Aa
3 week post-op :.( still a LOT of pain- my story and questions
Hello. I finally had my Chiari Decompression surgery 3 weeks ago today. I wax dx'd in 2005, but my only symptom was h/a's that I could control by meds. They were controlable. As of the last year, things came tumbling down and all(massive majority) of symptoms were Chiari related. The symptoms led me to having to leave my job...things just crashed for me. I knew it was time to have the surgery (as well, MRI's, CINE, CT's, etc. all showed that there was further herniation compared to my 2005+ MRI's-i kept all records-images included) I "interviewed" 3 Neurosurgeons...going with the one who, to my surprise was well versed/knowledgeable & had a good history w/this actual procedure. I grilled him with many questions and wanted to know details. Anyways, I prayed and decided I was in the right hands. The surgery itself went as well as one could expect. The only thing was that he had to remove more of my C1 than he had thought. 2 post-op CT's show all looks great! 1st two days in hospital were rough (I recall, slightly, not being too "compliant" during the CT right after the surgery...but I think they zonked me out quickly after my "flailing", as I recall it).
Anyways, I'm at home. My 2week follow up (w/CT scan), my Neurosurgeon said he was excited at how great I was doing. Previous to the surgery, I was already in pain- (no syrinx btw)- arthritis in my spine, neck pain...so I was already on hydrocodone 7.5, 3-4x's per day. I've a low pain threshold & high pain med.tolerance (in the past 10yrs., besides this surgery, I've had 7 other surgeries-some minor, but surgery nonetheless). My neurosurgeon said he knew the pain would be a challenge to control for me. Before I left the hospital, my pain had not been under a 7. I was told by Neuro. staff that was normal. I accepted that...I certainly know I can't be "pain free". Here is my quandary... I'm 3 weeks post-op today. I'm still in great amount of pain. I'm on an Extended Release med. 2x's per day. And short acting med. that is now to be taken every 8-12 hrs. After 3-4hrs., my pain reaches that "hold your breath" & begin to sweat ....speechless kind of pain...(I usually try to underestimate my pain on the "pain scale"... 10 to me means I'm dying, call 911) I'd say my pain right now is a 7/1-8/10. Is this normal? He's wanting to wean me off of the meds. now...my other concern is that I've been in the hydrocodone for 1year, so it's not as though I've only been in these meds for 3 weeks. My rheumatologist has said (just before the surgery) that he feels I should go onto /go to a pain management clinic due to my whole back & joints-and now this (which hopefully will lessen the neck pain eventually).
The back of my head feels shattered and neck is a jacked up piece of meat. Before I left hospital, I developed a large squishy lump to the right of my incision (the area that he also used to take tissue for the Dura patch). Many of the Neurosurgeon's looked at it...including my Neurosurgeon...I was told it was collected fluid that was filling the space...it has gone down, but that side of my head is 100% more painful than the left side of my incision-sleeping (position I can lay my head down on pillow) is limited as the right side is horribly painful..so I'm stuck with just left side. Ugh. Now I'm crying. It hurts so bad.
Is this pain so completely normal at this point? It still feels like surgical pain. I AM moving my neck around...doing little exercises to avoid stiffness. I'm taking it very easy and slowly. I'm walking, I've all functions-just taking it slowly, but the pain is what keeps me from even doing things slowly now. I'm just wondering if this is all normal? Again, I know I won't be pain free...but I do have other pain issues. This surgery (being "down" is exasperating those other issues. But the back of my head is SO painful...like every hair follicle hurts. Making it 8-12 hrs. w/the shirt acting meds. is wearing me down. Tears. It's all tears.
The surgery has gone so well but this pain is still a challenge to get it managed. I'd settle for a 5/10 pain. Was anybody else still struggling w/ 7-8/10 pain at this point, 3weeks post-op?
I know I've written a LOT....have been meaning to write on this forum for a good while! And now I've prob. written too much for anyone to read through.
Thank you to anybody who can help/offer any insight.
Truly appreciated!!!
Anyways, I'm at home. My 2week follow up (w/CT scan), my Neurosurgeon said he was excited at how great I was doing. Previous to the surgery, I was already in pain- (no syrinx btw)- arthritis in my spine, neck pain...so I was already on hydrocodone 7.5, 3-4x's per day. I've a low pain threshold & high pain med.tolerance (in the past 10yrs., besides this surgery, I've had 7 other surgeries-some minor, but surgery nonetheless). My neurosurgeon said he knew the pain would be a challenge to control for me. Before I left the hospital, my pain had not been under a 7. I was told by Neuro. staff that was normal. I accepted that...I certainly know I can't be "pain free". Here is my quandary... I'm 3 weeks post-op today. I'm still in great amount of pain. I'm on an Extended Release med. 2x's per day. And short acting med. that is now to be taken every 8-12 hrs. After 3-4hrs., my pain reaches that "hold your breath" & begin to sweat ....speechless kind of pain...(I usually try to underestimate my pain on the "pain scale"... 10 to me means I'm dying, call 911) I'd say my pain right now is a 7/1-8/10. Is this normal? He's wanting to wean me off of the meds. now...my other concern is that I've been in the hydrocodone for 1year, so it's not as though I've only been in these meds for 3 weeks. My rheumatologist has said (just before the surgery) that he feels I should go onto /go to a pain management clinic due to my whole back & joints-and now this (which hopefully will lessen the neck pain eventually).
