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!!!
My goodness my ♡ goes out to you!!!! I can't believe everything you've had to deal with. I do have the same issue with my NS getting messages and its soooooo frustrating. I'm so sorry to hear about your brick situation. I'm sending you lots of love and prayers. I had my surgery the 29th of Dec. When did u have yours? I'm still in quite a bit of pain. It's very hard to sleep, thats my main issue at the time that and the staples itch so bad I can't stand it!!! I get them out Wednesday thank goodness!!!!!! Very upsetting and frustrating what you're going through try to stay as strong as you can!!!
Thank you lassel & beat...
I do have every "imaging" ever done on me on cd/discs. I do not have the written report of my surgery-though I'll be sure to get that when I'm there again on Wed.(any reports, images, etc., I just sign for it & it's given to me in records dept./ at the radiology lab. I'll def. obtain those records.
I will (we've discussed, a while back, sending my records/images and anything else necedsary ) be sending my "case" to a NS (preferably one welllll known in Chiari world), perhaps even a couple-for them to review. I think that's necessary at this point.
I will also research further (perhaps call and see how many Chiari surgeries this NS has done. I do believe it's smart to have a (new) NS that has dealt w/Chiari specifically & all its related conditions many times. Well versed & knowledgeable of Chiari. My NL is very "Chiari-Aware", so I have a good many questions for her on Wednesday. I want to ask her if she KNOWS of a NS specifically related w/Chiari. It's hard to find a Dr. that you fully trust & believe in. This, is my NL...she is gold to me! She is thurough & when she's unsure if she can answer me 100%, she will say she wants to consult w/others, do her own research & will come back to me w/an answer. I love that about her. So, I'm going to her w/a lot of this.
Yes, beat (can I call you beat? ;) ), I too was taken aback when the nurse read off the "directions" of the Extended Release being "cut in half". Upon my shocked & clear "woah, I thought those couldn't be tampered with in any way as it's dangerous" comment, she simply said "oh, yea, but follow Dr's direction". If I'd not been a person who does their homework on any condition, medication, etc. that's rx'd to me & dx'd, I'd have just "followed Dr's directions". I'm smarter than that though&knew how unsafe that U.S. (Really, it doesn't even take that much "research", as its BOLDLY written on the bottle! I do plan on calling on Minday w/this "direction" and what the pharmacist said. I find it interesting though that I was also told that w/these 45pills, to taper off w/these (4 one day 3 the next, 4 another day, 3 the next...then 3 one day, 2 the next, but start cutting in half at this point.....my mom was right there in the room hearing these directions). Yet, my "patient summary" visit summary, none of this is written-and on the bottle of the ER med., it only says "Take one tablet by mouth twice a day". (I'd think it would say SOMETHING about a "taper" or something regarding the directions I was given. Strange.
Ugh, so much to deal w/when I'm just trying to deal w/getting through each day w/the relentless brick, manage the unmanaged pain, unforgiving & never ending tinnitus, neck spasms&realllly trying to NOT shut myself away, become a total recluse & won't speak to /see anybody that does care about me...like I do when I'm too overwhelmed w/pain, frustration, stressed & feel bombarded like I do right now.
Thank you all, endlessly! Many hugs to you all! <3
I do have every "imaging" ever done on me on cd/discs. I do not have the written report of my surgery-though I'll be sure to get that when I'm there again on Wed.(any reports, images, etc., I just sign for it & it's given to me in records dept./ at the radiology lab. I'll def. obtain those records.
I will (we've discussed, a while back, sending my records/images and anything else necedsary ) be sending my "case" to a NS (preferably one welllll known in Chiari world), perhaps even a couple-for them to review. I think that's necessary at this point.
I will also research further (perhaps call and see how many Chiari surgeries this NS has done. I do believe it's smart to have a (new) NS that has dealt w/Chiari specifically & all its related conditions many times. Well versed & knowledgeable of Chiari. My NL is very "Chiari-Aware", so I have a good many questions for her on Wednesday. I want to ask her if she KNOWS of a NS specifically related w/Chiari. It's hard to find a Dr. that you fully trust & believe in. This, is my NL...she is gold to me! She is thurough & when she's unsure if she can answer me 100%, she will say she wants to consult w/others, do her own research & will come back to me w/an answer. I love that about her. So, I'm going to her w/a lot of this.
