Aa
Problems still after Chiari surgery post-op Pain & strange PM Dr. Appt.
Please bare w/me here..I know this will be long&I don't know how to explain this "short style" :/
This really is a PM question.
I had Chiari decompression surgery Sept. 2015 (Crainectomy, C1laminectomy w/duraplasty).The surgery was "brutal"- just as Neurosurgeon said it would be&it's been a "very rough recovery",just as he said it would be. I developed a large "collected fluids" mound on my head. This eventually gravitated towards the base of my skull, flattened out a bit&became hard (I call it "the brick"). This is certainly one of the most intense sources of pain. It's a hard 8/10 pain. All my neck muscles that are at a 5-6/10 pain.The neck muscle spasms are frequent, jolting&exhausting. Soft tissues at base of skull are painful to a soft touch..Also a lot of pressure IN my head-behind my eyes, etc. So, I've more than a few different kinds of pain.
My Neurosurgeon has had me on 30mg Morphine Sulphate ER 2x's per day w/the same hydrocodone as pre-surgery,as needed (not always 3x's per day. Some days it 1,some days it's 2).The "brick" is causing the worst of pain(laid up in bed, debilitating pain w/o meds).The meds at least make it manageable. Brings it to about a steady 4/10 maybe 5/10 at times pain.
My NS is monitoring the "brick",I get a CT scan every few wks.-the last one,2&1/2wks. ago, brick" hasn't budged a bit.
My NS referred me to a Pain Management Clinic. My appt. was yesterday.I thought PM would be integrative methods. The appointment was for 45min, but I only saw the 2 Dr.'s for a total of 10-15 min.The 1st Dr. said that according to my NS notes, CT's & Physical Therapy evaluation notes,I was still in a very "acute" stage&it could last@ least 6mo.-some people heal slower&the complication isn't helping. He said he wanted to wait w/any injections b/c of the "collected fluids" shown on CT& figure out dif. future injection,since I'm allergic to steroids.He left&came back w/the lead PM doctor.This Dr.never really spoke to me.He basically only spoke to the other Dr. He just told me what he was going to do (amnitriptyline &Steroid injections!Despite my allergy,he said I'd be fine w/it!).He asked if I had any questions as he was opening the door to leave.(I though I'd at least be examined,questions for me,talk about the PT...other things like a Tens Unit perhaps.I thought there'd be dialogue!)When I said yes,I do have questions,he seemed irritated.I asked about acupuncture&other tools, but was told I wouldn't benefit from them at this point.I asked about my muscle relaxers&pain meds.(my NS said they'd take over meds.,pain&muscle relaxers)The Dr. had the door opened@that point, ready to get out if that room&I felt pressure to hurry...He said that he saw that over the years I've tried Cyclobenzaprine, Zanaflex&Methocarbomol &since those didn't help,nothing else would,so no need for any muscle relaxers.As for pain meds.,he said that at my age,I shouldn't be experiencing such pain(I'm 41)&that he doesn't prescribe pain meds. I told him that my NS said that PM would be taking over my current meds&would help me w/other methods too&that's why my NS only rx'd my meds until the day I saw PM.The Dr. was visibly&clearly irritated. He said I should go back to my NS for that-I said "but that's one of a few reasons he sent me here". The Dr. again said that someone my age shouldn't be experiencing pain that would need that kind of medication..I felt horrible...like I should be saying "sorry" or something for holding him up! I was so confused b/c my NS. said that along w/managing pain meds, they'd have other ideas to manage what's going on.It was such a strange quick appt w/no questions about what helps,what doesn't, where/what the source of pain is, no an exam of any sorts...nothing like that at all. So, he said " I'll have you off all pain meds in less than 2 weeks, because "there's just no reason you need to be on them at your age". He said he'd write a script for 1week of 15mg. Morphine IR 2x's per day&said he might write one for the next week for 15mg Morphine IR taken 1x per day&then I'll stop&be done.He said I don't need to take hydrocodone anymore.Then he left very abruptly. The entire "time" I saw the two doctors was def. less than 15min. I left so brushed off,confused, I cried in the car& got my mom all worried(she has to drive me everywhere-NS said I still cannot drive-ROM in neck is still so bad).
I'm more than a little confused about this whole PM thing. I don't want to be on pain meds for life-one of many reasons I had the surgery(pain, numbness on left side, tinnitus, neurological issues&of course that little thing called cerebral spinal fluid flow being blocked)!It's been the prayer going into the surgery& ever since- that I'll find relief @the end of this. But, I'm still dealing with post-surgical issues that are so profoundly painful. I've found my baseline pain by not taking a morning ER med, waiting to see where the pain level is-to make sure I know true level&it's at a hard 8. I do believe that once the "brick" absorbs/ goes away, the pain levels will drastically reduce!
I'm SO confused..by what age has to do w/ any of this,by how little time I was w/these Dr's,how LITTLE they spoke to!I'm let down.Scared.I was hoping for a TEN's unit,acupuncture/other things besides JUST managing this w/pain meds. Which I'm now being taken off when I know it's still s curl up&cry, holding your breath,hold still, try not to writhe pain. No muscle relaxers&now,I'm going from taking 30mg.Morphine ER 2x's per day&Hydrocodone for breakthrough to 15mg IR 2x per day,no hydrocodone&I'll be taken off completely w/in 2wks..(I've arthritis in spine&tumors-benign-between t10-t12.But their worry of those is that they'll fracture the vertebrae-so, yet another thing I'm monitored for)There's issues,but I can deal w/those- compared to this heavy painful mass on the back of my head.Even NS is discouraged by it&says if it doesn't go away in a couple mo./show ANY decrease in size,we'll have to approach it surgically,something I'm praying I don't have to undergo. I pray it resolves itself!
I'm just wondering if this is normal?I've never been through this,never been sent to a PM Clinic.
I just went in thinking,as my NS said, that it would be not just pain medication,but they'd also have other methods&tools to help me.I'm all for a NON Steroid injection(steroids=SO very bad for me).I'm all for adding therapies.I WANT a TEN's unit...but not only was NONE of this discussed. I was just told no pain meds. especially b/c at my "age" I shouldn't have this kind of pain.I'm looking forward to being off meds like this, but I certainly do know where the pain level is&as I'm finding today, the 15mg. Morphine IR, 2x's per day,the pain is intensifying big time. My mom is worried b/c my head is disappearing into my shoulders again. Holding back tears b/c I know it'll make my muscles more tense than they already are. My NS said I needed to stay on the 30mg. at last appt.,to allow my body to move around as it NEEDS to do.I'm still at 8/10 pain!
