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I'm So Sick of Having Surgeries...

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  • I'm So Sick of Having Surgeries...

    Ugh... I'm just so pissed off. Several years ago, I got kicked in the face by a horse and it fractured the orbit around my left eye. I had a reconstructive surgery and wound up with some hardware holding the brow and cheekbones together. I had some complications after that surgery and wound up with a nasty post op infection that just won't go away.

    I seem to also have some sort of autoimmune response that causes my body to develop prolific scar tissue. So, they've gone in multiple times already to remove infected soft tissue and bone, only to have me develop massive amounts of scar tissue that cause complications of their own. They eventually have to go in and remove scar tissue because it creates pockets that hold infection or trap air that causes pain.

    The infection that started around my orbital bones eventually spread to my sinuses. I went from being a person that never had a sinus problem a day in her life to being someone in excruciating pain due to pressure changes. There were days that it literally took every bit of will power to keep me from sticking a knife in my eye just to try to get rid of the pressure that was pushing inside my face.

    Every time I have surgery I'm banned from the barn because I'm told that I cannot, under any circumstances, breathe in any dust or mold spores. I'm typically out of commission from the barn for 4-6 months. My mare's great about it but I'm frustrated because this year I finally was getting back into the swing of things and was taking lessons 2x/week and working with two great trainers that complemented each other well. Now I feel like all that hard work is going down the drain.

    A few weeks ago I started with pain again on my right side around my eye. Got a CT scan which showed, according to my surgeon "significant bone changes" and asked if I could come in on Tuesday to discuss surgical options. I don't want to have another surgery but I know I can't pussyfoot around with this. I waited too long on my last one and eventually wound up being rushed in for emergency surgery because the doctor felt I was at risk for it spreading to the fluid at the bottom of my brain. That would have been bad. I've lost count of the surgeries I've had in the last 3 years all for the same thing that just doesn't seem to really go away. I've been on countless antibiotics. I've been hospitalized for IV therapy... Nothing really seems to kick it for good.

    I feel helpless at times because I really can't do anything to stay connected and hands on while I'm healing. My BO is great though and sends me pictures and facebook messages letting me know my mare is happy as can be while I'm on the mend.

    Can anyone recommend some things (other than COTH of course) to satisfy my horse fix while I'm in recovery mode? If anyone has been through something similar, I would love to hear about your experience too!

  • #2
    Oh, Snowflake, I'm so very sorry. I've had a lot of surgeries--seven for a terrible hand injury alone, plus more for various other issues, including multiple sinus surgeries--but I cannot even imagine how hard it is to deal with so much infection and surgery and pain in your face.

    A couple thoughts:

    Is it possible to go to the barn with a very good mask? Is the concern what you inhale?

    Depending on your area of interest, could you become an expert in the old masters? Baucher, Xenephon, Podhajsky, etc? Their works are very interesting.

    Have you considered traveling to the Mayo Clinic or MD Anderson or Cedar-Sinai or Hopkins or whatever to try to lick this thing for GOOD? I imagine it would be much easier to face another six month break if one of the experts told you that would be IT and you'd be done for good?

    Comment

    • Original Poster

      #3
      No masks. I have asthma and breathing in warm air through the mask gives me a hard time. I can do masks only for about 5-10 minutes and then I'm done.

      I've thought about traveling to get this taken care of but the closest specialty hospital for me would be 3.5 hours away at the Cleveland Clinic. It's a big decision to try to go there. I recently switched surgeons (this is #3) and I'm hopeful that she will have better results.

      The first surgeon, who I should have ran far, far away from, I literally had to argue with him about what was going on. Me: "The pain is IN MY FACE." Him: "Oh, it's just migraines. Let me send you to a neurologist." I go to the neurologist who said "Nope, not my problem." Go back to the first surgeon - Me: "The pain is IN MY FACE - BEHIND MY EYE!!!" Him: "Oh, it's TMJ." Me: "OMG!! It's not $(*%&ing TMJ!!!" Him: "Let me show you how your jaw deviates. Open your mouth." He proceeds to push my jaw out of alignment. Me: "Yes, it will deviate when you're PUSHING on it. It doesn't do it on it's own, therefore, not TMJ." He gives up and sends me for an MRI. MRI looks AWFUL. He said "Oh, yeah... I can see why you're having problems." Hmmm... you think.

      I was stupid to have him operate on me when he kept trying to pawn me off on everyone else. I wound up with a MASSIVE post op infection (read: When I would bend over blood and pus would run out my face) I called his office and he refused to see me or even get on the phone. His assistant kept saying "Oh, that's normal. The doctor will call in a different antibiotic." Me: "There is nothing normal about this!!! All I can smell and taste is rotting flesh. I need to be seen."

