So you’ve got unexplained leg weakness that no one can diagnose and you’re having a muscle biopsy, your second biopsy in three months!
I thought there was a lack of information about thyroid biopsies when I wrote my posts about that. There is a severe lack of information about muscle biopsies on the web. So, here I am adding my experience so that someone else may find some helpful search results.
What is a muscle biopsy?
It is a diagnostic test of the muscle tissue. There are two main types of muscle biopsies, a needle biopsy or open biopsy. I had the open biopsy. It was a surgical procedure completed by a general surgeon.
Why get a muscle biopsy?
In this case, the first time I even heard of this type of biopsy was from my
My point of view in pre-op, courtesy of Blackberry
physical medicine doctor. As my left leg weakness has continued to progress and I continue to not have answers, I asked my PCP about it. My PCP felt like it may help give us some answers.
Please note that my endocrinologist has already determined that the weakness I am experiencing is not caused by my thyroid problem based on the characteristics of the weakness. My weakness is accompanied by hyperreflexia, atrophy, and gait disturbance along with some positive neurological signs that have not yet been confirmed by a neurologist.
What can be diagnosed from a muscle biopsy?
It is my understanding that a muscle biopsy can help determine whether the problem I am experiencing is a nerve or a muscle disorder.
Go vastus medialis!! Woohoo VM is #1! (This is the image I found on google images. no idea what the 1 is about)
Which muscle is biopsied?
In my case, I happen to know one of my muscles that shows weakness. My vastus medialis of my quadriceps shows weakness as I have not been able to do a lunge on the left side for at least 18 years. My left leg just does not make that movement. I told the surgeon about this and he selected that muscle.
How do you prepare for a muscle biopsy?
I received little to no information regarding preparing for the biopsy. Because I received anesthesia, I was told not to eat after midnight.
When I arrived:
I arrived at the hospital 2 hours prior to the surgery time. Upon arrival, I was taken to pre-op and changed into a gown. The nurse started an IV.
About 45 minutes before my surgery, I met with the Anesthesiologist who went over my medical history and what I would expect as far as anesthesia. I would be given a local anesthetic on my leg and a general anesthetic through my IV. The general anesthesia would make me sleepy but I would not need a breathing tube. I may wake up during the procedure (I didn’t).
About 10 minutes before the procedure, I met the team: my surgeon, another surgeon, two surgical nurses, and a nurse anesthetist. The “other” surgeon, marked my left leg and a few minutes later my surgeon checked the mark and made a new mark.
The Open Muscle Biopsy 30 to 45 minutes
I was brought in to the operating room for what was my 15th surgical procedure. The last thing I remember is moving from the gurney to the operating table and the nurse anesthetist saying, “I’m going to give you something in your IV to make you relax and feel sleepy…”
I woke up in the recovery room and the first thing I said was, “It’s over?”; second thing I said, “Was I a good patient?” (The nurse anesthetist said I was); and the third thing I said was, “I’m in a lot of pain”.
I had a bandage covering stitches and was given an ice pack. I spent about an hour in another recovery room where my husband could join
My left leg today. The incision area is about 2.5-3 inches. My dog, Tallulah, is in the background.
me. My surgeon had met with my husband while I was in the first recovery room. The summary was that I need to take it easy for the next day or so; remove bandage after 24 hours; clean wound with peroxide; can shower after 24 hours; don’t use stairs (I don’t know for how long); see the surgeon in 7 to 14 days; results will go to my PCP in 10-14 days.
It’s been almost 36 hours since the procedure. I’m in a lot of pain and having a lot of challenges walking. Prior to the biopsy, I was already having trouble walking so I doubt it has as much to do with the biopsy as it does with me. I wish I was feeling better and expected to. I didn’t expect to be in as much pain as I am.
And, now, I wait.
Filed under: Uncategorized Tagged: | muscle biopsy, muscle weakness
Wow, as always, you’re dealing with things I’ve been thinking about. I had no idea the details of a muscle biopsy, but my neuro has mentioned several times that it might be the next place to go on me. (Mine would be on my arms though.)
So sorry you’re in more pain than expected. I find surgeons are really bad at underestimating post-surgical pain. I’d rather be pleasantly surprised if it hurts less than expected than wake up hurting badly, personally. I don’t know why they’re always so bad about it.