Am I crazy or is this how PM works??? I want this all to end so that I can carry on with life... But I need this painful, breathless painful brick to go away. NS agreed,the brick is causing alot of problems(besides pain,he thinks it's causing the continued dizziness, headaches, stuttering... etc)
I am headed for pain hitting soon.. I don't know what think.Is this what PM is or am I crazy? The previous regimen "managed" it,allowed me to push myself to regain stamina.Be a person it crippled by pain!. I'm not expecting the pain to"go away" 100% ,that's an unrealistic expectation.To pull me off my meds.w/the pain I have scares me.The PM Dr's didn't even talk to me about my pain. Any insight would be greatly appreciated. I know I've written WAY to long of a post, I do apologize. Really...sorry. Again, any insight, advise is greatly appreciated.
This really is a PM question.
I had Chiari decompression surgery Sept. 2015 (Crainectomy, C1laminectomy w/duraplasty).The surgery was "brutal"- just as Neurosurgeon said it would be&it's been a "very rough recovery",just as he said it would be. I developed a large "collected fluids" mound on my head. This eventually gravitated towards the base of my skull, flattened out a bit&became hard (I call it "the brick"). This is certainly one of the most intense sources of pain. It's a hard 8/10 pain. All my neck muscles that are at a 5-6/10 pain.The neck muscle spasms are frequent, jolting&exhausting. Soft tissues at base of skull are painful to a soft touch..Also a lot of pressure IN my head-behind my eyes, etc. So, I've more than a few different kinds of pain.
My Neurosurgeon has had me on 30mg Morphine Sulphate ER 2x's per day w/the same hydrocodone as pre-surgery,as needed (not always 3x's per day. Some days it 1,some days it's 2).The "brick" is causing the worst of pain(laid up in bed, debilitating pain w/o meds).The meds at least make it manageable. Brings it to about a steady 4/10 maybe 5/10 at times pain.
My NS is monitoring the "brick",I get a CT scan every few wks.-the last one,2&1/2wks. ago, brick" hasn't budged a bit.
My NS referred me to a Pain Management Clinic. My appt. was yesterday.I thought PM would be integrative methods. The appointment was for 45min, but I only saw the 2 Dr.'s for a total of 10-15 min.The 1st Dr. said that according to my NS notes, CT's & Physical Therapy evaluation notes,I was still in a very "acute" stage&it could last@ least 6mo.-some people heal slower&the complication isn't helping. He said he wanted to wait w/any injections b/c of the "collected fluids" shown on CT& figure out dif. future injection,since I'm allergic to steroids.He left&came back w/the lead PM doctor.This Dr.never really spoke to me.He basically only spoke to the other Dr. He just told me what he was going to do (amnitriptyline &Steroid injections!Despite my allergy,he said I'd be fine w/it!).He asked if I had any questions as he was opening the door to leave.(I though I'd at least be examined,questions for me,talk about the PT...other things like a Tens Unit perhaps.I thought there'd be dialogue!)When I said yes,I do have questions,he seemed irritated.I asked about acupuncture&other tools, but was told I wouldn't benefit from them at this point.I asked about my muscle relaxers&pain meds.(my NS said they'd take over meds.,pain&muscle relaxers)The Dr. had the door opened@that point, ready to get out if that room&I felt pressure to hurry...He said that he saw that over the years I've tried Cyclobenzaprine, Zanaflex&Methocarbomol &since those didn't help,nothing else would,so no need for any muscle relaxers.As for pain meds.,he said that at my age,I shouldn't be experiencing such pain(I'm 41)&that he doesn't prescribe pain meds. I told him that my NS said that PM would be taking over my current meds&would help me w/other methods too&that's why my NS only rx'd my meds until the day I saw PM.The Dr. was visibly&clearly irritated. He said I should go back to my NS for that-I said "but that's one of a few reasons he sent me here". The Dr. again said that someone my age shouldn't be experiencing pain that would need that kind of medication..I felt horrible...like I should be saying "sorry" or something for holding him up! I was so confused b/c my NS. said that along w/managing pain meds, they'd have other ideas to manage what's going on.It was such a strange quick appt w/no questions about what helps,what doesn't, where/what the source of pain is, no an exam of any sorts...nothing like that at all. So, he said " I'll have you off all pain meds in less than 2 weeks, because "there's just no reason you need to be on them at your age". He said he'd write a script for 1week of 15mg. Morphine IR 2x's per day&said he might write one for the next week for 15mg Morphine IR taken 1x per day&then I'll stop&be done.He said I don't need to take hydrocodone anymore.Then he left very abruptly. The entire "time" I saw the two doctors was def. less than 15min. I left so brushed off,confused, I cried in the car& got my mom all worried(she has to drive me everywhere-NS said I still cannot drive-ROM in neck is still so bad).
I'm more than a little confused about this whole PM thing. I don't want to be on pain meds for life-one of many reasons I had the surgery(pain, numbness on left side, tinnitus, neurological issues&of course that little thing called cerebral spinal fluid flow being blocked)!It's been the prayer going into the surgery& ever since- that I'll find relief @the end of this. But, I'm still dealing with post-surgical issues that are so profoundly painful. I've found my baseline pain by not taking a morning ER med, waiting to see where the pain level is-to make sure I know true level&it's at a hard 8. I do believe that once the "brick" absorbs/ goes away, the pain levels will drastically reduce!
I'm SO confused..by what age has to do w/ any of this,by how little time I was w/these Dr's,how LITTLE they spoke to!I'm let down.Scared.I was hoping for a TEN's unit,acupuncture/other things besides JUST managing this w/pain meds. Which I'm now being taken off when I know it's still s curl up&cry, holding your breath,hold still, try not to writhe pain. No muscle relaxers&now,I'm going from taking 30mg.Morphine ER 2x's per day&Hydrocodone for breakthrough to 15mg IR 2x per day,no hydrocodone&I'll be taken off completely w/in 2wks..(I've arthritis in spine&tumors-benign-between t10-t12.But their worry of those is that they'll fracture the vertebrae-so, yet another thing I'm monitored for)There's issues,but I can deal w/those- compared to this heavy painful mass on the back of my head.Even NS is discouraged by it&says if it doesn't go away in a couple mo./show ANY decrease in size,we'll have to approach it surgically,something I'm praying I don't have to undergo. I pray it resolves itself!
I'm just wondering if this is normal?I've never been through this,never been sent to a PM Clinic.