Yes, beat (can I call you beat? ;) ), I too was taken aback when the nurse read off the "directions" of the Extended Release being "cut in half". Upon my shocked & clear "woah, I thought those couldn't be tampered with in any way as it's dangerous" comment, she simply said "oh, yea, but follow Dr's direction". If I'd not been a person who does their homework on any condition, medication, etc. that's rx'd to me & dx'd, I'd have just "followed Dr's directions". I'm smarter than that though&knew how unsafe that U.S. (Really, it doesn't even take that much "research", as its BOLDLY written on the bottle! I do plan on calling on Minday w/this "direction" and what the pharmacist said. I find it interesting though that I was also told that w/these 45pills, to taper off w/these (4 one day 3 the next, 4 another day, 3 the next...then 3 one day, 2 the next, but start cutting in half at this point.....my mom was right there in the room hearing these directions). Yet, my "patient summary" visit summary, none of this is written-and on the bottle of the ER med., it only says "Take one tablet by mouth twice a day". (I'd think it would say SOMETHING about a "taper" or something regarding the directions I was given. Strange.
Ugh, so much to deal w/when I'm just trying to deal w/getting through each day w/the relentless brick, manage the unmanaged pain, unforgiving & never ending tinnitus, neck spasms&realllly trying to NOT shut myself away, become a total recluse & won't speak to /see anybody that does care about me...like I do when I'm too overwhelmed w/pain, frustration, stressed & feel bombarded like I do right now.
Thank you all, endlessly! Many hugs to you all! <3
I recently had a very highly regarded neurologist (voted one of Texas best!) tell me to cut HUGE extended release gabapentin pills in half because they're just too big for me to swallow. I cocked my head at her and asked if I could do that with an extended release medication? she told me I was too smart.
Good luck finding another neurosurgeon .... Do you have your surgical reports? they'll WANT them! when I was going through my LP shunt problems no other general surgeon wanted to touch me ... because they didn't know exactly what the previous surgeon did, even with many scans in hand. Some hospitals have on site medical records departments where you can just go sign something and they'll print them out. Some you have to call for / or snail mail off for. But definitely try to get your hands on them for any new surgeon.
Good luck finding another neurosurgeon .... Do you have your surgical reports? they'll WANT them! when I was going through my LP shunt problems no other general surgeon wanted to touch me ... because they didn't know exactly what the previous surgeon did, even with many scans in hand. Some hospitals have on site medical records departments where you can just go sign something and they'll print them out. Some you have to call for / or snail mail off for. But definitely try to get your hands on them for any new surgeon.
Hi Emme80, I second the suggestion for another opinion. I just hate the way you are being treated by your NS's office. It's not right. Well known institutes like the Wisconsin Chiari Center, The Chiari Institute (although they blew me off), and the Chiari Neurosurgical Center at NSPC have methods in place to review your images for a minimal fee.
Is the new NS in phoenix a true chiari specialist? I think in your case seeing one that really specializes in chiari is the way to go. I saw 4 NS in the NJ and NYC area that claimed to specialize in chiari but were not helpful at all.
Good luck at your upcoming appointments.
Is the new NS in phoenix a true chiari specialist? I think in your case seeing one that really specializes in chiari is the way to go. I saw 4 NS in the NJ and NYC area that claimed to specialize in chiari but were not helpful at all.
Good luck at your upcoming appointments.
Thanks Kerri & Selma! I'll let us know what NL & NS say this coming Wed. & Thurs.
I did call pharmacist - he knows me well-jokes w/me about my thyroid meds...he's very very helpful-especially when I had to be on Coumadin for a massive DVT-
But he said do NOT tamper w/this med/pill. It cannot be cut as it can release dangerous amounts of the drug into system all at once. He said do NOT & contact my Dr. who rx'd it.
