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Having wrist surgery in January and update.

Discussion in 'Pain and Inflammation' started by Misfit Toy, Oct 15, 2014.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Hi Everyone, thanks for your concern and being in touch and the emails and prayers!

    I want to thank everyone for nudging me. I try to check in, but to be honest, I am exhausted and any left over energy, I am watching TV. I am addicted to certain shows right now and it's a nice diversion.

    I am in the heat of work right now because it's that time of year and jewelry sells now. So, that's number one, but also, my mom is taking up my time. She is really unable to drive, or think clearly but not ready for assisted living. I am helping her with her finances and trying to sort out her insurance, which means one day a week I spend with her which leaves me with ZERO energy.

    Then there is the business.

    Then, there are my own doc appts. I do have Sjogrens definitely. He feels it's primary. A primary disease. But...I also saw the 4th best hand surgeon in the country and after looking at my wrist, he has determined that I definitely need surgery or it will only get worse. I broke it years ago. 16 years ago. The cartilidge is a mess and it never healed properly. He has to clean that up.

    He wants to re-break it and put pins in and a plate. This is my right hand, so writing will be out for 6 weeks and it will take a total of 6 months to heal, plus 3 months of devoted physical therapy. When I heard he would have to break it, I was sick to my stomach. The first time it broke, the pain was so bad because it hit a nerve and I vomited. Now, I know I will be asleep, but the fact that he wants to re-break it scares me. I found this out last week and I would just start crying in my car or wherever. It never ends and I can't talk about it to anyone because no one has ever had this done.

    My doctor's are all over the place. Actually, they are all an hour away from me. I live outside of Philly. Every doc knows this surgeon and they all say, "You will find no better and do it now, because he will retire in about a year." He is in his 60's and I am not getting younger, so I have to have this done in January when business dies down. Plus, because I am not 20 anymore, I will have to do it now so that it does have a better chance at healing. I can't turn or open bottles or lift anything which is quite an impediment.

    I start Plaquinel next week for the Sjogrens. I am on Topamax right now for pain and it does help. If I am not on here much, it's because my energy is limited and I am using my wrist to type and it's hard, but please know I am thinking of everyone. I am trying to financially do well and make a lot of jewelry now so that when I am unable to for months, I have jewels stocked away.

    Feel free to email or respond and I will do my best to be in touch. I hope everyone is okay. You can write me and let me know how you are. :thumbsup:
     
  2. *GG*

    *GG* Senior Member

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    Best of luck and hope things settle down for you soon!

    GG
     
    Misfit Toy likes this.
  3. Gingergrrl

    Gingergrrl Senior Member

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    @Misfit Toy I was great to hear your update although I am so sorry for all that you are going through. Although it is not exactly the same, when I injured the tendon in my right arm from Levaquin in 2010 (and I am right handed) I also had to re-learn how to do everything with my left hand including using the computer mouse and typing. I could not write or open bottles or do any of the things that you mentioned. I did not have surgery but I did do six months of PT and my arm ultimately recovered. So for what it's worth, if you think the surgery will lead to a complete recovery and you trust the doctor, I would go for it.

    Will they be able to provide appropriate pain management for after the surgery? Also, if you have any autonomic or cardiac issues as part of your CFS, I would make sure the anesthesiologist knows about this as there are special precautions to take. Make sure they know all the meds and supplements you are taking as well. Do you have family or friends who can help you after the surgery? You sound like a great daughter to help your mom so much and hoping you will also have the help you need.

    I was also wondering if you have a website for your jewelry? You can send me via PM if more comfortable that way but I would love to see it!

    I will continue to pray for you on our PR Prayer Tree and you have a lot of support here. Don't worry about posting if you are not up for it and you are in our thoughts whether you post or not. Just take care of yourself and do what you need to do. You have a lot of strength and I can always hear it through your posts even in difficult times.

    Best wishes and hugs :hug:
     
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  4. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl - I have to talk to them about anesthesia because that is very hard on me. I shake like crazy after surgery and I become freezing. I will need to tell them that and that all systems TURN OFF. I can't go to the bathroom for hours. That is a huge issue.

