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Chiari Malformation Community
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Avatar universal

Anyone ever had a NS or NL dismiss you?

I have been seen, or had an MRI review from, about about 2 NL and 3 NS. I have a ton of symptoms and will meet with a Chiari expert next week who stated my MRI was significantly abnormal.
Both NL and two NS said my MRI confirms Chiari and it looks pretty significant. However, a couple days ago I got a call from one NS, who is also supposedly a Chiari Expert, that I had sent my MRI to a couple months ago. He said he is not sure he can diagnose Chiari based on my scans, that its not a big herniation and suggested I try physical therapy first...... Which is strange, and a little disturbing to me, because the other doctors seem to agree that Chiari is likely causing my symptoms and my MRI scans show significant abnormalities.
I honestly do not think physical therapy will help me, because the pain is not my most distressing symptom. Visual distortions, vertigo, poor coordination, tinnitus and autonomic dysfunction are much more distressing than the headaches/pain. I did try physical therapy once in 2010 and was discharged when the neck traction machine caused a sudden spike in neurological symptoms.
14 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi...I had several NS's and NL's dismiss me...and it is possible that the scans were not clear enuff or the right angle or slice  or magnification for him to see what he wants to or needs to....and many specialists will have us try PT and other testing to see if any thing helps which can aid us when the INS company see surgery for Chiari  when we need them to approve it...

Keep in mind a NS makes money when he does surgery....some will offer to do surgery just for that reason.....while others like to see how to best treat you and see what else may be going on....

We all get passed over that we have dubbed it "the royal Chiari runaround"

So please do not feel you are the only one getting mixed messages...and know if you have a specialist suggesting something other then surgery it may be worth your while to do...as we need to know ALL conditions we may have b4 we consider surgery. JMHO
Avatar universal
I think it's normal to have such diversity of opinions, even among specialists (or rather neurosurgeons who claim to specialize in chiari) when it comes to chiari.  You have actually had more confirmation of chiari being the reason for your symptoms than I did before having surgery.  I saw 4 neurosurgeons who claimed to be chiari specialists but didn't actually lead a chairi center who all told me that chiari wasn't my problem and urged me not to allow anyone to operate on me.  One of these NS actually said I was so much more symptomatic than his chiari patients that he didn't think it could be chiari.  I also saw 3 neurologists that pretty much laughed at me when I questioned chiari and just wanted to put me on antidepressants and antianxiety meds, which I didn't take.  One NL said it would be criminal to operate on me.
After all that I sent my images to two chiari specialists who lead  a chiari center and they both agreed that they thought the chiari was to blame.  I had surgery 12 weeks ago and am doing soooo much better.  Still not perfect by any means but I am functioning.  I'm not in bed at all anymore wishing life would just end if it was going to feel like this for the rest of it.  My symptoms were very similar to yours.  
During the time I was sick my kids kept asking if they could go to this indoor waterpark that just opened, and our response was "when mom gets better."  Well, we are going today!  I obviously can't do much, but my surgery enabled this to happen.   I think about how I was passed over by so  many doctors and I think about how many others are being treated the same way and it saddens me.
I did go through vestibular therapy at one point along my journay and it made my symptoms significantly worse.  PT for the pain I had was never really effective and the therapists always questioned my increased muscle tone and shakiness to my body, that it wasn't normal.  I didn't have much pain in my neck but rather my legs and back.  I wasn't even able to stretch my legs before surgery, I would have an increase in symptoms of pain, tightness, tingling, and even a rocking sensation through my body if I stretched.  That is much much better now.
Avatar universal
Thanks for the replies. I am just kind of hoping my problems are chiari related so I will know the reason and have a chance to be cured.
So far, besides the neurosurgeon, no doctors were able to give an explanation for my suffering, or offer any effective treatment. Iv done probably every blood test known to man and according to my labs I am so healthy I should be in the Olympics. I have seen two psychiatrist, the first one said he wouldnt see me after the second visit; stating "you need to be seeing a neurologist not me." The second does not believe my symptoms are psychiatric but physical as well.  Without help I am gone, learning to live with this is something that will NEVER happen, so suicide would be the outcome.
I am ultra sensitive to all medications, even OTC meds I cannot take. To give you an idea of my sensitivity, right now I take 2 beads of effexor xr, which means I open up a capsule and remove two tiny beads out of hundreds. Taking more gives me side effects and a whole capsule will knock me to the floor.  So I probably take 0.2mg of Effexor XR, the lowest starting dose is 37.5mg and a normal low dose is 150mg.
So medication really is not an option for me because 99% chance I wont be able to handle even a children's dose.
Physical therapy also didnt help, it actually made things worse to the point I was discharged.
Avatar universal
I was sensitive to meds too, not sure if I still am but I wasn't sensitive to any meds prescribed after surgery. Before surgery even ibuprofen would make me dizzier. I had to take an anti fungal diflucan due to the antibiotics and prednisone Drs had me on thinking it was sinus issues, it gave me some minor thrush. That med made me so dizzy, I couldn't close my eyes without spinning. Aleve also gave me vertigo if I took 2.  I questioned my NS about this and it didn't surprise him. He said people with Chiari often have side effects from meds. He explained why, but I can't remember exactly.
Avatar universal
I took NyQuil once years ago and I thought I was going to die! I was spaced out for 2 days. I have no idea if that had anything to do with Chiari but it was near the time that my symptoms first reared their head, and then things got better for a while and then finally I became symptomatic again and it didn't go away.
620923 tn?1452915648
COMMUNITY LEADER

