Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hi , Thanks for that link and your kind words! Bob (hubby) had looked this up at work yesterday and read that same link - but I had not yet, so again, thanks. The other day I decided to try a hot soak in the tub and managed to get into a floating position...well, enough to get a weightless feeling in my back and that gave me the best pain relief I've experienced yet. Makes me wonder if floating/weightless-ness makes " that " float inside, thus relieving some pressure. Of course the relief only lasted while I was floating. In reading about this I certainly wouldn't want to have it in the cranial area. I could not imagine being in this level of pain in the head. I told the doctor who did the myelo that I got the " headache " after the last one which was done in April of 08. He noted that in his report in the same paragraph where he described the contrast he had just administered was leaking through the puncture site. I have been doing about 95% bed rest for the past 3 months. I get up from my side of the bed, make my coffee and stack my pillows up on the other side, get in my position and turn on the tv. Doing that along with taking the pain meds has been the means of tolerating. The worst thing is that my poor husband, though he hasn't uttered a complaint, has had all of the shopping, cooking, cleaning to do on top of his job, and I've gotten mean in nature like a rattle snake! Either that or crying out of frustration. I feel such of a renewed sense of hope that my demeanor has drastically changed, since getting the report yesterday. Hope I don't have to go all the way to Turkey for treatment!! One last note...some might recall my story of a CT/Myelo several years back when the Dr. did NOT administer local numbing and how barberic that procedure was - very traumatic...anyway, it was THAT Doctor that did this one (1/5/10) and again without local numbing, but with a small (25 gauge) needle. I barely felt it. During the first one he did I asked why no local numbing and he said that the size of the needle for the numbing was the same as for the injection...which makes sense...but nontheless I felt that needle penetrate and felt it coming out. So I guess the secret is using the smaller needle. It did take about twice as long to get the dye in (talking about seconds though). Didn't get the headache this time because, I guess, I've been staying in the reclined position. G ---- Kirkaldie <.Kirkaldie@...> wrote: > http://www.ispub.com/journal/the_internet_journal_of_spine_surgery/volume_3_numb\ er_1/article/rare_complication_of_lumbar_disc_surgery_arachnoid_lined_cyst_outli\ ned_by_thinned_posterior_lumbar_vertebrate_elements.html > > Hello , > > > > I've been reading on this after reading this interesting news about you. The above address has an interesting description and case study. Lets hope that this is the source of your pain, and it's totally fixable. > > > > Hang in there! > > > > > > Colorado Springs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 , Well...I guess thats good news! We are twisted arent we, when potentially more surgery propmpts a response like mine....but I know how debilitated you have been and I do so hope that this is the source of your pain. Sure sounds like it. Do you have a copy of your operative reports? Do you knowif you had a dural tear during revision? I know I did...and I know its not all that uncommon amongst us...but just curious. So will you PCP refer you to a neuro or will you be free to choose your own doctor? I did read that the removal can cause further instability in the spine so they often will want to place additional implants...so I am wondering if you are going to make ajourney to STL after all? Take Care, Cam > > http://www.ispub.com/journal/the_internet_journal_of_spine_surgery/volume_3_numb\ er_1/article/rare_complication_of_lumbar_disc_surgery_arachnoid_lined_cyst_outli\ ned_by_thinned_posterior_lumbar_vertebrate_elements.html > > > > Hello , > > > > > > > > I've been reading on this after reading this interesting news about you. The above address has an interesting description and case study. Lets hope that this is the source of your pain, and it's totally fixable. > > > > > > > > Hang in there! > > > > > > > > > > > > Colorado Springs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi Cam, yup - twist and shout! I do have a copy of my post op report...or the last one done...no mention of a dural tear. The bone scan I had in March of 08 said there was uptake but it could and more than likely was from healing from my May 07 surgery but I now wonder if that wasn't the fluid...will find out more (hopefully) as I continue this journey. My PCP is open to anyone I suggest and he's also doing his own search for a qualified neuro - or at least someone who knows a bit about this that can at least take a look. He recommended I see as many