Aa
Neurologist appointment
He was a nice guy, but I dont know what to think about what he said.
The visit was listed as being seen for my Vertigo, which is gone now but I still get dizzy and feel "off".
After discussing my symptoms (which im sure I for got a few) and my other medical issues like the Syrinx.
He determined that it was BPV and not Labyrinthitis. I think that is in-correct, he says if I had Labyrinthitis it would be constant, not positional, this DOES make sense, however the symptoms were about 12 to 24 hours after the neck strain/counter strain techniques like inflammation, and it was reduced with a anti-inflammatory shot, then it came back when the shot wore off. I feel it was inflammation, but I guess im wrong.
My right pupil has frequently been larger than the right and my right sided jaw pain is frequently very sharp and stabby nerve pain and the right ride of my mouth is extra sensitive to hot and cold. I have frequent shortness of breath and have been swallowing down the wrong tube a lot lately. My BP has been all over the place and I have wide-spread pain and fatigue.
I asked him about monitoring the Syrinx, and he said that is not advised. He said any treatment for this small of a Syrinx is not advised, and that is why the NS in Seattle wouldn't touch me with a ten foot pole, surgeries and shunts for a person like me would only make things worse. I agree with that but i just want to figure out why I am in pain, and if this is the cause.
I have a orthopedic consult on the 31st, it is my last chance to use my insurance before it runs out, Hopefully they will see that my neck is unstable, maybe I can get them to test for connective tissue disorder.
I dont know what to do now, I just feel like giving up on all of this. All I wanted was for them to acknowledge that I have symptoms and limitations and can get that so I don't know what to do. I could send my info to the Chiari institute but I don't have the money for that.
I might have to go to college and see where I find my self in the medical field, two times now I have been told that I have a very high understanding of this, so I will have to pursuit it. Hopefully I will be able to help spread awareness and people who have rare conditions that I am highly educated in.
The visit was listed as being seen for my Vertigo, which is gone now but I still get dizzy and feel "off".
After discussing my symptoms (which im sure I for got a few) and my other medical issues like the Syrinx.
He determined that it was BPV and not Labyrinthitis. I think that is in-correct, he says if I had Labyrinthitis it would be constant, not positional, this DOES make sense, however the symptoms were about 12 to 24 hours after the neck strain/counter strain techniques like inflammation, and it was reduced with a anti-inflammatory shot, then it came back when the shot wore off. I feel it was inflammation, but I guess im wrong.
My right pupil has frequently been larger than the right and my right sided jaw pain is frequently very sharp and stabby nerve pain and the right ride of my mouth is extra sensitive to hot and cold. I have frequent shortness of breath and have been swallowing down the wrong tube a lot lately. My BP has been all over the place and I have wide-spread pain and fatigue.
I asked him about monitoring the Syrinx, and he said that is not advised. He said any treatment for this small of a Syrinx is not advised, and that is why the NS in Seattle wouldn't touch me with a ten foot pole, surgeries and shunts for a person like me would only make things worse. I agree with that but i just want to figure out why I am in pain, and if this is the cause.
I have a orthopedic consult on the 31st, it is my last chance to use my insurance before it runs out, Hopefully they will see that my neck is unstable, maybe I can get them to test for connective tissue disorder.
I dont know what to do now, I just feel like giving up on all of this. All I wanted was for them to acknowledge that I have symptoms and limitations and can get that so I don't know what to do. I could send my info to the Chiari institute but I don't have the money for that.
I might have to go to college and see where I find my self in the medical field, two times now I have been told that I have a very high understanding of this, so I will have to pursuit it. Hopefully I will be able to help spread awareness and people who have rare conditions that I am highly educated in.
Oh Stacey I really am so sorry for all the run around you are getting, I know that it feels like there is no end to it!! When I hear stories like yours I always wish that I could DO something but all I can offer is that you will reap the benefits of not giving up!! I know how hard that is but it is the only way to get the answers you need.
