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    Old 03-13-2008, 07:51 PM   #1
    Wymom94
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    back-to-back surgeries scheduled -please chime in

    Hi, once again I'd love to hear from the experience everyone here has and am completely open to advice, opinions, shared experiences, thoughts, criticisms, etc. I went in with my husband today to see the neurosurgeon I decided to stick w/ (the 3rd of the 3 I've consulted w/ --saw him last week alone). He went over everything again, named the surgeries (ya'll were right, it's an ACDF for the neck, decompression laminectomy for the lower), and spent a looong time w/ us. He had the ACDF himself last year performed by a colleague, with the same procedure details he's set forth for me, something that meant a lot to me to know, actually. He reiterated for my husband that he feels surgery for my neck is actually critical and shouldn't wait even until June (said, it's not so urgent that it's like I need it tomorrow, but it shouldn't wait 'til June or July, needs to be done soon). He said my compression on the spinal cord is extremely severe and doesn't want to risk further damage, was pleased my symptoms aren't as bad as they could be and would like to avoid even worse symptoms beginning (which, he feels, is precisely what would happen and not before long at all, hence the urgency). He said that, eventually, I'm even at a real risk for paralysis from the neck down based on how severe the stenosis compression already is (didn't offer that up 'til we pressed for the outlook w/o surgery or w/ a lesser alternative). He said that wasn't imminent, didn't want to scare me, but that it was where things seem to be headed down the road (w/o the surgery or w/ less invasive procedure options). We discussed timing w/ him further b/c my husband may need GI surgery (minor, not major, but still involving recovery time) soon and our son is due in April from some medical tests (minor) and 'tracking' appts and then in June for medical procedures and more tracking appts. Not waiting 'til July for my surgery is a, well a 'bother' for us. He understood, felt bad for the timing, but said he wouldn't feel confident letting me go 'til then. He mentioned that it's not unheard of, but is not at all common for someone my age to have such a severe problem already (w/o injury) -even with a congenitally small spinal cord and was concerned that I have such damage already. He said his personal stats with performing this surgery are close to 90% (success), but wanted to be clear that success did not mean a return to full function or zero complications --it meant a halt to progression, likely return of at least some functions lost if not many, and possibility of minor complications (most likely being difficulty swallowing for some time post-surgery --more rarely permanently). He said he rarely has serious or permanent complications, but they do occur and that he rarely has no improvement in function post-op, but that, too, is a small possibility. And, he did go over the rare, scary complications (yipes to those, btw). He felt my age was on my side for optimal recovery and my health (immune system, too) were not a 'ding' for my recovery either. He is having several tests done pre-op to further 'clear' me and make sure things are a 'go'. He had me do 1 more between last week's and this appt, actually -to further illuminate which type of surgery or treatment would be best (checking his work twice, so to speak, before handing it in). He feels the lower surgery is not at all urgent in terms of risk, like the upper is, but understands that I am quite sick of not being able to stand and walk well and since it is a compression (of the nerves) that would require surgery for optimal outcome (again, according to him, lesser alternatives not being the best for my situation) he thought I might want to get all my recovering done in one full swoop by putting the surgeries 6 weeks apart rather than several months or a year apart (did feel I should have the lower surgery within a year if I elected not to go back-to-back). We discussed a LOT more, but it boils down to my husband and I having scheduled the back-to-back surgeries. Although, I don't yet have verification of the stats he shared (I'm going to get this, though), I HAVE checked this neurosurgeon out (more than I did the other 2 I consulted with) and feel confidence in his skill, ability, and even his 'agenda'. (Confidence in his skill doesn't necessarily equate to ease w/ the idea of surgery, though). I feel pressured to get as fixed as I can be as quickly as I can b/c of my son (and manging his health issues) and wonder if I'm moving too fast. On the other hand, I can't stand the changes that I keep having to make, some over the course of 2-3 yrs, others being more sudden (what seems like 'sudden' to me, anyway) -and I'm afraid I've moved too slow w/ this. I read the 'before you have fusion surgery' thread and it left me as 'split' in feeling as I just mentioned. Half freaked, half calmed (the one post, neckpatient I think it was, about how fusion surgery is necessary for severe stenosis calmed me, the laser success story made me worry I'm making the wrong choice). The Dr being so deeply concerned w/ the urgency of my neck, was not calming (in the least). The other Dr who read my cervical MRI was willing to wait 'til summer, but I didn't feel the confidence in his skill, ability, etc that I do with this neuro and, in fact I spent more time w/ his PA than w/ him. The Dr I've picked and the first one I saw both spent time w/ me directly and did not use a PA for most of the consult like the 2nd one did. That first Dr I saw only read my lumbar MRI, though (hadn't had the cervical yet --it was his recommendation that I do after having talked to me). Hmm, maybe I should check in w/ that one again and get his opinion on the cervical and how urgent he feels it is?? When do you "Know" you've got the right situation (pre-op --obviously, you'd know post-op if it turned out beautifully)? And, anything anyone wants to comment on, question, add, share, advise, etc, PLEASE do.
    I'm scheduled in latter May for the lumbar, in 4 weeks for the ACDF --and the surgeon does want to use cadaver bone even though we'd discussed a bone graft to help keep my suitability for being a living liver donor for my son (years from now --he's early stage liver disease right now at 13, not progressing rapidly at all). Dr feels I have a better chance of success with the cadaver due to a 30% risk of infection and other problems w/ the hip graft. He understands and agrees w/ my parental priority, but said he wants me to have the best chance for success and, after reviewing, did not feel that would include a bone graft. I contacted my son's pediatric Hepatology team at UCSF and discussed this w/ them in email (the senior member of his Hep team is also the pediatric liver transplant program head --and knows the adult protocol, too, of course). They also want me to do what would give me the best success and said we'll go from there. I think I'm comletely ditching the Cleveland Clinic idea (for myself, still going for my son --but not so soon now).
    Sorry for the length of this post. I have everything swimming in my head and am going in hyper mode w/ it all. Hyper Meghan can be a scary thing.
    Thanks for lending an ear,
    Meghan

