Aa
Still with the brick...late updat!
Hello again!!!! I'm sorry for such a delay in responding to my ongoing "brick" situation. My NS did say that the "brick" was perhaps related to the "big squishy" (collected fluids) from where he harvested the tissue for dura patch. He's unsure if it actually gravitated to base of skull (where "brick" is) or if that a whole different "collected fluids" reaction.
Although this, hence the name, is hard & heavy. It's just as painful as it was from day 1. I'm getting CTscan's every 3wks. The most recent one shows simply NO changes. It's really becoming a weight (perfect pun, unintended). NS said that if it's still there in a couple months (despite this whole "it willlll re-absorb, it willll dissipate" watch and wait methods which I've been told this whole time) we may visit other approaches-surgical. Ugh. It's at a hard 8/10 pain. I've gone w/o the meds every once in awhile to see what the "baseline" pain is & it's as strong as it was from the beginning. It *****. I finally got the clearance to start Physical Therapy this month. Everything was still swollen & as he said "acute" to start before this. The muscles on the right side of neck(right side of incision) have become so.... flat. Literally. That worries me, but I've the "brick" to deal with, so I'm just believing that the muscles will work out in the end, through PT.
My NS just recently sent me to Pain a Management where he said they would take over the meds., have other means to help with the pain-he mentioned a TEN's unit(I've SOOO badly wanted a TEN's unit), accupuncture, eye. So, he filled my meds until I saw PM. I went in for a 45min. appt. w/PM. It turned out to be less than 15min., no physical exam of any sorts, (didn't even ask me to move my head, look at the neck..,nothing at all). They didn't ask me more than one question about the pain. In the end, they basically spoke to each other-treatment plan was injections. When I asked about accupuncture etc., as well as about the medication, they said I wouldn't benefit from accupuncture at this point & that tgey don't rx pain medication. They also said the at my "age", I shouldn't be experiencing this kind of pain. I didn't understand that. Still don't know what my age (41) has to do w/the "brick". I'm thinking I was sent to interventional PM...not PM that (I thought) was integrative....!?!? Left confused and frustrated. I know I can't just stop the meds. (I also know the level of pain...I don't want to hit the wall I did a bit back). So, it wasn't what my NS described. So, I'm lost there.
Basically, I'm still where I was. It's wearing in me.
I'm still getting dizzy, (falls), memory (short-term, loss of words) still off-but improving, stuttering is improving at times. Unfortunately though, the tinnitus in left ear returned the morning after Christmas. I woke up to that sound and just cried. It's not stopped since that morning. It makes me feel bombarded.
I do have a pressure thing that's been going on-along the base of skull -in soft tissues-like a water balloon ready to pop.
Ugh. Chiari. That's my update. Still on this "brick" road.
I hope all is well with you guys!!!
Although this, hence the name, is hard & heavy. It's just as painful as it was from day 1. I'm getting CTscan's every 3wks. The most recent one shows simply NO changes. It's really becoming a weight (perfect pun, unintended). NS said that if it's still there in a couple months (despite this whole "it willlll re-absorb, it willll dissipate" watch and wait methods which I've been told this whole time) we may visit other approaches-surgical. Ugh. It's at a hard 8/10 pain. I've gone w/o the meds every once in awhile to see what the "baseline" pain is & it's as strong as it was from the beginning. It *****. I finally got the clearance to start Physical Therapy this month. Everything was still swollen & as he said "acute" to start before this. The muscles on the right side of neck(right side of incision) have become so.... flat. Literally. That worries me, but I've the "brick" to deal with, so I'm just believing that the muscles will work out in the end, through PT.