I just went in thinking,as my NS said, that it would be not just pain medication,but they'd also have other methods&tools to help me.I'm all for a NON Steroid injection(steroids=SO very bad for me).I'm all for adding therapies.I WANT a TEN's unit...but not only was NONE of this discussed. I was just told no pain meds. especially b/c at my "age" I shouldn't have this kind of pain.I'm looking forward to being off meds like this, but I certainly do know where the pain level is&as I'm finding today, the 15mg. Morphine IR, 2x's per day,the pain is intensifying big time. My mom is worried b/c my head is disappearing into my shoulders again. Holding back tears b/c I know it'll make my muscles more tense than they already are. My NS said I needed to stay on the 30mg. at last appt.,to allow my body to move around as it NEEDS to do.I'm still at 8/10 pain!
Am I crazy or is this how PM works??? I want this all to end so that I can carry on with life... But I need this painful, breathless painful brick to go away. NS agreed,the brick is causing alot of problems(besides pain,he thinks it's causing the continued dizziness, headaches, stuttering... etc)
I am headed for pain hitting soon.. I don't know what think.Is this what PM is or am I crazy? The previous regimen "managed" it,allowed me to push myself to regain stamina.Be a person it crippled by pain!. I'm not expecting the pain to"go away" 100% ,that's an unrealistic expectation.To pull me off my meds.w/the pain I have scares me.The PM Dr's didn't even talk to me about my pain. Any insight would be greatly appreciated. I know I've written WAY to long of a post, I do apologize. Really...sorry. Again, any insight, advise is greatly appreciated.
We'll, the update, as follows 4 different calls today is:
The nurse said my NS sent me to PM for a reason and he will probably no rx anything b/c I'm already at PM. She said that PM "notes" say a "tapering off is set for two weeks" to be off. She said that they obviously rx, because they rx'd me the 15mg. Morphine IR, taken 3x's per day. I let her know that they (PM) said they don't & to contact my NS. Lots of repeated info. from her. I let her know that they did not examine me, ask about the pain (the post-surgical "collected fluids" that are now a hard mound on my head have been the #1 culprit since the surgery-no phantom "where is it" pain, that's why I have orders to get a CT every 3weeks-to see if there are ANY changes. No changes. Explained that, as my NS knows, this is the ongoing problem.
She said to contact PM. So, I contacted PM, they said no, they don't rx pain meds. the only reason he rx'd is to get me off the pain meds. w/in 2wks. -b/c they do not treat with pain medications. So, my pain was not evaluated, the rx was b/c they don't treat w/pain meds. & need me off in order to continue treating me. Or, another Dr. deals w/pain meds. So, essentially, me being taken off my meds w/in 2wks. is not due to an evaluation of my pain-it's b/c this Dr. doesn't treat w/meds. & will only treat me w/o meds. Thus, a 2week taper. It has nothing to do with my pain. Then I got the "call your NS if there's any problems".
I did then call my NS office to relay THAT info. -same Nurse said but that's what PM wants to do. I asked her to at least relay this all to my NS. And please at least have him contact them-that he knows that they do in fact not pain meds. with other treatments. The reason they're tapering me off in 2wks. is due to the fact that they need me off b/c they don't treat w/pain meds. My "pain" has nothing to do w/the reason for taking me off. It's b/c he doesn't treat as such.
So, I don't know what else to do. I'm stuck between a "brick" and a hard place. The PM just called back saying that he was gone (the PM Dr.) until next Thurs. and advised me that if I was having increased pain, I needed to go to ER.
So confused. I asked, if there is this "2week taper" set, where am I to get the rx, as id be out as if We'd. night? She said she didn't know, there isn't one written for me and the PM Dr. Is gone until next Thursday. Even more confused. I feel like I'm crazy now. Nothing is making sense of this...ugh.
The nurse said my NS sent me to PM for a reason and he will probably no rx anything b/c I'm already at PM. She said that PM "notes" say a "tapering off is set for two weeks" to be off. She said that they obviously rx, because they rx'd me the 15mg. Morphine IR, taken 3x's per day. I let her know that they (PM) said they don't & to contact my NS. Lots of repeated info. from her. I let her know that they did not examine me, ask about the pain (the post-surgical "collected fluids" that are now a hard mound on my head have been the #1 culprit since the surgery-no phantom "where is it" pain, that's why I have orders to get a CT every 3weeks-to see if there are ANY changes. No changes. Explained that, as my NS knows, this is the ongoing problem.
She said to contact PM. So, I contacted PM, they said no, they don't rx pain meds. the only reason he rx'd is to get me off the pain meds. w/in 2wks. -b/c they do not treat with pain medications. So, my pain was not evaluated, the rx was b/c they don't treat w/pain meds. & need me off in order to continue treating me. Or, another Dr. deals w/pain meds. So, essentially, me being taken off my meds w/in 2wks. is not due to an evaluation of my pain-it's b/c this Dr. doesn't treat w/meds. & will only treat me w/o meds. Thus, a 2week taper. It has nothing to do with my pain. Then I got the "call your NS if there's any problems".
I did then call my NS office to relay THAT info. -same Nurse said but that's what PM wants to do. I asked her to at least relay this all to my NS. And please at least have him contact them-that he knows that they do in fact not pain meds. with other treatments. The reason they're tapering me off in 2wks. is due to the fact that they need me off b/c they don't treat w/pain meds. My "pain" has nothing to do w/the reason for taking me off. It's b/c he doesn't treat as such.
So, I don't know what else to do. I'm stuck between a "brick" and a hard place. The PM just called back saying that he was gone (the PM Dr.) until next Thurs. and advised me that if I was having increased pain, I needed to go to ER.
So confused. I asked, if there is this "2week taper" set, where am I to get the rx, as id be out as if We'd. night? She said she didn't know, there isn't one written for me and the PM Dr. Is gone until next Thursday. Even more confused. I feel like I'm crazy now. Nothing is making sense of this...ugh.
Sorry - in my haste I forget to add - yes one does have to be "pushy" in today's opiate phobic climate. I prefer to call it assertive. There's a difference - at least I'd like to think there is.
Assertiveness is an asset - if you avoid aggressiveness and don't throw rudeness in there. :o) I know you find it difficult to even be assertive - but we must learn that trait in today's atmosphere.
My Best to You,
~Tuck
Assertiveness is an asset - if you avoid aggressiveness and don't throw rudeness in there. :o) I know you find it difficult to even be assertive - but we must learn that trait in today's atmosphere.
My Best to You,
~Tuck
Sorry I wasn't on MedHelp yesterday and am tardy to your comments. I had "one of those days" that all of us get that have Chronic Pain.