      That's when I went to surgeon #2 who got me in within a day of my call and after seeing the degree of infection in my face left from the first surgeon, had me transported by ambulance from his office to the hospital to be put on IV antibiotics and scheduled for surgery a few days later. It was THAT BAD. He did the bulk of the work on me and while he's a wonderfully nice guy, I'm not satisfied by the outcomes thus far. According to the new surgeon, he uses older techniques and there are more progressive things that can be done.

      This third surgeon is a female, and very nice. She believes in a more holistic approach without being a quack about it. She sent me for a CT right away, got all of my old records and really sat with me and poured over everything. She set all of my scans up as a side by side comparison so we could see how the bone structures have been affected over the years. I appreciated the fact that she was looking at the whole picture. She called me personally this week to ask me to come in to discuss surgical options. She had sent my CT scans to a colleague of hers at the larger university hospital, and they discussed some things. I'll be interested to hear what she has to say.

      I'm hopeful, but also desperate for this to be a good match and for her to finally fix my face. I'm very much over this. I'd like to be able to live a normal life of being able to sleep lying down. To not wake up in agony every night at 2:30-3:00 and having to ice my face to try to reduce the pain and swelling. To have a full night's sleep would be blissful.

      Comment


      • #4
        Holy Cow, Snowflake, I cannot even imagine. How horrible. I don't have any suggestions on how to deal with the horselessness but I'll put my thinking cap on.
        What's wrong with you?? Your cheese done slid off its cracker?!?!

        Comment


        • #5
          {{{{{ HUGS }}}}} I am so sorry you are dealing with this. How about downloading some free music editing software and becoming proficient at music editing for freestyles? There are a couple of good and easy to use programs and a basic How-much-time-in each-gait formulas . . .
          "Listen to your mind. It has a whole lot more brain cells than your heart does." - SillyHorse

          Comment


          • #6
            It sounds like this new woman is definitely moving in the right direction, and fingers crossed that she's able to fix these problems for you for good.

            With regard to barn time while you're healing...how would a mask + O2 work? I know it would be adding ONE MORE THING, but you'd get fresh air and still be protected. Having to carry O2 all the time would be a terrible PITA, but perhaps it would be worth it for a once weekly (or whatever) barn visit to aid in keeping you sane and connected.

            Have you done any hyperbaric oxygen therapy? It really helped my mom when she has a very resistant infection in her jaw following radiation therapy.

            Big hugs and best of luck!

            Comment


            • #7
              just wow. Best of luck and jingles & prayers to you.

              I second the ideas of becoming an expert in areas of your interest (I don't recall what your discipline is sorry) and music editing for freestyles. You can even do it for freestyle reining it's really fun.
              Michael: Seems the people who burned me want me for a job.
              Sam: A job? Does it pay?
              Michael: Nah, it's more of a "we'll kill you if you don't do it" type of thing.
              Sam: Oh. I've never liked those.

              Comment


              • #8
                Best of luck to you through all of this. How about some youtube videos? USEFNetwork.com has free video of some shows. On youtube I like RNSVideo (Username) they have lots of cross country videos. also buzzertown on youtube has good cross country videos.
                Derby Lyn Farms Website

                Derby Lyn Farms on Facebook!

                Comment

                • Original Poster

                  #9
                  I like the music and video ideas! Unfortunately, post op drugs usually do a number on my attention span, so reading is probably a no go.

                  Comment


                  • #10
                    Originally posted by Snowflake View Post
                    I like the music and video ideas! Unfortunately, post op drugs usually do a number on my attention span, so reading is probably a no go.
                    Books on tape. You can fade off and drool at any time.

                    I totally understand wanting to get to the barn. But if this is your best chance at getting it right, I don't think I'd jeopardize it with exposure to dust or mold spores, as hard as it would be to stay away.

                    I'm very sorry about your situation, and wish you all the best. Find the best surgeon and facility you can, and follow the instructions to the letter. No shortcuts. Maybe the third time really is the charm! I hope so.

                    Comment


                    • #11
                      CCF may well be worth the travel for something you've been dealing with for years.

                      Massachusetts Eye and Ear Infirmary also has fantastic surgeons that could potentially help, but obviously much farther away.

                      I'm so sorry, Snowflake. I really hope this next surgery takes care of it for you.

                      I'd see if there are any training clinics that are live streamed or archived online

                      Comment


                      • #12
                        Another reason why we need universal free health care. You should be able to go to any doctor you want to. You should be able t o go to the best specialist in this country.

                        The USA is so far behind in providibg health care for it's citizens.

                        People do not realize that we are all one auto accident (or in your case one kick from a horse) away from being disabled.

                        I hope this surgeon corrects the problem so that you can live pain free and enjoy your horses.

                        Comment


                        • #13
                          Originally posted by cloudyandcallie View Post
                          Another reason why we need universal free health care. You should be able to go to any doctor you want to. You should be able t o go to the best specialist in this country.