     
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    Old 03-14-2008, 12:10 AM   #2
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    Re: back-to-back surgeries scheduled -please chime in

    My first thought is to tell you to take a long, deep breath! We all know this is very stressing and it sounds like you also have just a lot on your plate in the health department in your family. I hope you read this, my reply will be long.

    There are minimally invasive surgeries and I know there are people out there advocating them - they are a good choice for some conditions and should never be discounted. What troubles me is when people write posts advocating a specific type of procedure (or even doctor) and also use information they assume from reading posts on these boards saying a different procedure is bad. In my opinion the only fact we should really trust is scientific data. All problems are not equal, and each of us has our own anatomy, genetics, and spinal issues. When these posts occur it scares patients that really need a surgery, and stalls them from making a very important decision for themselves. Minimally invasive surgical patients are very carefully selected - so when you look at the data and compare to conventional surgeries and you look at the data comparing the same specific diagnosis - I believe the data is very closely the same. Therefore, it is good to discuss the alternatives with your doctor and get their opinion. (which you did and your doctor explained to you why you are not a good candidate - so that should be enough for you to move on) in my opinion.

    The other item is if you have been reading old posts and get scared by patient experiences, that is also normal. Remember these type surgeries are done across the world (probably in millions each year) and what we are seeing on these boards maybe at most a couple hundred people over the last 3 years - and not all have issues - and then there are others that have multiple health issues. I would also dare to say that my guess is over 50% of the posters do not understand what is going on with them, what is wrong, what got fixed, and why they feel the way they do - that is how they make their way here. Again, I always try to put stuff in context and remind myself that this is just a place to share and not to put too much stock in it over what medical opinions are telling me. It is a way to learn, vent, share, and figure out what questions to ask.

    If it were me I would also eliminate the Cleveland Clinic - since I believe that you live in CA and very good doctors are accessible to you there. Kind of like remove the unnecessary stress and expense.