I suppose I'll leave a msg. for the PM doctor saying it's dangerous & after all, I don't wat to DIE from this medication lol (my sarcasm is saving me right now).Ill def. makes these stretch out & taper down.
I agree Kerri-another NS may see something else.we decided to send all CT's (pre & post- op) & MRI's to a NS in Phoenix. I really trust & love my NL, so I'm hoping she may have some suggestions, advise & guidance.
I hope you all are having a restful & duscmfort-free, non-dizzy night!!!
And, THANK YOU!!! <3
Sincerely, the brick & I ;)
I did call pharmacist - he knows me well-jokes w/me about my thyroid meds...he's very very helpful-especially when I had to be on Coumadin for a massive DVT-
But he said do NOT tamper w/this med/pill. It cannot be cut as it can release dangerous amounts of the drug into system all at once. He said do NOT & contact my Dr. who rx'd it.
I suppose I'll leave a msg. for the PM doctor saying it's dangerous & after all, I don't wat to DIE from this medication lol (my sarcasm is saving me right now).Ill def. makes these stretch out & taper down.
I agree Kerri-another NS may see something else.we decided to send all CT's (pre & post- op) & MRI's to a NS in Phoenix. I really trust & love my NL, so I'm hoping she may have some suggestions, advise & guidance.
I hope you all are having a restful & duscmfort-free, non-dizzy night!!!
And, THANK YOU!!! <3
Sincerely, the brick & I ;)
I really think it may be a good idea to seek out another NS also emme. Sometimes they will see something the other one either missed or didn't do correctly. Either way something's going on and you're not getting any answers from this one.
Prayers that you feel better!
Prayers that you feel better!
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 ;)
COMMUNITY LEADER
Sending you Good Vibes ~~~ you get the med situation straightened out.
Keep us posted.
I've just read through this thread and I'm sorry you are going through this and just wanted to say I'm hoping things get better for you. It's not fair that you are being treated this way. I was treated somewhat like this months ago when I was between 2 doctors who didn't really know what to do with me and I was so sick at the time. I felt like I kept "bothering" them and felt very neglected and I felt like the office staff were rolling their eyes at me over the phone.
Recovery from this surgery is hard, even when it goes relatively well, so I can image how hard it's been for you. Hang in there, and if you don't get the answers you need, try another NS maybe???
Sounds like you have a good physical therapist. They are hard to come by. I've been debating trying to find one but I don't want to waste time and money on someone who won't help. It's not like I need traditional "recovery from hip surgery" physical therapy, it's like I need all over muscle imbalance recovery. If I call an office they ask what am I coming in for, like I am going to say my lower back or my hip and I don't even know where to start. I want to say my entire right side of my body is tight, but I know I'll get the silent pause over the phone and they will be thinking I'm nuts. Then I'll mention chiari and they will say "what, can you spell that?" Then I'll be the one rolling my eyes!! Ha
Recovery from this surgery is hard, even when it goes relatively well, so I can image how hard it's been for you. Hang in there, and if you don't get the answers you need, try another NS maybe???
Sounds like you have a good physical therapist. They are hard to come by. I've been debating trying to find one but I don't want to waste time and money on someone who won't help. It's not like I need traditional "recovery from hip surgery" physical therapy, it's like I need all over muscle imbalance recovery. If I call an office they ask what am I coming in for, like I am going to say my lower back or my hip and I don't even know where to start. I want to say my entire right side of my body is tight, but I know I'll get the silent pause over the phone and they will be thinking I'm nuts. Then I'll mention chiari and they will say "what, can you spell that?" Then I'll be the one rolling my eyes!! Ha
Indeed. It's is & has been SO very frustrating! I'm not getting through, at all. I just heard back from the PM office today...turns out the reason there was no script left for me before the PM dr. left, is because he is NOT prescribing another medication. The only reason he wrote the script, last week, for one week, was so that I could get into my NS or my PCP this week and THEY would take care of meds. I've left yet another msg. w/my NS office today to inform them of this. I also asked the PM clinic to contact my NS office to inform them of this-as I am obviously not being heard/"getting through/believed. So, I've yet to hear anything. But I do know that my NS does surgeries on Tuesdays & is not in clinic today. So-I don't know that I'll hear anything today-just leaving me stressed another day and night. The PM nurse said that if it comes down to it, I'll need to go to the ER. I dread that. And I'm unsure if the ER would even rx meds., just because of the situation in in... I don't know how this works-I've never been in a position like such. The pain right now has me unable to put the back right side of head on my pillow again, I barely slept, it was a "breathe through it" all night...and still is today. Hurts to cry. It's at a strong 7-8. Just trying to hold still.
