Post Viral Acute Cerebellar Ataxia Linked to PFS – Potentially caused by Herpes Virus Infection in Cerebellum

February 21, 2013 — 6 Comments

Acute Cerebellar Ataxia – Often caused by Herpes Virus Infection in Cerebellum

Acute Cerebellar Ataxia can be caused by a Herpes Simplex Virus, often Varicella-Zoster Virus, the same that causes Chicken Pox & Shingles. The Virus can  infect the Cerebellum via catching the virus or via the vaccine per reports. When Acute Cerebellar Ataxia is caused by a virus it is specifically called Post Viral Cerebellar Ataxia. In addition, it has the exact same symptoms as Posterior Fossa Syndrome. This leads to the hypothesis that PFS & Post Viral Acute Cerebellar Ataxia may be one in the same.

In research to understanding and improve Ayden’s Facial Palsy’s among his other PFS symptoms, I found a connection. Seemingly random Acute Facial Palsies are often linked to viral infections. I then looked deeper and found Post Viral Cerebellum Ataxia. It’s been found to have been caused by a viral attack primarily from the Herpes family of viruses.

In research it is often found with the VZV Virus or Varicella-Zoster Virus, the same virus that causes Chicken Pox & Shingles.

Post Viral Cerebellum Ataxia is an attack of the Cerebellum with a Virus and causes the exact same symptoms as Posterior Fossa Syndrome/Cerebellar Mutism. It can include double vision, palsies, mutism, gait issues, ataxia, brain and spine inflammation and many other “stroke” like symptoms and more. It can resolve in weeks, months, multiple years and in unfortunate many cases can have life long ramifications. This strikes primarily immune compromised patients, but may strike those that otherwise look healthy.

Herpes Simplex Viruses are found in 90-100% of brain tumors and the Herpes Virus family can recreate the 10 Hallmarks of Cancer. The Herpes Simplex Virus family is also known to cause the same exact symptoms as PFS in otherwise healthy kids without brain tumors through a Herpes infection in the Cerebellum.

This infection can happen from catching the virus or being infected through the actual VZV vaccine for example. There is also a multi-day to multi-week latency between infection and onset of symptoms (very similar to the delay in onset of PFS symptoms from surgery or up to about 7 days, or sometimes later during heavy chemo when the immune system is the weakest).  At any time, the latent virus that has integrated into the Cerebellum for a life-long infection will awaken and cause significant damage in your Cerebellum (intersection of your gross  & fine motor control for body among other things).

When researching common symptoms of PFS/Cerebellar Mutism, damage to the Vermis, or walls of the Cerebellum by tumor attachment or tumor invasion has been a potential contributor. First during surgery and general anesthesia , the immune system is responding poorly and thus opening a door for advantageous pathogens. Second, during the resection of the tumor, the tumor has active cancer cells / virus cells. During the surgery, damage to the Posterior Fossa / Cerebellum wall may allow invasion of the Cerebellum of the virus/cancer. Then over the next few days to week+, the virus could attacks the nerves of the Cerebellum and creates Cerebellar Mutism / Posterior Fossa Syndrome.  Another hypothesis is that after surgery the negative impact to the immune system wakes up a latent Varicella Zoster Virus Infection in the Cerebellum and it spreads causing an array of PFS or Post Viral Cerebellum symptoms. Since once caught as a child or through vaccine, the VZV virus infects the Cerebellum and Spine and other nerve tissue through the body for a lifetime. Thus, its already in place in the spine and cerebellum to cause PFS like damage if it deactivates due to a depressed immune system.

So Cerebellar Mutism and Acute Post Viral Cerebellum Ataxia may be one in the same with the core similarity being a compromised immune system young in life. For our kids, the cancer treatment contributes to the immune system being heavily compromised opening the window to several pathogenic damaging viruses so near to the original tumor location, this clouding the cause and effect as well as potential treatment options.

Overview of Post Viral Cerebellar Ataxia

Statistics and Overview:

Wikipedia entry on Post Viral Cerebellar Ataxia

Journal of Child Neurology
Cerebellar Mutism Caused by Primary Varicella Infection in an Immunocompetent Child

Cerebellar Mutism – Review of the literature

Cerebellar Mustism Syndrome – A review of PFS

Below is a response to this theory from another forum, I think you will find it enlightening as well:


I just read one of the links you sent re the herpes virus and brain cancers. I find all of this very interesting as my daughter had a weird thing happen soon after her diagnosis.

First I want to tell you that my mother, who was in perfect health but always had HSV1 her whole life and H pylori till the age of 43, died at the age of 65 of colon cancer. Of my 4 brothers and sisters I am the only one who also has the HSV 1.

I have always had outbreaks of the blisters on my lips and a few months after my second daughter was born I had an outbreak of shingles, which is a form of the Herpes Zoster virus. When that same daughter was in Kindergarten a child in another class had chicken pox and they sent a note home telling us to watch our kids. My daughters both had the chicken pox vaccine at a year old so I was not that concerned but the next day after receiving that letter from the school I had an outbreak of chicken pox. I thought it was really crazy because I had already had them as a child. It seems I am very susceptible to this virus. I have often joked around with my husband saying I will probably eventually die from Herpes.

