.jpg
Click to expand...
Wishing you all the best man!!! Hope you and the family are doing well.
 
I hope you don't mind, I plugged that first image into an AI module as a test to see what it saw, here is the result. Only you will know how accurate all it's findings are :

-------------------

Here’s what I clearly see on this coronal MRI of the brain (looks like a T1-weighted image without contrast):Key abnormalities:
  1. Very large, abnormal signal in the left cerebral hemisphere
    • Almost the entire left frontal, parietal, and temporal lobes show abnormal gray-white differentiation with a diffuse, hazy increased signal on this T1 sequence.
    • The left lateral ventricle is severely compressed and asymmetrically enlarged (ex-vacuo dilatation) because of massive loss of brain tissue in the left hemisphere.
  2. Marked volume loss (atrophy) of the left cerebral hemisphere
    • The left hemisphere is strikingly smaller than the right.
    • There is thinning of the left cortical ribbon and widening of the sulci on the left side.
  3. Midline shift to the left
    • The falx cerebri and other midline structures are pulled toward the left because of the severe volume loss on that side.
  4. Preserved right hemisphere
    • The right side looks essentially normal in volume and signal intensity.
Most likely diagnosis:This appearance is classic for severe left hemispheric encephalomalacia with porencephaly / hydranencephaly-like changes, most commonly due to:
  • A remote large middle cerebral artery (MCA) territory infarct in infancy or early childhood (perinatal stroke), or
  • Severe perinatal hypoxic-ischemic injury affecting predominantly the left MCA territory, or
  • Less commonly, a congenital malformation (e.g., open-lip schizencephaly or porencephalic cyst) that destroyed most of the left hemisphere early in life.
The end result is essentially hemi-atrophy of the left cerebral hemisphere with compensatory ventricular enlargement and midline shift toward the damaged side.This is not an acute process; these changes are chronic (years old).If this is a patient you know, the clinical history (e.g., seizures, right-sided hemiparesis, developmental delay since infancy) would typically fit perfectly with these imaging findings.Let me know if you have other sequences (T2/FLAIR, axial views, etc.) or clinical information; I can refine the interpretation further.
 
Wrath of Khan MD said:
I hope you don't mind, I plugged that first image into an AI module as a test to see what it saw, here is the result. Only you will know how accurate all it's findings are :

-------------------

Here’s what I clearly see on this coronal MRI of the brain (looks like a T1-weighted image without contrast):Key abnormalities:
  1. Very large, abnormal signal in the left cerebral hemisphere
    • Almost the entire left frontal, parietal, and temporal lobes show abnormal gray-white differentiation with a diffuse, hazy increased signal on this T1 sequence.
    • The left lateral ventricle is severely compressed and asymmetrically enlarged (ex-vacuo dilatation) because of massive loss of brain tissue in the left hemisphere.
  2. Marked volume loss (atrophy) of the left cerebral hemisphere
    • The left hemisphere is strikingly smaller than the right.
    • There is thinning of the left cortical ribbon and widening of the sulci on the left side.
  3. Midline shift to the left
    • The falx cerebri and other midline structures are pulled toward the left because of the severe volume loss on that side.
  4. Preserved right hemisphere
    • The right side looks essentially normal in volume and signal intensity.
Most likely diagnosis:This appearance is classic for severe left hemispheric encephalomalacia with porencephaly / hydranencephaly-like changes, most commonly due to:
  • A remote large middle cerebral artery (MCA) territory infarct in infancy or early childhood (perinatal stroke), or
  • Severe perinatal hypoxic-ischemic injury affecting predominantly the left MCA territory, or
  • Less commonly, a congenital malformation (e.g., open-lip schizencephaly or porencephalic cyst) that destroyed most of the left hemisphere early in life.
The end result is essentially hemi-atrophy of the left cerebral hemisphere with compensatory ventricular enlargement and midline shift toward the damaged side.This is not an acute process; these changes are chronic (years old).If this is a patient you know, the clinical history (e.g., seizures, right-sided hemiparesis, developmental delay since infancy) would typically fit perfectly with these imaging findings.Let me know if you have other sequences (T2/FLAIR, axial views, etc.) or clinical information; I can refine the interpretation further.
Click to expand...
He’s seeing one of the best neurosurgeons in the field, he doesn’t need ChatGPT.
 
paul5186 said:
Still here, cancer has not spread further in the last 11 months. Still off chemo. However the MRI's are only now picking up radiation damage to brain. Sometimes it only happens years after brain radiation.
Click to expand...
Glad to hear you're still with us. You can still write full sentences, so it can't be too bad!
 
You must log in or register to reply here.
Back
Top
Sign up to the MyBroadband newsletter
X