help doctors do not know whats wrong with me

[spencerjr]

I need HELP!!!!!!!

I am a 31 year old African American man with health issues that my doctors can not find or better said diagnose. I have been having this problem for years now and I hope that you can help me or at least send me to the right kind of doctor. Here is the story:

It all started about 5-6 years ago, back then my hair was very long and I would get it braided. So in order for my hair to look good, I had to take the necessary steps in its up keeping. One night before I was to get it done I washed it and did a hot oil treatment. The oil was a little too hot and burned me on the side of my head. I shook it off and thought nothing of it. A few weeks later I notice a small sore on my head. It would come and go then finally went away for a long time but my hair in that area started to fall out. So being that at that time I had no money for insurance to go to a doctor and the local free clinic didn’t give a hoot unless you had an STD (which I was tested for and came up negative), again I said "...well maybe this is Gods way of telling me to cut my hair :).
Anyways I move to Houston and started working for a major computer company and got insurance. By this time more symptoms begin to pop up. Sores on my neck and scalp that itched like crazy and a mild weakness on the right side (same side as the burn) of my body. Then it got worse, being very weak and numb in my right hand, I began to walk with a slight limp, and the sores never went away.
I had all kinds of test and scans done. They did find a tumor in my head at the base of my skull and I had surgery and had it removed. Now before you say "well that was the issue", I neglected tell you that I have a mild birth defect call neurofibromatosis type 1. The tumor was one of the neurofribromas. Now during the surgery my surgeon did say he had to drain a large cyst below my scalp.
After the surgery my symptoms began to get worse. My ears itched and always had fluid in them (anther symptom). My hand got weaker and number. I bean to feel and "hear" a liquid moving in me on my neck and scalp.
Went back to my PCD and they took swabs of the sore and it came back as staph. I went to an ENT and he took samples out my ears and he said “a fast growing bacterium I have been on all kinds of anti-biotic and they only work a little then the itching and puss in the ears come back.
Now I'm at the point that my right hand can barley feel anything and now my left is going down the same road.
I’ve been to my PCD, an ENT, a Dermatologist, and a Neurologist all they do is take samples and say staph and prescribe antibiotics. I have an MRI with and without contrast, CT scans, and x-rays and they never see anything. (But the weird thing is that when I got the scan for the tumor, the cyst that the surgeon told me about didn't show up either. I do not have any other disease, I’ve been tested for AIDS, syphilis, etc and came back that I’m healthy so if any of you has a clue on what I need to do please help.

[Dr. Joshua]

Thanks for your question. You describe a complex medical history and multiple symptoms, many of which at first reading seem unconnected. You have been seen by the proper specialists, so I'm not going to second guess your own doctors.

As I do not have enough information to comment specifically on your case, I'll provide some general talking points that might apply to situations somewhat similar to yours.

There is one possibility that comes to mind, although I'm sure your doctors have taken it into account. I don't know what the location of the tumor was, when the surgery was done, nor the exact timing of the onset of your current symptoms in relation to the surgery, but generally speaking, sometimes, after skull base surgery, there may occur a persistent CSF (cerebro-spinal fluid) leak into the air cells inside the skull bones, which are connected to the ear and the nasal cavities. This can result in CSF drainage to the inner ear and/or nose/pharynx, and may cause symptoms that are somewhat similar to those you describe. Feeling of liquid moving in the head, fluid leak from the ear or nose, or fluid leak into the pharynx can all occur, and sometimes the situation can be complicated by meningitis (infection that involves the structures surrounding the brain).

Whether the fluid is CSF or not can be specifically determined by testing the fluid for beta-2-transferrin.

It is not up to me to try to determine the cause of your symptoms, and while the above described scenario is theoretically possible, it has most likely been taken into account by your own doctors. However, it the only thing that immediately comes to my mind that could theoretically explain some of your symptoms and perhaps it is something you may want to run by your own doctors.

Then there is the issue with the hand numbness. Again, I can't say for sure, and I don't even know the location of the tumor that was removed, but I'm assuming from your description that it was somewhere in the skull base. If the surgery required retraction of brain tissue, it might result in symptoms of numbness or weakness that may persist for a long time, or even permanently.

Please understand that I am speaking in general terms, and I cannot specifically comment on your illness because I don't have all the necessary information. Talk to your own doctors about your concerns, and feel free to ask about the above possibilities - they will be able to explain whether these possibilities apply to you at all or not.

Keep us posted!