Well Friday the 6 Th i evening - I had my head and neck get stuck because of my Kissing Osteophyte's - they stuck hard and fast with a horrible snap to get them to release- So I contacted My doc's office that does the Injections and got an appointment for Tues. 9-10-19 . But this meant Friday I had to start bridging to get my INR down to 1.3 or so for this to able to be done. Friday morning my regular testing day INR had come back at 3.6 .so i had 3 days to get it down instead of the 6 to 7 days Anticoag Clinic likes .But it being an emergency we tried to do it and managed to get it down to 1.1 Ya Hoo . So was able to get the injections and at same time got my TPI Lidocaine shots same time in Trapezius muscles in neck and back . fast forward to last night . had bad issue with pressure in head and just about passed out - and again this morning . I have lesions or white matter in left and right side of Cerebral Hemisphere's . { 13 if memory serves me right HMM } So today I have the Injection Doc. - PCP and supervising nurse and now Neurology getting me set for what ever they come up with after appointments start tomorrow . I am sure an MRI will be a start , i am home and quiet till my appointments start tomorrow needles to say . have been playing musical phones with them all day and it is 4:35 PM now and they can call me up to 6 PM. i was scared out of my wits last night -thought i was going to die.It has been years since any of this has happened so it took me by surprise . I had just bent way over and lifted my head at same time trying to look into bottom draw of file cabinet {even as short as I am it didn't make a bit of difference } and that is what started it .They are thinking maybe c spine injections may be playing a role here with this BUT i never have had a problem with this before and have been getting the c spine shots for a few years now ?? maybe just the way THE STARS LINED UP IN THE HEAVENS ?? They say it doesn't rain but it pours - so i would be AMAZON JET . Will know more tomorrow afternoon late. My normal Neuro Doc just retired Sept 1 ST. So i don't have another lined up yet .started working on that this afternoon. We all know how hard it is to find a Neuro that you can work with or at least i have been thru a few before finding my beloved Dr. Dany's God I will miss her - she would learn and dicuss about anything and she listened to what I found and brought forth . A lot came from right here on this site way back in the start of my getting involved here 2012 or early 2013. last post i said i am falling apart-- well now i know it is even worse than i thought . Blood INR again tomorrow also , last Enox tomorrow morning 120 ML before i go to Hosp. to test . Who knows maybe Casey and I won't even leave the Campus , they all are on the same campus accept my Pain Care Doc that does my injections BUT he is only 2 miles away ,and i know my Supervising and life saving nurse Shannon put a call into their office, she asked me if i would mind or would i rather call myself ?? No I said Shannon you know what you need so go ahead and call. tight knit groups ha Ha .I don't know what I would do with out Shannon either -She has been with me 7 years Thru the GOOD the BAD and the UGLY always by my side no matter what . Thank GOD for her also - She will be calling me tonight before she goes home at 6 - I asked not to BUT i know her -she instructs her nurses that is anything happens to me nights or her days off to page her . !! 0 well it is what it is . HMMMMM !
Stuck neck : Well Friday the 6 Th i... - Hughes Syndrome A...
Stuck neck
Thank GOD for Shannon.
Isn’t it wonderful to have people like this in your life, Jim?
I’m so glad you have a good team looking after you.
Who is the new Neurologist who replaced Dr Dan(y?)
I’m not quite sure I caught all the issues- basically you could say you have calcification of the spine , and degenerative dic disease with slipped, bulging, herniated, or rupturing discs?
Is this causing bone on bone issues in your spine?
Good luck with all of this. The bridging plans you know by heart.
Make sure that if the pain meds make you loopy, you can manage the bridging correctly.
Write everything you do down, Jim. DATE/ TIME/ AMOUNT.
Keep us posted. And good luck.
You will fell much better when it’s done!