The back of my head feels shattered and neck is a jacked up piece of meat. Before I left hospital, I developed a large squishy lump to the right of my incision (the area that he also used to take tissue for the Dura patch). Many of the Neurosurgeon's looked at it...including my Neurosurgeon...I was told it was collected fluid that was filling the space...it has gone down, but that side of my head is 100% more painful than the left side of my incision-sleeping (position I can lay my head down on pillow) is limited as the right side is horribly painful..so I'm stuck with just left side. Ugh. Now I'm crying. It hurts so bad.
Is this pain so completely normal at this point? It still feels like surgical pain. I AM moving my neck around...doing little exercises to avoid stiffness. I'm taking it very easy and slowly. I'm walking, I've all functions-just taking it slowly, but the pain is what keeps me from even doing things slowly now. I'm just wondering if this is all normal? Again, I know I won't be pain free...but I do have other pain issues. This surgery (being "down" is exasperating those other issues. But the back of my head is SO painful...like every hair follicle hurts. Making it 8-12 hrs. w/the shirt acting meds. is wearing me down. Tears. It's all tears.
The surgery has gone so well but this pain is still a challenge to get it managed. I'd settle for a 5/10 pain. Was anybody else still struggling w/ 7-8/10 pain at this point, 3weeks post-op?
I know I've written a LOT....have been meaning to write on this forum for a good while! And now I've prob. written too much for anyone to read through.
Thank you to anybody who can help/offer any insight.
Truly appreciated!!!
Ahh....the turtle! That makes sense. Clever one!
Today was rough. I woke up and it felt like I was slapped in the face as if I'd just woken up from surgery....like some horrible nightmare. Overwhelming pain. It took about 4hrs. for it to calm down(as I'm trying to lower my meds., I'm not taking things on a scheduled basis, so I think the pain is coming on stronger-like now, I can feel that it's going to kick me hard soon. Ugh.).
Anyways, the "big hard mound" has gotten bigger... Not overwhelmingly bigger, but bigger for sure. That darn thing HURTS all in its own way, separately from the other pains.
ANYWAYS...Pillow! I have 7 pillows for different positions, support, etc. Just like you said sometime earlier. My nephew (thinks) says: "you're obsessed with pillows and blankets". But each pillow is there for a reason as is each blanket (when with a fever, my skin literally hurts, like fire...or...to touch, it's like fire or lightening striking me, so blankets range from light to heavy and certain softness). sorry-getting off track...
The pillow I've been using is a very light pillow called the " Sobakawa Micro-Bead Cloud Pillow ". My head does rest softly upon it...kind of an airy memory foam pillow. Any way I lay on it, it contours to my head-what I like about it is I'm a hot sleeper..I sweat & this pillow is constantly cool. That's like a gift from heaven!) I've never gotten an actual lumbar pillow..did that a really offer mportant, key/correct positioning for the head? Did it push against your neck though?
I am trying to learn patience and to give myself some slack....but I think the anxiety over the pain and especially over the "Big Hard Lumpy". My mom made me promise that if it either: keeps growing in size, continues to be this painful(does not decrease in pain OR gets any worse)...basically, if no improvement by the end of this week, that I go in and address it seriously. I fear being an "overreacter" though. Yet, I do agree that as it's so heavy
Literally & Figuratively. So...I don't know...we'll see.
Anyways, have you heard of/know of the pillow I'm using? The Sobakawa Cloud Pillow?
Lastly, I just want to thank you Selma...I know my posts are long, I know they're likely so scattered and my thoughts unorganized. I feel like I'm....annoyingly hard to "listen" to. So, I do appreciate your willingness to put up w/me. Thank you Kindly...you're a strong woman!!!
Today was rough. I woke up and it felt like I was slapped in the face as if I'd just woken up from surgery....like some horrible nightmare. Overwhelming pain. It took about 4hrs. for it to calm down(as I'm trying to lower my meds., I'm not taking things on a scheduled basis, so I think the pain is coming on stronger-like now, I can feel that it's going to kick me hard soon. Ugh.).
Anyways, the "big hard mound" has gotten bigger... Not overwhelmingly bigger, but bigger for sure. That darn thing HURTS all in its own way, separately from the other pains.
ANYWAYS...Pillow! I have 7 pillows for different positions, support, etc. Just like you said sometime earlier. My nephew (thinks) says: "you're obsessed with pillows and blankets". But each pillow is there for a reason as is each blanket (when with a fever, my skin literally hurts, like fire...or...to touch, it's like fire or lightening striking me, so blankets range from light to heavy and certain softness). sorry-getting off track...
The pillow I've been using is a very light pillow called the " Sobakawa Micro-Bead Cloud Pillow ". My head does rest softly upon it...kind of an airy memory foam pillow. Any way I lay on it, it contours to my head-what I like about it is I'm a hot sleeper..I sweat & this pillow is constantly cool. That's like a gift from heaven!) I've never gotten an actual lumbar pillow..did that a really offer mportant, key/correct positioning for the head? Did it push against your neck though?