Anyway the thing I find interesting is that Erin was diagnosed with Medulloblastoma in Dec of 2002 and had surgery. She had PFS and a month later she had an MRI that showed the tumor that we thought was confined to her cerebellum was now all over the place. They called it leptomeningeal spread. She was started on a high dose chemo and about three months after starting she had an outbreak of the herpes simplex 1 virus. She had a couple of blisters on her lip and the onc gave us a script for Acyclovir. She took it for 6 days and they thought the virus was gone so they gave her the next dose of chemo. A few days later she broke out in a high fever, her blood counts were zero so we were admitted to the hospital. They started giving her Acyclovir again but the virus started going crazy. She had blisters all inside her mouth, down her esophagus, inside her nose and even at her g tube site on her stomach. The doctor got very nervous now and had her started on some super strong antibiotics/antivirals. They actually told me that she may well die from this infection and suggested we sign a do not resuscitate order.

Over the next three days her blood counts started to elevate again and the fever broke and she started looking better so I guess the heavy duty antivirals they gave her were working. Anyway the strange thing is that her next MRI showed no evidence of disease in her brain. So she went from all these areas of enhancement before the herpes treatment to no evidence of disease after. The doctors had told us that the best we could hope for would be to slow down the progression of the disease and all were shocked by this MRI. I have always thought that this disappearance of the disease may have been caused by the herpes virus, but now I wonder if it was caused by killing the virus or at least weakening it with the high dose antibiotics and antivirals.

I hope that this research goes further and one day they discover the cause of these tumors and are able to cure them. My mother had ulsers her entire adult life. Her doctors always told her they didn’t know what caused ulcers and so just prescribed antacids. They never worked well for her and she had a lot of suffering. When she was in her 40’s she went to a new doctor who told her someone had discovered that ulcers were not caused by stomach acid but rather by a bacteria called H pylori. She was tested and was positive for H pylori. He gave her an antibiotic that kills the bacteria and she never had another ulcer again. They now have evidence that H pylori causes gastric cancer the same way HPV causes cervical cancer.

I completely believe that brain tumors can be caused by a virus or bacteria. I have always believed that. In fact if you go back and read the history of posts from these groups I’m sure you will find several from me talking about it. I pray someday the cause will be found and our kids cure can be as easy as an antibiotic. 
Thanks for sharing your research and thoughts with us,



6 responses to Post Viral Acute Cerebellar Ataxia Linked to PFS – Potentially caused by Herpes Virus Infection in Cerebellum


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    I had Post-Viral Cerebellar Ataxia when I was twelve. It is most commonly caused by the herpes simplex virus (usually in the form of chicken pox in young children), but not always. In my case, it was a severe case of mononucleosis that attacked my cerebellum, leaving me with ataxia for a good six months, causing the doctors to question whether or not I would always be disabled.

    I can see how they can be linked in a sense because the symptoms are so similar, but to gain a diagnosis of post-viral cerebellar ataxia, everything else would have to come back 100 percent normal, ruling out cancer and tumors. So to have one, you cannot have the other; which means that they cannot be one and the same.

    I do hope that you find the answers you are looking for. I can’t imagine having a sick child, I know how strong you all are.


      Mono is caused by The Epstein Barr Virus Christian. EBV is another Herpes virus and I wrote most often found by Varicella Zoster, but sometimes caused by other viruses. I do not believe that if you have Cerebral Ataxia that it means you have cancer. What I am saying is that Viruses particularly ones in the herpes family are a key contributor in both brain cancer and Cerebral Ataxia. For those that have brain cancer, they have a Viral infection helping drive the tumor and that damage to the walls of the Cerebellum gives the chance for the virus to attack the Cerebellum. When this happens, they call it PFS. So I still feel strongly in my hypothesis that they are related in this way. And just like you must be EBV positive to be diagnosed with Mono, so is my son EBV positive.


    Do you have Ayden on anti virals? My son (dx July 2012) had herpes simplex 1 (coldsores), had chickenpox aged 4. Should we have him on anti virals now? He is ned thank god. He wasn’t on anti viral during treatment (st Jude’smb 003) but on strong antibiotics and anti fungal. He has only had 1 coldsore outbreak since treatment ending. I find your information very interesting. Makes a lot of sense to me. Sometimes the common sense links aren’t ‘hi tech’ enough for drs to pay attention to. Lots of mb kids seem to get shingles.


      I have Ayden on medicinal mushrooms, about to switch to a new version with more stated antiviral benefits. I also give Ayden coconut oil as well that has some anti-viral properties. Considering Monolauren (the active antiviral part of coconut oil. I research, then try it on my self first. Then I consider giving it to Ayden. I’m at that stage now. Then vitamin d3 for general immune support as well. That is the extent at this time. I’m constantly looking for alternatives. I don’t have all the answers, but the more I learn, the deeper I look only deepens the conclusions that this is a major contributor if not the key driver to the issues out kids are experiencing.


        Thanks Gary. I am convinced – I don’t believe in coincidences. I have Dylan on vitamin d and will look into natural antiviral. I do use tea tree oil for the cold sores and it is very effective topical treatment.

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