What is the issue with C-spine is called " Kissing Osteophyte's " the bone spurs hit from what is most likely me shrinking .with age !! well they even get stuck where my head won't turn and when i try to get UN STUCK it cracks like your knuckles do and then a shooting pain up into head so-- I get injections to separate the dicks of spine so they don't hit and get stuck { only me G Ha ha }and they did my TPI as well -- Dr Dany's retired dam it all . she sure picked a great time ha . BUT i talked to a woman and she is going to try a couple of the Doc's there one woman and one man - as most that know me here know i prefer woman doc's no herniated or slipped disk YET -- { don't jinks me hon.. Boy } i have inguinal hernia's bilateral and 3 umbilical also in last few years along with the hip core decompression in 2012 . but this list goes on and on my friend G well it's 6:20 here now just typed 6 replies on this piano this morning -my one typing finger is exhausted !! I have to go do my second blood INR of the week and to see if i can drop the 120ml Enox and close this bridging and then appointment with PCP Dr Linda and Shannon set a course for what we will be doing here .and a referal to Neuro. and hope for the best . You know i joke a lot BUT i really thought i was going to die with that much pressure in head -far more than any time before in my life . I truly thought i was going to die that night with my Neuro file in hand. well I hope that help's you understand kel .and thank you my friend - i do have way to many issues for a mid sixties hobbit
Kel some day i would love to talk to you where i can go over what i have been thru with this mess- much like i have with some of the past admin.s when they were all in UK { and i can type a lot better now } . it made it so much easier and you know we still talk to this day . I use to remember so much more when i use to talk to Doc's and nurses about our disorder. i just have lost to much memory - i get stuck - the hosp. have asked why i hadn't been there to talk but quite frankly i can't anymore sadly BUT when i could i brought understanding as a patient { to the doc's and nurses } that was well informed and did re search to their questions- i was the first one in this area to go to the major hosp. with this very agenda. most all i brought to them came from this site in 2011 or 2012 or maybe earlier - i lost my old comp. records . Think about a talk some time { better be soon ha } PM me .
Thanks for caring Kel
I chuckled when i read "Meds make you LOOPY " Ha ha don't you think i am LOOPY enough with out them ?? Disks i C -spine aren't herniated nor bulging not even slipped or ruptured - it a problem called " Kissing Osteophyte's as looking at my back from the back side p bottom R of one disk has like an upside down Hersey kiss -- Then top R of next disk has the Hersey kiss pointing up and they hit and at times LOCK -and when i force my head to turn THAT'S when the CRACK sound is heard and it breaks free and most times i get this BURNING SHARP PAIN that runs up my spine to the top of the back of my head and it can drive me to my knee's --It only lasts seconds Thank God . Kel In my appointment you made mention of every one should have a Shannon - Well I told her that her name is in the world wide with in the APS site's thru out . She turned RED and said what have you done so i told her .See i can't have an appointment at Concord hosp. with out her there .I did find your comment " Thank God For Shannon " and copied it to show her . She is very upset with this pressure problem - I am home bound now with phone calls coming in to check on me . NO tilting head forward NOR backwards - No bending over and standing up with out holding on to something. I have had a couple of issues today BUT it's because i forget and do something Stupid or LOOPY ha ha . Shannon doesn't come back on duty till Tuesday Morning so I will be on Concord Hosp. campus for INR draw - She has instructed my assigned nurses to call me thru out the day on Monday and I know at 7:30 AM on Tues my phone will be ringing and guess who that wil be . HMMMM .The tests should be starting Monday also -CT and Doppler Ultra - and X rays - They couldn't order them Friday Till Dr Tan gets the OK from Dr Linda and the referral to Neuro should be in place . They at Neuro's office { JEAN } i spoke to on who for Doc's were being considered for me 1] a woman and 2] a man - the man a stroke specialist and i think that's who i will be going in to see. I prefer woman doc's BUT Jean seem to think He will be the one so after quite a long discussion with Jean well i will put my trust in her judgment . Funny Jean passes thru hallway by blood lab every Tues and Friday morning at the time i am there {with in an hour or so . SO when i was talking to her she remembers Casey and she said " 0 i know who you are You have little Casey right ??? this happens all the time Casey is a celebrity there at Concord hosp and up State at Dartmouth Hitchcock Hosp. I always refer to Dartmouth as " LEB " the town in which it is . BOY this turned into quite the BOOK. Sorry . ha just LOOPY Hyper me . ha ha HMMMM. BBN Casey and ME
Sending you a huge hug from the UK, you put up with so much and always contribute on here in one way of another. I wish you a really really speedy recovery. I am glad you have support around you and a good medical team. MaryF
Sending good wishes!