I am trying to learn patience and to give myself some slack....but I think the anxiety over the pain and especially over the "Big Hard Lumpy". My mom made me promise that if it either: keeps growing in size, continues to be this painful(does not decrease in pain OR gets any worse)...basically, if no improvement by the end of this week, that I go in and address it seriously. I fear being an "overreacter" though. Yet, I do agree that as it's so heavy
Literally & Figuratively. So...I don't know...we'll see.
Anyways, have you heard of/know of the pillow I'm using? The Sobakawa Cloud Pillow?
Lastly, I just want to thank you Selma...I know my posts are long, I know they're likely so scattered and my thoughts unorganized. I feel like I'm....annoyingly hard to "listen" to. So, I do appreciate your willingness to put up w/me. Thank you Kindly...you're a strong woman!!!
COMMUNITY LEADER
I never heard of using the bandanna....quite odd....I did get in touch with our member who has had more then her share with this issue......she has had so many ups and downs with this .....but I am sure she will post when she can....
What kind of pillow are you using? when I was post op I used a lumbar pillow as it was small but worked well for keeping my incision off the bed, and small enuff to not touch the incision...plus it is memory foam so it was very comfy too.
That will all get better with time....it all does....
You see the turtle by my name....guess why I have it.
I can't seem to sleep...that's just not good. Mostly the pain & complete inability to get even semi-comfortable. I can't just take more pain meds that as is rx'd, so...I'll just try to keep my eyes closed and no crying.
I was wondering, might it be a good idea to make a specific post regarding the "Bug Squishy" turned a very rock hard "solid hard lump"...
?
Maybe it will catch someone else's attention that did have such an experience....as this is just a miserable addition to the already rough pain I'm grappling with. Right now- up at nearly 4am still, miserable is a kind/soft word to use.
I was wondering, might it be a good idea to make a specific post regarding the "Bug Squishy" turned a very rock hard "solid hard lump"...
?
Maybe it will catch someone else's attention that did have such an experience....as this is just a miserable addition to the already rough pain I'm grappling with. Right now- up at nearly 4am still, miserable is a kind/soft word to use.
Ahhh....didn't realize there were people's journals to read! I don't hop on many forums. I've not used my computer yet as I figured the positioning would be bad no matter what. I've been using my phone.(I've been careful not to put my head in a downward position-be it sleeping, resting or like here, on my phone). I've actually made a habit of it that if I'm using my phone-FB, IM (especially since there's a lot of "talk"/writing about my grandfathers death...his Memorial service was today-it was put off a bit so family outside state could arrange to be together) that I use the soft collar that my Rheumy. rx'd me...and then NS was going to suggest one for giving my neck a break sometimes, but I'd gotten one. I don't like to use it often at all as I don't think it wise for my muscles to become weak DUE to it. But, to avoid any downward positioning while I write via iPhone, For the majority of this writing,/posting, I use it then.
I'd stocked up on books of my favorite Irish Author's...rare hard to find ones that I was excited at the notion of reading, but the positioning of holding a book and reading for a length of time is rough and more so, it feels heavy on my mind. It's like my brain doesn't want to concentrate too much. So, they'll stay on the shelf for now.
Yea, with the "Bug Squishy"(when it was a soft fluid like mound & now, as it's migrated down further towards the base of my head, it's turned from " Big Squishy" to "Hard Lump". Upon leaving the hospital, they looked at it again & said to keep an eye on it, but that my body would likely absorb it. The CT scan that I had for my for my 2 week f/u notes it as " a seroma or a small CSF leak". They said (during & before leaving hospital), to try and lie down w/head (back of head) against pillow to compress it. As well, at 2week f/u I asked about it & was told that if I had a bandana (or head scarf..but I have a dozen square bandanas that I just fold and wrap around my head, tie at front-like the 50's pin-up girl style) to just tie it not too tight, but enough to put pressure on the lump to help make my body absorb it. Right now, I'm wondering how it will absorb this hard lump... I understood when it was " Big Squishy", as I knew it was all "fluidy"... (yea, made up word). But I tell us, this sucker is tingly, nobody can even touch it/get close to it w/o me wincing in pain... I can barely touch it. I was hoping others may have had experiences w/such lumps...not a little lump either...mound-like. I don't know if I should worry about it. I can't tell if I have "fevers" b/c I still get a fever at least once a day... But nothing (generally) over 101.5... True, it does get over a "low-grade", but that's nothing odd to me. And, I will inevitably get a fever when I'm in pain. They always go hand in hand.
So....yea, a bandana ties right enough to compress it, to aide in it absorbing into my body. Wondering at what point it is something to worry about. Hurts like a heavy brick though, I tell ya...that pain on top of the general pain *****. So you've never heard of such squishy or hard mounds...as well, compressing them with say a bandana/ similar way to compress said lumps?
As for my "time", I suppose I need to cut myself some slack. Just take it a day at a time...deal with what's in front of me day to day (right now, the pain & the lump) and not keep thinking about where I'm at in some kind of definite timeline that doesn't truly exist.