                          The USA is so far behind in providibg health care for it's citizens.

                          People do not realize that we are all one auto accident (or in your case one kick from a horse) away from being disabled.

                          I hope this surgeon corrects the problem so that you can live pain free and enjoy your horses.
                          DIY faith healing in your own mortgage free property is the only free health care. Otherwise someone, somewhere is paying for it even if the patient never sees a bill.

                          The OP did not say that the doctors she saw were the only ones available to her or that her choice was limited in any way.

                          OP, I used to have sinus infections following a broken nose. Incidentally it occurred while we were on "free" government health care (Bethesda Naval hospital) After years of misery as a civilian wife and almost 3 months of continuous Keflex I had my sinuses operated on to fix my deviated septum and restore the airflow and drainage. The surgery was the pits, probably the worst I have ever had and I've had lots to compare it to, but it worked.

                          If barn dust and mold is the issue perhaps you could arrange someone to groom and tack up your horse for you and only ride outside. The severe post op pain "Please bring me drugs and an icepack and turn off the lights on your way out" shouldn't last more than a week or two though it will probably take longer than that before you want to ride
                          I wasn't always a Smurf
                          Penmerryl's Sophie RIDSH
                          "I ain't as good as I once was but I'm as good once as I ever was"
                          The ignore list is my friend. It takes 2 to argue.

                          Comment

                          • Original Poster

                            #14
                            Originally posted by cloudyandcallie View Post
                            Another reason why we need universal free health care. You should be able to go to any doctor you want to. You should be able t o go to the best specialist in this country.

                            The USA is so far behind in providibg health care for it's citizens.

                            People do not realize that we are all one auto accident (or in your case one kick from a horse) away from being disabled.

                            I hope this surgeon corrects the problem so that you can live pain free and enjoy your horses.
                            My health insurance hasn't limited my treatment AT ALL. In fact, it's paid for everything thus far. My insurance has a national network that will cover me for out of area physicians.

                            I work in the health insurance industry so that's a bit of a personal issue for me. Universal health care is not the solution for all that ails us. The first step is making health care more affordable - and that starts at the practitioner level. There is NO GOOD REASON why doctors accept different amounts from people dependent on what type of insurance (or lack thereof) they have. I looked at the EOB for my most recent specialist visit and she charges $180 for a consult. That is how much I would be charged to walk in off the street without insurance. My insurance negotiates a discount and they have a contracted rate of $60 for that service. So, they can afford to see me at $60 but the person who might have United may have a different negotiated rate of $100. If the doctor can afford to accept $60 from my insurance - why the heck are they charging $180? And don't get me started on diagnostics... Why they charge $3000 for an MRI but accept payment of less than $1000 is beyond me. And the contrast material... Ugh. $1000 for an injection that costs wholesale around oh - $25. That needs to get fixed before we talk about implementing universal health care - otherwise the system will be too big a burden on the government and ultimately the tax payers.

                            I'm all for paying off the education loans of doctors and making it harder to sue them so that they can afford to take less of a salary. Doctors in other countries that do have universal healthcare don't make a lot of money compared to the doctors we have here in the US and I'm sure that would be a punch in the gut for many MDs if we implemented a radical plan based off of oh, say... France's system (which isn't working well BTW).

                            But I digress...

                            I have to be very careful how I bend and lift post op. This is a bit more involved than a sinus surgery because they're going in and removing infected bone. This time it's around my right eye. I'll be honest, the post op pain isn't what worries me. Been there done that. Because I've had this done so many times I can tell the doctors what has worked for me and what hasn't. Like, use dissolvable packing please and hold the cocaine. Yes, they really did pack my nose with cocaine for the first procedure even though I told the doctors I have a known and SEVERE allergy to -caine derivatives. Novacaine, Lidocaine, Carbocaine... All bad. Very bad. But he packed my nose with cocaine and said it wasn't a -caine drug. CoCAINE. OMG. The anesthesiologist ripped the surgeon apart outside my recovery room as nurses rushed to get me on IV fluids and heavy doses of epi and benadryl. It was a rough few hours for me after that. It felt like my face was on FIRE and I couldn't breathe. So, we just say no to cocaine now. What I'm really annoyed about is the sheer bordom of not being able to do anything that I actually *want* to do post op. It's like being grounded as a kid.

                            Comment


                            • #15
                              DISSOLVABLE packing? Wow, I'm kind of pissed I didn't know about that for my multiple sinus surgeries. Having my brain (or the packing and splints) pulled was probably the most unpleasant part...

                              Another idea for your recovery period--could someone record your trainer riding your horse, and then could you schedule a "virtual" lesson where your trainer walks you through the ride? I know something like that would definitely aid me when I was able to get back on!

