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a hip replacement needed ?

Discussion in 'General ME/CFS Discussion' started by Johnskip, May 4, 2017.

  1. Johnskip

    Johnskip Senior Member

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    just want to get you guys opinion I have cfs no doubt experiencing pem often and having all the 2500 symptoms that come along with it still hard headed still trying to exercise and keep myself in a little shape it's the only way for me but my question is I needed a new hip at 37 years old after it wore out I was playing excessive amounts of basketball even after this like 11 years through the pain and obviously still need a new one surprisingly I had 5 xrays and it did not get that much worse except I'm tired of dealing with it now and I think it got worse because of my sedentary lifestyle now compared to my high prior level of activity would you get a hip replacement?
     
  2. Sing

    Sing Senior Member

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    I am sorry I got one even though I had pain because after that big surgery I developed a bad case of hypotension which, seven years after the replacement, has never gone away. I had most of the other symptoms on the list for ME but not that one, so maybe surgery was just a push into a fuller expression of this illness. I am also sorry if this frightens you. Maybe you will be fine, with an improved hip only, but I thought you ought to know that unintended consequences are possible.
     
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  3. Johnskip

    Johnskip Senior Member

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    thankyou for your honesty I am really afraid of that I don't do well with the anesthesia did you get anesthesia
     
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  4. Sing

    Sing Senior Member

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    Yes I had anaesthesia. It was a full hip replacement. I can't tell you though what the anaesthesia drugs were or how long they had me under. My operation was fully successful just in terms of my hip. It mended well over time and I stopped having pain every step as before. However, the orthostatic hypotension set in. Maybe there was some neurological damage. I don't know. Not sure this illness is well enough understood for this effect to be explained. But if someone has a good idea, I hope they share it.
     
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  5. Johnskip

    Johnskip Senior Member

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    yes thankyou again it's coming time for me because some days I can barely walk but of course don't want to worsen I can actually have the operation being awake now only getting a spinal does anybody do well on propanol they use that to to get you in a sleepy state?
     
  6. Sing

    Sing Senior Member

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    It sounds like you really need this replacement for sure. So my comments about my experience may be just a general caution for all of us.

    I also chose the same option, the spinal. I actually enjoyed the surgery--the drugs put me in an altered state that was euphoric--and felt ok waking up too--no nausea. However, then the orthostatic hypotension emerged. Another possibility for what may have contributed to it could simply have been the trauma involved in a pretty big operation. Some get over this well and others like me at that point (around age 60 with ME/CFS for 15 years) may not.
     
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  7. Johnskip

    Johnskip Senior Member

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    when did the hypotension emerge how is your range of motion pain level can you run of you had to?
     
  8. Butydoc

    Butydoc President

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    Hi Sing,

    I suspect you are correct that the decline in your CFS/ME was probably more a function of the surgical insult rather than the anesthesia. A hip replacement surgery is a substantial physiologic insult. I wonder if there is any studies comparing the magnitude of surgery to the worsening of symptoms? I also wonder if the length and type of anesthesia is correlated with the worsening of symptoms independent of the surgery?

    Best,
    Gary
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I know that several doctors and websites have correlated type of anesthesia to worsening of symptoms. Here is a link to what we have listed on our home page: http://phoenixrising.me/resources/preparing-for-surgery-anesthesia-warning

    When I was seeing an autonomic specialist he also warned about anesthesia and asked his patients to let him work with any anesthesiologist who was going to be involved if they had surgery. For me, he approved short-term drugs like Propofol, but I didn't have the need to discuss other types of anesthesia at the time.
     
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  10. Butydoc

    Butydoc President

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    Thank you Sushi for your response and relevant links. Still not clear if it is the anesthesia or the magnitude of surgery. I will read these links more carefully later to see if I missed something. It still seems to me that the surgery causes a longer prolonged stress response than anesthesia. Since prolonged stress responses have been implicated by many people on this site as a aggravating or causal reason for worsening of their symptoms, it would seem logical that the magnitude of surgery and it's impact would be an important determinate.

    Best,
    Gary
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Agree. It is difficult to know. All we really know is that some people have worsening symptoms after significant surgery.
     
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  12. Kati

    Kati Patient in training

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    Hi @Johnskip I have had 3 ankle surgeries within 12 months. It was hard physically but quite doable. What you need to take into account is the rehab period will not be fun. It will be like doing graded exercise therapy day after day. Your ME body will not like that. For me, it's the toughest part.

    The anesthesia went well, other than my nerve blocks would not take and for each of the surgeries I had to go under, and it was better for me that way because I did not need to worry about what the surgeons were saying. It was not comfortable awake because they had to put a huge tourniquet on my leg and I could feel that. Since the surgery was an hour or 2, I was quite glad to be put to sleep, and wake up when it's all over (I was not frozen where they did the incision, so I had to go for general anesthesia)

    If you have significant amount o fpain from your hip and you are suchat a young age you may well benefit from a new hip in the long term

    Sending best wishes.
     
    Last edited: May 7, 2017
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  13. Carl

    Carl

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    Take a look at Infra red light therapy. It does promote healing and increases circulation (release of nitric oxide), ATP production and healing. Trying some of that with your hip joint to see if it helps. NASA has been investigating this for astronauts and there is quite a bit of research into it's positive effects. Once you have your hip replaced you will not be able to go back!

    I became aware of this a few days ago and intend trying it myself as soon as I can find a suitable device which is proving difficult ATM. I had some thoughts that if it can improve ATP production it might be worth trying in the liver area.