"Steroid psychosis" is very real - and does happen more than you might imagine. When I've been on oral steroids I've gotten giddy - probably in part because it was once so effective in reducing my pain. I made poor decisions. It effected my personality. I went for days with just an hour or two of sleep at night. Steroids can do strange things to some ppl.
Steroidal injections have not effected me the way oral, longer use steroids have effected me. That may be what your PMP was referring to. However I'd question the injection for reducing pain of your "brick". You NS or maybe just your Neurologist can be the best one to consult. I would certainly obtain a second opinion before I would allow any invasive procedure - especially with a drug that was known to cause major problems.
Oh I do know how awesome mothers can be. You have a very special mom - hug her often and never miss a moment to tell her how much you love her. I lost my mom a year an d a half ago. I miss her everyday. I still love her with all my heart. She was a blessing in my life.
I'll check back later. I have an appt with my PMP today. I'll be interested to hear how your appts - or calls went today. Hang in there sweetie. We're here to support you too!
Warm Regards,
~Tuck
"Steroid psychosis" is very real - and does happen more than you might imagine. When I've been on oral steroids I've gotten giddy - probably in part because it was once so effective in reducing my pain. I made poor decisions. It effected my personality. I went for days with just an hour or two of sleep at night. Steroids can do strange things to some ppl.
Steroidal injections have not effected me the way oral, longer use steroids have effected me. That may be what your PMP was referring to. However I'd question the injection for reducing pain of your "brick". You NS or maybe just your Neurologist can be the best one to consult. I would certainly obtain a second opinion before I would allow any invasive procedure - especially with a drug that was known to cause major problems.
Oh I do know how awesome mothers can be. You have a very special mom - hug her often and never miss a moment to tell her how much you love her. I lost my mom a year an d a half ago. I miss her everyday. I still love her with all my heart. She was a blessing in my life.
I'll check back later. I have an appt with my PMP today. I'll be interested to hear how your appts - or calls went today. Hang in there sweetie. We're here to support you too!
Warm Regards,
~Tuck
I'm curious...(sorry to bother y'al)..I just hate NEEDING to reach a Dr. & I'm not pushy enough usually, so I don't know what to do here...
So, I should prob. /obviously need contact my Neurosurgeon's office tomorrow morning. Not the PM, as they were clear about their plan (does not deal with
rx' ing . Last week, when I called Amy NS office about it, she thought I was calling for a refill -as she said "he only prescribes for 4-6 weeks after surgery". But, I've had to see my NS nearly every month since the surgery (4mo. ago. 4months ago today actually! Whew! It's been a loooong 4months. Long recovery!) and he's been prescribing my meds this whole time . And said he would do so until I got into PM.
So, I apparently need to call my NS office tomorrow, as already I know the pain spiral is going bad w/what they changed it on me for this week(said "maybe" rx the next week, to get me off all meds., but they "don't prescribe" in their clinic. I looked the Dr's up (the main Dr. I saw,I think the 1st one WAS an intern Tuck, & looking back on it, does seem that was the situation, as the "main" Dr. was kind of talking to/teaching the 1st Dr. that came in) and he does indeed do anesthesia, injections, nerve blocks, etc. kind of PM.
So...I'm not sure that I landed at the kind of PM that my NS intended. If so, I don't know why he said they would take over my meds. So, tomorrow, I need to somehow get a complete msg. to my NS or somehow get in to see him (he's said before, to my mom & I, before the surgery, that he has a hard time actually getting msgs). Without being rude, I need to GET to him. I can't go off these meds. Even Neurosurgeon was concerned at pain level- and that's when u was undereducated. What's causing the pain is as there as it was (a huge mass at surgical site on back of head) 4months ago. I don't know if I demand to see him this week? How to stress that I need a particular msg. to get to him...not to a nurse, who interprets it & calls with HER response. I do feel (as other issues in the past, non-med. issues) that unless I see him, this won't be understood or fixed.
Does one need to be soo pushy to be heard? I don't want to keep getting the nurses reply...
So, I should prob. /obviously need contact my Neurosurgeon's office tomorrow morning. Not the PM, as they were clear about their plan (does not deal with
rx' ing . Last week, when I called Amy NS office about it, she thought I was calling for a refill -as she said "he only prescribes for 4-6 weeks after surgery". But, I've had to see my NS nearly every month since the surgery (4mo. ago. 4months ago today actually! Whew! It's been a loooong 4months. Long recovery!) and he's been prescribing my meds this whole time . And said he would do so until I got into PM.
So, I apparently need to call my NS office tomorrow, as already I know the pain spiral is going bad w/what they changed it on me for this week(said "maybe" rx the next week, to get me off all meds., but they "don't prescribe" in their clinic. I looked the Dr's up (the main Dr. I saw,I think the 1st one WAS an intern Tuck, & looking back on it, does seem that was the situation, as the "main" Dr. was kind of talking to/teaching the 1st Dr. that came in) and he does indeed do anesthesia, injections, nerve blocks, etc. kind of PM.
So...I'm not sure that I landed at the kind of PM that my NS intended. If so, I don't know why he said they would take over my meds. So, tomorrow, I need to somehow get a complete msg. to my NS or somehow get in to see him (he's said before, to my mom & I, before the surgery, that he has a hard time actually getting msgs). Without being rude, I need to GET to him. I can't go off these meds. Even Neurosurgeon was concerned at pain level- and that's when u was undereducated. What's causing the pain is as there as it was (a huge mass at surgical site on back of head) 4months ago. I don't know if I demand to see him this week? How to stress that I need a particular msg. to get to him...not to a nurse, who interprets it & calls with HER response. I do feel (as other issues in the past, non-med. issues) that unless I see him, this won't be understood or fixed.
Does one need to be soo pushy to be heard? I don't want to keep getting the nurses reply...
Thank You Tuck!! You're always so helpful here!!! So, perhaps I did see an interventional PM. I know the window said "Pain Management", but indeed, it may very well have been what you said.
I suppose I used the wrong word regarding the Steroids. I'm not tolerant (at all!!scary not at all) to Steroids. I was put on Steroids 3 different times..all of which led to complete crazy over the edge panic attack, I thought I was going to die, I couldn't hold still , I literally freaked out each time! So bad one time (the last time I ever took steroids) I was taken to the hospital. A nurse said that some people react this way...she referred to it as a kind of "steroid psychosis". I was told at that hospital visit to never take them again. It scared me. It was out of control crazy manic panic. So, not tolerant is abetted word than allergic. But it clearly does state in my chart my reaction to steroids. My NS knew this & b/c steroids are often used to help w/inflammation w/this surgery, he said he would find other approaches that did not involve steroids.