I wish I had an e-mail or some kind of more direct line of reaching my MS, because this is just nuts- the lack of communication & understanding. I do certainly hope PM contacts my NS office today , as he IS in clinic tomorrow & maybe this can be sorted out-so I can be a 1/2 normal person, who can move around & continue pushing my body to regain strength, stamina, PT, go to the grocery store & walk around...function at a "managed" level. Then, I can focus on what I want to come of my next appt. w/NS, what I need to ask-regarding the brick- the culprit at the bottom of this mess.
I so dread the idea of going to the ER....the last time I was at an ER was a fully traumatic experience. A nightmare for sure. Even the head Dr. apologized-he knew it was baaaddd. Ugh. I'm tired of the brick.
I wish I had an e-mail or some kind of more direct line of reaching my MS, because this is just nuts- the lack of communication & understanding. I do certainly hope PM contacts my NS office today , as he IS in clinic tomorrow & maybe this can be sorted out-so I can be a 1/2 normal person, who can move around & continue pushing my body to regain strength, stamina, PT, go to the grocery store & walk around...function at a "managed" level. Then, I can focus on what I want to come of my next appt. w/NS, what I need to ask-regarding the brick- the culprit at the bottom of this mess.
I so dread the idea of going to the ER....the last time I was at an ER was a fully traumatic experience. A nightmare for sure. Even the head Dr. apologized-he knew it was baaaddd. Ugh. I'm tired of the brick.
good luck in finding out what in the world is going on! It stinks when you're trying to get through to the NS and receptionists or nurses don't give the message. Another reason I switched....
Indeed Selma...I just talked with my mom about it & as I'm still unable to drive, she's going to take me there on Wednesday. He has clinic on Mon., We'd., & Fri. He does surgeries on Tues . & Thurs. (he's on call for the university medical center neoro. surgery team on Tuesdays...schedules the bigger surgeries, like mine, on Thursdays.) so, I'm going to give that a shot. I'm going to call 1st tomorrow morning to see if there's any cancellations for Wednesday as well. I just... I know that going off the med. at this point will undoubtably bring me to the floor pain again. Thespian has not chslanged-just more effectively managed. And I recall (as does my mom) that when I was put on this med. that when taken off, it would be done gradually over about two months he said. 2weeks seems quick (not speaking of the pain that I know would land me in the hospital kind of pain). I'm struggling with this different & decreased med. even now. I was at a "comfortable 4...flares of 5. It bothers me that me being taken off of this med. has nothing to do w/my pain, it has to do with the fact that this PM dr. doesn't work w/pain meds. & that's why he's taking me off. Nothing to do with the pain/regardless of the pain. Ugh. We'll see.
When I see him I want a plan in action though. I want to leave w/some kind of 2nd plan/Plan B in place.
(In regards ton"brick" or...if there's really nothing to do, is there anyone else to consult with? I don't have a clue, but what field does "brick" fall into? These are things I need to ask & get more of a...stressed put on it. The brick is title ing me out. That I know. Quicker the brick is gone, the quicker I can find out if that's what's causing the dizziness, return of tinnitus, vertigo (it's different than dizziness, the vertigo), stuttering, etc.) So, I just wish I could focus on brick next week vs. being all flustered by the medication situation. :/
When I see him I want a plan in action though. I want to leave w/some kind of 2nd plan/Plan B in place.
