sural nerve biopsy

[irishponies]

new rheumatologist is DEMANDING a sural nerve biopsy.

Research found in NIH 2024 has shown many side effects 1. infection 2. long term healing 3. phantom nerve pain sometimes permanent 4. no feeling to outside of left ankle, little toe, bottom of foot etc. 5. extremely high costs 6. requires extremely well trained lab staff (only 1 biopsy!) 7. 60% of time biopsy is not relevant to diagnosis/change of diagnosis and more ncbi.nlm.nih.gov/books/NBK5...

I am refusing biopsy due to having been on high doses of prednisone for 3.5 years and have a healing issue already. 1000mg of rituxan every 4 months for total of 20 infusions. I want to KEEP the feeling in my left foot.

doctor prescribing this quit and moved out of the country

I stopped the infusions as of Nov/Dec 2024 due to doctor stating I appeared "toxic and I don't know if it is the infusions or the diseases."

Prednisone has been reduced from 20 mg daily to none.

Has anyone had a sural nerve biopsy? This doctor says she has "ordered 100s" but could not answer a single question regarding infection or healing time or side effects saying "you have to talk to the surgeon."

All surgeons (17) contacted have refused to do the surgery due to possible complications. No lab will accept the biopsy.

I am being refused treatment of any form unless I submit to the biopsy. I refuse due to the many long term, serious side effects.

Any comments will be appreciated. I am beyond confused at this point. And also, very sick. Thank you for your time.

[Chezvous]

I had one and I now have a numb foot and ankle. The biopsy showed that I had damage done to the myelin sheath but not from vasculitis. I really don’t think it was worth having to be honest because it is very annoying having numbness

[oldtimer2]

You need a different specialist. Or some negotiation - can you write to her to explain your concerns and ask for a different course of action? If not, you need to find someone else.

Investigations and treatment should be a discussion between the professional and the patient. Anyone so dogmatic (if she really is?) should not be practising medicine.

[2534]

yes I have had a sural nerve biopsy at the Nat Hosp for Neurology in Queens Square. It did reveal the info that led to my diagnosis and I have been in the right direction ever since. I did not have big ulcers but lots of little ones on my legs at the time but that wasn’t a problem. It was held in an operating theatre so hygiene at a maximum.

One little thing that I was grateful for was that my consultant requested a long piece of the nerve ( from memory 1 1/2 inches) as he said if it is too small a sample, you can miss what is actually there. When the nerve was cut there was a flash of pain but honestly overall it wasn’t a big deal and no subsequent pain. Really, really worth doing. It gave certainty to my diagnosis and treatment.

Tiny thin scar which feels numb in the freezing cold but no big impact on my feet. My symptoms were all over the place at the beginning, quite crazy but the consultant and the sural nerve biopsy and subsequent treatment marked a big turning point

Good luck. I wish you well xx

[irishponies in reply to 2534]

Thank you so much for such a detailed comment I really appreciate every single word thank you very very much. They are suggesting not a one and a half inch but a five plus inch sural nerve biopsy and that is not the problem the problem is the infection due to the long-term use of prednisone and several years of rituxin.My immune system is all but crashed, and has crashed with hospitalizations from infections. I even had a 104.2 temp, 7 sqaumous cell cancer removals from my face, lung tumors, the doctors say I am highly suspectable to ALL cancers, breast, basil, colon, etc. and the ability to fight off the infection from such a large hole in my leg from a 5 inch sural nerve biopsy would be quite long and difficult. I do not want my foot amputated. The wound clinic doctor that is in charge of my care said absolutely not you cannot have a several nerve biopsy you will be on crutches the rest of your life your leg, will not work, it willhave a large infectedhole. The dermatologist that has been taken care of all the cases of cellulitis that I get says you will have constantly this is not something that we will be able to take care of this will be a long-term very long-term very difficult to take care of infection. This is not the sural nerve biopsy right from the beginning of the symptoms of the disease. This is 4 years later from the suspected diagnosis. I asked the doctor, she did not know, or did not play smart when I asked her how many people got infections and long-term healing issues. After all, she repeatedly bragged about ordering 1000s of these tests. She should have AN ANSWER!!! She had said she had ordered hundreds of these tests and when I asked her how many of these folks got infections and had long-term healing issues and had Phantom shocks she said I have no idea you'll have to talk to the surgeon about that that has nothing to do with me. Really, didn't you order the biopsy??? I immediately lost any and all trust in that woman, to lie to me and say I have done hundreds of these but I don't know anything about what happens to the patient afterwards. You're just a patient, go away little patient, you're bothering me. You're just something for me to do and I just want the paycheck go away. What an awful little person she was just awful. She spoke to me like I was so stupid. I had read and took detailed notes from hundreds and hundreds of pages of research of these diseases. She acted like I had no idea in the Man in the Moon, I was just a stupid patient. I was very upset with her for treating me like a complete idiot. I would love to not see her but there are almost no rheumatologists in which to see and never mind specialist that treat vasculitis she's the only one out of eight in the county so I am stuck so we shall see what happens. But I will not be doing a sural nerve biopsy that requires long-term infection and long-term treatment for care. I would like to keep my left foot thank you very much. Not you thank you very much her the doctor thank you very much she acts like losing a foot is nothing. Oh well, she'd say, you lost your foot too bad so sad. Again, Thank you for listening and thank you for an excellent comment. It is greatly appreciated, take care be well.

[2534 in reply to irishponies]

Hi there. These conversations sound horrendous. I think many in this chat would have experienced confusion at the beginning of their illness. We then found suitable consultants and our lives improved. I have to say consultants hate patients who talk about all the research they have done and think that they can then command the consultant who probably had long years full time in training and clinical experience. It’s good to research but could I suggest you just ask the main QUESTIONS only, just 2 or 3, that arise from your research which are most relevant for this particular consultant and which trouble you most.

If you are not satisfied with your current consultants you are absolutely entitled to ask to be referred to another. I think many here would have experienced huge frustration with rheumatologists. Have you thought of consulting a neurologist for example? They might be more knowledgeable about the pros and cons of an sural nerve biopsy. Plus you could ask to be referred to a vasculitis specialist. Perhaps you could get the name of one near to you from Vasculitis UK before you ask for a referral.

Sorry that this is such a nightmare. And I hope you get some proper help soon

Take care

[orthotist]

My God, sounds like something from a horror movie.Dont know enough to help much,but I have recently been taking the antioxidant resveratrol as its anti inflammatory this is against my specialists advice but am convinced its helping.my rituximab infusions are months overdueSometimes specialists can be far from special .hope you can get better help