I spoke with my mother ...
-A shout out to mothers! God bless mine! She's helped me walk when I'm unsteady, helped me find words when I go blank, helped me through the stuttering...everything! All my tears, frustrations, confusion...she's been a patient, steady rock, an angel for me! She's also been a force to help make myself push my body a little more to regain strength. She's not been just...softly patting my back. She's a good coach-knowing when to make me push myself further-to take the stairs, to take more steps than last time-even if it means I hold onto her arm, take those extra steps! I couldn't have gotten through this w/o her. Even at age 41, your momma is still the one person (and your dog) who can make you feel comforted. That everything will be ok-even when the night is long and very dark! Thank you mom & all the moms out there!
She said don't worry. We WILL go&get in to see my ZnS this week, b/c she has been at every appt. with me too. She was under the same impression regarding treatment. Integrative. That the end goal is to hopefully NOT needs meds. to be a walking around human being. But, the post-surgical issues/complication is still very there, real & needs to be managed-ALONG w/other helpful methods. I really hope I can get a TEN's unit, as my shoulders are soooo twisted tight...my PT evaluation, she said I was at a most delicate position, that everything from shoulder blades up were just blocked like a hard shell. She said she can only start at the lightest touch(of course, I want her to dig in and open the shell up! Get a hammer! lol! But she explained how delicate and sensitive everything really is & why she needs to go in gently when we start in Mid-January. She's awesome&I'm over the moon b/c she actually KNIWS Chiari- a LOT about it. That's a relief b/c many Dr's I've seen claim to, but what they say does not really match the condition I've HAD to become "Frienemies" w/over the last 10years. It also hopes if they pronounce the condition's name that they know so well, correctly. ;) ;) ;)
Well, I will update. I'm going to call or go in on Monday to see my NS. I only slept 1hr. last night-I can feel this hardcore. It's like the monster is alive again&beatingmy head with knives & bats. It will just be a lay down weekend for me. I will sort things out come Monday. I hope I can get accupuncture, a TEN's unit, any other great therapies, but I do know that right now, I'm still at a crucial point with the "brick" that won't budge as of yet. I pray it resolves itself soon, as I REALLLY do wince & hang my head low (oh, it already does that naturally now, lol) at the thought of being put under again and getting cut open at all again.
I'm hoping my body will take a nap today. But, I'm having to do what I did before...mumble "shite, shite, shite, shite..." Over and over through the much louder spasms and the magnified, so very pronounced screaming brick on the back of my head. I can't imagine being at nearly to absolutely no meds next week.
But, as my mom keeps reminding me, she doesn't think my NS meant for this to happen/to be the course of action. So, "don't stress yourself, we WILL sort this out & you will be managed."
Again, thank you Tuck!! I was surprised you remembered me-but I suppose many don't say they gave a "brick" on their head, lol!!!! Thank you&I will update my near future outcomes. And thank you for helping me to clarify my issue (not "allergy", it's "not tolerant") w/Steroids.
And I do want to thank all the moms out there....your children will always find the mist true comfort in your arms, no matter how old they are!
Imany thanks Tick- you're a wealth of knowledge, kind & so helpful!!!
I suppose I used the wrong word regarding the Steroids. I'm not tolerant (at all!!scary not at all) to Steroids. I was put on Steroids 3 different times..all of which led to complete crazy over the edge panic attack, I thought I was going to die, I couldn't hold still , I literally freaked out each time! So bad one time (the last time I ever took steroids) I was taken to the hospital. A nurse said that some people react this way...she referred to it as a kind of "steroid psychosis". I was told at that hospital visit to never take them again. It scared me. It was out of control crazy manic panic. So, not tolerant is abetted word than allergic. But it clearly does state in my chart my reaction to steroids. My NS knew this & b/c steroids are often used to help w/inflammation w/this surgery, he said he would find other approaches that did not involve steroids.
I spoke with my mother ...
-A shout out to mothers! God bless mine! She's helped me walk when I'm unsteady, helped me find words when I go blank, helped me through the stuttering...everything! All my tears, frustrations, confusion...she's been a patient, steady rock, an angel for me! She's also been a force to help make myself push my body a little more to regain strength. She's not been just...softly patting my back. She's a good coach-knowing when to make me push myself further-to take the stairs, to take more steps than last time-even if it means I hold onto her arm, take those extra steps! I couldn't have gotten through this w/o her. Even at age 41, your momma is still the one person (and your dog) who can make you feel comforted. That everything will be ok-even when the night is long and very dark! Thank you mom & all the moms out there!
She said don't worry. We WILL go&get in to see my ZnS this week, b/c she has been at every appt. with me too. She was under the same impression regarding treatment. Integrative. That the end goal is to hopefully NOT needs meds. to be a walking around human being. But, the post-surgical issues/complication is still very there, real & needs to be managed-ALONG w/other helpful methods. I really hope I can get a TEN's unit, as my shoulders are soooo twisted tight...my PT evaluation, she said I was at a most delicate position, that everything from shoulder blades up were just blocked like a hard shell. She said she can only start at the lightest touch(of course, I want her to dig in and open the shell up! Get a hammer! lol! But she explained how delicate and sensitive everything really is & why she needs to go in gently when we start in Mid-January. She's awesome&I'm over the moon b/c she actually KNIWS Chiari- a LOT about it. That's a relief b/c many Dr's I've seen claim to, but what they say does not really match the condition I've HAD to become "Frienemies" w/over the last 10years. It also hopes if they pronounce the condition's name that they know so well, correctly. ;) ;) ;)
Well, I will update. I'm going to call or go in on Monday to see my NS. I only slept 1hr. last night-I can feel this hardcore. It's like the monster is alive again&beatingmy head with knives & bats. It will just be a lay down weekend for me. I will sort things out come Monday. I hope I can get accupuncture, a TEN's unit, any other great therapies, but I do know that right now, I'm still at a crucial point with the "brick" that won't budge as of yet. I pray it resolves itself soon, as I REALLLY do wince & hang my head low (oh, it already does that naturally now, lol) at the thought of being put under again and getting cut open at all again.
I'm hoping my body will take a nap today. But, I'm having to do what I did before...mumble "shite, shite, shite, shite..." Over and over through the much louder spasms and the magnified, so very pronounced screaming brick on the back of my head. I can't imagine being at nearly to absolutely no meds next week.