What are you taking for pain? Have you called your surgeon to tell him/her that you’re having bad pain? Please don’t be shy about asking for something to help; studies show that adequate pain management speeds healing.
I’m wondering if the nerve block the anesthesiologist did just didn’t take. I had two surgeries on my left shoulder. The first one, the nerve block didn’t work and it was agony. (Made worse because the doc didn’t give adequate pain meds and at the time I didn’t know what to ask for.) The second surgery, by a different doc, the nerve block worked great and lasted 36 hours post surgery, which meant my pain never spiraled out of control. That surgeon also believed in adequate pain meds, which made my recovery so much easier and better.
Ok, sorry, between the prednisone ramping me up and exhaustion making me loopy, I’m practically writing a novel here in your comment section. Oops.
Anyway, here’s hoping that the pain fades rapidly and that you get helpful results from the tests.
Hi Aviva! My experience has also been that surgeons underestimate the pain/recovery process. In my optimism (or forgetfulness), I seem to always expect it to be better than it is. I was prescribed Vicodin. Do you have a suggestion? I haven’t called the surgeon yet. I’m waiting it out to see if the pain has more to do with the pain I have in my leg all the time and less to do with the surgery. I don’t know that I got a true nerve block…I had tremendous pain as soon as I woke up.
I think this all may have to do with the fact that this was done by a general surgeon not a neurosurgeon. The open biopsy was selected, I believe, because that is what the surgeon does. So far, both neurologists I have seen have not taken me seriously so my PCP was going on her own, admitted, limited knowledge by sending me to the general surgeon. We thought my physical medicine doctor would have had a referral for doing the biopsy but she didn’t. My fear is that I rushed into this out of desperation and it may have been overly invasive. I have numbness/pain all around the incision. This is a familiar sensation for me – I continue to have this sensation from my C-section 5 years ago. I have read that needle muscle biopsies can have less specific results. I’ll see what I can find out to share with you!
As always, thank you for your support and friendship. It means so much!!
Hi again!
My only recommendation for pain meds is to try to get the narcotic separate from the Tylenol/ibuprofin so you don’t have to worry about getting too much of the OTC part while getting enough of the narcotic. My current drug of choice is oxycodone, which is the narcotic half of Percocet. It’s a bit stronger than Vicodin, and if you were already having high pain levels, you probably need more pain meds than the typical, mostly healthy person the general surgeon treats.
I’m not a doctor or pharmacist so I can’t give medical advice. But how was the vicodin prescribed? My internist, who is more generous with pain meds, at least with me, than I hear most docs are, lets me take two Vicodins at once, every four hours, but the important thing is to make sure you don’t end up with more than 4 grams of the Tylenol in a 24-hour period. The last thing you need is liver failure!!
I’ve also been known to stagger my pain meds instead of taking two at once as prescribed, taking one every 2-3 hours, but still watching the level of Tylenol to make sure I don’t OD on that.
It sounds like you have as wonderful a PCP as I do. If it were me, I’d probably call her to talk about how I was feeling and whether it was something to call the surgeon about. She might also be willing to help you out with more/different pain meds since she knows you and knows you’re not a drug-seeker.
It doesn’t look infected or anything, does it? Red or hot to the touch or anything? You’ll definitely have numbness for at least a while because of the nerves they cut when they made the incision. I still have small areas of numbness on both knees and my shoulder from surgeries that were 10-30 years ago! But they’re small, and the nerves should mostly grow back, but ever so slowly. My biggest incision was on my shoulder, and I had a period of hypersensitivity that I could barely tolerate clothing on it for ages as the nerves healed. (I hope you don’t go through that! Don’t be my twin in everything!
Anyway, I’m thinking of you and hoping you’re feeling better today and this is all somewhat moot. *hugs*
Oh, and if needle biopsies get less specific info, it was probably a Smart Choice to go ahead with the open biopsy. No point putting yourself through an extra procedure and end up having to do the more invasive procedure anyway.
Hi twin! Thanks for the info. I don’t know much about pain relievers at all. I’m sorry to hear you have to take so many. The pain must be awful.
I did see my PCP yesterday. (We were thinking the same thing – surprise!) It’s healing well but she said that I have inflammation so she recommended prednisone. It’s helping a bit. Today she called me to let me know she go the report about the surgery itself and the surgeon was confident that the procedure went well. The results won’t be for a couple of weeks. I really need to do a post about the thyroid / severe weakness and hyperreflexia thing to see if anyone responds. I’m so frustrated because while I don’t know my Endo real well, i do trust him a lot.
