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Has Anyone Here Had Open Muscle Biopsy


Poohbear
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I did a search but couldn't find the information I was looking for.

Has anyone here had an open muscle biopsy? If so, can you share you experiences with it....particularly how bad your pain was afterward and how long the pain lasted.

I'm a little concerned....read on a general web search that people were given narcotics for pain and I don't do well with ANY pain medications. I've also read they had trouble walking for days afterward etc.

I read that you should not do any major activity or strain the muscle biopsied for a week or two after.

I'm expecting to have issues with the dressing too as I am allergic to all adhesives. They will be using dissolvable stitches and I do fine with those.

Just a little anxious and wanting some input. I can handle anything as long as I know what to expect but the Dr's office is being vague---just telling me I can't drive and that further instructions will be given that day. I live alone and don't know if I need to plan on staying with someone a day or so or if I will be fine but just in pain.

Thanks for any input or sharing your own experiences!

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I had an open muscle biopsy. Why are you having one? After I had mine, my PCP (who was not involved in the muscle biopsy prior to the procedure) asked why I didn't have a needle biopsy. He thought that you can get the same results with less pain and recovery. As for the biopsy, you definitely don't want to drive after. I felt very shaky after. Basically the doctor freezes the outer layers of skin/etc but the actual muscle is not frozen. The harvesting of the muscle tissue is quite painful. I could walk after but will significant pain and limp. As I recall, it took weeks, maybe even months, before the pain resolved. It was bearable after a few days but it really stayed with me. I am sure you could stay alone but I would make sure that meals were predone and all you had to do is microwave them. Or ideally have a friend come and stay the first day just in case. If you want further info, ask away.

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The muscle biopsy is to determine (hopefully) why I am having severe muscle issues. I have severe deficiencies in many of the things that indicate possible mito. disease or some muscle disease (these issues are way beyond the typical issues people sometimes have with POTS or dysatonomias).

I already have confirmed small fiber neuropathy from skin biopsy but this muscle biopsy is for something totally different that a skin biopsy will not give answers to.

After I had mine, my PCP (who was not involved in the muscle biopsy prior to the procedure) asked why I didn't have a needle biopsy. He thought that you can get the same results with less pain and recovery

Yes, the needle biopsy would be easier to recover from....it simply isn't an option for the tests that need to be run in my case. Needle biopsy is not sufficient for mito. testing, as well as it's not sufficient for some of the other diseases they are trying to rule out. I asked about that some time ago because it would be much easier to recover from. Bottom line I have to have "open muscle biopsy and fresh (not frozen) specimen"

I am concerned about the recovery mostly because I already have trouble walking sometimes because of muscle issues and it takes weeks and months for a simple pulled muscle to heal in my case. I can't imagine how painful healing will be when they take a chunk of a muscle out or how long it's going to take me to heal from it.

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Thanks for the replies!

Toddm, I think my Dr. is sending my stuff out to Dr. Schoffner. I have had three Dr's recommend I see him (including a geneticist at Mayo) but I don't have access to traveling there (plus he doesn't accept Medicare).

I really dread this but we've put it off for years and I really need some answers. Plus, if I get a definitive diagnosis I will have more "objective data" to fight the insurance with to cover some of the medications I need (like I.V. carnitine).

Everyone has told me Dr. Schoffner is the best and most well known for the issues I'm having. We'll see.

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That's who I went to see also, are you going to Atlanta? I know he would rather have fresh muscle to test. Knowing I have a mitochondrial disease hasn't changed how I feel, but it's still good to know what I DO have after so many years of guessing. 2009 was the year of diagnosis for me, both my dysautonomia and mitochondrial. I hope everything works out for you.

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I had one also in my upper arm as it was before my pots dx as due to my perpherial nerupathy I don't feel much. I really didn't hurt, and I remember being mad as I wanted to watch and the doctor wouldn't let me. I think he thought I would faint or something like that. LOL! They were looking for MD and it came back looking more like a fibromylgia like muscle at the time. All I have is a scar left behind which I was told I would have. Now, they are having concerns once again with the wall of my chest muscles not moving right, I hope they would have to go into the wall of my chest. : (

Bellamia~*

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