Viewing 20 posts - 1 through 20 (of 25 total)
  • #73439
    Petrified (more than he is) about muscle biopsy

    Tomorrow my partner is going to the hospital to have an MRI. I enquired why he was having an MRI (he’s not someone to go get any x-rays etc. for no reason) and he told me that his specialist has asked him to have one so they can determine the best part of his leg to take a muscle biopsy from. He is anticipating the biopsy will be taken next month, but as soon as he told me he was having a biopsy done I went to jelly and started sweating.

    We have been together for close enough to 9 years, and I always thought he had been officially diagnosed with LGMD, but now it seems ‘that is what they think he has’. Clearly the type of MD he has will have a huge bearing on alot of decisions we make.. if he doesn’t have LGMD the most likely is BMD, but apparently the doctor is pretty sure it’s LGMD.

    Why am I so scared? He said he was worried about it, but now that it’s imminent, he’s not. I pointed out to him that whatever type he has will affect hugely our options with having kids.. I suspect this is one reason why he has decided to find out for sure. We want to get married and have children, and he assures me that no matter the result “this is 2011, we’ll work something out”. Clearly it would be difficult for me to look after a husband and children with MD, so I am hoping for a positive outcome.

    I love him more than words could ever express, and I want to be strong for him.. I feel like I’m being a little selfish.. I don’t think I’m actually asking a question, but just expressing my feelings to people who may understand. Thanks for letting me share.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78629
    Re: Petrified (more than he is) about muscle biopsy

    The Muscle Biopsy is always a difficult time. It is human nature to worry about it.

    It will though give the specialists the vital information they require and tell you exactly
    where you are.

    In my case it ended years of not knowing and unlocked so much help that I look
    back on it with pleasure. The very next appointment I was introduced to CS, a
    Neuromuscular Advisor “who will help you manage your condition”. Within two
    days CS had visited my home and assessed the situation and arranged for specialists
    to visit and help me. Falls Prevention Service, Two different sets of O.T.’s, Speech
    and Lauguage Therapists, Dieiticians, Pysiotherapists. They were suddenly
    giving me all the help and support I could possibly have wanted. They found
    other issues that I did not even know were related problems and solved those.

    Do not worry about the Muscle Biopsy, it will really help you all.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78628
    Re: Petrified (more than he is) about muscle biopsy

    Funny thing is, he already has all the support, just not the official diagnosis.

    He has several OTs from several places, he receives home care, he did have physiotherapy and is getting back into hydrotherapy.. he is currently consulting a posture specialist and a travel specialist (to see the safest way for him to travel independently), and is also being given lessons by, for want of a better term, a social educator.

    He was seeing a naturopath, and we have also consulted a dietician and a speech pathologist (for swallowing).

    He’s had the MRI now.. so we’ll wait and see what happens. I just have to psych myself for his biopsy. Thanks for the support!

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78630
    Re: Petrified (more than he is) about muscle biopsy

    Hi!
    I’ve recently had a biopsy and it has proven very helpfull in pointing the neuros in the right direction.
    I do have some advice though, don’t believe them when they say it doesn’t hurt! It hurts like HELL!!!
    As they don’t numb the muscle itself only the skin! I’ve had 4 kids & believe me it hurts! They don’t like to tell you incase the patient declines it as it’s soooo important to aid diagnosis. Many people diagnosed years ago have their diagnosis revisited as techniques & knowledge improve. If your other half has a wheelchair use it! I couldn’t walk at all for days after and if prepared properely, told in advance how disabling it can be I would’ve taken my own wheelchair.I needed a cane for weeks after, I’m still not right still bruised and painfull, numbness in surrounding area and muscle doesn’t work properely! But heyho it’s worth having done! No pain No gain as they say!
    They are doing further biochemical tests now as initial results are abnormal.
    It is definately worth having it done for your future childrens sakes. That is partly why I had it done as my beautifull baby girls (18&14) have simillar symptoms. So if I have it done they won’t have too! We will know what it is for sure and how to deal with it! Plus Im not likely to be wearing minis at 40! Lol! And it does leave a 3/4cm scare!
    I had an MRI of my brain and spine too but I’ve not ever heard of an MRI for the leg, site of biopsy? I would ask the neuro to be sure of the reason for the MRI?
    I hope all goes well, goodluck for the future and blessings on your children! X