(In regards ton"brick" or...if there's really nothing to do, is there anyone else to consult with? I don't have a clue, but what field does "brick" fall into? These are things I need to ask & get more of a...stressed put on it. The brick is title ing me out. That I know. Quicker the brick is gone, the quicker I can find out if that's what's causing the dizziness, return of tinnitus, vertigo (it's different than dizziness, the vertigo), stuttering, etc.) So, I just wish I could focus on brick next week vs. being all flustered by the medication situation. :/
Woah...that burning bit sounds horrible! I'm glad that you're seeking a new NS. I will decide if I should stick w/this NS when I see him in the 14th(my next, monthly f/u with him). Based on how he's going to handle this weird situation (really, if he never truly GOT the msgs. regarding the confusion over the PM (what he described to me) what HE said, if this wasn't the right one & this nurse never got him the msg., I find that wrong wrong wrong. He's said before there's issues w/him getting msgs. about issues. It seems like the nurse kind of screens what gets to him & what doesn't. In this case, on paper, I was sent to PM, but not what he described-it's conflicting. He said I needed to stay in this med. for awhile while we "watch" the brick, as he well knows this has been THE biggest source of pain...
So, I'll see how he is w/me on next appt. (until then, I don't know what to do for meds. as what they put me on to taper is falling way off from "managing" the pain. And there's the little fact that the PM Dr. didn't even leave a script for me for the "2week taper off meds. altogether" plan they have (leaving me 6days short, by the time he comes back). Even the PM nurse seemed confused by this. So, the "answer" from her is go to ER when I run out :/
As my NS has mentioned surgery, I'm at a point that is take it if it meant no more brick. I just hope I wouldn't develop another "collected fluids" mound , round 2!!! That'd be my luck.
Feeling a little shoved off by both Dr's, like the msg.(s) haven't actually gotten to my NS (she hasn't said that "he said" at all). And frustrated...I hope your new NS appt. is a positive one-that he listens to you & will help you sort out the cause of these very problematic issues for you!!! Please do keep me/us updated.
(I found it strange and funny, but not..that the PM said that I shouldn't be experiencing pain like this at my "age". I did say today, that I know my age was mentioned at my appt., but I want it on record that I don't know that post-surgical collected fluid buildup causing pain, nor does Chiari, care one bit about age... unfortunate as that is. :/
So, I'll see how he is w/me on next appt. (until then, I don't know what to do for meds. as what they put me on to taper is falling way off from "managing" the pain. And there's the little fact that the PM Dr. didn't even leave a script for me for the "2week taper off meds. altogether" plan they have (leaving me 6days short, by the time he comes back). Even the PM nurse seemed confused by this. So, the "answer" from her is go to ER when I run out :/
As my NS has mentioned surgery, I'm at a point that is take it if it meant no more brick. I just hope I wouldn't develop another "collected fluids" mound , round 2!!! That'd be my luck.
Feeling a little shoved off by both Dr's, like the msg.(s) haven't actually gotten to my NS (she hasn't said that "he said" at all). And frustrated...I hope your new NS appt. is a positive one-that he listens to you & will help you sort out the cause of these very problematic issues for you!!! Please do keep me/us updated.
(I found it strange and funny, but not..that the PM said that I shouldn't be experiencing pain like this at my "age". I did say today, that I know my age was mentioned at my appt., but I want it on record that I don't know that post-surgical collected fluid buildup causing pain, nor does Chiari, care one bit about age... unfortunate as that is. :/
COMMUNITY LEADER
So sorry to hear you keep getting the nurse and the "royal Chairi runaround"
.....It does seem like she is not understanding what you are trying to convey.
if the office is close enuff I would go over and try to explain in person...as it may be helpful for the nurse.....?? Maybe the Dr will over hear and ask what the issue is??? worth a shot
Hey Kerri... you had your surgery in the summer, yes? I read about your recent numbness episode-that's scary! Is that what made you switch to another NS? When is that appt? I think I read In January...is the dent still there?