Ros
Thanks 1 today will be the start as to what and how this one is going to be dealt with and to see where INR is for past bridging and this head pressure problem. should know early wevening what the plan is thanks
Jim, so sorry another plate-no, make that a souflay ! - of medical worms has been served you. Do let us know how things progress.
I’m sorry you are suffering so much, I’ll be thinking about you and hoping for the best. Like MaryF, sending a hug.
I have neck issues and every specialist I have seen refuse to do neck injections on me. They are all to scarred with my condition. They have literally told me to just deal with it.
Like wise to Jallykrill, no injections and a definite no to surgery. Tried a few times, it has to be completely bad and 10/10 pain score and a last resort.
My neck now totally crumbling.
No answer with pain killers either.
Keep going - big hug x
I don't know that the shots did this i have carotid artery issues ? i will ahve to look up what it was exactly called and i will and get back .
So sorry you're going through all this and hope all goes well for you .. can I ask how your carotid artery issues effect you and is it when your neck gets stuck you have the artery issues or do you have it all the time .. how does it effect you .. take care and hope treatment helps x
My head gets stuck from Kissing Osteophyte's - this is a bone spurs that in my case grow down from one disk and up from the dick below and they actually hit when my head is in a certain position and it locks {sort to speak } my heads -then when forced to move it SNAPS and Cracking { sounds like cracking your knuckles on hands } then i get a burning pain up the back of skull to top of head -only lasts seconds BUT extreme pain .-Carotid arteries both sides of neck i have left and Right Proximal internal carotid artery focal Atherosclerosis < 50% This is part of the focus now and also the white matter in l and r cerebral hemisphere . so carotid artery is a separate issue now than the Osteophyte's- I had just that Tues gotten my C spine shots for that problem and then this issue sprung up so they are looking at everything BUT i never had issues before with c spine injections and the passing out dizziness -pressure in head deal .
Yes, that's exactly what they keep telling me. Same as my lower back. I have a bulging disc and its pressing on the nerves. I get sciatic nerve pain down both sides. Its miserable, but I'm told to just deal with it. I'm a mess, but I keep pushing.
They won't give you injections - ? where in States do you live ??
I live in california
wow talk about opposite ends of the country ?? - I am in mid state NH are you northern or southern Cal . Always wanted to visit Pacific North West -- But not so much southern Cal .or Southwest
But if i don't get straightened out --I won't be going Anywhere Have had a couple issues today but not real bad - on a be quiet and no sudden movement orders from Dc. and worst of All my Nurse Shannon . The wrath would come down on my acing body . If I don't follow Shannon's order's request's either or !!
Oh my, you have had a hard time. It is devastating when a trusted physician retires. I hope your next doctor is as knowledgeable, tolerant and willing to learn to understand your special needs. God Bless you!
Hi Pat - is it ever - You are not far from me - i see you are in Maine- How far up the coast are the islands ?- have a friend on Peaks at least i think she is still there .Doc's yesterday went forward with referral to a new Neuro -it a male doc he is a stroke specialist . I asked the woman in charge of the Neuro's office to get me a doc who will listen and want to learn about APS an open minded sort .and I prefer female BUT i actually have both sexes in my long list of Doc's- i have over 20 different Doc's , some are special testing some i see when needed others on a timely basis.have you heard of Dartmouth Hitchcock in Lebanon N.H. ?? { you live near to us } that's where most of my specialist are . Quite a place building almost a mile long .people come from around the world to study , school and work there . Am doing better this morning BUT i Bent over not thinking and the world started spinning again and pressure in head started to build . GOT TO STOP AND THINK before i do that again. Thanks C & J
Well -- home from PCP - referral to a new Neuro - ct and Doppler ultra and MRI - will be coming into play here -just aren't sure who is going to order what - as i didn't see my PCP BUT rather A PCP channels wil have to be followed - the did tests that aren't listed -a wild kind of blood pressure test .I think called Ortheostatic ?? where it is taken while lying or reclining on bed and bed position changed and BP taken at different intervals -and then they did EKG which came back close to normal . The doc tried turning my head to extreme sides but to much pressure -couldn't do it. so now i am home quite till Monday