I do apologize if I've been writing too much and likely being scattered with my thoughts....I know my lengthy writing is annoying to me... My circular writing. Annoying. I suppose I feel confused as I was so aware of my condition for so long, then the symptoms jumped out within a fairly quick timeframe(and the severity) yet I feel stunned by a condition I knew much about, I knew what the surgery entailed, but not how you FEEL after the surgery. I suppose I knew facts and such but didn't think of the recovery. And it freaks me out when I'm told "you've already asked what day is it 10x's today...and it's still Monday". I don't forget everything...but there are some little issues.
(And there I go again on another tangent ...I lack direction even in writing these days!)
Ugh.
Again, I do apologize for my scattered mess.
I'd stocked up on books of my favorite Irish Author's...rare hard to find ones that I was excited at the notion of reading, but the positioning of holding a book and reading for a length of time is rough and more so, it feels heavy on my mind. It's like my brain doesn't want to concentrate too much. So, they'll stay on the shelf for now.
Yea, with the "Bug Squishy"(when it was a soft fluid like mound & now, as it's migrated down further towards the base of my head, it's turned from " Big Squishy" to "Hard Lump". Upon leaving the hospital, they looked at it again & said to keep an eye on it, but that my body would likely absorb it. The CT scan that I had for my for my 2 week f/u notes it as " a seroma or a small CSF leak". They said (during & before leaving hospital), to try and lie down w/head (back of head) against pillow to compress it. As well, at 2week f/u I asked about it & was told that if I had a bandana (or head scarf..but I have a dozen square bandanas that I just fold and wrap around my head, tie at front-like the 50's pin-up girl style) to just tie it not too tight, but enough to put pressure on the lump to help make my body absorb it. Right now, I'm wondering how it will absorb this hard lump... I understood when it was " Big Squishy", as I knew it was all "fluidy"... (yea, made up word). But I tell us, this sucker is tingly, nobody can even touch it/get close to it w/o me wincing in pain... I can barely touch it. I was hoping others may have had experiences w/such lumps...not a little lump either...mound-like. I don't know if I should worry about it. I can't tell if I have "fevers" b/c I still get a fever at least once a day... But nothing (generally) over 101.5... True, it does get over a "low-grade", but that's nothing odd to me. And, I will inevitably get a fever when I'm in pain. They always go hand in hand.
So....yea, a bandana ties right enough to compress it, to aide in it absorbing into my body. Wondering at what point it is something to worry about. Hurts like a heavy brick though, I tell ya...that pain on top of the general pain *****. So you've never heard of such squishy or hard mounds...as well, compressing them with say a bandana/ similar way to compress said lumps?
As for my "time", I suppose I need to cut myself some slack. Just take it a day at a time...deal with what's in front of me day to day (right now, the pain & the lump) and not keep thinking about where I'm at in some kind of definite timeline that doesn't truly exist.
I do apologize if I've been writing too much and likely being scattered with my thoughts....I know my lengthy writing is annoying to me... My circular writing. Annoying. I suppose I feel confused as I was so aware of my condition for so long, then the symptoms jumped out within a fairly quick timeframe(and the severity) yet I feel stunned by a condition I knew much about, I knew what the surgery entailed, but not how you FEEL after the surgery. I suppose I knew facts and such but didn't think of the recovery. And it freaks me out when I'm told "you've already asked what day is it 10x's today...and it's still Monday". I don't forget everything...but there are some little issues.
(And there I go again on another tangent ...I lack direction even in writing these days!)
Ugh.
Again, I do apologize for my scattered mess.
COMMUNITY LEADER
I will have to look at my journal to see when I started doing more but I know I was more then 3 months post op. My hubby, bless him did everything, so there was no need for me to try.
I was going out for walks....but I made sure there were benches to sit and I was using my walker...( I have had a cane sine 2000 so, I could not walk with out something to help balance me.
Waking around the first floor of my home was also something I was doing.....but I was not even on the computer like you are....I was told no reading etc as your brain was traumatized as well with this surgery and to rest it too. So I took my time getting back to this forum post op....as I said I was very emotional and felt like it would not do anyone any good if I was getting more stressed over others issues as I do research things and knew I would not be up to giving it all I wanted to.....
Throwing the ball even 5 ft might be too much for how you are feeling....listen to your body if you feel worse after certain activities then avoid it a little longer....but walk as much as you can....but in periods of time you can take....rest a few hours then go again....
I never heard of wrapping the lump up....hmmm strange.
Question-I'm feeling like I'm being lazy, but I also hurt too much and have other odd sensations that prevent me from doing all that much anyways...but how long did you stay kinda...down, physically...where you were pretty much bed-resting it/only at maybe 50% "up". I'm still SO easily tired-even if I fight the pain & try to do something, it takes so little to push me back down & into bed. (like right now, I can't do housework, walk the dog...heck..dishes are a big "who-hoo..now I need to go lie down) I'm still feeling rough with the pain...I was told to use a bandana to wrap/compress this hard hand-sized "lump". I don't know which I liked better-when it was a "Big Squishy" (felt like if you pressed slightly too hard, your finger would go right through!) or now, as the large hard as a rock "lump". It certainly isn't helping w/the pain... It's adding to it.
Ugh. I know I'm being too hard on myself-not just .... Giving this all "time".