My NS just recently sent me to Pain a Management where he said they would take over the meds., have other means to help with the pain-he mentioned a TEN's unit(I've SOOO badly wanted a TEN's unit), accupuncture, eye. So, he filled my meds until I saw PM. I went in for a 45min. appt. w/PM. It turned out to be less than 15min., no physical exam of any sorts, (didn't even ask me to move my head, look at the neck..,nothing at all). They didn't ask me more than one question about the pain. In the end, they basically spoke to each other-treatment plan was injections. When I asked about accupuncture etc., as well as about the medication, they said I wouldn't benefit from accupuncture at this point & that tgey don't rx pain medication. They also said the at my "age", I shouldn't be experiencing this kind of pain. I didn't understand that. Still don't know what my age (41) has to do w/the "brick". I'm thinking I was sent to interventional PM...not PM that (I thought) was integrative....!?!? Left confused and frustrated. I know I can't just stop the meds. (I also know the level of pain...I don't want to hit the wall I did a bit back). So, it wasn't what my NS described. So, I'm lost there.
Basically, I'm still where I was. It's wearing in me.
I'm still getting dizzy, (falls), memory (short-term, loss of words) still off-but improving, stuttering is improving at times. Unfortunately though, the tinnitus in left ear returned the morning after Christmas. I woke up to that sound and just cried. It's not stopped since that morning. It makes me feel bombarded.
I do have a pressure thing that's been going on-along the base of skull -in soft tissues-like a water balloon ready to pop.
Ugh. Chiari. That's my update. Still on this "brick" road.
I hope all is well with you guys!!!
COMMUNITY LEADER
Just try and stretch out the time you take them..if every 8 hrs try every 10...and add on to it as you can....that is the best you can do...for now.
let me know what your NL and pharmacist say.
Indeed Selma-I will NOT be cutting one of these pills in half. Everything I've read (and it CLEARLY states in bottle & pamphlet to NOT do so!) says do NOT. So, despite his "directions", I won't. That scares me. I will call my pharmacist & I'll let my NS know on Wed. My mom & talked about (yes, I always get a CD copy of allllll imaging I do) sending them to a Chiari specialist in Phoenix and looking at other NS's. I don't want to be a chronic pain patient for life- I hold hope that I will NOT have this 27/7 pain -which is 90% the brick, for life. And if he can't figure this out, I'll be looking already for someone(NS) who can. I see my NL on Thursday for my migraine Botox shots..she is GOLDEN to me...she is the one who made me go through a battery of tests to see what is Chiari telated&what could NOTxbe. She is golden in many ways-she wanted to sit w/me for an hour and just "talk" about be, my life & issues for my 1st appt. -before she "jumped in" as a Doctor. So, I'll be looking to her w/some guidance & possibly referrals in all this mess.
I promise I won't be cutting ANY pill inhale as he said.. It's the big "no-no" for these ER pills!!! Yet "opioid danger" lecture to me & my mom was his concern! Strange... I will NOT be seeing him again. Just have to figure out a way to "taper off " w/these 45 pills.
I promise I won't be cutting ANY pill inhale as he said.. It's the big "no-no" for these ER pills!!! Yet "opioid danger" lecture to me & my mom was his concern! Strange... I will NOT be seeing him again. Just have to figure out a way to "taper off " w/these 45 pills.
COMMUNITY LEADER
STOP !! b4 you take a pill cut in half talk with the local pharmacist they know more about effects of cutting them etc....
Next....you need to find another NS that will review your surgical site to see what is going on...we all agree opiates are not how we want to live...but when we need them due to surgery....ugh....I can not say how frustrated I am for you.
If you have copies of MRI's b4 and after surgery make copies and forward to other Chiari specialists for an opinion...
Hang in there <3
Well, an update...PM clinic called this morning asking me to come in today to "review meds". They said that there is NO record (keep in mind all my doctors use the same... charts...they're all connected...intentionally so, so that they're all on the "same page" so to speak, w/all my care, conditions, meds, imaging, blood work-everything. I wanted it that way so I didn't always have to bring records, etc. & as I'm sure you all know, we have a binder full of tests, etc! Lol) SO, there's NO record, notes or anything regarding my NS, the calls I've made to him, msgs. I've left, etc. nothing!!! He said he knows my NS & that he notates everything, including how he responds to msgs. I was able to even prove by 2 voicemails (all other calls she made to me I caught & it didn't go to voicemail during this relay of confusion) from his nurse saying "Dr. has said absolutely no, under no circumstances will he prescribe anything for you, that is why he sent you to PM!!!" (It was harshly said. Emphatically said. However, even the PM clinic were on hold for at least an hourly & 20 minutes trying to get through to him or to his assistant/nurse.they ended up leaving a msg. for him & there's no record of that, nor have they rcvd. a return call. So the PM Dr. was very irritated by them & he said I was lied to by NS's nurse, saying that my NS rcvd. msg& said the whole "no!!! That's why you're at PM.