I am happy to hear that at least you have a good PCP and have some medications that are helping you deal with this. I understand, even after my dx and surgery, my PCP is still hesitant to give me something to help. I am not someone who likes to take constant medication but when I have to take Tylenol and Advil consistently through the day (not to mention it only takes a small edge off) then I wonder why should I make myself live like that? I don't know why our Drs just can't listen to us more!!
Having such a tough situation with your father, no wonder you are feeling so awful!! Having that stress combined with your health problems...well for me stress triggers everything to be even worse. You are an amazing daughter though...he is a lucky man!!
Anytime I can help, just let me know!
*Stormy*
I am happy to hear that at least you have a good PCP and have some medications that are helping you deal with this. I understand, even after my dx and surgery, my PCP is still hesitant to give me something to help. I am not someone who likes to take constant medication but when I have to take Tylenol and Advil consistently through the day (not to mention it only takes a small edge off) then I wonder why should I make myself live like that? I don't know why our Drs just can't listen to us more!!
Having such a tough situation with your father, no wonder you are feeling so awful!! Having that stress combined with your health problems...well for me stress triggers everything to be even worse. You are an amazing daughter though...he is a lucky man!!
Anytime I can help, just let me know!
*Stormy*
So yesterday was my last ditch efforts to get more insight on my issues. My current Pcp is awesome and he referred me to a orthopedic specialist. I wanted to ask them there opinion on my borderline cervical stenosis, and possible cervical instability due to my atlas misalignment and reversal of the curvature,ect.
They asked me my reason for the visit and i explained I have neck pain and lower back pain, and a history of arthritis. They didnt have any new x-rays of my lumbar so they did another 5 X-rays on top of the many others I have had lately. I saw a assistant, unfortunitly because my insurance was ending yesterday, they had to squeeze me in to begin with. So it was an assistant who looked over all my images and I asked him many questions about my neck, he said my stenosis was not that bad even with the bone spurs contacting the cord, that they could do a epidural steroid injection and it might help with my radiating left arm pain. But overall he said my neck wasnt as bad as my lower back. My L 4-5 have a annual tear and is bulging causing mild canal and recess stenosis. They sent me out with a referral for the lumbar epidural injection, and said come back 2 weeks after I get it done (with no insurance). I injured that disk in 2007 and have suffered with flares of pain there ever since, that leave me on the couch for days. I asked if I could have a refill of ultram the oral surgeon gave me and he said "we cant do that until we do a surgery on you". So I have lidoderm patches for my pain and thats it.
My pcp is giving me Clonazapam and it has helped calm my nerve pain, and with the ultram it is really helpful to me, but they wont do it and I dont want to push it with my primary care doc,I was lucky he even is giving me the Clonazapam. I am going to have to really explain to him that my quality of life ***** when you hurt everyday.
So my new pcp is totally awesome, but unfortunitly my last 2 primary care doctors wouldn't send me to specialists and wasted about 6 month of my insurance time and that is why I am losing it my coverage. It was state assistance and they wanted medical evidence that I was still unable to go back to work. Well one of the last 2 doctors failed to provide that so I had to file for a fair hearing to keep my benefits, I felt they hadn't gotten me to the right specialist. So I have a court over the phone on April 13th to fight for the benefits I received from January until yesterday.
In Janurary, I had vertigo so there was no way I would have been able to work. I was told I would get a new evaluation to keep my benefits so I didn't do anything about my case, I thought I would get a the eval. Well I didn't and they told me it was because my medical info didn't deem me incapacitated and that over rides me getting a new evaluation, even though I never had a lagitamite opinion on my condition. If I lose, I might have to pay them back some of the benefits I received. If I win, I don't have to pay them back, but I will have to re-apply for medical which they will most likely deni me. Just ranting again I guess. This just *****!
I also help care for my father who loves with me, today we went in for a appointment for him. He has a dense tumor like lump over his spine in the middle of his back and I recently noticed it looked as though It grew, it is about the size of a golf ball sliced in half. I showed it to his doctor already in the past and he did nothing about it and now that it is huge they are going to figure out what it is. I am worried It is Cancer, it is all over his side of the family. My poor dad, he is only 61 and he has cognitive dysfunction, AS, his gait is so unsteady, and he has tremors. He cant even drive anymore. I am worried about him, and I have to take care of my self at the same time, it's tough.