But yea...just wondering how long you were kinda for a good majority of the day, "down", after the surgery. I'm up, can walk, there's times I can lightly toss my dogs ball (I'm sure he's let down as it doesn't get thrown more than 5-10feet...and a lame toss at that!), but other than small walks, small activities-all depending on extent of pain from hour to hour, I'm on bed-compressing my big "lump", using ice for head, heat for shoulders. Am I within range? I know though... everybody's so different...each surgery effects each person so differently... And it's the brain. Nothing TOO predictable about how each brain responds to this whole dealio! I just hope I'm not "behind"... I want to make sure I'm not down too long-but I also know it takes time-and apparently, I'm not giving myself patience. :/
Ugh. I know I'm being too hard on myself-not just .... Giving this all "time".
But yea...just wondering how long you were kinda for a good majority of the day, "down", after the surgery. I'm up, can walk, there's times I can lightly toss my dogs ball (I'm sure he's let down as it doesn't get thrown more than 5-10feet...and a lame toss at that!), but other than small walks, small activities-all depending on extent of pain from hour to hour, I'm on bed-compressing my big "lump", using ice for head, heat for shoulders. Am I within range? I know though... everybody's so different...each surgery effects each person so differently... And it's the brain. Nothing TOO predictable about how each brain responds to this whole dealio! I just hope I'm not "behind"... I want to make sure I'm not down too long-but I also know it takes time-and apparently, I'm not giving myself patience. :/
COMMUNITY LEADER
I was Mis-DX'd with fibro too....seems many Drs are not aware of the Chiari/EDS connection.
Oh I know just how you feel....I was on an emotional roller coaster post op....and it seems typical for many of us at this point in our journey.....
My deepest Sympathies on the loss of your Aunt and Grandfather.....I can only imagine what you are going thru as I did not have that to deal with n top of the surgery.....which is enuff.
No not at all.....and you need to vent so you do not feel so overwhelmed....
I remember I was crying at all Hallmark like commercials....at funerals I needed more consoling then the widow...for some one I didn't know....so I stopped going to funerals....yeah....it got that bad.....
BUT I do not get as emotional now like I did post op....it was strange and so unlike me....but I started getting like that b4 y surgery....and it scared me as I was not someone that cried at work...but those last few months b4 I got a DX it was just strange.
3 weeks is not long enuff for you to think you should be doing that much better....I was still using a walker at 3 weeks post op.....
No worries...we all go thru the same stages of grief.....and it takes time to heal from this ...and you will need patience....a lot of it....but we are here to help.....hang in there <3
Thank you SO very much Selma. I truly appreciate all the help, info. and support. Now I see what you were saying about EDSers and pain meds-before operations. I was concerned about pain management w/this surgery due to the fact that I'd been on the hydrocodone already. That is a subject I had discussed w/my Neurosurgeon (I had my mom come with me for all the meetings I had w/Neurosurgeon that id decided upon...as I am not married yet... No boyfriend/a close friend to "be there" ...Just a single gal with a good dog and one GOOD blessing of a mother!). But he agreed & said he knew he'd have to take a different approach w/ pain management due to that factor.
Indeed, crying does tense up those muscles...(my Rheumy. and other specialists I've seen have thought I might have Fibro. due to widespread pain & the flare-ups... but something in my gut keeps telling me it's something else...I'm wondering if it IS in fact EDS... )
I seem to be very emotional since the surgery...up's & downs.(Well, it doesn't help that my Grandpa passed away the night before my surgery....which was already an emotional day as it was the 1yr. date that my Aunt, whom I was very close to passed away. The day of my surgery, Sept. 3rd was my Grandpas birthday...so he passed the day before his birthday). I know crying doesn't help. It just seems that I almost need to (for a few reasons right now-tomorrow is my Grandpas memorial...arrangements had to be paused to allow family to all be here). But besides all "that", I seem to be on an emotional roller coaster since the surgery. I don't know if that's something others experience or if it's just me being overly emotional ( I know that pain makes me emotional and scared). As well, the recent unfortunate passings have added to the emotions.
The back of my head, to the right of my incision, the once "big squishy"(as I named it so) has become a big hard lump...I can cup my hand over it & it fill my whole hand... That is a source of a different throbbing and heavy hard pain. When it was "Big Squishy" I felt safe that it would just be absorbed by my body....but now that it's "big hard lump", I don't know what to think.... I just keep checking the size each day(as I know it fits in my whole hand-so it'll be easy to tell if it has shrunk or gotten bigger).
My Goodness....I'm so sorry that I'm all over the place!!!
:( I know reading this must be very annoying and difficult as I'm dealing with multiple issues and questions...
An added frustration-I got another call from my Neurosurgeon (his office) today, saying that he would not prescribe me any more meds (he's only prescribed twice-at discharge from hospital and then at my 2 week follow up). But there must have been a miscommunication from when I called his office today-(explaining my quandary -that I'm having a hard time making it every 8-12 hrs. for the 5mg. Percocet. At about 6 hrs, I'm in a very tense , hold your breath pain & by 8 hrs, it's extreme & feels like I can't catch up at that point). Apparently, the msg. sent to him was that I was asking for refills-which I wasn't. Not at all. So, his "reply" was "I'm not prescribing anything else".So now it appears he thinks I'm already out/needing a refill a mere week later (I saw him last Friday for my 2week f/u, in which he dx'd meds for the 2nd time. ) which is not the case and that's why he isn't even addressing the 8hr. issue. I don't know how to fix this.
