Right After Surgery

4th of Jan, 2020

I woke up from surgery room into the ICU.   The first assessment was by a Neurologist making basic tests, one key was my legs.  They were all good.
What happened right after that was that I met my wife, so can be given the CBD (this was arranged by Neurosurgeon before this).   I also was given and approved the Bromelain that I had and took as per the protocol that Michelle Gerencser.   I committed on Bromelain for a week. 

The next morning, I was given different medications to ensure pain is minimal.  

In the morning, all the tests showed that I am doing well and they walked me to my room at 11 AM (earlier than the usual for other patients, as they said I was doing better)

First 5 Days (at hospital) 

4th to 9th of Jan, 2020
The below shared with you the medications that I was given by the doctors in the hospital.
 
 

Day from surgery

Pain killers

Enoxaparin

5 days

Omeprazol

15 days

Dexamethasona

15 days

1st day

Took it

Took it

Took it

Took it

2nd day

Replaced one for another

Took it

Took it

Took it

3rd day

Stopped second type  

Asked to stop

Took it

Took it

4th day

only Paracetamol and Ibuprofeno

Asked to stop

Took it

Took it

5th day

same as below 

Asked to stop

Took it

Took it

Notes

Because I’m hallucination because of
these.

I arranged with the doctor too.

Stopped it on the 6th day after
asking the doctor

Stopped in 10 days instead of 15,
after asking the doctor to do so
.

As I asked the doctor on whether I had any antibiotics, and they said that I have them for three days only.

The below shows the symptoms I was suffering while I was in the hospital 

 

Day from surgery

Headache

(higher means more pain)

Comprehension What’s Heard (higher means better)

Reading/ Writing

(higher means better)

Hallucination (higher means better sleep)

Sleeping

(hours)

1st day

1 to 3

1

1

9

6

2nd day

1 to 3

1

1

9

5

3rd day

1 to 9

2

1

8

2 + 2

4th day

1 to 9

3

1

8

3

5th day

1 to 9

3

1

8

4

Notes

More than half the time, headache is around 6

Walked out poorly after leaving

I could read the mobile, read e-mails or respond

Mostly weird characters that move “away” from me.

They do not have melatonin in the hospital

On the third day, the doctor was surprised, and he said that I am ready to leave on the third day and that I can remove what’s on my brain.  However, he felt that it’s better to stay at the hospital until the 5 days are over.

The images below is few minutes before it was removed 

 

Pathology is Out!

9th of Jan 2021
The outcome turned out to be Grade II Oligodendrogliomas
 
I was shocked (and so was the doctor!)  
So it was two good news.   ONE: 90% resection took place, TWO: what I had and the 10% that remained were on Grade II
 
The 1-page report came on the 14th and has been shared with me.  
He mentioned: “Sections show a neoplastic glial proliferation composed exclusively of cells with cytoplasm clear, and round central nucleus with slight hyperchromasia. Cells are arranged in delimited groups partially by a multitude of capillaries. Multifocal microcalcification is also observed. It is also observe fragments of cerebral cortex focally infiltrated by tumor cells creating images of satellitosis
 
 
 

Dr. Oliver: Future Options

 Here is what Dr. Oliver recommended after discovering Grade II Oligodendrogliomas: 
 
Radio 
It is not recommended to give Radio when one is at Grade II
 
Chemo
 It is good to consider chemo.  However, he said it is best to wait and to first wait for 3 months and see what the MRI looks like and then make the decision.  He asked me to share the MRI at that point in order to give me the recommendation.

When we spoke about Practice for Human Genetics Tübingen, he spend time reviewing what they do.   He told me that the concepts exists in Spain, but what these are doing is more advanced.  His recommended was that going for chemo is best taken with Dr. Saskia Biskup.    

Another Surgery?
So the doctor said that he believes that there is a high chance the remaining 10% can be resected with another surgery.   
Why didn’t he do those remaining 10% now? two reasons  
  1. On the left temporal lobe, the area that remained was difficult to remove on the same day because the remaining was “XYZ” 
  2. He said that the part in the XYZ area will require opening a new area – this means cutting a new area at the top area.   That is too much work on the same day. 
 

3 Weeks Post Hospital 

From 9th of Jan 2021 onwards

After leaving the hospital, I staid in Spain for 9 days and then left back to Amman, Jordan.  Before leaving from Spain, the doctor informed me it would be best to do a CT Brain to ensure I’m safe (and that took place and I was safe to travel).

Pain Control & Sleep

I took the Paracetamol and the Ibuprofeno as per the doctor’s recommendation.   I tried to not take them on the 10th day of surgery, but that gave me difficult pain, so I continued on it.
 
On the 17th (two weeks post surgery), I stopped both of them (one week earlier than the original plan given by the doctor).   I was happy to find out that I had no pain anymore 🙂 
As I am writing on the 30th of Jan, and I have not have had any pains. 
 
Sleeping became better.   Especially when I arrived back to my house, I started sleeping 7 to 8 hours per night (without any supplements for that purpose)  
 

Diet

Well, when I knew that I am on Grade II, and when I was tired all day, I thought I will be breaking all the diets for those three weeks.   I put a target to add more carbs and that made a difference in the first 10 days.  
 