    As far as pain management. I have to go to my pain specialist who will work with me. He is going to give me several meds..a few pills each. I do horrible on opiates, but the surgeon said I will have to suck it up and take them because I will be in a lot of pain later after the surgery. Fentanyl, I can take, but i will also need something else.

    I was lucky that I was allergic to levaquin and Cipro. A first time IV of the med made me so sick and they pulled the IV out pronto and gave me an epi pen.

    With my mom, I have no choice. Someone has to manage her finances and situation. We have had major ups and downs as many on here know, but my mom has always kept clothes on my back and taken care of me financially more than my other siblings. She is impossible at times and I want to strangle her...joke, sort of...but she is my mom and I feel a need to help her as she withers into old age and dementia. She has loved me and loves me and especially now that no one else is really around. It's just me. It's awful to see. The woman who was once as sharp as a tack relies on me for everything. Every decision, everything.

    Except, I can't help her with everything. This financial thing is enough right now. I have made that clear. Her doc's are up to her and anyone else in the family who can help. I trust no one else with her money because they all want a major piece of her pie. Well, not my nieces, but they are too young to realize that keeping her money in stocks and bonds at her age is not working for her. So I moved it into a fixed index annuity.

    Thank you...I will let them know everything. I have 3 months to prepare. As far as help, someone will have to help me, but not on a regular basis. But, I will have to call on friends and maybe hire someone to come over and take out my trash, etc. He said I can drive. I will stock up on tons of food.
     
    Last edited: Oct 16, 2014
  5. Sea

    Sea Senior Member

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    Thanks for the update Misfit Toy. I understand it is all very daunting to face with limited energy. I keep feeling overwhelmed with my list and not enough energy to keep up.

    Although it is very scary, it is not uncommon to rebreak a bone that has not healed properly. And, this time, even though there will be an incision to deal with, there won't be all the soft tissue damage that comes with an injury.

    Will be thinking of you

    Oh and the Sjogren's syndrome - sorry to hear you have that but thankful that you have a firm diagnosis so that you have a treatment path to pursue. I hope it settles for you and you get a much improved quality of life.
     
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  6. Misfit Toy

    Misfit Toy Senior Member

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    @Sea -I don't know much about this stuff, but why will there be no soft tissue damage? I feel it's so uncommon to have a break so much later after I originally broke it....16 years ago. I just need to be knocked out for this. No way I will be awake at all for a break, but of course I won't be. Gives me the willies!
     
  7. Sea

    Sea Senior Member

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    It won't be an uncontrolled break like when you injured it. In an injury there is usually a lot of bruising, maybe a sprain and if there are fragments of bone then they poke into the soft tissue and do damage. In an operation there will be an incision which usually causes much less damage to the surrounding area and heals much more quickly. I think the bone pain may even be less with a surgical break rather than a break under pressure, which causes more bruising of the bone too.

    I have friends who have had hip or knee replacements say that it was less painful than fractures they've had.
     
  8. rosie26

    rosie26 Senior Member

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    Thinking of you.
     
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  9. Misfit Toy

    Misfit Toy Senior Member

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    Thanks, Rosie.

    Another update...my rheumatologist is also pretty sure I have Ehlers Danlos also. My list of diagnoses just keeps on growing. I am Lucy Goosey. Very mobile, double jointed, look young, etc...lots of pain. It fits.
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    Hi @Misfit Toy It seems weird to hit "Like" to what you just said but I did it to mean that I read your post and support you. Every time I get a new diagnosis, it is hard to grasp and comprehend what it all means for the future. But I am trying to stay positive and view them as all inter-connected. You have a great attitude and lots of support on the board who are rooting for you.
     