It's being so hard not to cry, but I will try to refrain. I just feel an emotional mess while the back of my head still feels like a shattered mess. And yes, I'm SO just plain ol' complaining. Then I feel like I'm a baby and that 3 weeks out & I SHOULD be all good, not having any issues, off meds, and now just on the upside of the surgery (which partly I am... It's not ALL downhill- there are already things that I've found relief from -symptoms of Chiari- that have already shown to be decreased or disappeared! So that's great!) but I get down and mad at myself for not being in such a good place w/the pain.
I'm such a mess. With a big hard lumpy on the back of my head. :/
Sorry I'm so bummed.
Indeed, crying does tense up those muscles...(my Rheumy. and other specialists I've seen have thought I might have Fibro. due to widespread pain & the flare-ups... but something in my gut keeps telling me it's something else...I'm wondering if it IS in fact EDS... )
I seem to be very emotional since the surgery...up's & downs.(Well, it doesn't help that my Grandpa passed away the night before my surgery....which was already an emotional day as it was the 1yr. date that my Aunt, whom I was very close to passed away. The day of my surgery, Sept. 3rd was my Grandpas birthday...so he passed the day before his birthday). I know crying doesn't help. It just seems that I almost need to (for a few reasons right now-tomorrow is my Grandpas memorial...arrangements had to be paused to allow family to all be here). But besides all "that", I seem to be on an emotional roller coaster since the surgery. I don't know if that's something others experience or if it's just me being overly emotional ( I know that pain makes me emotional and scared). As well, the recent unfortunate passings have added to the emotions.
The back of my head, to the right of my incision, the once "big squishy"(as I named it so) has become a big hard lump...I can cup my hand over it & it fill my whole hand... That is a source of a different throbbing and heavy hard pain. When it was "Big Squishy" I felt safe that it would just be absorbed by my body....but now that it's "big hard lump", I don't know what to think.... I just keep checking the size each day(as I know it fits in my whole hand-so it'll be easy to tell if it has shrunk or gotten bigger).
My Goodness....I'm so sorry that I'm all over the place!!!
:( I know reading this must be very annoying and difficult as I'm dealing with multiple issues and questions...
An added frustration-I got another call from my Neurosurgeon (his office) today, saying that he would not prescribe me any more meds (he's only prescribed twice-at discharge from hospital and then at my 2 week follow up). But there must have been a miscommunication from when I called his office today-(explaining my quandary -that I'm having a hard time making it every 8-12 hrs. for the 5mg. Percocet. At about 6 hrs, I'm in a very tense , hold your breath pain & by 8 hrs, it's extreme & feels like I can't catch up at that point). Apparently, the msg. sent to him was that I was asking for refills-which I wasn't. Not at all. So, his "reply" was "I'm not prescribing anything else".So now it appears he thinks I'm already out/needing a refill a mere week later (I saw him last Friday for my 2week f/u, in which he dx'd meds for the 2nd time. ) which is not the case and that's why he isn't even addressing the 8hr. issue. I don't know how to fix this.
It's being so hard not to cry, but I will try to refrain. I just feel an emotional mess while the back of my head still feels like a shattered mess. And yes, I'm SO just plain ol' complaining. Then I feel like I'm a baby and that 3 weeks out & I SHOULD be all good, not having any issues, off meds, and now just on the upside of the surgery (which partly I am... It's not ALL downhill- there are already things that I've found relief from -symptoms of Chiari- that have already shown to be decreased or disappeared! So that's great!) but I get down and mad at myself for not being in such a good place w/the pain.
I'm such a mess. With a big hard lumpy on the back of my head. :/
Sorry I'm so bummed.
COMMUNITY LEADER
I was not intending to specify EDS for not being on pain meds long term but any pain related condition.....and going for surgery it can make it harder to get relief as they tend to not help....we can get immune to their benefits...
EDSers tend to not be able to feel benefits or have opposite reactions to some meds....so it can really be difficult to find the proper pain management post op, let alone for continued pain
BTW- I use to get those fevers too....not the same as you...but it would come and go in waves....always with a major headache.
Oh and I also prop myself up with pillows too....lol....
I understand how you feel....and I wish you didn't have that pain...but try other things when you are in pain....and try not to cry as it will make you feel worse....the crying will stress all those muscles in the area of the surgery and it is tender now.....so try to fight the urge to cry.....fill the tub with nice warm water light a few candles and play your fav music and try to relax when you have pain,,,,
Sending prayers to help you thru this <3
hello Selma! Thank you for all your help! I wrote my previous post last night...I thought I hit "post comment" button, but apparently (as I found this morning when I opened my phone), I didn't click "post.." , so I did do this morning. But I wanted to reply to your ... Reply ;)
So I'll look into the other symptoms of EDS Hypermobillity...I have had a hernia repair-twice. I've ALWAYS taken along time to heal. I can't say that I totally bruise easily. But I've had a very large share of bruises in my life-ljust figure I'm clumsy&hallways knocking myself around. A strange (not strange weirdo) symptom is that I've always had FUO (fever of unknown origin) in my charts. But it goes hand in hand with the pain...joint pain. The second I feel a flare up of joint pain I know I've a big fever either already present or coming on.everything hurts...it's as if I have the beginning stages of a horrible flu coming on, but it's never a flu... I just get the darn fever & horrible joint pain & spine pain for hours to a whole day battling it. It's never a fever of 99.1. It's always well over 100°... Usually high 100's to 101.5°+. It's been this way since mid-teens (I'm now 40). My mom remembers me always crying about my spine and she could never comfort me by rubbing my back... As it hurt my skin. Skin, spine & joints ... Bad... Especially with the fever.