Thank god for my Clonazapam and instant breakfast and coffee! Dont know where I would be with out them.
And thank you Stormy ans Selma for your help!
They asked me my reason for the visit and i explained I have neck pain and lower back pain, and a history of arthritis. They didnt have any new x-rays of my lumbar so they did another 5 X-rays on top of the many others I have had lately. I saw a assistant, unfortunitly because my insurance was ending yesterday, they had to squeeze me in to begin with. So it was an assistant who looked over all my images and I asked him many questions about my neck, he said my stenosis was not that bad even with the bone spurs contacting the cord, that they could do a epidural steroid injection and it might help with my radiating left arm pain. But overall he said my neck wasnt as bad as my lower back. My L 4-5 have a annual tear and is bulging causing mild canal and recess stenosis. They sent me out with a referral for the lumbar epidural injection, and said come back 2 weeks after I get it done (with no insurance). I injured that disk in 2007 and have suffered with flares of pain there ever since, that leave me on the couch for days. I asked if I could have a refill of ultram the oral surgeon gave me and he said "we cant do that until we do a surgery on you". So I have lidoderm patches for my pain and thats it.
My pcp is giving me Clonazapam and it has helped calm my nerve pain, and with the ultram it is really helpful to me, but they wont do it and I dont want to push it with my primary care doc,I was lucky he even is giving me the Clonazapam. I am going to have to really explain to him that my quality of life ***** when you hurt everyday.
So my new pcp is totally awesome, but unfortunitly my last 2 primary care doctors wouldn't send me to specialists and wasted about 6 month of my insurance time and that is why I am losing it my coverage. It was state assistance and they wanted medical evidence that I was still unable to go back to work. Well one of the last 2 doctors failed to provide that so I had to file for a fair hearing to keep my benefits, I felt they hadn't gotten me to the right specialist. So I have a court over the phone on April 13th to fight for the benefits I received from January until yesterday.
In Janurary, I had vertigo so there was no way I would have been able to work. I was told I would get a new evaluation to keep my benefits so I didn't do anything about my case, I thought I would get a the eval. Well I didn't and they told me it was because my medical info didn't deem me incapacitated and that over rides me getting a new evaluation, even though I never had a lagitamite opinion on my condition. If I lose, I might have to pay them back some of the benefits I received. If I win, I don't have to pay them back, but I will have to re-apply for medical which they will most likely deni me. Just ranting again I guess. This just *****!
I also help care for my father who loves with me, today we went in for a appointment for him. He has a dense tumor like lump over his spine in the middle of his back and I recently noticed it looked as though It grew, it is about the size of a golf ball sliced in half. I showed it to his doctor already in the past and he did nothing about it and now that it is huge they are going to figure out what it is. I am worried It is Cancer, it is all over his side of the family. My poor dad, he is only 61 and he has cognitive dysfunction, AS, his gait is so unsteady, and he has tremors. He cant even drive anymore. I am worried about him, and I have to take care of my self at the same time, it's tough.
Thank god for my Clonazapam and instant breakfast and coffee! Dont know where I would be with out them.
And thank you Stormy ans Selma for your help!
I'm so sorry Stacey....unfortunately it seems that those of you with Chiari 0 have even a harder time than the rest of us...and that is really hard to imagine. It is so ridiculous b/c my NS was much more concerned with the overcrowding than how large my herniation was..he didn't even tell me the size other than "it fit the criteria". At that point I didn't know what he was talking about until I starting doing some research.
Now, I'm at that point that I have done a lot of research on the subject and read a great book about it and one thing that seems to be very clear is that the researchers that are headlining Chiari are trying to change the "criteria". It seems that they have realized that there is much more to Chiari than size of herniation as well as different factors on why it occurs in the first place. It is a slow and steady process but I think as more Drs come on board they will realize that there is much more to it...like if there's CSF blockage, brain stem compression etc... So I guess what I am saying is take heart...they are working and advancing in the right direction but unfortunately people with Chiari 0 are basically waiting for them to play catch up.