    The wavelengths of light are important as some are more effective than others.
    Both red light 630 to 660nm and near infra red light at 810 to 830nm are effective. The dosage should be kept low, 20 to 30 joules/cm^2 is ideal, 100 joules is too much.
    http://articles.mercola.com/sites/articles/archive/2017/02/26/photobiomodulation.aspx

    There are heat lamps which can do this but their energy output is a bit high for my liking. LED lights are more controlled but are more expensive. All this can also help with pain.

    If you can stimulate ATP production and healing you might be able to avoid having a hip replacement. Joint replacements are prone to bacterial infections which can be very problematic. Biofilms can become attached and make destroying them very difficult.

    DPL make LED products but purchasing them in Europe is difficult. DPL Flex system and others.

    Beurer make Infra Red lamps but I am not too keen on them. They put out heat which can be a bit damaging if you are not careful. I would like an LED system but ATM I have not found something suitable which I can purchase.

    I also came across some research about infra red (870 and 930nm) and it's ability to damage bacteria. This is something that I would like to investigate to see if it helps destroy the bacteria that I believe cause CFS. Everything that I have tried so far has only had a small effect and has not destroyed them. They must die but actually destroying them is extremely difficult.

    Another good article which shows the beneficial effects of light on the body. It's quite a long article but well worth reading.
    http://articles.mercola.com/sites/articles/archive/2016/10/23/near-infrared-led-lighting.aspx

    Best of luck with whatever you choose.
     
    Last edited: May 5, 2017
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  14. Binkie4

    Binkie4 Senior Member

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    @Johnskip
    I had a hip replacement ( a resurfacing which I understand may be a bit more complicated than total replacement but leaves the option of a full replacement later if needed) in 2007. The hip was great- good recovery, range of movement etc, but I was never fully well again in terms of energy and was diagnosed with ME in 2008.

    Please also note that I had extreme dental surgery 6 weeks before the hip necessitating huge loads of antibiotics, a significant infection 3 months before that, and significant stress in my life at that time.

    I have of course wondered about anaesthesia but in the end concluded that it was the sum of everything, physical and emotional stressors that probably contributed to my ME.

    I now have 2 dodgy knees. I would prefer not to have surgery especially since knees tend not to be as successful as hips, but I am aware that at some point I may need to face this. Worrying but since the alternative would be wheelchair all the time, I may need to follow that route.

    I have also wondered about loss of blood during surgery. If our blood volume is down and we lose more blood, that's probably not good news for us.. good hydration prior to surgery may help that. I think I'd want to talk to the anaesthetist prior to op.....I didn't need a transfusion but BP was very low for a while so I wondered about blood loss.

    Those are my thoughts.....needs careful thought and perhaps an appointment with the anaesthetist. That's what I would try to do anyway. I also think I've heard of MEA leaflets on anaesthesia......hope I haven't made that up.

    Good luck.
     
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  15. Sing

    Sing Senior Member

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    Another thought--After surgery when the physical therapist gives you your exercise program for rehab, I would recommend that you stay the boss. It is you who know your body and its reactions to exercises, so in the interest of a good recovery, I would urge you to stay in charge. Do what you can, when you can, to recover your strength and function, but avoid repetitions that would be excessive for you.

    I do not particularly like being assertive, and physical therapists can be authoritative and very firm, but found it essential to maintain control. My own recovery in terms of strength and range of motion was all they wanted it to be, but I got there by following my own program, which did not involve multiple sets of exercises at one time. I would do one set. Later on in the day I would do another. This was because my muscles react with excessive contraction and pain when a lot of immediate repetitions are expected.

    I do not have any idea what your limits are but would just advise you to be aware of them and to maintain your own needed boundaries with the medical people and system.

    My best wishes.
     
  16. Johnskip

    Johnskip Senior Member

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    Well My total hip replacement is 4 days away and I'm really getting cold feet I am totally undecided on going through with the big operation I know my hip will be better that is a no brainer because my hip is terrible but I am still able to walk I am so used to the pain dealing with it for 15 years I have worked so hard to get to the point I am managing this condition trying to stay in my best shape possible I am honestly eying up running after operation but afraid of long stress response due to surgery? I know it's an my own individual choice but I would love to hear more opinions I hope everyone is doing the best they can in this unknown unrespected clueless battle thankyou
     
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  17. TiredBill

    TiredBill

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    @Johnskip Have you made sure the surgeon is not going to cut through the muscle that runs laterally on the outside of the hip? This cutting of the muscle is bad news for someone like yourself who has aspirations to be physical again.

    More modern techniques preserve the muscle. Hopefully, you've already addressed this with your surgeon, but I mention it just in case.

    My wife (no CFS) had a total hip replacement at 36. It restored her quality of life.

    Best,

    Bill
     
  18. Sing

    Sing Senior Member

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    I wish you well! Chances are you will recover fine, I bet, maybe taking a little longer. You are still young with years ahead of you. If I were you, I would go for it.
     
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  19. TenuousGrip

    TenuousGrip Senior Member

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    My wife is 54 y/o and not sick. She had both hips replaced (anterior/"minimally invasive procedure) in the last two-ish years.

    Everything went exceptionally well. She has no pain, and got her life back.

    They've instructed her to give up impact sports, but she's found lots of other activities to take their place.

    Best of luck to you !!
     
  20. Johnskip

    Johnskip Senior Member

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    I have to give you guys an update I had the surgery on Aug 15 and everything went fine during surgery no problems and no 17 days later my hip is doing pretty good but my cfs seems to have gotten worse I know the fatigue from surgery but this is alot more than that I'm just hoping and praying I'm not worse off because o have been in crash mode ever since I'm taking one day at a time and continuing on the magnesium protocol the only thing that got me back to a decent point of activity before this thanks for your support everybody hope all you guys are well
     

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