    My first choice is to protect my spinal cord - it runs my body and I can't operate without it. If a doctor has a medical opinion that says my spinal cord is at risk (and takes the time to explain with fact why she formed that opinion) I am going to believe her and I am going to get multiple opinions (which you did) and then I am going to act in a reasonable amount of time that was recommended to me. I am also glad to read that you heard it when you doctor told you that you might not have 100% resolution of your issues, but that this surgery is to halt the progression of your current problems. Remembering that you may develop new problems in the future because our bodies are constantly changing/aging. Many people do not hear this part of the discussion because they are in shock or the doctor doesn't take the time to have a thorough discussion.

    I know you will find the right decision for you - try not to allow yourself to get freaked out or distracted from doing what you need to do.

     
    Old 03-14-2008, 12:20 PM   #3
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    Re: back-to-back surgeries scheduled -please chime in

    I agree with neckpatient. You won't be any help to your son, or your husband, if you wait on this neck surgery. I can tell you I found the ACDF much easier to recover from than the lower back fusion. For the lower back they go in via the back (posterior) so they do go through muscle which can make it a bit tougher of a recovery.

    Consider tentatively scheduling the second surgery, for the back, at the interval the doctor suggets. But if after the ACDF you find you aren't ready or family problems are pressing, then you can move the date of that surgery.

    It sounds like this doctor is being very straightforward.....so I agree that the ACDF surgery appears to be a relatively urgent issue.
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    Old 03-15-2008, 07:53 PM   #4
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    Re: back-to-back surgeries scheduled -please chime in

    Hi, I can't thank the two of you enough for posting in response. It really helps, really 'boosts' to read the support and advice in your posts (the voices of reason --'seasoned' reason from those who've been through it first and are helping the newbies along... not 'seasoned' as in older).
    I've been further checking into my neurosurgeon and I am feeling even more confident in him. He's "known" for pursuing conservative treatments and less-invasive procedures as long as possible, avoiding surgery until absolutely necessary. That's his reputation and it says a lot, given what he went over so explicitly with me, then with my husband and I together. I already 'felt' that he was straight with me, had no personal agenda, etc, and was telling me what I truly needed, but to find out that it's not just a feeling I have.. that feels pretty good.
    I am hoping, of course, that I do regain all or most mobility and function, that I turn out to be a 'super success', but I know it may not happen that way even with a truly successful surgery(ies). I've also been questioning the back-to-back (I've retained my sense of humor even when anxious) surgeries, although the 2nd is largely for 'me' (to get back some mobility, lessen some pain). The 1st surgery is b/c of how urgent it is in the surgeon's eyes. My husband and I have further discussed it and we're going to keep the date, but wait and see how my recovery goes with the 1st and also how our son and my husband fare as their health issues move along in that 1st surgery time frame. Lol, also Indiana Jones 4 comes out the day of my 2nd surgery, so my husband thought it would be nice to at least bump it a few days for that (he keeps his sense of humor, too --part of the mutual attraction). How much help we can line up, will also be a factor.
    I'm coming to terms with the 'hit' this all is, to being my son's liver donor. It felt incredible to have that 'fallback' in place. We moved from being devastated with the news of our son's liver disease to, not exactly 'relaxed', but close to that. His progression turning out to be slow plus the fact that I could give him part of my liver so he could avoid the donor list (and that wait, while suffering, for a possible match --someday) was a genuine release of anxiety --of most anxiety anyway. That helped all of us. We still have the slow progression to hold onto, but it's not the same as having both and we have to just hope he continues to progress slowly and doesn't change pattern.
    I'm still very nervous and still question myself, but I feel better and am trying to focus on the facts --and on what I CAN control, including my mindset. I've even been practicing relaxed breathing and sort of 'pauses' or almost meditative breaks to center myself (and my thoughts). I think I'll use the breathing and 'pauses' in recovery, too. I'm trying to find the 'mellow Meghan' within. (Or drag her out, if that's what it takes)
    Thank you both again!
    Meghan

     
    Old 03-17-2008, 09:47 PM   #5
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    Re: back-to-back surgeries scheduled -please chime in

    Meghan and Neckpatient-

    I made the post "BEFORE YOU HAVE FUSION SURGERY", and based on neckpatient's comments I RESPECTFULLY feel compelled to respond.