All that said...I am still shocked and frustrated for you that you have all that going on and no specialist has put two and two together...or maybe they have but don't have the guts to take your case on and do something about it. The only advice I can give is to keep trying out new specialists!! Where I live there is a major absence of any specialists that even know of Chiari but I was super lucky and found a NS that was willing to dispute my NL's opinion (that it was stress..ha ha) and performed my surgery. That Dr is out there for you too...just keep looking!!
Again, I am so sorry that you have been going through this for so long...I only dealt with it for a year or so and that was even too long.
Take care
*Stormy*
Now, I'm at that point that I have done a lot of research on the subject and read a great book about it and one thing that seems to be very clear is that the researchers that are headlining Chiari are trying to change the "criteria". It seems that they have realized that there is much more to Chiari than size of herniation as well as different factors on why it occurs in the first place. It is a slow and steady process but I think as more Drs come on board they will realize that there is much more to it...like if there's CSF blockage, brain stem compression etc... So I guess what I am saying is take heart...they are working and advancing in the right direction but unfortunately people with Chiari 0 are basically waiting for them to play catch up.
All that said...I am still shocked and frustrated for you that you have all that going on and no specialist has put two and two together...or maybe they have but don't have the guts to take your case on and do something about it. The only advice I can give is to keep trying out new specialists!! Where I live there is a major absence of any specialists that even know of Chiari but I was super lucky and found a NS that was willing to dispute my NL's opinion (that it was stress..ha ha) and performed my surgery. That Dr is out there for you too...just keep looking!!
Again, I am so sorry that you have been going through this for so long...I only dealt with it for a year or so and that was even too long.
Take care
*Stormy*
See my issue is as far as my MRI's of my cerebral tonsils goes, they don't herniate but maybe 1mm in the right side. The point is, there is no room and my tonsils are pointed not rounded. So if anything its Chiari 0. They just don't look at it that way, there is no room for csf flow .
Then you add in the reversal of my neck curvature, atlas misalignment (sounds like instability to me), borderline cervical canal stenosis (narrowing to 10.3mm in same area where tiny Syrinx is most prominent). Bone spur complex, contacting the cord at c3-4 with "minimal cord deformity".
My symptoms are sensation disturbance in the hands, radiating arm pain (from neck) that comes on with inflammation or randomly. Stiffness of my neck and upper body (heck my whole darn body is stiff), wide spread aches and pain and spasms. Pressure headaches, eye pressure pain blurry vision . Orthostatic Hypotension, and wacky blood pressures. Most recent new issue is dizziness. My legs go tingly when I bend over longer than like 30 seconds. Lower back pain, spina bifida occulta at S-1 and Tarlov cyst at S-2, and my tail bone is bent in a inward 90 degree angle. Annual tear on one of my lumbar disks, facet hypertrophy and minimal neural forminal stenosis ans canal stenosis many bulged disks. I dont know which issues in my lower back cause me pain, but they seem to take turns lol.
They seem to disregard all of your findings until they r proven to be the cause of something. I understand they have to diagnose things properly and all that but, give me a break, do they really think all the stuff found on my mri's are asymptomatic, even though I have complaints of pain since my adolesance? I am just sick of being in pain, and no one wanting to treat it. My jaw is messed up from the atlas misalignment so theres more pain. Then to top it all off, I have had pelvic pain pretty frequently worse than normal since December. When I am not having cramps on my period, my right ovary is giving me more grief. Seems like every month for the past year I have gotten a painful cyst, and it is only getting worse it seems.
And now to really top it off, I have a cough. First time since last season I have actually caught a cold, it was fighting it so well for a few days but now it has taken hold, yucky : ( At first it went to my sinus's and I had pressure headache for the first 2 days. Hopefully it goes away fast!
That you all for your replies, they are greatly appreciated. Thanks if you took the time to read the above rant : ) Poor Sick Stacey
Then you add in the reversal of my neck curvature, atlas misalignment (sounds like instability to me), borderline cervical canal stenosis (narrowing to 10.3mm in same area where tiny Syrinx is most prominent). Bone spur complex, contacting the cord at c3-4 with "minimal cord deformity".