    best wishes Michelle

    Shellybear
    Participant
    Posts: 364
    Joined: 09/12/2010
    #78631
    Re: Petrified (more than he is) about muscle biopsy

    On the main MDC site there is a very full guide on muscle biopsy :-

    http://www.muscular-dystrophy.org/how_we_help_you/publications/1924_muscle_biopsies

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78632
    Re: Petrified (more than he is) about muscle biopsy

    Do you have a date for the biopsy yet? Please let us know how things go.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #78633
    Re: Petrified (more than he is) about muscle biopsy

    Thanks all for your support – we’ve had the MRI but don’t have a date for the biopsy yet. Still trying to get hold of his specialist to even find out the results of the MRI!! He’s proving very elusive.

    MRI was apparently done to ‘find the best site to take biopsy’ – did both sections of both legs (ie below and above knee).

    Michelle – he has been told exactly that – that it won’t hurt. I hope that for his sake they aren’t lying, because I guarantee that if he knew that, he would pull out. He is also concerned about it causing long term damage and further muscle degeneration at the site of the biopsy. His cousin (who has also been diagnosed with MD, but not sure if it’s the same type or not – she has different symptoms and progression) won’t have one done because she has been told that it can progress the disease quicker.. I hope she’s been misinformed. I think that is something he is going to ask his specialist about anyway – whether it will have an adverse effect on his muscles.

    With regards to using the wheelchair after biopsy, he doesn’t really have a choice anyway. He is already dependent on a power wheelchair and has been the whole time I’ve known him (nearly 10 years) and long before that.

    Thanks for the link to the fact sheet – it seems to at least alleviate some of my fears – they mention that it doesn’t cause further wastage of muscle. He does not want to have the biopsy done in the public system here – he fears a lack of care and a greater risk of infection, so it will take a little more coordinating as his specialist works in the public system, but hopefully we can find a hospital in the private system which can assist with the procedure. I will prompt him to find out whether the procedure will be an ‘open’ or needle procedure.. both seem to have their benefits. I have a feeling that he is looking to have the needle one done. This may have less side effects, but I understand that it heightens the chance of requiring a second biopsy.

    Hopefully he’ll get hold of the specialist tomorrow and we’ll see where we’re progressing from there.

    Thanks again everyone – we very much appreciate your help!

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78634
    Re: Petrified (more than he is) about muscle biopsy

    Reading your fears about the muscle Biopsy, this is exactly how I
    felt before mine on 20th January last year.

    Just to say, I was worrying needlessy and it was much better than I imagined.

    It was the open biopsy and it was done very quickly and efficiently and seemed
    to be under completely sterile and professional conditions (NHS hospital). They
    have an amazing implement that does the job very quickly indeed. There is
    a sharp sensation of pain but not as much as I was fearing, then it is over. It
    was done three inches above my right knee and left a tiny scab. The actual
    sliver of tissue is incredible tiny and thin and the scab was 6 mm long by
    1 mm wide. I was resigned to a tiny scar but a year on it is impercebtable.

    This is my experience, no idea if this is typical but hope it helps you
    or anyone else worried about biopsy.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78635
    Re: Petrified (more than he is) about muscle biopsy

    well I have had 2 biopsys done. I have a 3″ scar in the inside of my leg above the left knee and another much smaller one at the top of the left leg about that 1cm in diameter.

