After years of searching for the cause of severe headaches, acute pain in head, neck, back, My recent MRI has concluded a diagnosis of a rare brain disease. Arnold Chiari Malformation type II, with a 20mm herniation.

My question is this:

After consulting with a NeuroSurgeon and Neurologist, both have recommended surgery as an only option for relief. I have found the risk to be rather significant and I have been unable to find a Specialist in these fields that would compliment both diseases with such experience.

To date, I've yet to find anyone who has undergone this surgery that is also hiv poz. Or anyone who has performed this surgery this is hiv familiar.

Can you give your thoughts, assessments, suggestions, and/or reference for an HIV familiar Neuro Surgeon? Or Gen. info. on Neuro Surgery in hiv poz?

I would be most grateful.

Excellent questions. In a general sense, people with HIV can tolerate surgery extremely well. Much depends on your general health and CD4 count. If your CD4 count is pretty good, say over 350, I know of no evidence that you would have more problems with healing or infection than negative persons. If you have low CD4's, poor nutrition, or other OI's, the situation may be difficult.

Surgery to correct a Chiari tye II malformation is pretty involved surgery. In my mind, the two key issues are: 1)to be sure that the surgery is the right approach for your headaches. I would probably get opinions from 2 neurosurgeons. 2) You want to be sure you have found a neurosurgeon who is an expert in this type of surgery, since relatively few surgeons have done many of them.

The next issue is to make sure the surgeon is comfortable with HIV positive persons. I would get your HIV doc to be available to answer medical questions about the treatment.

The type of neurosurgeon you are looking for is likely to be at a major University medical center. Start with the centers near you. If you are near Salt Lake City, I can give you a recommendation by private email, but that may not very convenient.

Once you get a recommendation for a neurosurgeon, you could check with the HIV clinic to see if they feel the surgeon is HIV friendly. Things are not as bad as they used to be.

Good luck

ATP