Ok, one last question: Do you know why your doc chose the open biopsy rather than a needle biopsy? I’m guessing it depends what muscle they want to get? I think the one my neuro is talking about doing would be a needle biopsy and likely much easier on me. But maybe that’s because it’s arms and not legs? Sometimes I think I should go to medical school just so I can understand this stuff.
I just found your post . I also had an open biopsy of my left leg. I had my done on 7/27. I also am not happy with the outcome. I have lost sensation on my thigh and discomfort not by the biopsy, but to the outside of my leg. This is not what I expected. I also have the same symptoms you mention, with loss of balance and falling. My neuro doc talked me into having this procedure to get to the source of problem. Well I just found out today that the biopsy came back normal. I just want to find out what is going wrong with my body and am not happy about how my leg feels now. Have u found out your results? I have a follow up visit with neuro doc at the end of August to find out what is next.
Hi Linda,
I’m sad to learn that your biopsy brought no answers. Mine was a full 6 days before yours and I still have no results. I’m getting nervous that I will be in the same boat as you. I can tell you that my numbness / loss of sensation is decreasing day by day. Today is the first day I can cross my legs and hold my laptop on my left leg. I do hope it improves for you, too. I have worked on my balance by spending time on a balance board and my falls are a lot less frequent. Nonetheless, I still have no idea what’s wrong. Can we keep in touch? My hope is that we can learn from each other’s experiences. What do you think?
I went to the neuro doc and got no answers. Since the biopsy came back negative (which it was sent to Mayo clinic-that is why it took so long to get results) and I am still showing signs of getting worse, he suggest that I go to Loyola Hospital and see their neuro- muscular neuro surgeon. My doctor said that this is beyond his speciality. So it looks like I am at a dead end now. I have exhausted all my funds and can not pay to see another specialist.. I am one of those 47 mil people here is the USA that does not have insurance since I have pre existing conditions. I called the social worker at Loyola and they had no suggestions on getting help to pay for treatment.However they did wish me the best of luck…so nice of them!!!! I just have to take one day at a time and be very careful. Hopefuly you have gotten some answers that may shed some light on my condition. Hope to hear from u soon
Oh Linda,
I’m so frustrated for you that you still have answers. Ugh. Ugh. Ugh. I am sorry to hear that you do not have health insurance, especially while you are suffering. I am shocked when I see my medical bills, even though I only pay a portion. Are your symptoms being treated so you can have some relief? I don’t know your personal situation and don’t want to get into it here publicly, so please send me a message to sickysickeron (at) gmail (dot) com. I’m sending you many hugs.
Hi Linda,
I just read your post and I had an open muscle biopsy on the left quadriceps on 07/29. I too am still waiting on results and have been told it could take another 2-3 weeks before the results are in. I too have had problems with walking but this was going on prior to the surgery. They closed mine with steri-strips and I have had problems with the top of the incision closing as it should. I was also told the open biopsy was necessary to determine inflammatory muscle disease. I have been able to control the pain with meds.
Sorry to hear you having trouble with your incision. I am still have that numbing pain on the side of my leg. When I went to the neuro doc he said he is unsure if it will go away..only time will tell. I was not happy to hear that , plus to realize that the biopsy showed nothing and he can not help me any more. I am very frustrated and upset to get no answers. I am at a dead end now which is not a good feeling..I wish you the best and hopefully you will get some answers. I am just too tired to think about this any more. Just not happy
Glad to hear back from you. I would love to keep each other informed on how we are doing. Once you hear your results please let me know . I have a doctor appointment August 27 with the neuro doc, I will let you know what the next thing we are going to do
Personally know several (including me) people whose leg muscle weakness was caused by a sensitivity to Splenda (aspartame) sweetener. This was actually figured out by a lady who decided that there must be something in her lifestyle that started her problem-she had started using Splenda some weeks before the problem started-she stopped it – about 2 weeks later-symptoms resolved – she waited a month and restarted – again the symptoms – her own rather scientific study- I tested it the same way – and had same results – as did several others. Splenda is a neurotoxin and sensitivity to even small (FDA allowable) amounts can be quite troublesome. Just the end of July or early Aug – FDA declared saccharain the safest of the sweeteners-however-seems everything “sugar free” is aspartame. Hope this might help someone.