The PM Dr. did "lecture" me for nearly 45min., about how narcotics/pain meds. are the "wrong path", he went on & on that I'm really only hurting myself by taking them. He scared my mother by asking her if she wanted to see me die from these medication. He said opioids are NOT a long term treatment. I get it...they neeeed to keep anyone off the meds that do not need to be. But w/him, this "treatment" is harmful & not necessary-except for a couple wks. after a major surgery. Shots are the answer. Injections are apparently not a band-aid like medications are. He told me to live like this is my future & taking pain medication is not the right answer. Again, I get it! I don't want to be in chronic pain in my future-I'm holding onto hope & faith that I'll NOT be in this kind of pain in my future! But, right now, I am. Right now, it IS chronic. Yet I asked about getting a TEN's unit-again, he said I would not benefit from it at this point (?!?!?)
He did rx. me 15mg. morphine ER(vs. the IR) and said I'm supposed to taper myself off w/these 45 pills, by taking 4 one day (I was previously, at a managed point, with 30mg. ER 2x's per day). He said then to take 3 the next day-4the next, then do 3 one day & 2 another..he ALSO said to cut these in half! But I'm under FUZlL impression that you should NOT cut these ER pills in half (none of these instructions are written on the bottle. This is what he had his nurse say when she handed me the rx- which will be "a total exception, to rx me this -as he fully knows my NS office is messed up & PCP can NOT get me in until Feb. 5th-he even had his office calm to see if they could gluey me in any earlier-just as I did-and no, they can't-just call everyday for cancellations). I'm WAY confused about the "cut them in half" bit...talk about his safety lecture...that seems VERY dangerous! But the nurse said "that's right, but follow doc's directions".
Strange. I don't mind-I look FORWARD to not being in this pain. I look FORWARD to a day to not need this kind of care. And I don't mind trying other approaches-but all his answers to approaches is injection. That's it! (But that's not a band-aid). This whole brick, the pain, the lack of communication w/my NS has worn me out!
I plan on going into my NS on Wed. with "is there a way to "make" the brick go away&gif he's unsure, send me to someone who IS. Or MIGHT have some ideas. Also, is it constant fluid leak? What exactly-exactly is going on here, b/c in done. And, I'm sure out of all the opening heads he's done, did someone develop this? If so, how long did this go on? What happened/how? If he doesn't know, does a colleague? Something more tangible for me to hold onto. And...just as his nurse hastily & frustratingly told me when I asked "I thought, from what he said, id be going to a PM that would do allllll these different approaches..including meds., she said for me to call my insurance & find out which ones take my insurance. Well, I did my research&spoke w/each one. I decided upon one that does lots of alternative therapies as well. Dr's to deal w/meds, a type of shiatsu for relieving bound up trigger points, trigger point injections, eyc etc. but they were very calm & nice in the phone. So, I'll ask to be referred there. I do NOT feel comfortable w/these Sr's I was sent to. My mother left scared. Uncool. I just want to get better & not have to deal w/any of this.
Looooong update again :/ I just can't seem to write short... Anything!!!! :/
(I do hope my NS's nurse is called out for her msgs. The PM Dr. was VERY unhappy about that whole situation there.)
Ugh. Btw-I REALLLY do not think I should be cutting these time real eased/extended release tablets in half...has anyone ever had their Dr. tell them to do so?
Thank for all you support my fellow Chiarians!!!
<3 to y'all!!!