Ugh. Sorry, I don't know if that means anything.
I sleep with so many pillows to prop up my back, my neck... To keep my whole body "in position" so it doesn't fill apart on me. It's been this way for so long. Just a "way of life" to me.
I called my Neurosurgeon's office-asked if he would extend the weaning off the meds. Situation. But, I got a return call saying that he would not be prescribing me any more meds. So, I've a week's left of meds. And he said that no, I needed to keep it as written... The short acting being 8-12hrs. That's going to be rough-only b/c I spend 4-5 hrs. in intense pain...it's like a set-back and I'm constantly playing catch-up at the 8hr. mark. The last 2days I've been only a had couple windows of real relief where I'm not tensed up, in a 6/10 pain. So, I feel discouraged.
If with EDS, it's best not to be on pain meds long term, (As I am with my other disc issues & widespread joint & muscle like pain, as well as dealing with this current surgery ), how is one to deal with what is often debilitating pain? There are days that I'm literally laid up for 8hrs. where crying hurts.
As for Physical Therapy, yes...,I was sent home w/exercises to start doing & then in about 2 weeks, I will be starting to go to Physical Therapy Sessions. My Neurosurgeon said these light exercises 1st, then at about 6 weeks, he likes to start physical therapy.
I've been going to physical therapy for years-with (by) my Rheumy. to strengthen core and neck.
Ugh...again. I've been doing the ice, heat on shoulders, muscle relaxers, keeping my neck moving & doing the exercises.,I just don't want to get those 4 hrs. where it's the pain (back of head & neck...still feels like surgical pain) that all I can do is cry.
I don't wish to be in a position where I am in any pain. Not the life I wanted. Sad. Emotional few days.... I suppose it's time for a good cry right now...no stopping it
:(
So I'll look into the other symptoms of EDS Hypermobillity...I have had a hernia repair-twice. I've ALWAYS taken along time to heal. I can't say that I totally bruise easily. But I've had a very large share of bruises in my life-ljust figure I'm clumsy&hallways knocking myself around. A strange (not strange weirdo) symptom is that I've always had FUO (fever of unknown origin) in my charts. But it goes hand in hand with the pain...joint pain. The second I feel a flare up of joint pain I know I've a big fever either already present or coming on.everything hurts...it's as if I have the beginning stages of a horrible flu coming on, but it's never a flu... I just get the darn fever & horrible joint pain & spine pain for hours to a whole day battling it. It's never a fever of 99.1. It's always well over 100°... Usually high 100's to 101.5°+. It's been this way since mid-teens (I'm now 40). My mom remembers me always crying about my spine and she could never comfort me by rubbing my back... As it hurt my skin. Skin, spine & joints ... Bad... Especially with the fever.
Ugh. Sorry, I don't know if that means anything.
I sleep with so many pillows to prop up my back, my neck... To keep my whole body "in position" so it doesn't fill apart on me. It's been this way for so long. Just a "way of life" to me.
I called my Neurosurgeon's office-asked if he would extend the weaning off the meds. Situation. But, I got a return call saying that he would not be prescribing me any more meds. So, I've a week's left of meds. And he said that no, I needed to keep it as written... The short acting being 8-12hrs. That's going to be rough-only b/c I spend 4-5 hrs. in intense pain...it's like a set-back and I'm constantly playing catch-up at the 8hr. mark. The last 2days I've been only a had couple windows of real relief where I'm not tensed up, in a 6/10 pain. So, I feel discouraged.
If with EDS, it's best not to be on pain meds long term, (As I am with my other disc issues & widespread joint & muscle like pain, as well as dealing with this current surgery ), how is one to deal with what is often debilitating pain? There are days that I'm literally laid up for 8hrs. where crying hurts.
As for Physical Therapy, yes...,I was sent home w/exercises to start doing & then in about 2 weeks, I will be starting to go to Physical Therapy Sessions. My Neurosurgeon said these light exercises 1st, then at about 6 weeks, he likes to start physical therapy.
I've been going to physical therapy for years-with (by) my Rheumy. to strengthen core and neck.
Ugh...again. I've been doing the ice, heat on shoulders, muscle relaxers, keeping my neck moving & doing the exercises.,I just don't want to get those 4 hrs. where it's the pain (back of head & neck...still feels like surgical pain) that all I can do is cry.