                              Comment


                              • #16
                                Originally posted by Simkie View Post
                                DISSOLVABLE packing? Wow, I'm kind of pissed I didn't know about that for my multiple sinus surgeries. Having my brain (or the packing and splints) pulled was probably the most unpleasant part...

                                Another idea for your recovery period--could someone record your trainer riding your horse, and then could you schedule a "virtual" lesson where your trainer walks you through the ride? I know something like that would definitely aid me when I was able to get back on!

                                Amazing how much stuff they cram in there....I was bleeding through my packing so they had to repack it a few hours after the surgery, stone cold sober

                                OP, many of us have spent time "grounded" for various reasons. Once you are off the heavy drugs you can spend the time organizing the pictures on your computer, uncovering your family tree or learning a new language. Kindle and Netflix are good too. But no way around it, it sucks
                                Last edited by carolprudm; May. 27, 2012, 02:31 PM.
                                I wasn't always a Smurf
                                Penmerryl's Sophie RIDSH
                                "I ain't as good as I once was but I'm as good once as I ever was"
                                The ignore list is my friend. It takes 2 to argue.

                                Comment


                                • #17
                                  Well, the doctors can afford to take your $60 because they get $180 from someone else. It's all in the negotiating power of the practice/hospital with the insurance companies, unfortunately. This is why the community hospitals are closing and merging with the large conglomerates.

                                  US-trained doctors don't necessarily earn more in this country- depends on the specialty. I know that my friends who practice the same specialty in Canada make more than I do, and I'm in private practice now.

                                  US-trained doctors also usually have more years of training compared to some other countries, and amongst the best training internationally. It's why so many foreign med school graduates like to do their specialty training in the US.

                                  Four years college, four years med school, four years of residency and two years of fellowship for me. I made very little in salary during residency and fellowship for the honor of working 100+ hours/week (back before work hour restrictions). I then spent 5 years in academic medicine, which doesn't pay as much as private practice. Now that I'm in private practice, groups are merging and I may not be able to stay a partner- we may need to merge with a PO.

                                  Many young doctors really wish they hadn't entered medicine. It's a sad state, all the way around.

                                  Now I digress!

                                  I do wish you a speedy, successful recovery.

                                  Comment

                                  • Original Poster

                                    #18
                                    Originally posted by ser42 View Post
                                    Well, the doctors can afford to take your $60 because they get $180 from someone else. It's all in the negotiating power of the practice/hospital with the insurance companies, unfortunately. This is why the community hospitals are closing and merging with the large conglomerates.

                                    US-trained doctors don't necessarily earn more in this country- depends on the specialty. I know that my friends who practice the same specialty in Canada make more than I do, and I'm in private practice now.

                                    US-trained doctors also usually have more years of training compared to some other countries, and amongst the best training internationally. It's why so many foreign med school graduates like to do their specialty training in the US.

                                    Four years college, four years med school, four years of residency and two years of fellowship for me. I made very little in salary during residency and fellowship for the honor of working 100+ hours/week (back before work hour restrictions). I then spent 5 years in academic medicine, which doesn't pay as much as private practice. Now that I'm in private practice, groups are merging and I may not be able to stay a partner- we may need to merge with a PO.

                                    Many young doctors really wish they hadn't entered medicine. It's a sad state, all the way around.

                                    Now I digress!

                                    I do wish you a speedy, successful recovery.
                                    I always appreciate the view from "the other side." Unfortunately, all this equates to is that there is no easy solution to the problems with healthcare here. A complicated mess it is.

                                    Thank you ser42!

                                    Comment


                                    • #19
                                      Are you looking for something horsey to do or just something to do that will keep you from jumping off a cliff?

                                      The first time I was on stall rest I taught myself to crochet. My first few projects were quite frightening. But now I'm quite good (been on stall rest multiple times!)

                                      I also got these iron on patterns and made lots of embroidered kitchen towels and whatnot. I'm one stall rest away from taking up quilting.

                                      You don't need to bend over and create sinus pressure in order to crochet - just bring the hook up closer to your face. I was not supposed to bend with my back surgery and did just fine.

                                      If you were looking for horsey stuff to do you could take up sewing - there are some fantastic patterns for riding habits and bandages and saddle pads out there.

                                      Sorry you're having more surgery. I hope this is the last one and you can move on. Good luck.

                                      (and what's up with that packing? When I had sinus surgery they must have put 100feet of gauze up there. When the doc took it out it was like a clown car. )
                                      Brothers and sisters, I bid you beware
                                      Of giving your heart to a dog to tear.
                                      -Rudyard Kipling

                                      Comment


                                      • #20
                                        I have to be very careful how I bend and lift post op.


                                        http://celebratesexy.com/2011/11/lea...the-bunny-dip/

                                        ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                                        Gravity works, and the laws of physics are a bitch.

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