My birthday is Jan 27th, and I decided to go back to the diet when I feel better.  
 
So that’s about three weeks not following any diet.  Eating anything that is known to be not possible for me (e.g. lentil or cheese), I surely had bloating that I haven’t had years ago.        
 
I was originally planning to go back to Ketogenic Diet.  However, I thought it is easier to start at AIP diet until I hear more about what’s the best for me.
 

Symptoms Remaining

 

After leaving
hospital

Comprehension
What’s Heard
(higher
means better)

Reading/
Writing

(higher
means better)

Hallucination (higher means better sleep)

1st
week

4

2

5

2nd
week

5

3

4

3rd
week  

5

4

3

Notes

Way worse than before surgery

Way worse than before surgery

It is improving

 

Seizure Control

I have some confusing outcome before and after the surgery.  Here’s how…
 
I was given Dexamethasona days before traveling from Amman (before the surgery).   I noticed that when I started taking that, I had better seizures control.  Basically, no auras took place until my surgery.
 
Before the surgery, I was taking 1.25 ML (116.7 MG CBD per ML), twice a day.
 
While on the hospital (for a 5 days), I was feeling so good (on the seizure only) to the extent that I got the number gradually from 1.25 ML to 0.5 ML in three days.    The outcome was: all feels great!
 
 The next 5 days post hospital, I continued on Dexamethasona.   Then I stopped.
 
10 days after (3 days after arrived to Amman), I started having seizures back (auras).  I had them on three different days during the last 10 weeks.
 
I had to move back to 0.75 ML hoping that this would work.
 
Remains the question in my head: is this the Dexamethasona? hard to figure out.
 
(A week later like I will explain later, things change dramatically)
 

EEG

 So, I thought it is probably a good idea to do an EEG and see if there is any outcome – to compare the outcome with what I did on Dec 2020 (a month before surgery).   The doctor back then said “Abnormal EEG with focus of epileptogenic activities in Lt front to-temporal leads”, and the doctor recommended taking Lamictal (100 x 2).   
I didn’t back then as I explained the full details
 
Why the EEG again? It is to figure out if I actually got better post surgery?  
 
At the end of the third week in Amman, I did the EEG, and the doctor was happy (and I was shocked).   The outcomes were actually near perfect!  
 
At the report, the doctor said: “Left front-temporal slowing due to previous surgery.   No epileptiform activities seen
The full report 26-page details can be downloaded here.
 
This was dramatic and I was very happy.   The next day (On the 4th week after surgery), this whole thing change dramatically, and I’ll explain on soon on the next page
 
 

Vision Issues After Brain Surgery  

These includes how the 5the days in the hospital was, and what I suffered from and what I was doing well. 

Most importantly, the Pathology was out and I’m sharing here

 

Clearly, given that my left temporal lobe surgery is on the left, then this means that might right side is going to get affected possibly.

The image on the right side explains how the area that will be touched during the surgery will be touched.

 

That’s what the doctor explained to me before the surgery, and he explained I may not be able to see things that right far away from my right side and accordingly with time I will be starting to right on the right side physically to see what I want to see.

The doctor was in fact surprised that I was seeing things clearly on the right before the surgery, given that the tumor is significant on the left side.

After surgery, doing a basic test by the doctor showed me clearly that I did lose my ability to see the “far away” right side without moving my head. 

 

Double Visions?

In the first week, I used to see most of what I read shown doubled next to each other.   With time, that has become far less, but is still happening (3 weeks after).    However, if I look at the right side, I still see the double visions for the first 1 to 2 second and then improves.    

Supplements During the 3 Weeks

 

After leaving
hospital

1st
week

2nd
week

3rd
week

Vitamin D

Y

Y

Y

Resvero
Active

N

Y

Y

Turmero
Active

Y

Y

Y

EnzymixPro

Y

Y

Y

Brain-E DHA
1200-TG

N

Y

Y

BDNF
Essentials

N

N

Y

Complete E

N

Y

Y

EnteroVite

Y

Y

Y

 

All the things that I did not take on the first week walking of the hospital was because I did not have it with me while I was in Spain.

Did Sending Pathology Succeed? 

As planned weeks before travel, we had communicated with the hospital in Spain and we planned to execute right after surgery.  The outcome was as follows:

 

Tumor Diagnostic: By Saskia Biskup, MD

That one worked successfully!  It was one week after it was prepared in the hospital and then it was shipped on Jan 11th, and arrived next morning in Germany.

I will be waiting for the outcome in 4 to 6 weeks to see the results! 

 
Nagourney Cancer Institute: By Robert Nagourney, MD

 

The hospital did a great job preparing it during the surgery in order to be sent to United States.   Sadly, the 4th of Jan until 7th of Jan were not good days for them to deliver to the United States.  At least four different shippers said that it can be delivered in 5 days to be delivered, and in reality that is too long (it won’t arrive in good shape)

Therefore, we lost the opportunity with Nagourney Cancer Institute and they were informed. 

NEXT: Second Month with Surprise
Click here to see how the second month went with difficulty