    Didnt have any pain during the larger open biopsy, after marking the area with pen, they numbed the area and then confirmed the area was numb using some sort of electrical pulse machine. I was awake they whole time as the purpose of this second biopsy was to confirm that I didn’t have the alergy to aneasthitics common in MD, so that I could have spinal fusion. Was aware they were indside my leg and the rubber weight they put on my leg to stop the leg moving but it was ok. I was up and about within a couple of hours and was able to travel home from St James in England back to Glasgow the next morning. Was about 15 when I got this one done.

    The smaller needle biopsy, (my first) was quite traumatic for me. I was about 8. they put the same cream emla on the area they use for putting IV lines in and it only numbed the skin, I found this the most painfull of the 2 but then I was only about 8. The same day they also did another test (do not know the name) where they put electrode into my legs to test muscle movement or something. So a very traumatic day for an 8 year old.

    take care
    cat

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #78636
    Re: Petrified (more than he is) about muscle biopsy

    So just an update for everyone.. this Thursday just gone we spent the day in hospital having muscle biopsy done. He was given at least 3 opportunities to pull out and I’m so proud of him.. he didn’t even consider it.

    So now we’re dealing with the aftermath.. we can’t use the hoist/sling, as despite being told by the neurologist that the sample could be taken from the calf, surgeon said otherwise, and sample ended up coming from about outside right thigh, about two thirds of the way up his leg (closer to the hip than the knee). This is right where the sling would push if we were using it, so at the moment his dad and I have to co-ordinate to have one of us there to manually transfer him (lift him) onto wheelchair/commode/bed, avoiding his wound. This is difficult to facilitate as we both work and if we don’t do it, then his carers can’t do anything (obviously with a no lift policy).

    He’s still in a significant amount of pain and is very hesitant to move his right leg at all (which isn’t going to do anything for his already compromised circulation).

    I guess now we just await the results and hope this wasn’t all in vain. We’re told there is a 75% chance of a diagnosis.

    Scar looks a little nasty (about 3cm long with a small cross cut at the bottom which is about 1cm long) and I’m trying to work out now what we can put on it and when, to heal the scarring. I have bought some rosehip oil, which I understand to be good for scars with so much vitamin E.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78637
    Re: Petrified (more than he is) about muscle biopsy

    Thanks for letting us know.

    Glad it is all behind you and well done for going through with it. It
    is just always going to be a difficult time.

    It will be sore for a time but it will heal very well. After 14 months
    I can hardly find my biopsy site.

    Did not know the 75 % figure. That has to make it worthwhile
    that you have done it.

    Give him our best wishes.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78638
    Re: Petrified (more than he is) about muscle biopsy

    Poor thing. Wounds are so very painful.

    The rosehip cream or bio oil will help with the scarring once the skin has healed. I don’t really know of anything you can use during the sore healing phase to help but it is important that he move the leg some.

    I am sure it will have been worth while and he will heal quickly.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #78639
    Re: Petrified (more than he is) about muscle biopsy

    I was given some pills to help with scaring and brusing after my scolisis back op. it was a homio pathic remedy from the GP called Amica or Arnica or something like that.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #78640
    Re: Petrified (more than he is) about muscle biopsy

    Ho hum.

    Still waiting.

    When we had muscle biopsy done, we were told that we would have the results in 3 weeks at the most. Bahahaha.. yeah right. 6 1/2 weeks later, we’re STILL waiting.

    He had an email all ready and penned for the doctor.. and decided to retract it and write something a little more, well, likely to receive a response. The original mentioned that “I would appreciate it if you could swiftly release myself and my loved ones from the anxiety we have felt for the last 6 weeks”.

    *sigh* I guess we keep waiting..

    But on the positive side, the leg is feeling much better.. the scar is healing well and we’re back into hydrotherapy.

    Hope you’re all welll!!

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78641
    Re: Petrified (more than he is) about muscle biopsy

    @angelicprincess wrote:

    Ho hum.

    Still waiting.

    Annoying isn’t it ?

    Thanks for letting us know.