  Sensitivity to meds can be due to a related condition Ehlers-Danlos*....so, make sure they rule it out....

For me sensitivity to meds can change with time too...I had surgery for a fall and meds were used during surgery and post op.....a few months later I required ore surgery due to the same fall...this time I was allergic to the meds I had taken just a few months prior with no ill effects....

Please check to see if your med issues are related to EDS.*
1 Comments
I will specifically ask about EDS, although Im not sure I have it because my fingers do not bend back so much like I see in the images when I googled it. However, a massage therapist told me I have a very odd muscle tone and on one side of my neck/shoulder the tone was different.
Avatar universal
Thanks all for the support, I am on the way to the airport now. I am flying to NC for my evaluation tomorrow with Dr Rosner. I am a little nervous.
Lasel, more and more your story is sounding identical to mine, which gives me a lot of hope. Thank you. I also do not remember being so med sensitive until symptoms appeared.
620923 tn?1452915648
COMMUNITY LEADER

  Good luck with your flight and visit with Dr R.

Let us know what you find out.
Avatar universal
Selma, that's interesting about the sensitivity to meds and EDS.  It's weird that you can be fine with a drug one time and then sensitive the next.  I do believe I was checked for it at my initial visit, and I only tested positive on being able to touch my thumbs to my arms.  Although before my muscle tightness started I was able to touch my palms to the floor without bending my knees when bending over.  I was also asked a bunch of other questions regarding bruising and other things I can't remember.  But it's something to keep in mind knowing my history.

Good luck with your visit Blueghost.  Just know there is hope.  At this time last year I was feeling quite hopeless and just awful.  Just sitting in a doctors waiting room watching people walk by made me feel sick and dizzy.  I got emotional yesterday watching my kids have a ball at the waterpark because without my NS recognizing my symptoms and performing surgery I would never have been able to take them there.  Just sitting there amongst all the commotion and noise would have been enough to make me sick.  I was able to walk around, move my head without getting dizzy, and even go on a few slides without being disoriented.  I even wanted to do more, but I knew it would be stupid to jeopardize the results of my surgery if I hit my head.  But last year, I didn't even feel like getting up and walking around the house no less go to a waterpark.
620923 tn?1452915648
COMMUNITY LEADER

  Most info that is out on the web is now showing the possibility that EDS may cause Chiari and most with Chiari (congenital that is) also have one type of EDS.. Keep in mind those tests (hypermobilty Beighton score) help determine the hypermobility type of EDS.....not everyone with EDS is hypermobile....so have a true EDS Dr help you rule it out.

Avatar universal
I'll have to ask my NS about this at my 6 month follow up because I am worried about my kids too, and I think EDS is genetic.  He did mention he thought I had a connective tissue disorder of some kind but not as severe as EDS.  My mom had weird symptoms on and off throughout her life too that no doctor could find a reason for.
Avatar universal
Here is a quick update. The examination yesterday lasted over 2 hours. The NS said Chiari is absolutely confirmed and a lot of my neurological tests were very abnormal.
He said I have a lot of brain stem involvement and set down with me and explained the process behind almost every symptom I had. He even mentioned symptoms that I had not told him about yet. As far as related conditions he does want to preform a few more tests but two neck problems were found.
After the visit i talked with one of his office staff who he had operated on last year and she said it pretty much gave her her life back.
As of now, surgery is planned for April 20th.
620923 tn?1452915648
COMMUNITY LEADER

  Glad to hear things went well......do put your surgery date in the List your surgery thread if you would like a Prayer Thread posted for your surgery.

Wishing you all the best.
Avatar universal
I'm glad your appointment went well. That's nice that he spent so much time with you and was thorough especially after getting the run around with other doctors.  
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