Aa
I'm a beginner and I need some guidance..
Hi guys,
My name is Melissa and I'm new to this Chiari community. I've read several posts/questions here and all the information and answers given have been helpful and very friendly. I've been diagnosed for over a year but because I have a very complicated medical health situation without the Chiari, I am not considered a candidate for surgery right now. That being said, I would like to find a way to deal with some of my symptoms. I am very blessed that I do not experience many of the more serious symptoms like continuous passing out, severe headaches, etc. but the symptoms I do have e very constrictive of my life. I do have headaches but I also suffer from continual ear ringing and fullness in my ears, constant burning in my mouth which affects everything I eat, constant temperature changes in my face (not being felt on the outside, only on the inside) and continual lightheadedness. I have a top notch neurosurgeon but he is unable to help me with any of my day to day symptoms. I read more than once on more than one Chiari forum that a neurologist is NOT helpful, yet a new Chiari friend of mine says that's the only kind of doctor she sees. I know there is no wrong or right way, as every patient is different but I don't even know where to start, or what other kind of doctors or help I can be or should be looking for. I just want to improve my quality of life. I have a 2 cm hierniation and I'm always worried about doing too much because I don't want to make it worse. However, my last MRI's in May showed NO change at all in 9 months so I'm very happy about that. I just want to continue on that path, as I'm praying for complete healing! Any advice or words of wisdom would be helpful and also could someone tell me where to go to find the list of doctors for Chiari? I could not find it. Thank you and thank you for having such a forum!
Blessings,
Melissa
My name is Melissa and I'm new to this Chiari community. I've read several posts/questions here and all the information and answers given have been helpful and very friendly. I've been diagnosed for over a year but because I have a very complicated medical health situation without the Chiari, I am not considered a candidate for surgery right now. That being said, I would like to find a way to deal with some of my symptoms. I am very blessed that I do not experience many of the more serious symptoms like continuous passing out, severe headaches, etc. but the symptoms I do have e very constrictive of my life. I do have headaches but I also suffer from continual ear ringing and fullness in my ears, constant burning in my mouth which affects everything I eat, constant temperature changes in my face (not being felt on the outside, only on the inside) and continual lightheadedness. I have a top notch neurosurgeon but he is unable to help me with any of my day to day symptoms. I read more than once on more than one Chiari forum that a neurologist is NOT helpful, yet a new Chiari friend of mine says that's the only kind of doctor she sees. I know there is no wrong or right way, as every patient is different but I don't even know where to start, or what other kind of doctors or help I can be or should be looking for. I just want to improve my quality of life. I have a 2 cm hierniation and I'm always worried about doing too much because I don't want to make it worse. However, my last MRI's in May showed NO change at all in 9 months so I'm very happy about that. I just want to continue on that path, as I'm praying for complete healing! Any advice or words of wisdom would be helpful and also could someone tell me where to go to find the list of doctors for Chiari? I could not find it. Thank you and thank you for having such a forum!
Blessings,
Melissa
Hi Melissa,
You are the first person I have come across (well before becoming aware of how extensive my neuro problems really are) that describes the mouth burning so badly. My first out of no where neuro problem was complete compression from upper elbow down to fingers of my ulnar nerve (funny bone). Within 5 weeks extreme nerve and muscle death with unbelievable pain in many ways 3yrs later I still deal with. My hand was a skeleton, hand surgeon had never seen anything like it. Apparently that was my first warning shot!
Anyway, for the next 7 months they put me on very high doses of both gabapentin (neurontin) and amatriptilyne (elavil) and my mouth burned like yours. All i could eat was popsicles, and put on 70lbs in 7 months. Drs wouldnt listen so I finally took myself off them and the burning and weight gain stopped.Burning wasnt instant but slowly did stop. I now have very limited taste, and can taste one or two items at a time just ok any more confuses my brain and I taste cardboard.
That part, I dont know if it pertains to longer term damage from those med combos or just part of lots of neuro issues I have.
My point though is, is it possible you could be on a combination of those meds or similar? Considering my brush with them its a possibility I thought worth offering you. I have no doubt it was with me and I know exactly what you are dealing with...its horrible!
Best of luck!
You are the first person I have come across (well before becoming aware of how extensive my neuro problems really are) that describes the mouth burning so badly. My first out of no where neuro problem was complete compression from upper elbow down to fingers of my ulnar nerve (funny bone). Within 5 weeks extreme nerve and muscle death with unbelievable pain in many ways 3yrs later I still deal with. My hand was a skeleton, hand surgeon had never seen anything like it. Apparently that was my first warning shot!
Anyway, for the next 7 months they put me on very high doses of both gabapentin (neurontin) and amatriptilyne (elavil) and my mouth burned like yours. All i could eat was popsicles, and put on 70lbs in 7 months. Drs wouldnt listen so I finally took myself off them and the burning and weight gain stopped.Burning wasnt instant but slowly did stop. I now have very limited taste, and can taste one or two items at a time just ok any more confuses my brain and I taste cardboard.
That part, I dont know if it pertains to longer term damage from those med combos or just part of lots of neuro issues I have.
My point though is, is it possible you could be on a combination of those meds or similar? Considering my brush with them its a possibility I thought worth offering you. I have no doubt it was with me and I know exactly what you are dealing with...its horrible!