    I have been coming to this site for nearly two years now. It was of considerable help to me as I agonized over what medical option was best for me with respect to not only my specific medical condition, but my lifestyle, age, insurance, logistics, etc. I found this site to be a source of invaluable information, and I feel certain that neckpatient made posts to my queries that were most helpful during my ordeal.

    That being said, I have tried with every response or post that I've ever made to point out that EVERY SITUATION IS DIFFERENT, and that EVERY DIAGNOSIS IS DIFFERENT. That the minimally invasive option is not the best option for everyone. And I have also attempted to point out that- from what I've heard and researched- for a lot of people, fusion is the best thing they've ever done. It has never been my intent to state that fusion is "BAD".

    I have also tried to make it clear that I have no ties whatsoever to the doctor or to the facility that I've discussed in my posts. Other than the fact that in my case, the procedure the doctor performed, after 18 months and counting, seems to have worked.

    Further, it has never been my intent to "SCARE" people. What do I stand to gain from that?? I have no hidden agenda.

    All I have ever tried to do is point out to people that there are other options available besides fusion. I truly don't think a lot of people know that. I myself consulted with SIX other neurosurgeons who ALL told me fusion was my ONLY OPTION. As it stands so far- knock on my NECK!- they were incorrect.

    I realize that some people, given their condition, don't have the time to explore every option. WHAT TROUBLES ME is that a lot of people are rushed into having procedures that might not have been necessary, or that might possibly FAIL. And in those cases, at least as I understand fusion, they've now eliminated any other options with respect to the disc level(s) where the procedure was performed.

    So I do feel it's important for myself and others to be a voice on this board that lets people know that there are other options out there that MIGHT help their situation, who might not otherwise have been made aware of such.

    If it weren't for an old post that I found in the archives, I would have never learned that minimally invasive options existed, and I would have had a two level fusion. And maybe I'd be on here saying it was the best thing I ever did.

    Or, maybe I'd be on here continuing to look for advice after the procedure didn't go as intended. Who knows.

    Again, said most RESPECTFULLY, as I believe it to be for neckpatient and countless others that post their opinions on this board, my only goal is to help people find relief from their pain in the best, most informative way they can, given their specific condition and needs.

    If it is the consensus of this board that I am doing people a disservice, then I will no longer make posts on this site.

    As always, I wish Meghan, and anyone else who reads this post the best...

    BW

    Last edited by bw67; 03-17-2008 at 09:55 PM.

     
    Old 03-18-2008, 04:14 AM   #6
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    Re: back-to-back surgeries scheduled -please chime in

    Oh my gosh BW! I didn't mean to offend you, it appears I did - please accept my apology.

    You are an asset to the board and of course I would hope for me and others that you keep posting. The best thing about boards is to have various opinions and ideas. We (users) don't have to agree on everything and my post was not a personal attack towards you.

    What I expressed was an opinion. I actually enjoyed your other post where you described the procedure you had. 18 months ago when you started down your path there weren't as many doctors doing the minimally invasive surgeries because of the equipment needs. However, ACD was not new. ACD has been done for a while and they just found a way to advance the surgery via micro surgeries. Now, almost two years later MI are being done pretty widespread across the country. I am very happy for you and your wonderful outcome.

    If we are going to talk about that other post, the only thing that caught my attention was the statement made by you "But after 18 months I continue to come on this board now and again, and it is soooo frustrating to read post after post of people in pain, and people who have had multiple fusions and STILL have trouble." Placed in the middle of everything else you wrote the inference was made (even unintentionally) that with your procedure you are pain free and everyone else that had acdf isn't. So maybe you can understand my general response from the reader prespective.

