HopeSprings Posted March 21, 2014 Report Share Posted March 21, 2014 Kim, we have the same neck! Mine is also long and I just measured it -out of sheer curiosity- and mine is 11 1/2 inches too. Have you tried looking into it yourself as far as possibly causing any of your non-neck related symptoms? Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 21, 2014 Author Report Share Posted March 21, 2014 Hi ladies! Thanks for all the kind words. I can't talk too much just now as I have a raging migraine. Will keep you updated. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 22, 2014 Report Share Posted March 22, 2014 No, not yet Naomi, but there is always another doctor to go to, and unfortunately, I just postponed one with my Neurologist, due to a bathroom remodel!! I think it's funny we have the same size neck. I have sleep apnea, which is almost unheard of with my size neck...lol. I misquoted, but it is the average size woman's neck size with sleep apnea. Right now I'm having trouble breathing, so I think that is the next thing on my agenda. That's kind of important. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 23, 2014 Report Share Posted March 23, 2014 Katy, I have issues around my C3-C5. My report was not very detailed from the radiologist, but the neuro that looked at it said I have spinal stenosis.Anyway, I was wondering if you ever have muscle issues around your shoulder/chest area that could be related? My new thing in this past year is I get shoulder and/or rib muscles that seem to just clench down for days. Besides being painful, it seems to make my chest tight and makes breathing slightly labored at times. That is the thing I don't like. I can handle the pain, just don't like the chest tightness. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 24, 2014 Author Report Share Posted March 24, 2014 Sue,I don't get any pain but I can say that Dr. H repeatedly asked me if I had any pain in my shoulders and shoulder blade area. I got the impression he was surprised I said no every time he asked. So, I think it must be common to have pain in those areas. I have to be honest, I have so much chronic pain and inflammation all over my body, that I sometimes don't feel certain pain until it's gone and then I'm like wow....I didn't realize that hurt! I don't know if that makes sense but I would imagine if anyone understands that, my friends here do. When I was still working, I did get lots of neck and coat hanger pain. I have just been assuming I don't have it anymore because I am not upright for 16 hours a day anymore so the rest and lack of constant pressure allowed my body to heal. That pain was definitely muscular in nature and my old chiropractor said it was from the loss of my cervical curve making my muscles work so much harder to hold my head up and that's exactly what it felt like. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 24, 2014 Report Share Posted March 24, 2014 Thanks. I think it is time to ask my old neuro about it. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 24, 2014 Author Report Share Posted March 24, 2014 Just a quick thought...when I told Dr. H that I wanted to get a second opinion from my regular neuro he said that's fine but that most neuros aren't trained in the same way that neurosurgeons are in reading the imaging and understanding the effects it would be having so he wanted me to see another neurosurgeon as well. I'm not sure what the difference in training is other than the surgical skills but you may want to consult a neurosurgeon as well. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 24, 2014 Report Share Posted March 24, 2014 Thanks. Do neurosurgeons take appointments from patients that have questions like this? Do they do things like have you do an updated MRI so they can figure this out? My insurance does not need me to have a referral, but didn't know if neurosurgeons require a referral themselves. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 24, 2014 Author Report Share Posted March 24, 2014 I'm sure that varies by doctor. Dr. H's office didn't ask me for a piece of paper saying Dr. Francomano referred me but I did send her notes with my new patient paperwork which said she wanted me to see him. So I don't know if that was sufficient or if he doesn't require the referral. But again, I think it's going to vary by doctor. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 2, 2014 Author Report Share Posted April 2, 2014 So, neurosurgeon #2 agreed fully with the assessment of neurosurgeon#1. My immunologist is having a fit that I'm considering the surgery at all because he is afraid my body isn't up to it. My neurologic symptoms are getting worse. I'm pretty sure I'm going to go for the surgery. I'm going to talk to my POTS neuro first. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 2, 2014 Report Share Posted April 2, 2014 Well, it sounds like you have a plan! I hope this is part of solving your health problems...possibly even POTS(fingers crossed!). Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 2, 2014 Report Share Posted April 2, 2014 Just curious Katie if your immunologist is thinking that any of your neuro symptoms could be from CNS issues caused by inflammation due to the Lyme or other infectious or autoimmune issues rather than coming from your neck? Is that why he's concerned? Or does he think your body is just too stressed now to undergo such major surgery? Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 2, 2014 Author Report Share Posted April 2, 2014 Ugh.... just had a long response typed up and lost it. Thanks for the responses. The immunologist says my body is "too mushy" which he explained to mean that with as many diagnoses as I have, that usually means that none of the docs really know what is wrong with me. Yes, he does suspect that what I really have (in general) is an unidentified autoimmune disease. That is supported by how much I improve on steroids but I can't stay on the roids for any length of time because I react badly to them. So yes, we both actually believe that a large part of my issues are caused by systemic inflammation. But the flip side is there is no question that my neck is really jacked up. It's really obvious when you look at my imaging. The immunologist wants a guarantee that certain things will get better and he knows (because he admitted himself) that that isn't possible. There are certain symptoms I have that have a 90% or better chance of improving because they are generally associated with neck issues such as I have. There are others like any autonomic dysfunction that may improve but the odds are a little less obscure. The neurosurgeon yesterday said one of the reasons the statistics on improvement in those symptoms don't exist is because our issues are rare so no one doing these surgeries has collected and analyzed the data. (Same old story for us there.) My immunologist means well, I know that, but I offered for him to view the images (because the radiologist's report is simply inaccurate) but he wouldn't look at the imaging. I generally value his opinion a great deal but if he won't even review the imaging I feel like he doesn't get a vote. He is generalizing and we've gotten to a point where generalizations aren't going to help. Plus, on another note I have 2 major concerns about not having surgery and those are my increased risk of damage due to the instability in that area and secondly the permanent nerve damage that could be done by continued chronic trauma being caused by the bulging discs and subluxed vertebrae. Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 3, 2014 Report Share Posted April 3, 2014 Wow Katy! I wish you the best in whatever you decide to do. This all sounds very promising but sounds like it might cause some problems in the long run. Keep us posted and wish you the best if you decide to do the procedure. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 3, 2014 Author Report Share Posted April 3, 2014 Thanks, Rachel! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 4, 2014 Report Share Posted April 4, 2014 Good luck, Katie. I'm worried for you, but I know you're smart and do your research and wouldn't enter into something like this lightly. Please keep us posted and I hope for the best possible outcome for you. Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 21, 2014 Author Report Share Posted April 21, 2014 I have scheduled surgery for June 10. I saw my POTS/migraine neuro late last week and he is surprisingly on board with the surgery. He tends to be on the conservative side when it comes to surgery but feels I need and may benefit from it. He stressed that he hopes that the migraines will improve (I had 19 days of migraine in March with meds and we haven't even gotten into hot weather when these tend to be worst for me). He also agress that the stabilization in general is important and that some of my more minor neuro symptoms may improve. I finally remebered to ask what the docs have been seeing in my reflexes that has them worried. He said that my reflexes are normal when they respond but that it has been getting progressively harder to elicit a response. He also stressed that I should not hold my hopes too high for my POTS getting better as studies show that similar surgeries don't improve POTS significantly. He did agree that it may help us sort out what part of my symptoms are part of the migraine syndrome vs. POTS. Then we may be able to reevaluate our treatment to be more effective. So tomorrow I have to tell my immunologist that I'm going for it. (I feel like I'm 16 telling my dad I'm pregnant! I guess that means I respect him. He'll have to get over it!) Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted April 21, 2014 Report Share Posted April 21, 2014 Oh Katie, I really do hope this will provide some relief. Please remind us again a little before the surgery so we can cheer you on. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted April 22, 2014 Report Share Posted April 22, 2014 That's good that you are moving forward with it. Yes, do remind us when it is time! Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 22, 2014 Author Report Share Posted April 22, 2014 Thanks, ladies! I need as large of a cheering section as possible. Quote Link to comment Share on other sites More sharing options...
corina Posted April 22, 2014 Report Share Posted April 22, 2014 Count me in Katie, I'm cheering for you from The Netherlands! Would like a reminder too though as I'm sure I can't keep on cheering for 8 weeks Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 22, 2014 Author Report Share Posted April 22, 2014 Hahaha! Thanks, Corina! Yes, we'd all need oxygen masks if we tried to cheer for 8 weeks! Quote Link to comment Share on other sites More sharing options...
bellgirl Posted April 22, 2014 Report Share Posted April 22, 2014 Prayers for you on the 10th of June!! I think you are making the right decision. Go Katybug!! Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 23, 2014 Author Report Share Posted April 23, 2014 Thanks, bellgirl! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted April 23, 2014 Report Share Posted April 23, 2014 I will be praying for you on June 10th as well Katybug ! Janet Quote Link to comment Share on other sites More sharing options...
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