(Visit www.Neurohelpblog.wordpress.com for images to be uploaded from MRIs) 

 

I am a twin sister of a patient who received exploratory posterior fossa surgery by a doctor in Atlanta not many years ago. She was not herniated, but complained of symptoms similar to Arnold Chiari Malformation. Attached video shows thoracic web surgery. More can be found on YouTube. You can see, though technical, any neurosurgeon can do it.   

 

We have syringomyelia, and have been repeatedly told our brain scans are normal. However, there is a defect that causes a pathology in the arachnoid space leading to what is known as arachnoid web. Current literature seems to only document it in the thoracic, called dorsal thoracic arachnoid web. http://radiopaedia.org/articles/dorsal-thoracic-arachnoid-web  

 

(You can also find info on webs in Chiari Patients)  It cannot be seen on imaging studies, but causes damage to surrounding tissue. In the spinal cord, myelopathy can progress. Miraculous enough, once this web is removed, which is like cutting away a callous, the myelopathy often recovers entirely. Such was the case of my sister whose pain diminished by 99 percent.     

 

When I went to the NIH for initial evaluation for a study regarding the syringomyelia, the lead doctor showed no interest in operating, despite my twin's surgical findings. I have recently studied the thoracic scan performed at the NIH and can see that they missed an obvious sign of a possible leak from what could be a second web in thoracic --images are now posted at www.neurohelpblog.WordPress.com  Arachnoid webs are under-studied and most have never heard the term. Although the arachnoid has a web-like appearance and tissue paper texture, the pathological web is a thickened band of tissue. It is a variant of a cyst, but instead of collecting fluid like a cyst, it interrupts flow, increasing pressure and chronic insult to the surrounding organ.

 

In Chiari Malformation, arachnoid web can often be found in the median aperture.  * *  My sister's surgeon is unwilling to publish a report on his findings, and this is why I am reaching out to the medical community.  *  *

 

  The NIH recieves tax payer dollars and should be willing to operate on me for the greater good. Chronic pain patients may benefit from this, as new techniques in imaging and diagnostics may be geared toward looking for better indicators of the arachnoid web and chronic meningitis.  * 

 

No patient should have to wait until they are on a ventilator, or in a wheelchair, or dead during autopsy for family to know what was the cause of their pain and CNS disease. *  *  

 

The web in my sister was in the posterior fossa (technically from obex down into cervical). I have documented sluggish flow in base as well as the thoracic. The pain is too much to manage now, musculature is like tetinus or rigor mortis, and I need your help.  * * 

 

  Being unimpressed with what I saw while at the NIH, (just due to the conservative nature of investigation) I am open to any neurosurgeon taking this case as long as a report will be submitted to the AMA.*   

 

 My cerebellum is hypoplastic, the NIH radiologist at least thought. I have also been diagnosed with mega cisterna magna, but one doctor now thinks my cerebellum has degenerated, yet he is unwilling to operate.    

 

 Though I have been given a CT contrast cisternogram, no one has approved my request for csf cell count, differential and culture. I have a history of meningitis and Lyme disease, but I believe the damaged cerebellum would show up in the cell count with elevated red blood cells. *  *    

 

These cerebellar conditions of atrophy (commonly misdiagnosed as hypoplasia) mega cisterna magna, might have a new cause. Posterior fossa/median aperture arachnoid web, or "indurating tissue." We could save lives and prevent needless suffering.   * *

 

Such neural tube defects are associated with ehlers danlos syndrome, which is what I have been told I also have.   * * 

 

I have suffered for ten years, and I have lost my twenties to immobility and poor sleep. I have symptoms of spontaneous csf leak, which is associated with the web and indurating meninges. Muffled deafening, tennitus, and worsening of intracranial and spinal pain immediately upon taking an upright position. I also have vertigo. The pain now feels like I was struck with a baseball bat to the back of the head, or injury from sulphuric acid.  

 

 Before placed on tizanadine Zanaflex, I suffered from life threatening insomnia monthly for at least three years, receiving sometimes just a total of a week sleep any month this happened. Often getting 30 minutes every third day. OTC sleep aids and prescriptions like Xanax, trazadone, ambien failed to work.   

 

This was from the intensity of pain and contracture as well as perhaps complication of intracranial pressure in hind brain. Tachycardia bouts persist during swelling events of meninges. No meningitis seen on MRI but likely chronic meningitis.  *  

 

I am 29, 30 this November, and I sleep using dapends diapers. I am running out of time, and I have seen first hand how broken the health care system is. Due to under acknowledgement, proper pain meds are moderately withheld and suicide becomes more tempting every week. *   

 

You can see how urgent this matter is for me. Instead of fighting for pain meds, I rather be cured like my sister. But it's been ten years now. Migraines from childhood even, suffered too long and there is no quality of life left  * * 

 

  If my condition improves, I can get back to work, which includes writing fiction novels. I can also finish an autobiography, work toward bettering healthcare and animal rights, my passion and drive. * *  

 

I have been disappointed and disheartened by many surgeons at consults. The NIH had a rare opportunity when having me at their facilities, and for the sake of potentially millions of future patients, my surgery needs to be documented and published.  *  

 

  If you sign this petition, it will aid my call for help to reach potential surgeons in the U.S., but it might be enough to even give a new perspective to our national neurosurgical research team.    

 

Please contact me if you are interested in taking my case, all records can be forwarded    Please help.