I am happy you have a wonderful team looking over you. Nevertheless it is frightening and my heart goes out to you as I understand what it is you are going through. God Bless. Holly
Thanks Holly it is noted it is a scary thing when you don't know when you could just go down if not careful .Do you have these issues yourself .See i forget and I am a hyper type of person at my old age - this is why i forget everything in my body is running on 220 volts instead of the normal 120 !! ha Ha and kelly from Texas uses the word LOOPY - That;s me OOPS my night time pill alarm is going off - Hmm - Holly if you do have issue I would like to know what it is that happens when you have this . what causes or anything like that .everything is a help and should be considered- I just have SO many issues for the Doc's to consider - I wouldn't want to be one of my Doc's -- No way ha .well time for my nightly YUMMIES !! NOT Ha Thanks Holly
Hi Jetjet. Yes I somewhat have what you described with the head stuff. My 1st attack was on our 4 day Anniversary holiday in a beautiful 5 star restaurant. My day was fabulous health wise and great energy etc... Anyway, I started sweating, and became increasingly hypersensitive to the music, voices, and especially the light from the chandeliers and the candlelight’s. The different odours of the food was making me nauseated as well. Then after all of that, my head was going to explode from pressure and the anxiety level was at an all time high as I was sure I was going to drop dead right there in front of everyone including little children which freaked me out even more. All I could think of was how horrible for the little ones😩😩We had to leave. I couldn’t walk a straight line and every nerve ending in my body was jumping and jerking around. I was sure I was going to go to the bathroom in my undies. It was a trip from hell to say the least.. An anniversary neither of us will forget. I have had that exploding head thing since a few times at home and in public, but not to that degree! Since that 1st incident, I now have excruciating headaches which I’ve never had headaches of any kind in all my years. I went to the Dr and he’s ordered an MRI which I’m still waiting for. The MRI department said it will be a long time. I’m on a list and it may be well into next year! Meanwhile I hope my head doesn’t pop off waiting!! LOL...Not
Cheers Holly
I thought i was a Goner myself - I use to have Migraines with Aurora - and if they happen i have to go to the ER because the meds they will use i can only get i the hospital it is an IV set up -the last was in 2012 or 13 . My Neurologist back then was my Dr Dany's .SEE the meds i am on with the APS to boot i can only have the IV for them --I have had a headache with this BUT NOTHING like back then .I never had headaches in my life before then -Hell i never even had hang overs and i use to be a heavy beer drinker.it wasn't till the two years before APS Dia. and all the clots that it happened.I have been having dizziness for the last few months and My nurse Shannon and i were trying to find the origin of them.And i told her sooner or later they would raise their ugly heads and we would find the cause and now they are so severe and the pressure and all - I haven't heard a thing today and i am liveried-- When Shannon gets in to the hosp. tomorrow {she has Fri-Mon off} she will be calling me and she wil hear it i assure you . i should of had at least the MRI the Doppler ultra scheduled today and i haven't heard from Neurology yet either a couple of issues over the weekend but because i am being so careful they haven't been bad like the first one. So actually you were just sitting at the table ?? having dinner and they struck ? I went to my brother in law 75 birthday party on Sunday .I was OK BUT then again everything is slow and easy and i do forget and turn my head to one side or the other BUT it lets me know it doesn't like it . I can schedule my tests at the Hosp. at off hours late at night or the weekends Because that Hosp. has an Emergency Room all the testing things are staffed with a skeleton crew in case it is needed so by doing them at night and weekends i can actually get them done sooner than if i try to do it during the 8 to 5 time line during the week.I haven't had the lesions tested with an MRI since 2013 . when Dc. Dany's was there before she left the 1 ST time to do Sleep therapy and then she came back .I don't believe holly these are going to go away they may settle down but i told that Doc. I saw Friday and i quote " we haven't seen the last of these so we need to find this out before next time it happens and i won't be so lucky " They know me and i wil raise the roof off the place if needed, You have to wait a year for an MRI ?? God i hope not my friend You read what i was doing so i don't need to write all that again . where in England are you ?? Best to U Hugs C & J
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