Yolaclover Posted June 18, 2011 Report Share Posted June 18, 2011 I think i'm going to need some support when i find out. Neuro, awesome neuro, is trying to rule out a few things, one of which is a chiari. I will let you know when I know. Is it cray that part of me wants there to be something? Something operable cause that will mean all of this will be over? I know it's crazy!I read chiari stuff and the surgery seems pretty scary and not really an established thing, not a sure thing at all. I know! I haven't even been diagnosed yet and I am already freaking out! I can't help it! this is why people with a tendency to have anxiety must never get health problems! lol. My symptoms have been extremely uncomfortable, head pressure, head pain, neck pain, lightheadedness, weakness, pain when i smile or sing. However, I am still living my life, still working, still spending days at park with kids, riding the carousel, still trying to act normal even though inside I often feel so, so bad!!! I can't believe it's been a year and a half. I want my kids to have the old me back, the one that left them when they were 4 and 2, I want my husband to have the old me back, he misses me, i can tell, I miss me too.xoxoxoxo Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 18, 2011 Report Share Posted June 18, 2011 "Is it crazy that part of me wants there to be something? Something operable cause that will mean all of this will be over? I know it's crazy!"If you're crazy, then so am I because I keep wanting them to find something too! A non life threatening tumor that causes all the symptoms and can be easily removed, with no bad after effects would be GREAT! What's an MRV? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 18, 2011 Author Report Share Posted June 18, 2011 An MRV is a MAGNETIC RESONANCE VENOGRAPHY , I think it looks at veins, I had my studies done with and without contrast. I'm so glad to know I'm not only one hoping for "something" to show up. I mean something fixable!!! Or somewhat fixable, some explanation for me be healthy for 37 years then suddenly unhealthy. Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted June 18, 2011 Report Share Posted June 18, 2011 I just recvd. the results of mine ;o) As my Wonderful Cardiologist explained to me, Apparently there are 2 branches consisting of 2 major vessels that go into our brain, one for the left side, one for the right side. One of my branches, on the Left side is only working at 10-20%. I was provided a copy of the scans and after he told me what the problem is, I can see it on the scans. The Doctor explained that I have probably had this my whole life, but because I am getting older (39 ) Your spine doesn't work as well as it used to and compresses those vessels. Hence, not enough blood flow to the brain and all of the other problems result. He also said that if there is something else going on in my body that we haven't ruled out yet...it would put my already taxing vessels into more of a strain so he wants me to rule out MCAD, mastocytosis and immunoglobulin deficiency too.It is operable but very difficult with ALOT of Risk so he suggested neck excercises and being very cognizant of my movements as this is what is most likely causing me to pass out. Unless it gets unbearable he recommends leaving it alone for now. I too just wanted an answer and now that I have a little bit of one I am just going to try to live the best I can ;o) And stay upright, if possible. Oh and I might add, this is a test my Neurologist refused to give me...saying "There is no way it is a problem there." Needless to say she is no longer my Doctor. Hope you find the answers you are looking for too 718MOM!!! Take care and keep posting...we are here ;o) Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 18, 2011 Report Share Posted June 18, 2011 Rockiesgirl or Clover -- is an MRV different than an MRA? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 18, 2011 Author Report Share Posted June 18, 2011 RockiesGirl, I'm not sure! I had an MRA and my neuro seemed to imply the MRV was different even though the ins coding is the same Rockiesgirl, Iwas wondering about how you can live with that diagnosis? Is that what is causing your dysautonomia? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 18, 2011 Report Share Posted June 18, 2011 "One of my branches, on the Left side is only working at 10-20%."Rockiesgirl - I'm sorry, I didn't fully absorb what you wrote the first time I read it. I signed off, started thinking about it and went WHAT?? Did your Dr. say what would cause this blood vessel to work at only 10-20%? I mean is it narrowed or what explains this? What symptoms do you think it causes? You mentioned staying upright - are you worse when you lay down? How frustrating that nothing can be done about it. Although you sound pretty upbeat. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 19, 2011 Author Report Share Posted June 19, 2011 Results are back and radiology says normal, my neuro will review the films.......ButNormal? How can I be having all of these pressure headaches and pins and needles and be normal? Feeling like I'm going to pass out, weakness, fatigue, bad pain in head just from smiling! I'm thrilled not to have chiari, or a tumor, or whatever, but I don't feel normal. Not sure what to say to her now, i feel embarrassed, sad, disappointed and just...back to square one! A year and a half and what do I have?celiac? Could celiac be doing this?Grrr!!!!Ok, vent over! Quote Link to comment Share on other sites More sharing options...