But, as my mom keeps reminding me, she doesn't think my NS meant for this to happen/to be the course of action. So, "don't stress yourself, we WILL sort this out & you will be managed."
Again, thank you Tuck!! I was surprised you remembered me-but I suppose many don't say they gave a "brick" on their head, lol!!!! Thank you&I will update my near future outcomes. And thank you for helping me to clarify my issue (not "allergy", it's "not tolerant") w/Steroids.
And I do want to thank all the moms out there....your children will always find the mist true comfort in your arms, no matter how old they are!
Imany thanks Tick- you're a wealth of knowledge, kind & so helpful!!!
Hello Emme,
I do remember you - and your "brick". I'm glad to hear from you again but so sorry things - at least your PM appears to be even worse. I hear your fear and frustration. My heart goes out to you!
I think you may have been referred to an Interventional Pain Management Physician. That word "Interventional" basically means no opiates - or very few, very rarely. These PMPs are often called Shot Jocks. They make huge money in preforming "Interventional" procedures. There is no money in just prescribing opiates. It's all in the treatments. You found a real "gem." Obviously I say that with sarcasm.
Your appt is typical for these type of PMPs - at least in my experience and research. I am guessing that the first person you saw during this appt was probably a NP or PA and not an actual PMP. However it's possible you he may have been a resident - or a physician of some sort in training. Usually two PMPs don't see you in the same appt. It really doesn't matter at this point.
If I were in your situation I would contact the NS that referred you to PM. I don't think it was his intention to DC all your opiates. There are other PMP that should treat you better. Ask for a second opinion.
I've never heard of anyone being allergic to steroids. Indeed steroids are given when one has an allergic reaction. I'm not saying it's not true, I've just never heard of it - nor can I find any literature to support it. It's more likely that you respond poorly to steroids and the side effects are very troublesome for you. A physician that would even consider ignoring a true allergy is at best a careless one, waiting for a malpractice suit. Be certain to discuss that with your NS also. It's concerning.
You're correct of course, chronic pain hits one and all, regardless of age. You can add that pain is nondiscriminatory. It strikes anyone, regardless of national origin, sex, social status, rich or poor, etc. The notion that at 41 - or at any age - opiates will make you an addict is one of the most uneducated statements I've heard in awhile. It's like saying if you drink alcohol you'll become an alcoholic. Addiction is a disease. It's true your body may become dependent on opiates and you'll experience withdrawal when you finally are able to function without them. Addiction and dependence are entirely two different animals. Any physician should know that but some would rather use scare tactics instead of taking the time to explain the rationale.
Don't walk - run from this PMP. There are other choices, other PMPs. You were treated horribly, without concern or compassion. I don't think you were seen as an individual - just a DX - or may worse dollar signs. I had a PMP just like the one you saw. I fired him. I cut my losses and ran - well I can't run - but you know what I mean. In my opinion there must be trust and respect between a physician and patient. No it doesn't always happen on the first appt - but that's where it should begin.
Sadly PMP have all the power and we have no rights. However we do have the right of selection. If it doesn't feel right now - it won't feel right later. You haven't signed a contract and now is the time to look for another PMP.
Again discuss this with your NS. I'll look forward to hearing the outcome of your appt. Please keep in touch and let us know how you are doing. I believe with the help of your NS you'll find the right PMP for you!
Take Care and Good Luck,
~Tuck
I do remember you - and your "brick". I'm glad to hear from you again but so sorry things - at least your PM appears to be even worse. I hear your fear and frustration. My heart goes out to you!
I think you may have been referred to an Interventional Pain Management Physician. That word "Interventional" basically means no opiates - or very few, very rarely. These PMPs are often called Shot Jocks. They make huge money in preforming "Interventional" procedures. There is no money in just prescribing opiates. It's all in the treatments. You found a real "gem." Obviously I say that with sarcasm.
Your appt is typical for these type of PMPs - at least in my experience and research. I am guessing that the first person you saw during this appt was probably a NP or PA and not an actual PMP. However it's possible you he may have been a resident - or a physician of some sort in training. Usually two PMPs don't see you in the same appt. It really doesn't matter at this point.
If I were in your situation I would contact the NS that referred you to PM. I don't think it was his intention to DC all your opiates. There are other PMP that should treat you better. Ask for a second opinion.
I've never heard of anyone being allergic to steroids. Indeed steroids are given when one has an allergic reaction. I'm not saying it's not true, I've just never heard of it - nor can I find any literature to support it. It's more likely that you respond poorly to steroids and the side effects are very troublesome for you. A physician that would even consider ignoring a true allergy is at best a careless one, waiting for a malpractice suit. Be certain to discuss that with your NS also. It's concerning.
You're correct of course, chronic pain hits one and all, regardless of age. You can add that pain is nondiscriminatory. It strikes anyone, regardless of national origin, sex, social status, rich or poor, etc. The notion that at 41 - or at any age - opiates will make you an addict is one of the most uneducated statements I've heard in awhile. It's like saying if you drink alcohol you'll become an alcoholic. Addiction is a disease. It's true your body may become dependent on opiates and you'll experience withdrawal when you finally are able to function without them. Addiction and dependence are entirely two different animals. Any physician should know that but some would rather use scare tactics instead of taking the time to explain the rationale.
Don't walk - run from this PMP. There are other choices, other PMPs. You were treated horribly, without concern or compassion. I don't think you were seen as an individual - just a DX - or may worse dollar signs. I had a PMP just like the one you saw. I fired him. I cut my losses and ran - well I can't run - but you know what I mean. In my opinion there must be trust and respect between a physician and patient. No it doesn't always happen on the first appt - but that's where it should begin.
Sadly PMP have all the power and we have no rights. However we do have the right of selection. If it doesn't feel right now - it won't feel right later. You haven't signed a contract and now is the time to look for another PMP.
Again discuss this with your NS. I'll look forward to hearing the outcome of your appt. Please keep in touch and let us know how you are doing. I believe with the help of your NS you'll find the right PMP for you!
Take Care and Good Luck,
~Tuck
I suppose, within all the too heavily detailed "my story" I wrote, my questions are: is that what a usual PM appt. is? (No exam, no questions, no mention of WHAT the issues in having are, etc) especially for a "new patient"?
