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2 years have passed - still suffering - just more complex - help
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findingpeacewithpain posted:
Hello All, wow, it has been 2 years since I posted last. It feels like I'm about to make a confession lol..
Unfortunately not much has changed but a lot has happened. Finding Peace with Pain is still my goal....I just keep getting new pains and there has been nothing peaceful about it. Since 2010 I have bunion surgery on my right foot (Nov 2011). As the metatarsial beside the bunion was fractured they has to secure it with 3 pins along the top of my foot. This adventure took me to a hospital bed in my living room for 6 weeks with no walking on it for the entire 6 weeks. I have a 7yr old and a 4 yr old. It was hard on everyone... Last week I got 2 pins removed surgically and today I go get the stitches out. Yeah! This whole ordeal has strained my already bad back into hell.
I am going to a private clinic today to get 4 medial branch nerve root blocks. These are diagnostic needles only right now. I've had one already.It turns out my low back MRI was 5 yrs old so they redid it and found that I had Bastrup's Disease. Go figure, never heard of it. It is also referred to as the "Kissing Spine" disease. It explains the increase in pain over the last 3 years (since I broke my foot).
I'll let you know how it goes - I failed the last injection criteria because I didn't get off the bed feeling fantastic....It did take my pain down eventually to about a 2-3 but it took a couple of hours to recover from the trauma of the painful needles (for me, stubbing my toe makes my whole body hurt for 20 mins) he was not satisfied.
Also last week I had a cystoscopy under anesthetic as I have a fistual in my urethra into my vagina. Yeah nice eh? I don't know what that brought up yet but I guess I'll get the news today or tomorrow. They are worried as I have constant blood in my urine and just one kidney left - they dont want to mess around. I also have a prolapse in my vagina from the scar tissue still there from my eptopic uretor from birth. ARGGGG. I am seeing a vagina physiotherapist - who knew they even had that?
Anyway, I still have the Chiari Malformation 6mm that everyone is ignoring and this is my main reason for writing into this group. I need some support with this. I can get into more detail if anyone is interested in my discussion and wants to dialogue with me.
So, 2 years have passed and the chronic pain is still the same we've tried different meds but I still suffer as I know so many of you do. I am sorry for that but comforted by it also.
I am off to start my day with my dad driving me around to hospitals and doctors.....he is such a good man. I wish my husband was in the drivers seat but i've learned that will never happen., Yet another whole issue I still need support with.
Whew, I do not know how many will be glad I am back, just still complaining and keeping on. I look forward to making some contacts back that I had and get some new ones. We really can help each other - I believe that so bear with me.
Lisa (mscrazypain)
6 Replies |Watch This Discussion | Report This| Share this:2 years have passed - still suffering - just more complex - helpHello All, wow, it has been 2 years since I posted last. It feels like I'm about to make a confession lol..<br />Unfortunately not much has changed but a lot has happened. Finding Peace with Pain is still my goal....I just keep getting new pains and there has been nothing peaceful about it. Since 2010 I have bunion surgery on my right foot (Nov 2011). As the metatarsial beside the bunion was fractured they has to secure it with 3 pins along the top of my foot. This adventure took me to a hospital bed in my living room for 6 weeks with no walking on it for the entire 6 weeks. I have a 7yr old and a 4 yr old. It was hard on everyone... Last week I got 2 pins removed surgically and today I go get the stitches out. Yeah! This whole ordeal has strained my already bad back into hell. <br />I am going to a private clinic today to get 4 medial branch nerve root blocks. These are diagnostic needles only right now. I've had one already.It turns out my low back MRI was 5 yrs old so they redid it and found that I had Bastrup's Disease. Go figure, never heard of it. It is also referred to as the "Kissing Spine" disease. It explains the increase in pain over the last 3 years (since I broke my foot).<br />I'll let you know how it goes - I failed the last injection criteria because I didn't get off the bed feeling fantastic....It did take my pain down eventually to about a 2-3 but it took a couple of hours to recover from the trauma of the painful needles (for me, stubbing my toe makes my whole body hurt for 20 mins) he was not satisfied.<br />Also last week I had a cystoscopy under anesthetic as I have a fistual in my urethra into my vagina. Yeah nice eh? I don't know what that brought up yet but I guess I'll get the news today or tomorrow. They are worried as I have constant blood in my urine and just one kidney left - they dont want to mess around. I also have a prolapse in my vagina from the scar tissue still there from my eptopic uretor from birth. ARGGGG. I am seeing a vagina physiotherapist - who knew they even had that? <br />Anyway, I still have the Chiari Malformation 6mm that everyone is ignoring and this is my main reason for writing into this group. I need some support with this. I can get into more detail if anyone is interested in my discussion and wants to dialogue with me. <br />So, 2 years have passed and the chronic pain is still the same we've tried different meds but I still suffer as I know so many of you do. I am sorry for that but comforted by it also. <br />I am off to start my day with my dad driving me around to hospitals and doctors.....he is such a good man. I wish my husband was in the drivers seat but i've learned that will never happen., Yet another whole issue I still need support with. <br />Whew, I do not know how many will be glad I am back, just still complaining and keeping on. I look forward to making some contacts back that I had and get some new ones. We really can help each other - I believe that so bear with me. <br />Lisa (mscrazypain)
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Anon_2912 responded:
Funny you should mention fistula...I have been dealing with one for 3 years....But mine is anal!! Not any fun.

