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Avatar universal

Doctor is in? nerve sheath tumor forum said here....

Neurology site/forum said a doctor would be here that MAY have something to say...? about this:

My biopsy of nerve sheath tumor said positive cd3 t cells and cd20 positive B cells...they want to redo it with ancillary studies such as flow cytometry etc. Doc said maybe remove it and see what it is. ??? Surgery can cause risk of chronic pain no med or other treatment can help. Am looking at alternatives like matake mushrooms...yes I know...not the best idea. But when I google these cells I cannot understand what they are saying. I'm not a doc or scientist or pathologist. Maybe if I understood more.... Yes I am seeking a second opinion.  But would like to read and understand what I have! Can anyone help me understand my biopsy from reading online? That way I can get several opinions/readings of the subject. Thank you.
6 Responses
642304 tn?1242606724
What this tells me is that you have immune cells associated with your nerve biopsy.  The simple explanation is that the immune cells are attacking something on your nerve cell or nerve sheath tumor or on tissue sheath covering your nerve cells.  This could be an autoimmune reaction or a reaction to infectious agents in your nerve cells or a reaction to the tumor.  Most nerve sheath tumors of this type are benign—they will not kill you but they can make your life unpleasant.  

Surgery can remove the nerve sheath tumor (if it hasn’t already been removed when the biopsy was performed), and there should be no lasting effect.  However, if chronic infections are also involved, then the pain and peripheral neuropathies may continue after surgery.  If this occurs, the infections can be identified and treated.

This is not a second opinion, it is just some information that might help you.
Avatar universal
I thought it was the surgery that could damage the nerves causing chronic pain.
I never thought of infection causing pain as well...but that wouldn't be chronic (would be treated) right?

I got biopsy now...says that fragments of fibrous tissue with scattered small aggregates of mature appearing lymphocytes. Also a mix of cd2 positive t cells and cd20 positive B cells. No significent staining for cd30, ae1/3 or s100.  

They suggested further testing such as flow cytometry if lymphoproliferative process is suspected. That I do not understand. Why would this be suspected?

Sounds like I can do another biopsy or have it out risking chronic pain. I say if they did it right the first time it would be conclusive now.
I don't want to wait and watch...if it's cancerous it can spread fast and 'prognosis is poor'...doesn't sound like I want that...  I am confused.

Any words of any kind would be appreciated.

Thank you so very much.
642304 tn?1242606724
I don't think that you mentioned that your chronic pain was treated with other than the usual drugs.  The process that you described doesn't sound like a lymphoproliferative process--it sounds more like an infectious generated immune process that could be autoimmune in nature.
Avatar universal
Hi I am 38 and until last year healthy mom of teo boys. I had4 week cough,occasional abdominal pain, then late period and contipation .  All started like October. In February had blood in urine andflu. Went to doctor and learned I had lost a few lbs and went for cystoscopy and cat scan uro.  My symptoms since feb include weight loss 30 lbs... Thigh aches, upper arm ache, twitching, white tongue with ulcers frequent urination burning urethra and private area.  A few others.  Cystoscopy showed inflammationno bacteria.  I had a inflmed hard node removed from back ofneck... Contained histiocyes,no lymphoma, only abnormal lab is elevated iga and anca mpo(18) I have had colonoscopy,endoscopy,cat scans,MRI.  Cat scan said scattered sub centimeter nodes throughout, and brain had small peripheral calcification, MRI showed nothing on brain.  Also abdominal pain under rib cage and lower back ache.  Nauseous often.  Not really good appetite.  Any ideas...
642304 tn?1242606724
In your diagnosis was bacterial infection(s), and your signs/symptoms are consistent with infection.  This could be the cause of your problems. Now you need to find out what kind of bacteria so your condition can be effectively treated.
Avatar universal
Thanks. Will consider this with my doc. I know it's not a diagnosis. I do appreciate the info. Thank you. Lynne
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