Aa
I have Syringomyelia also, T3-T8
Hello,
I was diagnosed 2 years ago with 2 prolapsed and leaking discs, L4-S1. The pain was intense at times, and over the past several months had gotten worse and worse. ( am a 42 year old woman, btw. The pain did not get any better and I bought myself an Aspen LSO brace, and I wear it a lot--it helps provide compression to my lumbar, which helps a lot. Until recently.... then the pain started increasing, upwards, into my thoracic region. After about 4 or 5 months of constant increasing pain, I finally sought out my third surgeon and got all new MRI scans. It had been 18 months since my last round of scans.
This time, even though I am in horrible pain in my lumbar region STILL, now they have found a very large arachnoidal cyst growing on my spinal cord, from T3- all the way to T8. It is like a burning, intense burning pain in my middle back and it never stops burning. Even in my sleep, it burns and haunts my dreams, even though my lumbar gets some rest at night; the thoracic is like a monster, and it keeps on burning. It makes my arms ache, my forearms. Also, my shoulders.
The pain in my lumbar is like a hot stabbing pain that gets HORRIBLE when I sit down. I cry and cry and howl and holler, scream in pain, when I sit. I have had numerous LESI's, which only made the pain worse. I had a discogram on my lumbar, to verify the torn and leaking discs. When the pain was so bad, I even tried facet joint injections, which were more torturous and painful than the discogram.
My lumbar pain has also made my legs ache and go numb and tingle. I have burning patches that appear and disappear on my outer thighs The skin is not red, it just suddenly burns like a bad bad scald, and then it stops. There is nothing to see. Weird. I used to only feel the burning at night, when I was laying down, and now it can come on suddenly any time of the day.
The doctors first noticed something was wrong 5 weeks ago when they tested the reflexes of my knees with their little rubber hammer. I have hyper reflexes, a clear indication of spinal cord injury. They raked metal sticks across the bottoms of my feet and got more indications and signals of spinal cord injury. My toes curled upwards, I think, instead of downwards. They tested my hands and made me try to walk on my tiptoes and the balls of my feet. I also had to do the heel to toe, which is difficult! How can anyone who has had a drink even do that???! (I don't drink at all, btw, but found that particular test very hard to do sober!)
No surgeon wants to operate one me, to remove the cyst, all claiming that it would most certainly do irreperable damage to my spinal cord. They have also told me I will most likely slowly become paralyzed. OR if I have a sudden fall, I am in very possible danger of paralyzing myself. I am scared out of my mind. I've talked to three surgeons so far. I've even tried to get help at the Mayo Clinic, but they don't take my insurance (Medicaid and Medicare) and they want $650 up front, just for the first visit, not including any tests I'm so depressed and scared and I do not go out at all anymore. Even grocery shopping is unbearable for me, and I have to rely on the bread and milk my husband gets us from the little corner store to tide us through the month. :( Even with a pantry stocked full of yummy cake mixes and canned goods, I cannot stand long enough without pain to even cook us a meal anymore. We are lucky if I can cook once a week now. Thank God for frozen meals and snacks. But I've put on weight, not being able to hardly move, walk, or get exercise. I am on the couch 80% of the day in tragic pain, crying and sobbing and feeling like I'm ready to commit suicide to get away from this pain. I have no family left, except for my mom and wonderful husband, no brothers or sisters or anyone left, my last uncle died 2 springs ago, and I've never had any children. There isn't much to give up on, you see? The pain makes you truly think about killing yourself.
I don't know what to do. The pain got so bad this week I was ready to beg mom to drive me to the Emergency Room. So yesterday I was at his office getting a Thoracic Epidural Steroid Injection (TESI) I did not get any relief all day or night, but when I got up this morning, my pain was down from the usual 10 to about a 8.75 or so. Yes, fractions are important at this point, lol. Now, 10 hours later, my pain is back up to a 9 and I am in serious pain again.
I do not smoke, or drink. I only eat a little too much, so I'm overweight. If I could just lose some weight, my center of balance would be better, safer for me. But how to lose it, when you can't even walk to the mailbox anymore? I am so sad and full of despair. My entire personality has changed in the past 2 years. I do not laugh or smile hardly anymore and I've cried from the pain every day for what seems like the past 2 solid months. It has ruined me. It is ruining my marriage. My poor husband and mother are besides themselves with worry and not knowing what to do to help me (there is nothing they can do) as I lay on their couches screaming and sobbing because the pain is so damn bad.
