Aa
nausea and TCI
hmmm that one I didnt want!!! I can deal with all the other stuff, HA, dizziness, the pain, etc.. (sort of lol )
For the past month I have been having nausea almost 24/7 never gotten sick but lost about 11 - 13 lbs and now I weigh just over 97 lbs (I am 160 cm I think it is 5,2) got me scared when I stepped on the scale.. I thought it was related to my dizziness but now I am not sure.
I was on Lyrica and when I stopped taking them that is when it all started, I didn't get a chance to stop taking them slowly bcuz I ran out of them and I could not reach my Dr.
As some of you know I don't have Chiari, but I do have a Syrinx and I have never heard that this was one of the symptoms so could this be bcuz of the Lyrica? Have anyone here stopped taking them with this result?
And another question.
How long does it take to get a response from TCI? I sent my stuff over on Dec 8th and have heard nothing, do they e-mail you and let you know when it arrives? The lady I e-mailed said that she would keep an eye out for it. But maybe bcuz of the holidays that it is taking so long to get there.
Happy new year and hope you all have a pain free 2011 :) I feel unbelievably thankful to have found you and will absolutely pick your brains more often in 2011 :D
Hdav
For the past month I have been having nausea almost 24/7 never gotten sick but lost about 11 - 13 lbs and now I weigh just over 97 lbs (I am 160 cm I think it is 5,2) got me scared when I stepped on the scale.. I thought it was related to my dizziness but now I am not sure.
I was on Lyrica and when I stopped taking them that is when it all started, I didn't get a chance to stop taking them slowly bcuz I ran out of them and I could not reach my Dr.
As some of you know I don't have Chiari, but I do have a Syrinx and I have never heard that this was one of the symptoms so could this be bcuz of the Lyrica? Have anyone here stopped taking them with this result?
And another question.
How long does it take to get a response from TCI? I sent my stuff over on Dec 8th and have heard nothing, do they e-mail you and let you know when it arrives? The lady I e-mailed said that she would keep an eye out for it. But maybe bcuz of the holidays that it is taking so long to get there.
Happy new year and hope you all have a pain free 2011 :) I feel unbelievably thankful to have found you and will absolutely pick your brains more often in 2011 :D
Hdav
Thank you both Stacey and Selma
I will look into it you are all such a great help :)
I will look into it you are all such a great help :)
I was involved in a mild car accident 12 years ago but did not get hurt just a mild back pain that lasted for a few weeks. Another car ran in to my passenger side maybe doing 20 - 30 kmph My symptoms started 3 yrs ago and that was my NL opinion that the syrinx was possibly caused by that accident, but now he is not so sure bcuz of the other symptoms I am having and that he cant proof that the syrinx is causing any of them. my NL is very confusing that is why I needed the help of TCI :)
You told me about the chiari 0 and I did educate myself on that with my dictionary in one hand :) I completely forgot that It is not the size of herniation but the malformation even though I read that quite a few times here on the forum!!! what is that LOL
Thank you sooooooo much for your help I really appreciate it.. you must be one of the nicest person on earth :)
You told me about the chiari 0 and I did educate myself on that with my dictionary in one hand :) I completely forgot that It is not the size of herniation but the malformation even though I read that quite a few times here on the forum!!! what is that LOL
Thank you sooooooo much for your help I really appreciate it.. you must be one of the nicest person on earth :)
COMMUNITY LEADER
Thanks Stacey...I went to get a link...intra cranial hypertension as Stacey said is an increased build up of CSF fluid...it can be there and cause the cerebral tonsils to herniate or it can be an idiopathic issue after PFD surgery...
The older term was pseudotumor cerebri....and we do have a Health Page...I have a link for u-
http://www.medhelp.org/health_pages/Neurological%20Disorders/What-is-Pseudotumor-Cerebri/show/1017?cid=186
The older term was pseudotumor cerebri....and we do have a Health Page...I have a link for u-
http://www.medhelp.org/health_pages/Neurological%20Disorders/What-is-Pseudotumor-Cerebri/show/1017?cid=186
intra cranial hypertension: pressure in the cranium, Increased pressures of the spinal fluid.
COMMUNITY LEADER
May I ask ...did u have an injury to the thoracic part of ur back?
The problem is u r looking at the herniations...and the herniation does not determine if u have chiari, it is ur mal formed skull that does that....the herniation is a result of that area being too small .
Many of the true chiari specialists recognize chiari as symptomatic with a herniation under 5mm and it is referred to Chiari 0.....in fact when I had my post op my NS said my hernioation is at 2mm so expect to continue to have chiari symptoms as u still have chiari and a herniation.....and that is due to me also having tethered cord which is found in the lumbar spine and why I asked if u had a MRI of that area.
"selma"
The problem is u r looking at the herniations...and the herniation does not determine if u have chiari, it is ur mal formed skull that does that....the herniation is a result of that area being too small .
Many of the true chiari specialists recognize chiari as symptomatic with a herniation under 5mm and it is referred to Chiari 0.....in fact when I had my post op my NS said my hernioation is at 2mm so expect to continue to have chiari symptoms as u still have chiari and a herniation.....and that is due to me also having tethered cord which is found in the lumbar spine and why I asked if u had a MRI of that area.