I don't wish to be in a position where I am in any pain. Not the life I wanted. Sad. Emotional few days.... I suppose it's time for a good cry right now...no stopping it
:(
COMMUNITY LEADER
One of our members should be able to answer some of your questions regarding this.....zygy2...I will let her know to pop onto this thread
Out of curiosity, do many of you who've had the surgery, experience a squishy "mound"/ "pouch" to the right (mine was/is to the right of the incision...maybe others experience it on the left of incision? )
Io can cup it with my whole hand-that's the size of it. It has gone down. Both ways. It has shrunk, but has also gone from mud to upper part of skull to now the lower part of skull/base of skull. Originally, it was extremely squishy. Now, it's a very hard mound/lump. The parts that went down in the upper regions of skull are SO extremely painful & sensitive ...just barely to the touch-like the hair there even hurts. ( I saw my Neurosurgeon & others before I left hospital... I was told it could be a mixture of CSF-though imtages show nothing leaking from dura patch/dura. So, I was told it could be CSF from another place with other collected fluids filling the area that was pulled back/lifted to remain
Any experiences with such squishy that migrated & went from sift fluid filled pouch turned very hard mound that's very....not just uncomfortable, but downright painful?
Any expeiences as such???
Again, ANY experience's, info., insight is SO greatly appreciated!
Io can cup it with my whole hand-that's the size of it. It has gone down. Both ways. It has shrunk, but has also gone from mud to upper part of skull to now the lower part of skull/base of skull. Originally, it was extremely squishy. Now, it's a very hard mound/lump. The parts that went down in the upper regions of skull are SO extremely painful & sensitive ...just barely to the touch-like the hair there even hurts. ( I saw my Neurosurgeon & others before I left hospital... I was told it could be a mixture of CSF-though imtages show nothing leaking from dura patch/dura. So, I was told it could be CSF from another place with other collected fluids filling the area that was pulled back/lifted to remain
Any experiences with such squishy that migrated & went from sift fluid filled pouch turned very hard mound that's very....not just uncomfortable, but downright painful?
Any expeiences as such???
Again, ANY experience's, info., insight is SO greatly appreciated!
COMMUNITY LEADER
There is much dispute btwn a EDS DX and hypermobility....there are other symptoms that will clinch a EDS DX....blue sclara, hernia,easy to bruise, slow to heal, and a few other.....TMJD is something those with EDS tend to be DX'd with....
Yes, hypermobile EDS is due to a connective tissue issue...
They do a tissue biopsy when they feel it is VEDS.....but not for the hypermobility type...then again it can depend on the Dr.....
I would suspect EDS and it can be the reason pain meds do not help in addition to the fact you were on a pain med long b4 surgery....it is bet we not be on long term pain meds so they are effective post op.
It is highly possible EDS is waking you....I wake in pain...mostly in my hips or shoulder when sleeping on my side.my shoulder will pop out of joint and it hurts like heck...same with my hip....then it will throb and keep me awake....EDS can also cause headaches due to the weakened area of the spine post a PFD surgery where bone is remove typically from C1 and C2 ...we become like bobble heads....the neck muscle needs to be strengthened. Were you given exercises to do post op?
interesting, as I was reading your posts about EDS, my Rheumatologist, when I first saw him he said I was extremely hypermobile. He has brought that to my attention a few times...telling me that I will develop joint issues more quickly, etc. but does that mean EDS? I've been trying to piece it together. I've always had certain joint problems. And my jaw...."the jaw of a 90yr. old woman" a TMJ/TMD specialist said of my 3-d/panoramic jaw images & exam.
But indeed, my Rheumy. has mentioned so many times that I'm extremely hypermobile. From what I gather,,is that a type of EDS-due to connective tissues?
(Sorry for my lack of knowledge/if I got it wrong). Is there a test (is it the biopsy dealio?) that tests the tissues for EDS? I've always been a very slow healer after injuries&I even simple surgeries (to which ALL surgeries now seem "simple"!!! ) I just worry at the stress my body goes into when it's in such pain-is that hindering the healing process? Sleep interrupted b/c of pain? (Not just insomnia...I know what that's like. Struggle w/it already. What wakes me is the pain.)
So, I should not be experiencing this kind of pain at this point? This is not normal? Are most people not needing meds at this point?
Sorry for scattered questions.
Again, thank you for any info. And insight...much appreciated!
But indeed, my Rheumy. has mentioned so many times that I'm extremely hypermobile. From what I gather,,is that a type of EDS-due to connective tissues?
(Sorry for my lack of knowledge/if I got it wrong). Is there a test (is it the biopsy dealio?) that tests the tissues for EDS? I've always been a very slow healer after injuries&I even simple surgeries (to which ALL surgeries now seem "simple"!!! ) I just worry at the stress my body goes into when it's in such pain-is that hindering the healing process? Sleep interrupted b/c of pain? (Not just insomnia...I know what that's like. Struggle w/it already. What wakes me is the pain.)
So, I should not be experiencing this kind of pain at this point? This is not normal? Are most people not needing meds at this point?
Sorry for scattered questions.
Again, thank you for any info. And insight...much appreciated!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
No....that is not "normal" BUT, you being on pain meds for a long period b4
and will make keeping pain under control.....I always tell everyone to keep on your pain med schedule ...keeping ahead of the pain instead of waiting until it gets bad or you feel you need meds,,,
Did your Dr rule out EDS? I ask bcuz of ALL of your disk issues and EDS will affect ALL of your joints...and even cause you issues with medicines.
EDS can also cause us to heal slower then most....try to get your Dr to extend your pain meds a while longer....and slowy taper off them.
If you continue to have this pain....I would ask your Dr to look again to see what is going on...
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