surgeons as seen fit before taking the plunge and encouraged me to follow through with getting my med records to STL as well. So you have heard of this? It is a newbie for me. As far as going through with surgery . . . WELL, I'm all for getting rid of this pain, but also weary a bit ... in the serious complications department I've had one strike and I don't know if life is a 3 strikes and you're out thing (not making light of anything with that statement) .... I don't know if it would be an outpatient procedure or how detailed it may be, aka, how long I'd be under, and also I feel like the " bolts " need to be removed but don't know for sure but don't want to have to make 2 more surgeries or if just correcting the pseudomeningocele issue would fix me up. Where's a crystal ball when you need it! And yes, I see it as good news - finally something to explain why so much pain, after so many years of flat out not being believed - though I'm not the only person to ever experience that. I doubt there's anyone within the health care system in my immediate area, including Charlotte, that have any experience with this - none of them (and I've seen the known good ones) ever connected my lumbar problems with scoliosis, not to mention the HR so I am much wiser now about the importance of an experienced doc and one who listens as well so as long as I can get good pain management I'm not going to be so quick to settle and pick the best of the litter, so to speak! Like my PCP said, this is IT, and I don't feel like there's any margin for trial and error and if I have to search for a year or longer then that's what I feel like I need to do. I'm trying really hard right now to wrap my head around exactly what this is - and I wonder why the MD that read this CT/Myelo and stated that it was also evident in my previous CT/Myelo and the previous one that was read by a different MD reported that I was clean as a whistle ... that one was in April of 08. Lot's of questions...new learning curve I guess. I feel like you, and others here, and my husband, are the only ones that really believed me...about the pain and difficulty walking...I feel at home here! Thanks & if you have any links to more info or have any questions then please post and/or ask!!! G ---- cammaltby <cammaltby@...> wrote: > , > > Well...I guess thats good news! We are twisted arent we, when potentially more surgery propmpts a response like mine....but I know how debilitated you have been and I do so hope that this is the source of your pain. Sure sounds like it. > > Do you have a copy of your operative reports? Do you knowif you had a dural tear during revision? I know I did...and I know its not all that uncommon amongst us...but just curious. > > So will you PCP refer you to a neuro or will you be free to choose your own doctor? I did read that the removal can cause further instability in the spine so they often will want to place additional implants...so I am wondering if you are going to make ajourney to STL after all? > > Take Care, Cam > > > > > > > > > http://www.ispub.com/journal/the_internet_journal_of_spine_surgery/volume_3_numb\ er_1/article/rare_complication_of_lumbar_disc_surgery_arachnoid_lined_cyst_outli\ ned_by_thinned_posterior_lumbar_vertebrate_elements.html > > > > > > Hello , > > > > > > > > > > > > I've been reading on this after reading this interesting news about you. The above address has an interesting description and case study. Lets hope that this is the source of your pain, and it's totally fixable. > > > > > > > > > > > > Hang in there! > > > > > > > > > > > > > > > > > > Colorado Springs > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hi , Well, I never thought I'd say " Great news! " to someone who just got a diagnosis, but this sounds like very good news for you. At least now you have a reason for all your pain and a pathway for getting rid of that pain. What a joy that will be! Good luck to you on your search for just the right doc, or team of docs, to handle this for you. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Hello Bonnie, Yes ... everything you said! I'm in the process of polishing my nails/claws to start digging into that pathway. With new insurance, new diagnosis, new year, old friends, I'm going to march forward, one foot slide at a time! Maybe I'll be showing off some new tricks at an upcoming flatback retreat! G ---- Bonnie Stone <bonnie@...> wrote: > Hi , > > Well, I never thought I'd say " Great news! " to someone who just got a > diagnosis, but this sounds like very good news for you. At least now > you have a reason for all your pain and a pathway for getting rid of > that pain. What a joy that will be! Good luck to you on your search > for just the right doc, or team of docs, to handle this for you. > > Bonnie Quote Link to comment Share on other sites More sharing options...
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