enko Posted June 19, 2011 Report Share Posted June 19, 2011 718mom,I know how do you feel - like that you're always back to square one! I have MRI scheduled for 3 months, and I can bet that everything will be "normal" and I don't feel like that.. I've been reading up a bit, it seems that most of people with dysautonomia have normal MRI results.. weird, isn't it? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 19, 2011 Author Report Share Posted June 19, 2011 Thank you enko, yes, totally, and as I sit here every time I turn my head I feel lightheaded! It's not right, how can this be? Quote Link to comment Share on other sites More sharing options...
enko Posted June 19, 2011 Report Share Posted June 19, 2011 I'm sorry 'cause you're feeling like that I just wish that one day there will be someone who will understand us and know how to help Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 19, 2011 Report Share Posted June 19, 2011 "as I sit here every time I turn my head I feel lightheaded! It's not right, how can this be?" Did they look at the arteries in your neck? If turning your head makes things worse... makes me wonder. The neuro who diagnosed me with POTS sent me for an ultrasound of carotid artery. (it was normal, but a good idea anyway.) If position changes your dizziness, the other thought is maybe see an ENT? Please don't feel embarrassed - you're just trying to get to the bottom of this and you are taking the appropriate steps. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 20, 2011 Author Report Share Posted June 20, 2011 I totally had an U/S of my carotid artery!!! Another huge issue is whenever I sit at my computer I get very, very lightheaded. I sound like a broken record with my health complaints, even I am tired of it. I just feel like the Dr.s must be missing something, I really do. There has to be more to this. Quote Link to comment Share on other sites More sharing options...
enko Posted June 20, 2011 Report Share Posted June 20, 2011 I sound like a broken record with my health complaints, even I am tired of it. I just feel like the Drs must be missing something, I really do. There has to be more to this.Me too And you know that look when you're telling them something and how bad you feel about it, and they have "THAT" look..? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 21, 2011 Author Report Share Posted June 21, 2011 YES!!!! lol. I just watched the documentary "Under Our Skin" about Lyme Disease. It was totally amazing, everyone should be tested for lyme when they present symptoms like ours. The film had many, many patients who were told they were crazy or it was "all in their heads". I cried so hard watching that part. I strongly rec. this film, i saw it on netflix livestream.The good news is I felt pretty good today!! So happy. If only I could do that every day, right?xo Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 21, 2011 Report Share Posted June 21, 2011 I think the issue really is: They do an MRI of the vessels in a lying down position. Most of us have symptoms upright, whether sitting or standing.I found out I have cervical stenosis last year. My neuro just said to make sure I had a headrest behind my head in my vehicle(which I do). And that was that! A couple of non-neuro doctors(2 different ENTs) both said, "and the neurologist didn't think the cervical stenosis was causing your POTS symptoms?". They both had a look on their face like *Wow, how stupid was her neuro!*. But, they didn't go as far as saying that I should get another opinion. I just know the look they had on their face.BTW, for probably 15 years, I've had a problem when I turn my head to look behind me. For instance, driving and turning to look in the back seat, when I turn my head back facing forward, I see stars like crazy for about 20 seconds. I definitely quit looking behind me!! And I haven't driven in the last 7-8 years due to other eye issues. Common sense tells me that when I am turning my head, apparently my blood supply gets cut off or something similar. But, tell it to a neuro and you get NO response. Once againm, I think they should do the testing upright. I mean, how else to see what's going on in a positional symptom than to put the patient in that position????? Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted June 21, 2011 Author Report Share Posted June 21, 2011 sue,, totally, it is maddening! If I could order all of my own tests I'd take a look at my spine, sitting/standing MRI, I would have done that, oh, I don't know, a year and a half ago when I started getting sick maybe? lolI would also want an MRV of my neck.Do you know what I hate? When people say I should, "just live with it". I'm not opposed to living with discomfort or pain, it's just the undiagnosed stuff that I will not allow. I say, leave no stone unturned.We have to check everything before we decide to live with it. Quote Link to comment Share on other sites More sharing options...
enko Posted June 21, 2011 Report Share Posted June 21, 2011 I'm turning stones too right now Thanks for the movie title, I didn't know about that one.. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 21, 2011 Report Share Posted June 21, 2011 I totally agree with doing these tests upright. I so badly want the transcranial doppler of brain blood flow (laying and standing) test. Just hard to find a place that does it. I think it would be very revealing for many of us. Quote Link to comment Share on other sites More sharing options...
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