    Do not worry too much though. I am sure they are going
    down other avenues of diagnosis as well. Also the biopsy is
    not always the total diagnosis tool that people seem to think
    it is. The results can be indeterminate or only indicate
    which way to go in the future.

    Myself it took 364 days to get the result (various reasons)but by then so much
    had been achieved in other areas it was not really a big deal.

    Scar healing is a good result.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78642
    Re: Petrified (more than he is) about muscle biopsy

    I had a muscle biopsy back in early March, and like you I was told it would take 10 days or 2 weeks to obtain the results. In the end I had to wait just over 8 weeks. Its very annoying but I know in my case it was done so as to get a definative diagnosis. It was sent to a specialist elsewhere. I receive genetic tests at the same time, and it conformed what I have.

    I really hope ye get the news soon.

    DCMGerry
    Participant
    Posts: 13
    Joined: 16/01/2011
    #78643
    Re: Petrified (more than he is) about muscle biopsy

    Okay, we now have the “results”.

    As I say “results” you can tell there was no result.

    Inconclusive. The word we were hoping so much not to hear.

    Does anyone have any tips for what we should now ask the specialist?? We were hoping to have some sort of idea so that we can family plan.. at least an idea of recessive vs dominant would have been nice.. but duck egg. Nothing. Nada. Nix.

    My poor man can’t go through that test again.. he has requested some of the sample be stored, but what can we do??? We are going to organise an appointment to see the specialist together (specialist is unaware he is in a relationship and planning to have a family) but we need to have some idea of what we can actually ask him about.

    And on top of this we have now discovered that he requires invervention with his sleeping.. that’s another story.

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #78644
    Re: Petrified (more than he is) about muscle biopsy

    @angelicprincess wrote:

    Okay, we now have the “results”.

    As I say “results” you can tell there was no result.

    Inconclusive. The word we were hoping so much not to hear.

    This is what I was trying to prepare you for.

    Strangely this is not at all uncommon. Even today a high number of
    our posters do not have exact diagnoses and are “assumed CMT”, “assumed
    DMD” etc……reading from one of my early letters “It is often not possible
    to to pick up a genetic cause of muscle diasease using the tests that we
    currently have”.

    This is a difficult time for you both, but brave of you to post to us.

    The important thing is that even without a diagnosis they will be addressing
    the important issues like ventilation and doing what is necessary. Looking
    at the main MDC site there are now over 64 types of MD and well over 100
    variants. The tests often just test for levels of certain chemicals in blood
    or tissue so an inconclusive at this stage is not a rare happening. They
    might get it in the very next test.

    Next Steps you ask ?

    Sleep studies / Lung function it seems they are doing. Possibly Genetic /
    DNA tests, more Nerve conduction testing, Ultrasound, MRI. They
    will never be short of tests and will get closer to narrowing it down.

    Good luck to you both.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #78645
    Re: Petrified (more than he is) about muscle biopsy

    What types of cervical biopsy are there, do they both hurt? I have to have a cervical biopsy for HSIL, maybe cervical cancer. I am a wimp. I am reading that there are 2 types of possible biopsies. How do I know which one I need, the doctor didn’t specify. Do they both hurt pretty bad?

    phellma
    Participant
    Posts: 1
    Joined: 18/07/2011
    #78646
    Re: Petrified (more than he is) about muscle biopsy

    @phellma wrote:

    What types of cervical biopsy are there, do they both hurt? I have to have a cervical biopsy for HSIL, maybe cervical cancer. I am a wimp. I am reading that there are 2 types of possible biopsies. How do I know which one I need, the doctor didn’t specify. Do they both hurt pretty bad?

    Well like any fiddling with the downstairs lady department there can be some cramping or discomfort but nothing untoward from what I have experienced/read/heard, but everyone’s description/perception are different as are their thresholds. Try not to stress yourself or get all tense, just keep telling your mind, it will be over in seconds and you will be fine.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
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