"selma"
Uploaded one (took a photo of my paper so it is not a good one), I only have this one thanx selma and I know yr not a dr :) just to see where I should look for a blockage
No never had chine mri but I did have brain mri with and without contrast and cervical and thoracic mri done, that is when they found the syrinx in my thoracic
Well I have googled chiari mri´s and mine is nothing like it so that is basicly why I don't think I have it..
what is intra cranial hypertension?
No never had chine mri but I did have brain mri with and without contrast and cervical and thoracic mri done, that is when they found the syrinx in my thoracic
Well I have googled chiari mri´s and mine is nothing like it so that is basicly why I don't think I have it..
what is intra cranial hypertension?
COMMUNITY LEADER
BTW- if u do upload ur MRI'S...use Photoshop to delete ur personal info on them...this is a public forum...just for safety concerns it is best to remove that info.
COMMUNITY LEADER
I can look, but not being a dr I can not promise nething either.....
It all depends on the slice that was taken and the variables on the machine itself as to how to know how to look at these...I am not that well educated....
Have u had a CINE MRI?....Brain MRI w/wo contrast, a cervical spine, thoracic and lumbar spine MRI'S?.....these r what will help the drs figure out what is going on or not......
May I ask y u do not think u have chiari?.....have u been checked to intra cranial hypertension?...that can force the tonsils to herniate too....
"selma"
It all depends on the slice that was taken and the variables on the machine itself as to how to know how to look at these...I am not that well educated....
Have u had a CINE MRI?....Brain MRI w/wo contrast, a cervical spine, thoracic and lumbar spine MRI'S?.....these r what will help the drs figure out what is going on or not......
May I ask y u do not think u have chiari?.....have u been checked to intra cranial hypertension?...that can force the tonsils to herniate too....
"selma"
sanukilady : thanx for the info, found it and will read it. TCI is The Chiari Institute in NY like selma said I am on the waiting boat to hear from them
Selma: I hope it is the holidays, trying not to think that my stuff got lost on the way.
My Syrinx is not that large... that is why I thought it was a result from stop taking Lyrica. I did not gain much weight on it and the nausea was never an issue until I quit taking it.
And yet another question
I was looking at my brain mri (on paper) and I don't think I have Chiari though I have 1mm herniation.. I cant see any csf blocking but lol I really haven't seen any other mri´s either :) If I can put one on my profile could you do me the favor and look at it.. not to dx me just to give me an idea what I am seeing..
Selma: I hope it is the holidays, trying not to think that my stuff got lost on the way.
My Syrinx is not that large... that is why I thought it was a result from stop taking Lyrica. I did not gain much weight on it and the nausea was never an issue until I quit taking it.
And yet another question
I was looking at my brain mri (on paper) and I don't think I have Chiari though I have 1mm herniation.. I cant see any csf blocking but lol I really haven't seen any other mri´s either :) If I can put one on my profile could you do me the favor and look at it.. not to dx me just to give me an idea what I am seeing..
COMMUNITY LEADER
Hi....for those that r unaware TCI = The Chiari Institute in NY.....
It may be the Holidays getting this bogged down, but 4 to 6 weeks tops u should hear something, if not call,,,,,the squeaky wheel gets the oil.I can not remember how long it was till I got news from them....I know till I got all the testing they wanted and sent it all in...it was the end of Jan...and I was there in March and had surgery in May.....and that was with a rescheduling.....
I had a lot of nausea too, but I do not have a syrinx....and I am sure it all depends on how large urs is and when it is as to what it can and will affect.
AS for weight loss with Lyrica...I have always heard the opposite...most deal with weight gain while on this med....but we r all diff....and do not react to meds the same.....so keep that in mind and do let ur dr know.
"selma"
It may be the Holidays getting this bogged down, but 4 to 6 weeks tops u should hear something, if not call,,,,,the squeaky wheel gets the oil.I can not remember how long it was till I got news from them....I know till I got all the testing they wanted and sent it all in...it was the end of Jan...and I was there in March and had surgery in May.....and that was with a rescheduling.....
I had a lot of nausea too, but I do not have a syrinx....and I am sure it all depends on how large urs is and when it is as to what it can and will affect.
AS for weight loss with Lyrica...I have always heard the opposite...most deal with weight gain while on this med....but we r all diff....and do not react to meds the same.....so keep that in mind and do let ur dr know.
"selma"
Please read the "CM and SM Handbook" [Chiari Malformation and Syringomyelia Handbook] found on the CM and SM Foundation link. I saw something specifically about your condition on page 9 I have to give them credit for thoroughness.
Is a TCI a seizure - like event? I remember seeing this before. I don't know the prevalence of seizure events, but Topamax, originally solely a seizure medication, is prescribed both as a preventative headache medication and to decrease the amount of intracranial pressure in chiari patients.
Hope this helps
SL
Is a TCI a seizure - like event? I remember seeing this before. I don't know the prevalence of seizure events, but Topamax, originally solely a seizure medication, is prescribed both as a preventative headache medication and to decrease the amount of intracranial pressure in chiari patients.
Hope this helps
SL
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