I have had 3 surgeries & had to start going to physical thearpy with a pelvic lady.

There is actually PT for the scar tissue in the fistula area, WHO KNEW....

I had my first session & I can say I had to bite down on a towel....

Hope your fistula heals...Mine started out with a perianal abscess that had to be cut & drained 6 times...before turning into a fistual...

They claim the last surgery they got it all, who knows...
Report This| Share this:2 years have passed - still suffering - just more complex - helpFunny you should mention fistula...I have been dealing with one for 3 years....But mine is anal!! Not any fun.<br /> <br />I have had 3 surgeries &amp; had to start going to physical thearpy with a pelvic lady. <br /> <br />There is actually PT for the scar tissue in the fistula area, WHO KNEW....<br /> <br />I had my first session &amp; I can say I had to bite down on a towel....<br /> <br />Hope your fistula heals...Mine started out with a perianal abscess that had to be cut &amp; drained 6 times...before turning into a fistual...<br /> <br />They claim the last surgery they got it all, who knows...
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findingpeacewithpain replied to Anon_2912's response:
yes, no fun. my fistula will not heal itself and they are scared about trying to sew it as I don't scar well. If I get a blockage from the scar tissue then they have to put in a plastic urethra and then everything changes again.
It is just one of the things I am dealing with that just makes things more complicated. I do not know what they will do now. I see the surgeon next month to discuss it.
I am sorry for your ordeal...it is comforting knowing thank you for sharing. Good Luck.
Report This| Share this:2 years have passed - still suffering - just more complex - helpyes, no fun. my fistula will not heal itself and they are scared about trying to sew it as I don't scar well. If I get a blockage from the scar tissue then they have to put in a plastic urethra and then everything changes again. <br />It is just one of the things I am dealing with that just makes things more complicated. I do not know what they will do now. I see the surgeon next month to discuss it. <br />I am sorry for your ordeal...it is comforting knowing thank you for sharing. Good Luck.
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TDXSP08 replied to findingpeacewithpain's response:
I need an Occupational Therapist for my Penis it does not Perform any of the Original Equipment Tasks, yes i am incorrectly blaming the organ when it is actually multiple organs involved but i thought it might get a grin out of a few people.

At any rate Lisa you are always welcome on this board as are all people of Pain no matter what the cause you write we read and respond to you, we very much try to give as much support as we can and when we need support ourselves get that out of the group ourselves when we are in a bad spot.

Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
Report This| Share this:2 years have passed - still suffering - just more complex - helpI need an Occupational Therapist for my Penis it does not Perform any of the Original Equipment Tasks, yes i am incorrectly blaming the organ when it is actually multiple organs involved but i thought it might get a grin out of a few people.<br /><br />At any rate Lisa you are always welcome on this board as are all people of Pain no matter what the cause you write we read and respond to you, we very much try to give as much support as we can and when we need support ourselves get that out of the group ourselves when we are in a bad spot.<br /><br />Peace
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findingpeacewithpain replied to TDXSP08's response:
Thanks for the support. You are right pain is pain - no matter where it is. I have had years of it in all different systems. The congenital abnormalities involving my bladder tissue in the wrong spot has caused me years of sorrow. Now that I am married 10 years and suffering through this time of chronic pain I thought it would be easier having a husband, a friend, but he can't deal with any of it. Intimacy is gone now for 3 years and we are just living together trying not to kill each other most of the time. WE adopted two boys from birth but the oldest seems to have a behavior problem that wedges us apart even more. He almost agreed to go to counseling so I am hoping we can get through this.
I think cause I am over 40 and chasing after two boys (7&4) I feel older than I am. It hurts me to know I am not the active fun mom I always thought I would be. I am however finished with my bunion surgery which means I can start walking and working-out again. I have gained 15 pounds since Nov 2011. I know I feel better when I can be healthier.
I think the meds they have me on make me sore all over - do other people feel narcotics make them achy and tight all over with muscles spasms?.
Report This| Share this:2 years have passed - still suffering - just more complex - helpThanks for the support. You are right pain is pain - no matter where it is. I have had years of it in all different systems. The congenital abnormalities involving my bladder tissue in the wrong spot has caused me years of sorrow. Now that I am married 10 years and suffering through this time of chronic pain I thought it would be easier having a husband, a friend, but he can't deal with any of it. Intimacy is gone now for 3 years and we are just living together trying not to kill each other most of the time. WE adopted two boys from birth but the oldest seems to have a behavior problem that wedges us apart even more. He almost agreed to go to counseling so I am hoping we can get through this. <br />I think cause I am over 40 and chasing after two boys (7&amp;4) I feel older than I am. It hurts me to know I am not the active fun mom I always thought I would be. I am however finished with my bunion surgery which means I can start walking and working-out again. I have gained 15 pounds since Nov 2011. I know I feel better when I can be healthier. <br />I think the meds they have me on make me sore all over - do other people feel narcotics make them achy and tight all over with muscles spasms?.
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TDXSP08 replied to findingpeacewithpain's response:
To the Last first you will be very hard pressed to find a Chronic Pain Patient myself included that DO NOT take Muscle Relaxants almost all of us do, whether it is from the pain issues themselves or from something we take inevitably we all end up taking them, over 40 and chasing 2 little ones ,that could be me i'm 43 and if i had kids they would be adopted like yours because i made two decision's very young i would only have sex with someone i truly was in love with which limits my partners to less than the digits on one hand , and contraception was my "problem" not my partners i was the one that had bad things in there Genes back then i did not have a clue as to how bad and now i truly know and i'm really glad for the decisions i made then because what i didn't know then was truly scary.
I am a widower at this point and my wisecrack about my penis was because i'm Incontinent and have Erectile Dysfunction but what is absolutely the worst part of it all is that i have always believed my partner first and then my needs- but with my disease i do not have the stamina using all parts of me for my partner to have a good time let alone myself- so sex is like a non issue. And i would really like a chance to have 30 minutes alone with your Husband he would leave our chat and worship the ground you walk on.and i know all to well about Congenital abnormalities i had a few of them knock on my door a number of years ago i went from a Paramedic/Firefighter who every year in their off-duty time worked the "Fill the Boot" campaign to being Medically Retired and benefitting from the "Fill the Boot" campaigns because out of nowhere i developed Muscular Dystrophy. congratulations on the bunion surgery you know that working out and riding a stationary bike and things like that cause your body to release its own natural painkillers and make you feel good. if you click on my avatar you can read more about what illness's i have ,