It's a relief to know (but I'm not saying at your expense!) that others are still facing post-op issues. This has been the biggest struggle of my life. The point of the surgery was to hopefully find relief. I'm hopeful that SOMEDAY this brick will go away...and I'll be able to step back & see some of the benefits. My NS is thinking about approaching it surgically. Which in one hand-great-if it'll get rid of it, hurt from a week or two from being cut again, BUT, I really dread thought of a knife again! I'm dreaming of getting off meds. one day- sooner than later- but, as the most very recent CT shows, it's still very there. (I don't need a CT to tell me though, I can feel it..) And it's as painful as it was since day 1, this mound on the back of my head is NOT a pain I anticipated.
Now, I'm just so completely lost between NS and PM. I know right now, taking me off the meds. (And w/in 2wks. for which the PM Dr. didn't even leave a script for the "2week taper" before he left for a week. So, that leaves me short) is going to send me straight up to crushing pain. Besides that, I thinks it's strange that I'm being taken off the meds-having nothing to do w/the pain- but b/c this PM Dr. doesn't work that way (pain meds). So, he is taking me off...b/c of the way HE works=no pain meds....NOT b/c of what pain I have. That's actually not even a factor. Yet last month, my NS said I needed to stay on this dose for awhile...while we waited a good few months to see if brick would blow that we reached an not over medicated & not under medicated dose. I'm confused.
I don't know what to do /think about this immediate situation .And then I'm also still hoping & praying I'll wake up one day & this brick will have just broken-up & will resolve itself!
So...
This darn brick!
It's a relief to know (but I'm not saying at your expense!) that others are still facing post-op issues. This has been the biggest struggle of my life. The point of the surgery was to hopefully find relief. I'm hopeful that SOMEDAY this brick will go away...and I'll be able to step back & see some of the benefits. My NS is thinking about approaching it surgically. Which in one hand-great-if it'll get rid of it, hurt from a week or two from being cut again, BUT, I really dread thought of a knife again! I'm dreaming of getting off meds. one day- sooner than later- but, as the most very recent CT shows, it's still very there. (I don't need a CT to tell me though, I can feel it..) And it's as painful as it was since day 1, this mound on the back of my head is NOT a pain I anticipated.
Now, I'm just so completely lost between NS and PM. I know right now, taking me off the meds. (And w/in 2wks. for which the PM Dr. didn't even leave a script for the "2week taper" before he left for a week. So, that leaves me short) is going to send me straight up to crushing pain. Besides that, I thinks it's strange that I'm being taken off the meds-having nothing to do w/the pain- but b/c this PM Dr. doesn't work that way (pain meds). So, he is taking me off...b/c of the way HE works=no pain meds....NOT b/c of what pain I have. That's actually not even a factor. Yet last month, my NS said I needed to stay on this dose for awhile...while we waited a good few months to see if brick would blow that we reached an not over medicated & not under medicated dose. I'm confused.
I don't know what to do /think about this immediate situation .And then I'm also still hoping & praying I'll wake up one day & this brick will have just broken-up & will resolve itself!
So...
This darn brick!
1 Comments
Yeah surgery was in July. I had about 5 days where I felt alright (except for the miserable surgical pain), and then things started going a little crazy. Severe migraines, more intense visual disturbances. Numbness and tingling. Every time I tried to speak to the NS regarding these issues I was kinda blown off. Told it was CCI, and to wear an aspen vista collar. I would email and they went unanswered. I just gave up trying and decided to seek someone else out who may actually listen to me and not blow me off. The numbness thing started growing and now I've had episodes where my thighs feel like they are literally on fire. Seeing halos in vision and blind spots. It's just crazy, and I feel like I'm going mad! The dent is still there and it's quite uncomfortable to say the least.
Do they think surgery will help rid this brick? I think if they do it would be worth a shot. It sounds awful and if you would get some relief, it's something to consider. Although the thought of another surgery is scary. I hope they come up with a game plan for your pain to get it under control. If they had to walk in our shoes, it would be a different outcome I'm sure!