The PM Dr. did "lecture" me for nearly 45min., about how narcotics/pain meds. are the "wrong path", he went on & on that I'm really only hurting myself by taking them. He scared my mother by asking her if she wanted to see me die from these medication. He said opioids are NOT a long term treatment. I get it...they neeeed to keep anyone off the meds that do not need to be. But w/him, this "treatment" is harmful & not necessary-except for a couple wks. after a major surgery. Shots are the answer. Injections are apparently not a band-aid like medications are. He told me to live like this is my future & taking pain medication is not the right answer. Again, I get it! I don't want to be in chronic pain in my future-I'm holding onto hope & faith that I'll NOT be in this kind of pain in my future! But, right now, I am. Right now, it IS chronic. Yet I asked about getting a TEN's unit-again, he said I would not benefit from it at this point (?!?!?)
He did rx. me 15mg. morphine ER(vs. the IR) and said I'm supposed to taper myself off w/these 45 pills, by taking 4 one day (I was previously, at a managed point, with 30mg. ER 2x's per day). He said then to take 3 the next day-4the next, then do 3 one day & 2 another..he ALSO said to cut these in half! But I'm under FUZlL impression that you should NOT cut these ER pills in half (none of these instructions are written on the bottle. This is what he had his nurse say when she handed me the rx- which will be "a total exception, to rx me this -as he fully knows my NS office is messed up & PCP can NOT get me in until Feb. 5th-he even had his office calm to see if they could gluey me in any earlier-just as I did-and no, they can't-just call everyday for cancellations). I'm WAY confused about the "cut them in half" bit...talk about his safety lecture...that seems VERY dangerous! But the nurse said "that's right, but follow doc's directions".
Strange. I don't mind-I look FORWARD to not being in this pain. I look FORWARD to a day to not need this kind of care. And I don't mind trying other approaches-but all his answers to approaches is injection. That's it! (But that's not a band-aid). This whole brick, the pain, the lack of communication w/my NS has worn me out!
I plan on going into my NS on Wed. with "is there a way to "make" the brick go away&gif he's unsure, send me to someone who IS. Or MIGHT have some ideas. Also, is it constant fluid leak? What exactly-exactly is going on here, b/c in done. And, I'm sure out of all the opening heads he's done, did someone develop this? If so, how long did this go on? What happened/how? If he doesn't know, does a colleague? Something more tangible for me to hold onto. And...just as his nurse hastily & frustratingly told me when I asked "I thought, from what he said, id be going to a PM that would do allllll these different approaches..including meds., she said for me to call my insurance & find out which ones take my insurance. Well, I did my research&spoke w/each one. I decided upon one that does lots of alternative therapies as well. Dr's to deal w/meds, a type of shiatsu for relieving bound up trigger points, trigger point injections, eyc etc. but they were very calm & nice in the phone. So, I'll ask to be referred there. I do NOT feel comfortable w/these Sr's I was sent to. My mother left scared. Uncool. I just want to get better & not have to deal w/any of this.
Looooong update again :/ I just can't seem to write short... Anything!!!! :/
(I do hope my NS's nurse is called out for her msgs. The PM Dr. was VERY unhappy about that whole situation there.)
Ugh. Btw-I REALLLY do not think I should be cutting these time real eased/extended release tablets in half...has anyone ever had their Dr. tell them to do so?
Thank for all you support my fellow Chiarians!!!
<3 to y'all!!!
And yes Selma, I'll keep at figuring out the med. thing tomorrow... I just am so scared they will just keep saying "if it gets that bad, go to the ER",..when the only reason it's gotten bad is b/c there's confusion between them -both saying the other needs to be the one to prescribe... When I'll be completely out of meds in a matter of two days. Now, already being under medicated again & looking at not medicated at all (and it's no "phantom pain"...) is going to hurt incredibly. I just want brick gone so I can focus not on pain&figure out the tinnitus return (hopefully, it's a short lived return, like you said it can be, after the surgery) and Physical Therapy....get on with "recovery". Stress is no good. But I'm stressed.
Praying.
Praying.
Thank you lassel, Kerri & Selma!
