Chiari Malformation Community
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11742299 tn?1420770380

syrinx from T2-T9 or10

I am in a whole lot of pain. I have been getting some help with doctors. I found out through a surgeon it was there. I also have been in so much pain it is hard to walk, sir,t, and find comfortable positions while resting. I have a herniated disc at T7-T8 to where the worst of the pain starts. I am at my wits end because I just found out I had this in my back even though the original mri was last year early feb. I am angry about this for one reason as long as it is, why not tell me. I am pretty sure it would have been seen. Second my gp who I have to get help with pain for now is not hearing me when I tell him the vicoden 5/325 is not even touching the pain. I see him the 12th. Is there something I can show him to help him understand the best thing temporarily while getting approval for the syringomalia doc I am trying to get into. I am crying daily my life is nothing but pain and muscle atrophy. I am getting weaker just from the muscles being cramped from pain. I will add more on past problems as I go on this thread. To tell the truth I have PTSD from other issues to which it returned from some bad treatments as of late. I want to add that I metabolize meds strange from a duplicate gene problem. Thanks.
7 Responses
9432311 tn?1432825085
Hi again. I thought I posted a response to you, but it does not show. What I said is that I am saddened by your post. I will pray for a relief to your pain and that you can get some comfortable rest and sleep. As I think about your doctor, I wonder if you present him with documented medical evidence from a website for chiari and syringomaelia will he be a bit more compassionate. I really hope you can also get to see the specialist that you mention. Please post back so we can check on you.
620923 tn?1452915648

  Hi and welcome to the Chiari forum.

  I am curious, do you know if your syrinx is due to injury or an obstruction of CSF flow from something such as Chiari?

You also mentioned an issue with meds and many of us also have that issue due to also have Ehlers-Danlos....there are many related conditions which can cause all sorts of issues and symptoms.

The EDS can also be the cause of disks being out of place....

Unless you had an injury due to a MVA or something such as that.....

Most Drs do not seem to think Syringomyelia and Chiari cause the pain and symptoms that it does....that are far too many of us dealing with the same things.

Know you are not alone...and once you find a true specialist you may feel more confidence with your Dr too
11742299 tn?1420770380
I really am not sure about chiari being a part of it. When I was 6 we had gotten in an accident. No seat belts at that time. What I remember is being jerked into the front seat, but I did not remember having any problems with pain in my neck or back. I have been wondering why it could have gotten the size it did. I do have disc degenerstion and the pain I feel is centered where my bulging discs is in my back at t7. I have slept more these past two days than I have in 6 mos. Along with the syrinx I have the tumors and nodules. Cysts in places are right now the kidneys and one in my face. Was not even told I had a cyst disirder for that part. A good question which has been on my mind is with the adrenal tuumors can that worsen this problem? As for the doctor I downloaded the booklet frm AMA. Will download more info on my nook to help him understand what goes with this. Still a little depressed, but the sleep is helping a little. I am really glad for any support.
620923 tn?1452915648

   An accident can cause one to develop low lying tonsils or a syrinx...it can also trigger dormant symptoms to flare as well....

  With the cysts did they give you a name of the condition? Again I will mention Ehlers-Danlos as it can cause cysts to develop as well as cause disk issues.....something to rule out. Since your disk issues can also be a result of the MVA....

I was in a MVA when I was 14 or so and got whip lash which was never found until yrs later and it can cause all sorts of issues....keeping in mind I also have Chiari.....and a few other related conditions...

Hmmm I know some with EDS can have adrenal issues so something to look into....not sure that answered that question....but something to look at closer for sure.

Good luck with your Dr and keep us posted.
11742299 tn?1420770380
Nope it gets me angry yes, but it also is frustrating cause I was just blown off. I am still scared I will be blown off today. I understand why I feel this, but yes I will ask the doc about this as well. I checked and one of my results were high so I am too nauseated at this point to care as long as I get some kind of direction this time. Thanks for the insight. Anything can help me at this point when nothing was really even considered. The surgeon I saw, which found the syrinx told me it was not the syrinx causing the pain. I actually freaking beg to differ. Fb had a person in my area to check out. Fingers crossed. I am really tired of being upset about this stuff and would like some kind of compassion for once. You really do not want to know how far an er doc took the psych issue and this yahoo could have made this worse too cause karate chopped me in the chest. RRight above the nothing there syrinx I have. Anger that I may never get to express to this dork.
11742299 tn?1420770380
I looked at my initial response and the first mri was feb 1 2013. So far ad I know from word of mouth it did not get too much bigger. Is that a good thing?
620923 tn?1452915648

  Yes, it is a good thing it is not getting bigger...the bigger it gets the more pressure it can place on the nerves in the area of the syrinx....and it also indicates a CSF obstruction as well.....once a syrinx is there CSF is being diverted....and the larger it gets the more CSF that gets diverted.

I was sent to a shrink for my symptoms as well...RX'd physc meds......it seems they all tend to see us in that light....Chiari and treatment is still relativity new....in that they can see it .....and most have no idea how it can and does affect us.....this goes for Syringomyelia as well....

Hang in there.
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