And also, DO I have any options here? I did not sign any contract of any kind...no reason to I suppose-as their plan is to take me off everything with a 2week period. I just don't know if this is totally normal and if I have any options to find another PM dr? If I can call to make an ASAP appt. w/my Neurisurgeon, as when I called after my PM appt, the nurse said he was gone for the day (closed early for New Years Eve) but she said he wouldn't refill anything, as he sent me to PM for that. But, I wasn't asking for a refill when I called-I called b/c I was confused and was worried. As he KNOWS my "brick", the complication, the pain issue that finally got to a managed point, that maybe he would have insight with the no offering any other therapies besides a steroid injection-if there's possible mixed info? I'm hoping I can all on Monday to get an emergency fit in appt. w/ him, so that I can actually get a face to face conversation w/him to see if this is a move in the wrong direction or whatnot...
So, was that a proper/normal PM "new patient" appt.?
And DO I have any kind of options as just a patient?
Will try to "decompress" & sleep....I can't seem to get any part of my mid-back up relaxed in any kind of way...it's wound up, twisted, angry & painful. Will give it my all though! Thank you again to anyone who has read my annoyingly long, likely too repetitive, writing in circles posts. I'll try to keep it short (like me) from here out. And thank you, anybody, in advance, for any help, insight or suggestions. Thank you SO kindly.
And also, DO I have any options here? I did not sign any contract of any kind...no reason to I suppose-as their plan is to take me off everything with a 2week period. I just don't know if this is totally normal and if I have any options to find another PM dr? If I can call to make an ASAP appt. w/my Neurisurgeon, as when I called after my PM appt, the nurse said he was gone for the day (closed early for New Years Eve) but she said he wouldn't refill anything, as he sent me to PM for that. But, I wasn't asking for a refill when I called-I called b/c I was confused and was worried. As he KNOWS my "brick", the complication, the pain issue that finally got to a managed point, that maybe he would have insight with the no offering any other therapies besides a steroid injection-if there's possible mixed info? I'm hoping I can all on Monday to get an emergency fit in appt. w/ him, so that I can actually get a face to face conversation w/him to see if this is a move in the wrong direction or whatnot...
So, was that a proper/normal PM "new patient" appt.?
And DO I have any kind of options as just a patient?
Will try to "decompress" & sleep....I can't seem to get any part of my mid-back up relaxed in any kind of way...it's wound up, twisted, angry & painful. Will give it my all though! Thank you again to anyone who has read my annoyingly long, likely too repetitive, writing in circles posts. I'll try to keep it short (like me) from here out. And thank you, anybody, in advance, for any help, insight or suggestions. Thank you SO kindly.
Just a few extra details: I am on gabapentin 1200mg per day&shave been since before the surgery. My Rheumatologist dx'd me with EDS (so I'm sure that's not helping my healing..I hurt everywhere on some days, but my spine and what feels like every fiber surrounding my spine hurts so badly everyday anyways&that goes way pre-surgery). My gastroenterologist says no NSAID'sdue to an duodenal ulcer-which was the result of being rx'd NSAID's, 4x's a day for three years to combat pain & "fever of unknown origin". Too bad, b/c I'm sure that would help me out here. I have terrible TMD ... the stress of pain makes it worse....my specialist said, upon reviewing my fancy panoramic images the first time, that I had a jaw of a very broken 90year old woman. Lovely. I've always dismissed my jaw-the least of my problems- no matter how badly I want to rip it out/apart someday (or almost every night as I'm trying to go to bed).
I'm scared right now b/c the pain is coming on deeply & I'm remembering, after my surgery, my NS sent me home in 15mg. Morphine ER 2x's a day & to continue the hydrocodone for breakthrough. It got so bad that I gave up...devastated that something like rounds the click morphine wasn't helping me & I even cancelled all future appts. w/my Neurosurgeon. I layer there and cried. At times almost hyperventilating-like. My mom & sister were worried, so they called my NS w/o me knowing to see if I could get in sooner for a follow-up. Only to find out that is called trying to cancel appts. I say "trying" b/c the lady I spoke to told my mom&sister that while talking to me, she said so's done this long enough to know when people are in so much pain, they'll irrationally do things like cancel appts. SO, she told me she cancelled, but did NOT cancel. My mother didn't realize she's a voicemail (my emergency contact) from this lady to let her know I had an earlier appt. to get to as well, she had not cancelled the appt. I already had. She was an angel...she was looking out for me when I couldn't & gave up b/c the pain & pressure & spasms were too much. When I saw my NS, he's looked at the post-op CT(2nd post op CT) and saw just how big this "collective tissues" area was& determined that I should be increased , especially with the EDS going against me in neck area. So, he increased it to 30mg. Morphine 2x per day &told me to at least take the Vicodin 2-3x's per day. And He put me back on the Cyclobenzaprine. It helped. Tremendously.. I did not feel bombarded with pain. It was still there, but was not consuming me. I'm not saying only the pain meds will help me...I want a TEN's unit SO bad. I want to integrate other therapies. But I also know,(and CT keeps confirming it...) that the "brick" is just as much there as it was 3months ago. The increase & muscle relaxer was allowing me to move around, hold my head up. (Literally), has allowed me to slowly build up my stamina which was zapped by the crashing of Chiari's ugly head that came down up I me in early 2015, rendering me pretty much debilitated. This surgery was no cure...there is no cure. It was to restore CSF & slow progression&half permanent nerve damage....AND hopefully allow me a life w/o chronic pain. That is the goal here. I don't want to have to be on pain meds. But as long as this brick is here, that's what I've got. And I can feel it creeping back up on me tonight. Now that I've been turned over to PM (and that was the strangest appt. ever. No questions, no exam...barely even looked me in the eye!) I feel I'm in THEIR heads who think that "at your age you should have this kind of pain". I still can't figure out the age thing..it's b/c of a surgery that I'm still dealing with...where my skull, neck&spine were opened...for which I developed a large fluid buildup/mound that hardened & has caused more pain that I never imagined. I worried about infections and making it through the 5hr. surgery- didn't anticipate this complication. Unfortunately, the tinnitus in left ear that struck me in early 2015, which was gone upon waking from the surgery (well, I didn't notice until I was out of a 2day stint in ICU...I noticed on the 4th day in hospital after surgery-I was SO happy!) well, it returned Dec. 26th. I feel things are compounding on me again, right when I'm sent to a PM dr.(s) who didn't look at me, barely spoke with me (just spoke TO me, deciding no pain meds-and he's taking me off what WAS managing something that is visibly & clearly still there-like a heavy brick smashing my skull...like a relentless, raging, gnawing, many knifes stabbing alien stuck to the back of my head. But, according to him, I shouldn't be experiencing this kind of pain at my age. Unworried I'm stuck with him. And now with the return of the tinnitus to ramp it all up, I'm being cut off the meds that were managing it¬ even offered any other forms of treatment besides steroid injections (I'm sooo dangerously allergic to steroids! It's very clear in my charts! I'm worried. I was doing fine, it was being managed, but NOT 100% pain-free (that's unrealistic) but managed. The brick&flattened neck muscles were "managed. Now...I don't know what's going to happen&I fear reaching that point I did when my mom, sister & the nurse/scheduler intervened, knowing I needed to be seen &I the NS realized how bad it was. Ugh. I thought I was just going to fill in a few details about other meds I'm on, etc. But, the encroaching pain & spasms have hit me...and I went into a rant. I wonder if I have a NS to help me besides just ordering CT's every 3weeks, checking on the "brick" and looking at cervical instability (he had to take way more than he thought. If I'm stuck with the Dr's who said I shouldn't be on these meds at my age, that they can be addicting & at my age I shouldn't be experiencing this kind of pain. Last time I checked, Chiari has no age limit....2months old...41yrs. old, 89yrs. okd-Chiari doesn't care about age. Nor does the post-op surgical complications. I'm feeling hopeless and let down right now. And with the return of tinnitus, I was already discouraged-before I saw those PM Dr's. I feel I've no voice, no choice & stuck in this vicious pain again. Sorry I'm complaining so much. I'm SO confused by the PM appt. I don't know if I'll sleep tonight, I'm so overwhelmed by discouragement m.