I just had my biopsy done last weds. OMG so sore.
Good Luck
Hi there, I hope by now you are feeling a little better. Wasn’t it shocking thta no one told you in advance how sore you’d feel?!?! Luckily, the soreness does go away eventually. I’m still a little numb in the area but I’m fine with it. I’ve had so many surgeries, I’m used to the scarring/numbness. Keep in touch with how you are doing and best wishes to you!
Did ever get ur results. R u being treated for something
Hi Linda, my results were strictly signs of muscle wasting (atrophy) and since then, I’m still a puzzle but getting closer to tx I hope due to tentative dx of Sjogren’s w/ neurological involvement. Any progress with you??
I hope someone sees this post. I can see that it’s been almost a year since anyone has posted.
I am about to have my muscle biopsy Monday the 25th of April 2011. I don’t have much information either except that my recovery time will be about 2 weeks. I am pretty worried and scared now reading all of this. I am a stay at home mom with 2 babies and my 2 older girls go to school and my husband works. He is the only one working and he is a supervisor so it’s not easy for him to take off for too long.
What can you all tell me about my recovery and if you believe I may need some extra help for a while? My husband has only put in for 2 days off work. Is that enough or should he try the whole week at least? I’m a nervous wreck because my babies are so attached to me since I’m home with them the most. They are 3 yrs and 2 yrs old. Boy (3) and girl (2). So nervous.
By the way, the reason for my biopsy (send by my neuro) is to look for Mitocondrial diseases. My story is Loooong and extremely frustrating. This is the first time a doc is actually taking the time to run tests and look for exactly what is causing all of my symptoms which I’ve been experiencing since I was about 11 yrs old. I’m now 34. Go figure…
I hope someone sees this and replies to me. Thank you so much.
Hi Liz, wow your surgery is soon! I’m so sorry to hear of your difficulties. You will find that there (unfortunately) are other people in the same predicament – no answers to their health questions for so long. It is incredibly frustrating but somehow comforting knowing we are all not alone in this battle to live a better life. It is especially challenging to go through all of this while you are a mom to small children. Oh – I do hope you have some help no matter how quickly or not so quickly you may recover.
I’m not qualified to say how long your recovery will be. I can tell you that I had a biopsy of my vastus medialis and a week later, I was at a work conference.
Best wishes to you and your family. Be good to yourself. -Q
I had a muscle biopsy of my right leg this past friday. I was in and out in less than 2 hours. The actual procedure was not as bad as I imagined. I was told I could go to work the next day, because I have a desk job. I trird go explain to the dr. that I literally have to walk a mile to get to my desk then that same mile back and forth for break and lunch then to leave again. He cut me off. By the time I got to my desk I was crying. Its not even the muscle that hurts its the incision. Y dont they give us crutches? Hope I make it next week:(
Getting the results from my muscle biopsy tomorrow. The procedure was painful-even after a ton of meds to numb the area in my thigh. But it has healed up well and no after effects so far after two weeks. Tired of waiting for the results but hope to get some help in determining what is causing the weakness in my legs. Having to use a walked and it has stopped me from doing just about everything I’m used to doing. Even going shopping is a HUGE choir for me. Scared I’ll fall and really hurt myself. Did not swim over the summer, no hiking this fall in the North Georgia mountains, scared to death of cold weather as it makes me even weaker. And forget going out w/ sleet or ice. Impossible. I’ve turned into a Nervous Nellie about doing so many things. My life is on hold. Will hopefully get some answers tomorrow…
Hello everyone! I had my muscle biopsy done on October 7th,2011 in my right quadriceps. It is painful, but tylenol and advil help. The hardest part is being in the same position for any period of time and then trying to move.
In my case, the episodes started with diplopia, weakness and numbness in February 2010. I have had 3 hospitalizations since then. I’ve been worked up for Lupus, Lyme, Sjogren’s, MS, Myasthenia, etc. Nothing conclusive.
I can’t wait to get the results of my biopsy. I think the doctor said the end of next week.
Wishing you answers and swift treatment! Take good care.
Hi Marcia,
Did you get your biopsy results? I have the same symptoms as you and my neurologists is pushing for muscle biopsy as next step…. Hope you got your answers.