Do they think surgery will help rid this brick? I think if they do it would be worth a shot. It sounds awful and if you would get some relief, it's something to consider. Although the thought of another surgery is scary. I hope they come up with a game plan for your pain to get it under control. If they had to walk in our shoes, it would be a different outcome I'm sure!
Well I'm sorry to hear that you're still not getting any help or real answers. It really stinks to know something isn't right and you just get the runaround.
I truly wish there were more Drs and staff knowledgable enough to listen and help chiarians. This isn't easy for us and we don't like to call and hound them for help. But we are paying them to do a job and see it through....
I too am still struggling post op and am trying to take it day by day. Hoping and praying the new NS will be able to help this unrelenting pain and strange issues to once and for all stop!
I hope you too find relief!
I truly wish there were more Drs and staff knowledgable enough to listen and help chiarians. This isn't easy for us and we don't like to call and hound them for help. But we are paying them to do a job and see it through....
I too am still struggling post op and am trying to take it day by day. Hoping and praying the new NS will be able to help this unrelenting pain and strange issues to once and for all stop!
I hope you too find relief!
Well, I got the run around today...NS office, I kept getting return calls from the same Nurse. Telling me that's why I was sent to PM, told to call PM. I did. They said they don't rx pain meds. -that's why they have me on a "taper plan" set to be tapered off in 2 wks. But, that if my pain was still at this level, contact the NS office (asked them to and vice versa).So, I'm not being taken off surge to my pain-it has nothing to do w/my pain. It's to do with the fact that they (this PM) doesn't rx. pain meds. But, even with this "2week taper plan" set with them, I mentioned if there was a way to get in to see that PM dr. This week- but he's out until next week. I asked about where I'd get the rx if that's what I have to do- but he didn't leave one for me to pick up&no other Dr. can do it. Which, even she said was unfortunate b/c that would leave me out of meds. for 6 days. So, I'm even MORE confused than ever. The PM nurse said that if it hurts, I needed to go to the ER... Ugh. I'm SO confused. It's weird that they're taking me off regardless of what pain I have w/the ongoing "brick" saga...the reason for taking me off w:in the next 2wks. (Even @ that, apparently, no script for me & the Dr. is gone for a week&2days!) has nothing to do w/my pain. It's due to the fact that this Dr. doesn't treat w/pain meds. Seems strange & like I said.. I'm more confused & lost than before!!! :/
COMMUNITY LEADER
LOL...I enjoyed your " oh I forgot yo tell you" "book" you posted....lol...it certainly brought me up to speed with what is going on with you....
I had a wonderful Christmas , thanks for asking....some lower back pin I believe is my TCS flaring up....nothing I cant handle ...I have some pain meds for such instances....
Keep at that Dr....do you have a direct e-mail for him/her? That could help you bypass the nurse.....
Yes, zygy2 is the best person for you to talk to concerning your brick.....
Oh...forgot to tell you, my Rheumatologist did determine that I do have EDS. It was helpful to my physical therapist apparently...(upon my PT evaluation/1st visit) she said she was so glad to know it, as it can really change how she approaches therapy! She said every muscle from shoulder blades up were beyond tight...they were "mangled cement". She could feel the "brick". She was surprisingly knowledgable of Chiari. Surprisingly! She made sure I would never do neck traction, she will only work gently on me(even though I'd love her to take a hammer to everything! lol!). She wants every CT, she wants to keep an eye on CI. She's a bit worried about some of my symptoms( the vision has gone blurry-doubled, constant full pressure headache always, the dizziness if I bend offer is horrible-elevators are a 100% nightmare etc) & whatever kind of "flow" she could feel, she said was low...that she couldn't manage to "reset" it, in order to get a good reading. She said I should contact my NS & she was sending him notes. So, I guess I need to call him & see him about that anyways. As well as the PM not taking over my meds. Both the PT & PM were last week. So... Yea...
A rather long "oh I forgot to tell you", :/
I always write too much. I'm the kind of person that "character limits" are probably in place. :/
A rather long "oh I forgot to tell you", :/
I always write too much. I'm the kind of person that "character limits" are probably in place. :/
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