Is thus really what PM is? I know how they are cutting all opioid treatments down...I just didn't think I'd be taken off, not even examined & not offered even a TEN's...just taken off all pain meds w/in 2weeks and told I'll get a steroid injection.
I'm scared right now b/c the pain is coming on deeply & I'm remembering, after my surgery, my NS sent me home in 15mg. Morphine ER 2x's a day & to continue the hydrocodone for breakthrough. It got so bad that I gave up...devastated that something like rounds the click morphine wasn't helping me & I even cancelled all future appts. w/my Neurosurgeon. I layer there and cried. At times almost hyperventilating-like. My mom & sister were worried, so they called my NS w/o me knowing to see if I could get in sooner for a follow-up. Only to find out that is called trying to cancel appts. I say "trying" b/c the lady I spoke to told my mom&sister that while talking to me, she said so's done this long enough to know when people are in so much pain, they'll irrationally do things like cancel appts. SO, she told me she cancelled, but did NOT cancel. My mother didn't realize she's a voicemail (my emergency contact) from this lady to let her know I had an earlier appt. to get to as well, she had not cancelled the appt. I already had. She was an angel...she was looking out for me when I couldn't & gave up b/c the pain & pressure & spasms were too much. When I saw my NS, he's looked at the post-op CT(2nd post op CT) and saw just how big this "collective tissues" area was& determined that I should be increased , especially with the EDS going against me in neck area. So, he increased it to 30mg. Morphine 2x per day &told me to at least take the Vicodin 2-3x's per day. And He put me back on the Cyclobenzaprine. It helped. Tremendously.. I did not feel bombarded with pain. It was still there, but was not consuming me. I'm not saying only the pain meds will help me...I want a TEN's unit SO bad. I want to integrate other therapies. But I also know,(and CT keeps confirming it...) that the "brick" is just as much there as it was 3months ago. The increase & muscle relaxer was allowing me to move around, hold my head up. (Literally), has allowed me to slowly build up my stamina which was zapped by the crashing of Chiari's ugly head that came down up I me in early 2015, rendering me pretty much debilitated. This surgery was no cure...there is no cure. It was to restore CSF & slow progression&half permanent nerve damage....AND hopefully allow me a life w/o chronic pain. That is the goal here. I don't want to have to be on pain meds. But as long as this brick is here, that's what I've got. And I can feel it creeping back up on me tonight. Now that I've been turned over to PM (and that was the strangest appt. ever. No questions, no exam...barely even looked me in the eye!) I feel I'm in THEIR heads who think that "at your age you should have this kind of pain". I still can't figure out the age thing..it's b/c of a surgery that I'm still dealing with...where my skull, neck&spine were opened...for which I developed a large fluid buildup/mound that hardened & has caused more pain that I never imagined. I worried about infections and making it through the 5hr. surgery- didn't anticipate this complication. Unfortunately, the tinnitus in left ear that struck me in early 2015, which was gone upon waking from the surgery (well, I didn't notice until I was out of a 2day stint in ICU...I noticed on the 4th day in hospital after surgery-I was SO happy!) well, it returned Dec. 26th. I feel things are compounding on me again, right when I'm sent to a PM dr.(s) who didn't look at me, barely spoke with me (just spoke TO me, deciding no pain meds-and he's taking me off what WAS managing something that is visibly & clearly still there-like a heavy brick smashing my skull...like a relentless, raging, gnawing, many knifes stabbing alien stuck to the back of my head. But, according to him, I shouldn't be experiencing this kind of pain at my age. Unworried I'm stuck with him. And now with the return of the tinnitus to ramp it all up, I'm being cut off the meds that were managing it¬ even offered any other forms of treatment besides steroid injections (I'm sooo dangerously allergic to steroids! It's very clear in my charts! I'm worried. I was doing fine, it was being managed, but NOT 100% pain-free (that's unrealistic) but managed. The brick&flattened neck muscles were "managed. Now...I don't know what's going to happen&I fear reaching that point I did when my mom, sister & the nurse/scheduler intervened, knowing I needed to be seen &I the NS realized how bad it was. Ugh. I thought I was just going to fill in a few details about other meds I'm on, etc. But, the encroaching pain & spasms have hit me...and I went into a rant. I wonder if I have a NS to help me besides just ordering CT's every 3weeks, checking on the "brick" and looking at cervical instability (he had to take way more than he thought. If I'm stuck with the Dr's who said I shouldn't be on these meds at my age, that they can be addicting & at my age I shouldn't be experiencing this kind of pain. Last time I checked, Chiari has no age limit....2months old...41yrs. old, 89yrs. okd-Chiari doesn't care about age. Nor does the post-op surgical complications. I'm feeling hopeless and let down right now. And with the return of tinnitus, I was already discouraged-before I saw those PM Dr's. I feel I've no voice, no choice & stuck in this vicious pain again. Sorry I'm complaining so much. I'm SO confused by the PM appt. I don't know if I'll sleep tonight, I'm so overwhelmed by discouragement m.
Is thus really what PM is? I know how they are cutting all opioid treatments down...I just didn't think I'd be taken off, not even examined & not offered even a TEN's...just taken off all pain meds w/in 2weeks and told I'll get a steroid injection.
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