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  11. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -this is why I call myself a misfit toy. A damaged toy on the island of misfit toys, but remember how they all laugh on Rudolph? They all have an important role anyway. I have 2 friends with EDS so I question the diagnosis because they are far worse off, but I keep having injuries and progressive pain. I injure too easily and that's only happened lately. No one can ever believe my age either. I look way younger and I feel that people my age look old! LOL!
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @Misfit Toy, I do not have EDS but it is interesting what you said re: looking younger b/c everyone always thinks that I am at least ten years younger than my age (and this is life-long and pre-CFS.) I doubt there is any connection and just random but it made me wonder!
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    They say that a lot about CFS folks. We look younger. It makes zero sense to me, but hey...I'll take it!
     
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  14. zzz

    zzz Senior Member

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    @Misfit Toy, you've certainly been having your share of trials here. And nobody wants to have surgery, much less in our condition. At least you have a good set of doctors - that's so important. And your hand should be in better shape when this is all over. That may be small comfort now, but it's something to hang onto during this process and the rehabilitation. And @Sea is right - since it's a controlled break, it's much less traumatic, and it will heal faster.

    I gather you live alone, as I do - that always adds an extra dimension to dealing with illness. But it sounds like you've got things lined up rather well for your recovery period.

    You mentioned that your Sjögren's has been diagnosed as primary. That's actually a good thing, as it means that the Sjögren's is occurring by itself. If it were diagnosed as secondary, that would mean you would have another connective tissue disease present. Fortunately, you don't have that. Apparently, some people do. And "primary" and "secondary" don't necessarily have anything to do with the severity of symptoms.

    But still... And now, Ehlers Danlos too! It's hard to believe that these various diseases don't all share some common root, as their joint appearance seems hard to explain otherwise. The appearance of other autoimmune disorders with ME/CFS is known, as is Sjögren's in particular. Progress is being made in the field of autoimmunity and its treatment in general, so there's reason to be hopeful here. But the journey sure can be difficult at times; I know.

    For your surgery, did you have a choice between local and general anesthesia? Given a choice, the local is a lot easier to recover from, especially for PWME. I know the idea of being awake while they break your hand sounds horrible, but they can position you so you don't see a thing, and of course, it doesn't hurt. The local anesthesia can also be turned up to the point where you're barely aware of anything at all. I had an operation on my foot where a part of the bone was removed, and it was done entirely under local anesthesia. It just felt like someone was moving my foot in different ways.

    But general anesthesia may be required for this procedure, or you still may prefer it. In any case, although it's known that anesthesia can be a problem for PWME, what's much less well known is that certain anesthetic agents (both local and general) are much worse for PWME than others. The following is from the National CFIDS Association Web site:
    So it's very important to talk to your anesthesiologist beforehand to assure that no anesthetics that use the sodium channel will be employed. I would then talk to the anesthesiologist right before the surgery to make sure that this information hasn't been lost or forgotten.
    Dr. Cheney says that he's noticed that those CFS people who stay within their energy envelope tend to look younger than their age, while those who don't stay within it tend to look older than their age. It makes a certain amount of sense.

    @Misfit Toy, I promised to send you a PM once my taxes were done. They're done now, and I'm just clearing away some of the things that have piled up, but that's pretty much done too. So I should be able to send that PM in the next couple of days or so. In the mean time, we really appreciate hearing your updates and any news you have to communicate. Unfortunately, physically there's not a lot we can do, but these forums sure are helpful in lending mutual support.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @zzz This is really important info re: anesthesia and thank you for posting it. Is "monitored anesthesia" or MAC considered general anesthesia? I have a long detailed reason for asking but don't want to go too off-track in this thread.
     
  16. Misfit Toy

    Misfit Toy Senior Member

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    @zzz -I will ask. He mentioned something about me being somewhat awake or out of it and awake. Personally, the idea of breaking my wrist freaks me out so much that I want to be out, but i do horrible with anesthesia so you raise a good point. I will ask. I shake like nobody's business and can't pee for hours upon hours afterwards.

    My rheumatologist is going to hire a home health nurse to come in after I have surgery so I am okay. I have no family so that will be needed. I will have to seriously prepare beforehand with food and shopping, etc. I will hire someone to go get groceries if need be.

    I plan to be asleep for weeks. I am already buying long underwear and just thinking....rest. I hate winter anyway anymore, so I will just sleep through it and go to physical therapy and try to make a necklace here and there when able. This will be that excuse that will allow me to do that.