and i will close for now hang chewed your ear off

Peace
i have no small step for man, but i have 6 tires for mankind,Watch your Toes!
Report This| Share this:2 years have passed - still suffering - just more complex - helpTo the Last first you will be very hard pressed to find a Chronic Pain Patient myself included that DO NOT take Muscle Relaxants almost all of us do, whether it is from the pain issues themselves or from something we take inevitably we all end up taking them, over 40 and chasing 2 little ones ,that could be me i'm 43 and if i had kids they would be adopted like yours because i made two decision's very young i would only have sex with someone i truly was in love with which limits my partners to less than the digits on one hand , and contraception was my "problem" not my partners i was the one that had bad things in there Genes back then i did not have a clue as to how bad and now i truly know and i'm really glad for the decisions i made then because what i didn't know then was truly scary.<br />I am a widower at this point and my wisecrack about my penis was because i'm Incontinent and have Erectile Dysfunction but what is absolutely the worst part of it all is that i have always believed my partner first and then my needs- but with my disease i do not have the stamina using all parts of me for my partner to have a good time let alone myself- so sex is like a non issue. And i would really like a chance to have 30 minutes alone with your Husband he would leave our chat and worship the ground you walk on.and i know all to well about Congenital abnormalities i had a few of them knock on my door a number of years ago i went from a Paramedic/Firefighter who every year in their off-duty time worked the "Fill the Boot" campaign to being Medically Retired and benefitting from the "Fill the Boot" campaigns because out of nowhere i developed Muscular Dystrophy. congratulations on the bunion surgery you know that working out and riding a stationary bike and things like that cause your body to release its own natural painkillers and make you feel good. if you click on my avatar you can read more about what illness's i have ,<br /><br />and i will close for now hang chewed your ear off<br /><br />Peace
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Peter Abaci, MD responded:
It sounds like you have gone through quite a lot in the last two years. One thing to keep in mind is that different medical problems can effect each other, and so can their treatments. For example, when recovering from foot surgery, the resulting changes in gait can certainly flare-up lower back pain. Any medications that you take for one problem could also affect a different, too, and since you only have one kidney, I think your doctors are probably very cautious about recommending any medications. In other words, when there are so many different things going on, it helps to still look at the big picture and remember what is most important.

With respect to your Arnold Chiari Malformation, only the minority of cases need surgical treatments, but this might be a good time to check in with a neurologist or neurosurgeon to update your status.
Report This| Share this:2 years have passed - still suffering - just more complex - helpIt sounds like you have gone through quite a lot in the last two years. One thing to keep in mind is that different medical problems can effect each other, and so can their treatments. For example, when recovering from foot surgery, the resulting changes in gait can certainly flare-up lower back pain. Any medications that you take for one problem could also affect a different, too, and since you only have one kidney, I think your doctors are probably very cautious about recommending any medications. In other words, when there are so many different things going on, it helps to still look at the big picture and remember what is most important.<br /><br />With respect to your Arnold Chiari Malformation, only the minority of cases need surgical treatments, but this might be a good time to check in with a neurologist or neurosurgeon to update your status.
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