    When Meghan described the issues she has in her earlier multiple threads and that she has severe cord compression with edema/myelomalacia- I was trying to help her focus on that. She has serious problems at many levels in her spine and she was spinning at first. She also has access to excellent doctors and latest procedures in her area and sought multiple opinions. Your thread just happened to post about the same time and she did start to question minimally invasive which is good - but her issues are nothing like yours and that is what I was trying to say to her in a way she could relate to.

    I hope we can put this to rest. I understand what you wrote back here and will use this experience in the future. I hope that you do continue to post your progress and that we can enjoy a chat here and there when you do come back. Wishing all of us pain free tomorrow.

     
    Old 03-18-2008, 04:46 PM   #7
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    Re: back-to-back surgeries scheduled -please chime in

    <<Meghan and Neckpatient-

    OH, BW, I hope I didn't come off as disrespectful or offensive toward you when I posted. If I did, it wasn't at ALL intentional and is not something I would have done if I'd realized it was coming off that way. I have been known to get a mouthful of my own foot at times, but I did NOT mean to stick it there -honest. I think I wrote about reading the thread and laser success post as making me question or worry about my own decision --it was not meant at all as a knock against your decision... your's was a huge success, after all. I was just doubting myself after reading about it --and other posts on the thread, too. I felt very 'split' between worry and calm. I think it was actually that thread (maybe another) that I came across the name of Dr. Shiffer in SF --and contacted his office to look into less-invasive options after I checked him out further. That was before I knew how thorough my local neurosurgeon is himself with less-invasive procedures, but I'm still glad I contacted the SF office. I admit that I'm now afraid of waiting to truly look further into options now, after talking to my neuro (and Shiffer's assistant, too, actually). They both referred to my compression as complex and complicated and both talked about paralysis from the type of compression (and the edema/myelo...). That just freaks me out (but I'm going off track now).
    I am genuinely sorry if I worded something awkwardly or came off as negative toward you, your success, or the thread. I'm just scared (not by YOU, just in general about the whole thing --and every option actually --and making the wrong choices) and I'm, admittedly, abnormally tense of late and probably let that muddle my words when posting (fumbled the ball). I was definitely not trying to be negative. Please don't think you've done a disservice or are thought of negatively --I DID get positive help from your thread; I got that heads up about Shiffer's just 2hrs from me --and that was a help, did get me more information. Also, even though I'm not likely to end up w/ the same procedure you had (but would LOVE to), it is good to read such a wonderful success story.., just took me a bit to separate the hopeful, but self-doubting 'could it be me, too' from it as I looked further into my 'complicated' neck. (I would have never survived as a giraffe).
    I hope to read more from you on the board in the future. Enjoy every day and crank up every song on the radio that you love, then bop your head like crazy to it --b/c you CAN now! )
    Meghan (penitant Meghan)

     
    Old 03-20-2008, 07:31 AM   #8
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    Re: back-to-back surgeries scheduled -please chime in

    Meghan-

    I was referring to neckpatient's comments regarding my post, my reaction had nothing to do with anything you posted.

    Neckpatient, no offense taken, I just wanted to clarify my position.

    Again, I never meant to infer that my way was the best or only way to go, or imply that no one finds relief from conventional fusions. As I've tried to always say, I know that there are A LOT of people who swear the standard ACDF is the best thing they ever did.

    I just try to pop on here now and again and let people know that there ARE other options out there. This may sound quirky to some, but my own personality is such that even when I buy a tv, I like to know ALL THERE IS TO KNOW about the product and my options, throw the info in the pot and make as educated a decision as I can. When it came to my body and the long term effects of the choice I was about to make, I was even more thorough...

    I spoke at length with Dr. Schiffer during my journey, and decided that since they didn't take my insurance he wasn't the right fit for me. At the time I was doing my research, his procedure was also a little different than the other minimally invasive options I had come across. At least for me, he was suggesting actually REMOVING the problem discs altogether and allowing scar tissue to create makeshift discs, and/or allowing the vertabrae to fuse together naturally. I didn't like the idea of removing ANYTHING if I didn't have to.