Best of luck!
COMMUNITY LEADER
Yeah, I see the cm now....lol...missed it....but keep in mind the length is not always an indication for surgery, it is the obstruction of flow.....so even if the herniation is long, it may not be obstructing flow...a CINE MRI will help determine this.
May I ask, was the MS DX one u still have or was it a mis Dx?
Selma... I'm sure we did discuss it. We talk about so much on here it seems to run together sometimes. Yes I have done some searches on here and I see where some of the members are no longer active which is why I reach out with new posts. I appreciate your knowledge and support always :-) Lisa
Well my NS is very familiar with Chiari and is known in this area for his decompression surgeries. But he doesn't deal with day to day symptoms as he is a surgeon. The NL (that stands for neurologist, right) that DX'ed me is not going to be my regular NL--I am looking for one in my area now. I do have a PCP but as I said he doesnt know much about Chiari. As far as my medical history, I'm 45 and lived with disease my whole life. I was born with a congenital heart and lung disease, broke my hip when I was 7, had scoliosis surgery with a rod put in when I was 12, suffered heart damage during that surgery, lost vision in my right eye for a short time when I was 19 and was diagnosed with MS, then CFS. From there it's been one thing after another--anemia, fibroids, tachycardia, you name it, I had it. I started suffering from Chiari symptoms in the fall of 2011 and was officially diagnosed in January of 2012.
Just the past week, I've gotten extreme temperature changes in my face (I usually only feel those when I'm bending over but now they're all the time) and the buzzing/ringing in my ears is constant, some days worse than others. When I have the temp changes (usually feel like cold or burning), I feel like one would wen they're straining to use the bathroom or they're about to faint. And occasionally pain in the back of my head but thankfully that goes away when I take a pain reliever.
I have never read about the temp changes in the face anywhere when I look up Chiari symptoms but I know it's from the Chiari because it has to be nerve related. I was wondering if the symptoms I'm getting now (the ears and changes) could be because I have a CSF blockage? Is there any way I could help that on my own--by laying down more, moving my head one way or the other? Or is surgery the only fix for CSF blockage?
Due to my limited failing heart and one usable lung, I am medically not considered a good candidate for surgery. ALL of my doctors agree on that (and I have at least 5). And my herniation is not small--2 cm is actually 20 mm. But up until now my symptoms have been thankfully manageable. I just need to know where or who I should look to for the next step. Thank you Selma for your kind advice.
Lisa, it is always good to know we're not alone in what we're going through. Feel free to write me anytime you need an ear. What are nerve blocks? I am woefully inadequate in Chiari knowledge. Thank you guys!
Just the past week, I've gotten extreme temperature changes in my face (I usually only feel those when I'm bending over but now they're all the time) and the buzzing/ringing in my ears is constant, some days worse than others. When I have the temp changes (usually feel like cold or burning), I feel like one would wen they're straining to use the bathroom or they're about to faint. And occasionally pain in the back of my head but thankfully that goes away when I take a pain reliever.
I have never read about the temp changes in the face anywhere when I look up Chiari symptoms but I know it's from the Chiari because it has to be nerve related. I was wondering if the symptoms I'm getting now (the ears and changes) could be because I have a CSF blockage? Is there any way I could help that on my own--by laying down more, moving my head one way or the other? Or is surgery the only fix for CSF blockage?
Due to my limited failing heart and one usable lung, I am medically not considered a good candidate for surgery. ALL of my doctors agree on that (and I have at least 5). And my herniation is not small--2 cm is actually 20 mm. But up until now my symptoms have been thankfully manageable. I just need to know where or who I should look to for the next step. Thank you Selma for your kind advice.
Lisa, it is always good to know we're not alone in what we're going through. Feel free to write me anytime you need an ear. What are nerve blocks? I am woefully inadequate in Chiari knowledge. Thank you guys!
COMMUNITY LEADER
I know we have had the discussion for the nerve blocks b4, if u want to read older threads on this topic please use the search this community feature at the top of the forum.
It looks like a magnifying glass, click on it then type in ur topic of choice, and then u can read what others have said about this topic, keep in mind these older threads may have comments by members no longer active.
I have constant fullness and ringing iny ears also. My chiari is 8mm and I have severe head aches. So far for me, rest, Ibuprofen 800mg and PT have helped. I am considering nerve blocks and surgery. I find this forum helpful in knowing we are not alone:-) Lisa
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
It is important to have a Dr that is familiar not only with Chiari but ALL the related conditions, if u have a NL that is familiar then that would be a good choice for u as the NL is the one that DX's and the NS only treat surgically...so if u r not a surgical candidate our list will not be of help to u as all chiari specialists are NS's..
Not knowing what ur other issues are it is hard to suggest what type of Dr u should see, but I would start with a NL or Endo that knows Chiari and EDS....and go from there, rule out ALL the related conditions to see if that is what u have ur symptoms from,.
And get a CINE MRI to see if ur smaller herniation is causing issues, u could also have a retroflexed odontoid...
The Drs that are saying u r not a surgical; candidate may not have the experience to know what is really going on, so a 2nd opinion may be in order.
JMHO
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