My symptoms are sensation disturbance in the hands, radiating arm pain (from neck) that comes on with inflammation or randomly. Stiffness of my neck and upper body (heck my whole darn body is stiff), wide spread aches and pain and spasms. Pressure headaches, eye pressure pain blurry vision . Orthostatic Hypotension, and wacky blood pressures. Most recent new issue is dizziness. My legs go tingly when I bend over longer than like 30 seconds. Lower back pain, spina bifida occulta at S-1 and Tarlov cyst at S-2, and my tail bone is bent in a inward 90 degree angle. Annual tear on one of my lumbar disks, facet hypertrophy and minimal neural forminal stenosis ans canal stenosis many bulged disks. I dont know which issues in my lower back cause me pain, but they seem to take turns lol.
They seem to disregard all of your findings until they r proven to be the cause of something. I understand they have to diagnose things properly and all that but, give me a break, do they really think all the stuff found on my mri's are asymptomatic, even though I have complaints of pain since my adolesance? I am just sick of being in pain, and no one wanting to treat it. My jaw is messed up from the atlas misalignment so theres more pain. Then to top it all off, I have had pelvic pain pretty frequently worse than normal since December. When I am not having cramps on my period, my right ovary is giving me more grief. Seems like every month for the past year I have gotten a painful cyst, and it is only getting worse it seems.
And now to really top it off, I have a cough. First time since last season I have actually caught a cold, it was fighting it so well for a few days but now it has taken hold, yucky : ( At first it went to my sinus's and I had pressure headache for the first 2 days. Hopefully it goes away fast!
That you all for your replies, they are greatly appreciated. Thanks if you took the time to read the above rant : ) Poor Sick Stacey
Hi Stacy...I am sorry you are getting the run around...but don't give up!! From what I have heard it is either free or very cheap to send your scans to TCI. I know the problem would be more with actually going there if they decided to see you. Is there any way that you could raise the money? Maybe family and/or friends could help?
I honestly don't understand why if you have Chiari and a syrinx why they are not doing anything about it!! To me, the syrinx has been caused by the Chiari which shows there is an issue there.
I live with widespread daily as well and I believe a lot of that was due to not getting treatment for Chiari quickly enough.
Hang in there...I pray there will be an answer for you soon!!
Stormy
I honestly don't understand why if you have Chiari and a syrinx why they are not doing anything about it!! To me, the syrinx has been caused by the Chiari which shows there is an issue there.
I live with widespread daily as well and I believe a lot of that was due to not getting treatment for Chiari quickly enough.
Hang in there...I pray there will be an answer for you soon!!
Stormy
Hi Honey
Dont give up the fight, you no your own body better than anybody and like most of us here you have been searching for answers for many years.
I live with the belief that one day we will stuble across the right kind and understanding ns or nl that will offer us answers, until then we have to continue the fight.
I have been searching for answers now for 3 years but my probs started 11 years ago, I have just got my medical records from my gp to proove this today when I attedn the hospital for yet another appointment, praying that ns will read them and think hey there is a link here somewhere.
Good luck and just no that we are all here for one another.
Niki x x x
Dont give up the fight, you no your own body better than anybody and like most of us here you have been searching for answers for many years.
I live with the belief that one day we will stuble across the right kind and understanding ns or nl that will offer us answers, until then we have to continue the fight.
I have been searching for answers now for 3 years but my probs started 11 years ago, I have just got my medical records from my gp to proove this today when I attedn the hospital for yet another appointment, praying that ns will read them and think hey there is a link here somewhere.
Good luck and just no that we are all here for one another.
Niki x x x
COMMUNITY LEADER
Hi Stacey...so sorry ...what a bummer.
I wish I could tell u more too : ( But, u getting in to med school and helping others with chiari, now that is great !!!
I am just wondering if there is something they overlooked,,,,,,I agree a small syrinx , there is not much u can do unless there is a change in size and or symptoms....but u have pain and symptoms so what is causing them....hmmmmmmmm
"selma"
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