    Thank you on the info about the Sjogrens. i wasn't quite sure what he meant by primary. I thought, does that mean I don't have CFS? I am on Plaquenil 2 nights a week and Topamax at bedtime. I am exhausted but I am not sure if it's that or just this weather. I feel like someone gave me restoril all day long. I wake up after sleeping well and I am beat. I am only on 25 mg but I am seriously exhausted. I only took Plaquenil once so I know that's not it. The topamax I only take at bedtime.

    My pain doc does not feel it's the Topamax. HE feels it's the weather. Grey, fall, dismal and cold suddenly. Could be, but I am asleep at the wheel. If it keeps up, I will stop topamax and see. I can't stand it.
     
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  17. Sea

    Sea Senior Member

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    Topomax seems to one of those medications people either do really well on or find completely intolerable. 2 of my daughters trialled Topomax. One had hallucinations, the other didn't sleep for 36 hours and was an emotional wreck. Meds don't always have the effect on us that they're meant to and it can be hard to convince a doctor a med is having a side effect that is not listed in the usual side effects. Be confident in listening to your body.
     
  18. Misfit Toy

    Misfit Toy Senior Member

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    Wow, thanks @Sea . I am taking 25 mg at bedtime but this may be the culprit to my absolute lethargic exhaustion. He is adamant on me going up to one in AM, too. Not happening.
     
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  19. zzz

    zzz Senior Member

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    @Misfit Toy, this is what @Gingergrrl mentioned as monitored anesthesia care (MAC). It consists of local anesthesia together with sedation and analgesia. The sedation uses an agent that also reduces anxiety. You can decide how out of it you want to be; if you're really out of it, you can still be awake, but you'd find you couldn't care less no matter what they do or say. A relaxed and perfectly calm patient is crucial for surgical procedures, as otherwise you may move or react in ways that would disrupt the operation. So even with a light amount of sedation, you should fee worry-free and comfortable as they do the operation (which you won't feel, of course). If you find yourself at all anxious, you can ask them to turn up the sedation a bit. The less sedation, the easier it is to recover from, but in any case, this type of anesthesia is much easier on the body than general anesthesia. It is also a bit safer, even though general anesthesia is quite safe. So the only thing you really need to ask about ahead of time is the type of anesthetic, making sure that it doesn't use the sodium channel. This would also apply to the sedating agent(s) used.
    That would be a reasonable question to ask if your doctor didn't tell you what "primary" meant. Fortunately, "primary" is good in this context, in that it simply means that there are no other connective tissue diseases; it has no implications for your CFS (which could still be considered as your primary illness).
    It's not the weather, and your doctor should know better. Whenever I have an unusual experience after starting a new drug, I go straight to the prescribing information for that drug. In the prescribing information for Topamax, under "Warnings and Precautions", there's a whole section entitled "Somnolence/Fatigue". The first sentence of this section is:
    Epilepsy and migraines are the only FDA-approved uses of Topamax, although it is a very effective drug in many off-label uses.

    For your doctor to say to you that he doesn't feel your exhaustion is due to Topamax and is probably due to the weather is not much better than telling you that your various other problems are just due to the weather. He's the one who prescribed Topamax; he should have either recognized the side effects you were describing, or at least looked them up. If they're in the prescribing information, especially so prominently, they're everywhere.

    But before you throw your Topamax away, consider the following from later in that same paragraph:
    In general, side effects of drugs tend to be dose related. Your doctor started you on a nightly dose of 25 mg, which is the standard starting dose for Topamax. However, as a group, we tend to be more sensitive to drugs than most people. That's why some CFS specialists who recommend Topamax recommend half the standard starting dose, or 12.5 mg. (You have to cut the pill in half.) I recently tried Topamax for my ME/CFS, as it is one of the drugs that Dr. Goldstein sometimes uses. But since I'm extremely sensitive to drugs, I started with a dose of 12.5 mg. I had no problems with that dose, until it started giving me tinnitus. (I have very bad tinnitus. If tinnitus is a possible side effect of a drug, I'll get it sooner or later, and probably sooner. Unfortunately, that covers most drugs.)