I think it is indeed very fortunate that I have s good PT, one who's was SO much more Chiari informed than I could've imagined. All the things she said(what she wouldn't do, due to the nature of condition and the surgery) matches what I've learned over the years. She's very "aware" of a Chiari & all that goes w/it...even with the EDS, she said she was glad to know as it would change her approach. She wanted to even know me a bit...so that I wasn't just a body she's helping, but the person. So I struck gold w/her!
I'm headed into my next NS appt. being strong willed that if he is still "unsure" , then who might be...there MUST, surely there's been SOMEONE, who has had this kind of thing develop with surgery to the head...and if so, what happened? These are things I'm going to get answers for.. And would an MRI be better....not just for the brick.so, I'm going armed.
Reeeealllly trying to be positive & not do what I sometimes do when I feel backed in a corner/bombarded as I do right now. (I feel completely bombarded in every way...the tinnitus, very little sleep, the pain is past not being managed again&lookung at no way to help that... It's just such an all encompassing heavy deep pain-let alone the little to medium pain of the right neck muscles which are literally flat. Spasms non-stop. A cinstant dull pressure headache..it's all exhausting.) When I'm stuck in this corner feeling hit in every way, I shut off...I end up shutting everyone out&deny/reject/push away any help if any kind & give up. I'm trying not to do that b/c I can't give up.
I should listen to some U2. That always makes my fighting spirit rise again.
And lassel, that song really kills me. I was greatful that the U2 tour was 3mo. before my surgery...as I never miss a tour! I got to see the show 2nights in a row, 5feet from the stage (I'm short, like 5'0" short) so it's essential I'm in the very front-front. So, I got to hear that (and all the other strike my soul songs) song live, right in front of me 2nights in a row...I kept telling my sister that song was going to get me live&it was a heart twister-in all the good ways. Their music really lifts me up-since age 13, it's got me through all the hard hits in life and inspires me to not just dream big, but DO big.
Thank you all...
I'll stay out of the corner again tonight...I'll not shut myself away ;)
I think it is indeed very fortunate that I have s good PT, one who's was SO much more Chiari informed than I could've imagined. All the things she said(what she wouldn't do, due to the nature of condition and the surgery) matches what I've learned over the years. She's very "aware" of a Chiari & all that goes w/it...even with the EDS, she said she was glad to know as it would change her approach. She wanted to even know me a bit...so that I wasn't just a body she's helping, but the person. So I struck gold w/her!
I'm headed into my next NS appt. being strong willed that if he is still "unsure" , then who might be...there MUST, surely there's been SOMEONE, who has had this kind of thing develop with surgery to the head...and if so, what happened? These are things I'm going to get answers for.. And would an MRI be better....not just for the brick.so, I'm going armed.
Reeeealllly trying to be positive & not do what I sometimes do when I feel backed in a corner/bombarded as I do right now. (I feel completely bombarded in every way...the tinnitus, very little sleep, the pain is past not being managed again&lookung at no way to help that... It's just such an all encompassing heavy deep pain-let alone the little to medium pain of the right neck muscles which are literally flat. Spasms non-stop. A cinstant dull pressure headache..it's all exhausting.) When I'm stuck in this corner feeling hit in every way, I shut off...I end up shutting everyone out&deny/reject/push away any help if any kind & give up. I'm trying not to do that b/c I can't give up.
I should listen to some U2. That always makes my fighting spirit rise again.
And lassel, that song really kills me. I was greatful that the U2 tour was 3mo. before my surgery...as I never miss a tour! I got to see the show 2nights in a row, 5feet from the stage (I'm short, like 5'0" short) so it's essential I'm in the very front-front. So, I got to hear that (and all the other strike my soul songs) song live, right in front of me 2nights in a row...I kept telling my sister that song was going to get me live&it was a heart twister-in all the good ways. Their music really lifts me up-since age 13, it's got me through all the hard hits in life and inspires me to not just dream big, but DO big.
Thank you all...
I'll stay out of the corner again tonight...I'll not shut myself away ;)
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