    Continued best wishes

    BW

    Last edited by bw67; 03-20-2008 at 07:32 AM.

     
    Old 04-04-2008, 09:17 AM   #9
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    Re: back-to-back surgeries scheduled -please chime in

    Hi BW, I only just found your response post today (was "checking myself out", lol --clicked on my screen name to see my old postings-- and there you were). I checked that thread during the day after I posted to see if you'd 'read by', but clearly did not check after that or I'd have found you. I am very glad to read that you were not offended by either of our posts. I didn't get any false messages from your OP on the other thread and did understand that you were sharing about your own experience as a "possible" option for others, btw. You were 'straight up' in your OP.
    I can understand completely your thoughts on Shiffer. I felt that Dr. Shiffer's options were so close to the surgery I was already scheduled for that it wasn't even worth the difference to pursue. I never spoke to him directly, though, just his assistant. Also, if I were going to have a disc even partially removed and/or expect fusion, I wasn't keen on their way of letting nature take its course. My understanding was that they only remove the portion of disc poking out and leave in the bit that's still clinging --their site said it was usually a significant little chunk.. but it still seemed 'iffy' to me w/o any support added in. For me, with the compression or flattening pinching off my entire spinal cord and the area with "softening" in my spine, well certain options Dr. Shiffer's assistant shared just didn't instill confidence in me w/ those on my mind. Their one option that had no removal or fusion -- right on their site, the criteria, I didn't meet it, but the assistant still went over it all with me (and I really don't know why). It wasn't for someone w/ severe stenosis and that's me. And, actually, I didn't meet criteria on another, too. But, I did get a more detailed understanding of parts of my MRI from Shiffer's assistant and was grateful for that.
    I, too, would love to avoid removing a disc and making it permanently stiff, but I am too worried about waiting to try to find an option for my situation that might not even be there for me. It's been an unhappy place to be. If it weren't for the clamped on cord and that weird 'softening', I would feel comfortable taking the time to look into other options or just having my neurosurgeon do a different surgery or procedure. I'm glad, though, that there are other options available for the people who meet the criteria. I can only imagine how good it must feel to find an ideal alternative that fits you perfectly. I'd love it!
    Where I am, I'm finding confidence in the ACDF that's coming up (in 8 days) for me (but will always have some anxiety, too, of course). It's carried a lot of significance w/ me that my neurosurgeon had the ACDF himself last year, that he didn't wait to pursue an alternative option for himself. He doesn't have my exact situation, but he said his neck was in a similarly critical state, and alternatives weren't for him. He's known for minimally invasive options and alternatives and not jumping the gun to surgery, but it's what he went for on his own neck when it was in that 'similar' state as mine --that just spoke volumes to me. I had my pre-op yesterday and my neuro went over post-op from his patient pov w/ me, too --which was nice. He didn't have a perfect surgery, had some complications and even still has some problems w/ swallowing, but he's still a 'top of his field' spinal surgeon, bass guitarist in a rock band, and avid surfer. He told me that he had the surgery because he didn't want to jeopardize all the things he loves to do, including his livlihood, and that he didn't feel a better alternative was out there for him that could ensure the results he's seen in practice and research. He even scheduled his surgery date around a surfing event, expecting that he'd be recovered enough and back to his former self in time for the event. He expected it to fix him up the way he wanted and needed to be --that sent my confidence up so much to hear. (He made the event, too). He did share with me that he was still very anxious pre-op and did turn over (and over and over) all the possible complications in his mind (catastrophic ones, too), but that, for his problems (and mine, he said), his faith was in that surgery. I have to tell you that I feel I'm in some dern good hands. I have a weird balance right now of confidence and anxiety. An unusual place to be.
    And, I don't think your quirky for wanting to know all about your options, esp on your spinal cord. I'm that way, too. It does sting a bit when there's a great option that doesn't fit me, but it doesn't sting to know it's availabe for others --that's a great thing!
    --Meghan (8 days to "Bride of Frankenstein" day.. the day I get screws in my neck... and 9 days 'til my 39th birthday)

     
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