    If you were to go down to 12.5 mg in the evening, I would expect your fatigue to either go away completely or at least be substantially reduced. If it's reduced, but not enough, cut the pill into quarters, and start at 6.25 mg in the evening. I can't see your having a problem with that, and even going that low is probably unnecessary.

    There's a venerable medical saying that "The poison is in the dose." Generally, you can reduce the dose of any drug to the point where it has no side effects. The question is, Will the drug be at all useful at that level, or will you gradually be able to titrate it up over time? Sometimes the answer to both parts of this question is "No," and you can't take the drug. But considering that Topamax is designed for titration, and the prescribing information specifically states that the side effects are more common during the titration phase. I think you should be able to tolerate it without having to endure the current side effects. The standard dose escalation schedule for Topamax is once a week, and I gather that that's what your doctor is instructing you to do. That dosing schedule was designed for an otherwise healthy person who has either epilepsy or migraines. That's not you. You will need to experiment to find out what the proper titration schedule is for you. Don't let your doctor push you into anything you're not ready for.
    Good. Perhaps if you point your doctor to the prescribing information for Topamax, and specifically to side effects I mentioned (in section 5.6), he'll relent. Any reasonable doctor should. Especially if you're willing to give the medication a try at a lower dose, doctors are usually willing to compromise. And even if you really don't want to take it at all because of the side effects, that's your decision, and he should respect it.

    Both from what I've read and my own personal experience, Topamax is an excellent drug. (The fact that Dr. Goldstein also likes it doesn't hurt either.) Like most drugs, there are some people who will not be able to take it at an effective dose no matter what, as @Sea pointed out. However, like many drugs, the starting dose may simply be too high for sensitive people (which includes a large proportion of people with ME/CFS). Over the years, I have found that by adjusting the initial dose downward, I am able to take many drugs that have been prescribed for me that would otherwise have given me side effects that I couldn't tolerate.
    With severe reactions like that (and those two are not that rare with Topamax), a simple dose reduction is highly unlikely to do the trick, and there is a real risk of a repeat of those reactions, possibly at a worse level. I started hallucinating after a single dose of Cipro, and I never took that antibiotic again, or any other antibiotic in its class. Sometimes you just need to walk away from a drug. Or even run.
     
  20. Misfit Toy

    Misfit Toy Senior Member

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    @zzz , I want you to know that whenever I see your posts I see a beaming ray of light around your name. An energy. You have a wealth of knowledge in that brain and I love your sky avatar....let there be LIGHT!!

    So, I was on a half a topamax and tired but okay but the rheumy had me go up and I went into hypersomnia. I have to say though....this is better than Xyram! Hello! Gosh, thank God.

    I now know what to take for sleep. Topamax.

    It helps my pain also.

    But, all I want to do is sleep. Today after coming on here, I laid down and fell asleep for 5 hours straight. From 5pm until 10pm. I was stunned.

    Just took a half a pill tonight with the plaquenil.

    Thank you regarding the info and everything.

    I am not so freaked about having a lighter form of anesthesia. You are right. I had dental surgery with laughing gas and that was a major surgery where a hole was drilled into my sinus and I was awake. I think I was even laughing! But, not later on. Pain surfaced. Meaning, afterwards.

    I am going to print all of this out.

    Btw, tinnitus is the worst. I've had it and basically have a mild form on a constant basis. On Acyclovir it went up to a very high number of buzzing. Drove me nuts. Valtrex also.

    My rheumatologist will have to be ok with me not taking the full amount. There is no point to go from being mobile to almost bedridden from a drug and to say stick with it.....no. He'll get it. He's actually pretty good.

    The pain specialist mentioned the fall bringing on fatigue. He didn't prescribe topamax. He deals with more acute back and neck pain patients on opiates. Not folks like me with Sjogrens and fibro. He sees fibro patients but none that have my medicine issues. Most want opiates. I don't. I want a rabbit pulled out of a hat!
     
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