Brain Fog, Pain, and Surgery

Just over one week ago I had surgery #5 at U.T. M.D. Anderson Cancer Center to remove two painful Neurofibromatosis tumors on my left hand. Unlike my first three surgeries, the two most recent ones have been comparatively minor.

Here are a few before pictures:

And after pictures:

The experience at the hospital was outstanding. U.T. M.D. Anderson Cancer Center truly is the best. I remember shortly before the surgery started the nursing anesthesiologist said, “We’re going to take good care of you.” Going into the surgery I wasn’t worried about anything and had full confidence in my doctors and nurses. 

Overall, this has been the quickest recovery from a surgery, thus far. It’s not over yet, but…Pain has been, comparatively, minor, as have most other post-surgery complications. As always, the areas operated on feel–in what can only be described as–weird. My entire left hand, really, feels weird: numb, tingly, and occasionally like there is something stuck in my hand somewhere, which is all perfectly normal. I also don’t have full use of my left hand right now.

Another very common post-surgery experience that I am all-too-used-to is being in a brain fog. This is caused both my pain medications and the anesthesia. My mind has been numb, making it somewhat hard, sometimes very challenging, to concentrate, to think, to talk, or to write. It’s always somewhat weird and scary when you can’t use your mind, especially when your life really depends on it. The brain fog hasn’t been as bad this time but it’s still there and it comes and goes. The other night I was reading a short passage, and while I didn’t have trouble reading it, per se, it felt like it was a struggle – like I was reading from a foggy distance – not sure how to describe it. 

Typically, it takes at least a month to fully regain all mental abilities.

Now, it’s somewhat a matter of when not if surgery #6 will occur. Dealing with lots of tumors (and pain) is part of having Neurofibromatosis. Hopefully, I’ll still have good insurance at that time. 

Dr. Andrew Joseph Pegoda  

Categories: Thoughts and Perspectives

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7 replies

  1. I saw little evidence of any brain fog when I saw you this past Saturday, and anyone who can do what you did to co-ordinate my fitbit to my laptop and phone has far less brain fog than that caused from just being a Senior Citizen! LOL

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  2. I saw a reference to some new research where a link between neurofibromatosis (don’t know which type) and childhood trauma exists. I think it was referring to emotional trauma. Can’t find the email or reference and a search on Google for neurofibromatosis doesn’t come up with it. The only “trauma” there is referring to physical trauma.

    Those bumps and cysts look an awful lot like the ones associated with sequestering of toxins. I wonder if your physicians ever had the contents examined closely, like running a spectrogram on the fluids inside? I sincerely doubt that they have ever collected hypodermal fluids to test for toxic chemical elements. Some of these cysts may just harbor viruses and/or bacteria, too. Although some symptoms may be more associated with surgery than with the occurrence of the bumps as you suggest, obviously any strong pain associated with them is different. However, when they form, they might pull on tissue associated with nerve endings and cause pain secondarily and still be formed when toxins are present. Some toxins attach to nerve endings and just block sensation, like in the gut, causing gastro- or enteroparesis (all peristalsis stops, but only when food is not present). I also found that strong pain is often associated with the release of very strong toxins from the bone, often starting as a pin-prick sensation, and as toxins pool, more extensive pain. They would be more prevalent on the side of the body you sleep on, and if you toss & turn, the side your more often wake up on.

    I often get the pain from toxin release when I am finally relaxing after a period of activity or great stress. High stress generally causes more rapid movement of toxins throughout the body, making it difficult for them to pool and cause pain or other symptoms (like bumps, cysts, sacs, etc). So, clearly, if you can get to the point of relaxing, you will feel the “after-effects.”

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    • Good to hear from you! I was getting worried since it’s been a while since your last comment.

      All of my spots are neurofibromas and/or Café au lait spots – they might look like cysts but aren’t. They’ve done a number of specific tests on various spots – they are always regular neurofibromas – basically little tiny tumors that are a fact of life for people with NF.

      The human body really is an interesting, complex thing!

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  3. Oh, I also found brain fog mostly associated with toxins that get into the brain case, most often getting there when they were dripping from the skull bones themselves or by backflow through the foramen magnum when I coughed. It is extremely unlikely to appear when I do not have the toxins pouring into my lung, and I can breathe really easily.

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  4. Yeah, I have been facing some really powerful toxins pouring into my lungs and shutting them down. They first started to come out of the bones about 2 years ago and threaten me every few months. This last time only lasted about 2 weeks but there was a lot of repair necessary afterwards and that sent me to bed for about 2 weeks. When they first came out the episode lasted about 3 months. It seems that they are under control now (but don’t know for how long). They are still too strong to have been diluted down enough. I instructed my brain on what it needs to do to dilute them down, but when the bones get too full with this slightly diluted toxin, local responses take over for the brain and start to release the toxins. Then they pour into the lungs, which over the space of 1-2 hours start to gradually shut down. When they first came out, I would have to sit there gasping, heavily hyperventilating, for 72 hours straight, as I tracked down where they were coming out, where the damage was, removing the blocks the brain had set up when I was a baby that stopped repair, find all emotional links that cause severe panic attack (making it even harder to breathe) or stopped the other newer brain pathways I developed to stop the bones from releasing them. It also means tracking down every conscious and unconscious memory, every sensation, everything ever associated with these toxins in the brain, as well. It takes a long time before I can finally stop the release and start the repair (which normally takes from 2-4 days to get back to a tolerable condition). The whole process has been shortening as the brain learns where else to look for damage. Most of what was triggering the shut down I found were panic attacks generated from circuits established when I was a baby. I keep finding more areas in the brain devoted to them. No wonder I lived with them all my life and never realized that it was not a normal response!

    Now I can get back to earning some money.

    What do you bet that the tests performed on your bumps have never looked for toxic chemical elements. Cysts have a connective tissue covering but many of the earliest sacs sequestering toxins have only a thin layer of epithelium separating them from the normal tissue. Many tumors have such a membrane, but many do not but still may becaused by toxins that have mutated or de-methylated DNA which make up benign tumors.

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