I am presscribed the following meds:
30 mg morphine sulfate, 3 times a day, slow release (isn't helping much)
10 mg Lortabs, up to six times a day (short relief 15 minutes after ingesting, only lasts about 20 minutes)
Celexa for depression NOT helping, I swear!
Ambien to sleep (If I run out of Ambien, I will take a couple of Benedryl--knocks me out in one hour flat)
Ativan or Valium for the anxiety (Valium works better)
Two different blood pressure meds (Lisinopril and Hydochlorot something or other)
Nortriptalin --spelling?-- (Pamelor) To try to soothe nerve endings, to help with pain. NOT helping. Gives me nightmares.
The doctors tell me the cyst is growing ON my spinal cord and that it is NOT in the spinal cord. There is a central canal that runs through the center of the cord itself-- I didn't realize this until I started researching and asking my doctors questions. If it gets IN there, I am screwed. On my MRI scans, you can definitely see HOW FAR my cord is being pushed against my spinal column wall. HOW these doctors can all claim that a cyst like this, that it does not OR CANNOT cause pain, well, they are WRONG. WRONG! WRONG! WRONG!!! My Neurologist is going to do a case study on me, and I am making sure he understands that whether he's read it in medical journals or not, whether he is Harvard educated (and he is) and no matter all of his schooling, he is not going to convince me that this cyst is NOT causing me enough miserable unrelenting pain, pain so bad, so constant, so fierce, that is has me thinking about ending my life to escape it. On top of the lumbar pain, it is just too much for me to bear.
Oh yes, one more indication of spinal cord damage was indicated when the doctors held my foot in a certain way and my foot went to bouncing up and down on it's own, as if they had pushed some magical button. I found it to be alarming. The symptoms and sensations from these ruptured leaking disks and this cyst have been everything strange, from the burning patches on the outside of my thighs, to what I'd swear to God was a real truly real wet sensation on the bottom of one foot that would come and go, whether I had shoes on, or was barefooted. I'd check, completely dry. Yet, the feeling was so real. It tricked me every time. You laugh at these little strange oddities at first. Then, they become unnerving. It's not so funny anymore. :*(
I was diagnosed 2 years ago with 2 prolapsed and leaking discs, L4-S1. The pain was intense at times, and over the past several months had gotten worse and worse. ( am a 42 year old woman, btw. The pain did not get any better and I bought myself an Aspen LSO brace, and I wear it a lot--it helps provide compression to my lumbar, which helps a lot. Until recently.... then the pain started increasing, upwards, into my thoracic region. After about 4 or 5 months of constant increasing pain, I finally sought out my third surgeon and got all new MRI scans. It had been 18 months since my last round of scans.
This time, even though I am in horrible pain in my lumbar region STILL, now they have found a very large arachnoidal cyst growing on my spinal cord, from T3- all the way to T8. It is like a burning, intense burning pain in my middle back and it never stops burning. Even in my sleep, it burns and haunts my dreams, even though my lumbar gets some rest at night; the thoracic is like a monster, and it keeps on burning. It makes my arms ache, my forearms. Also, my shoulders.
The pain in my lumbar is like a hot stabbing pain that gets HORRIBLE when I sit down. I cry and cry and howl and holler, scream in pain, when I sit. I have had numerous LESI's, which only made the pain worse. I had a discogram on my lumbar, to verify the torn and leaking discs. When the pain was so bad, I even tried facet joint injections, which were more torturous and painful than the discogram.
My lumbar pain has also made my legs ache and go numb and tingle. I have burning patches that appear and disappear on my outer thighs The skin is not red, it just suddenly burns like a bad bad scald, and then it stops. There is nothing to see. Weird. I used to only feel the burning at night, when I was laying down, and now it can come on suddenly any time of the day.
The doctors first noticed something was wrong 5 weeks ago when they tested the reflexes of my knees with their little rubber hammer. I have hyper reflexes, a clear indication of spinal cord injury. They raked metal sticks across the bottoms of my feet and got more indications and signals of spinal cord injury. My toes curled upwards, I think, instead of downwards. They tested my hands and made me try to walk on my tiptoes and the balls of my feet. I also had to do the heel to toe, which is difficult! How can anyone who has had a drink even do that???! (I don't drink at all, btw, but found that particular test very hard to do sober!)
No surgeon wants to operate one me, to remove the cyst, all claiming that it would most certainly do irreperable damage to my spinal cord. They have also told me I will most likely slowly become paralyzed. OR if I have a sudden fall, I am in very possible danger of paralyzing myself. I am scared out of my mind. I've talked to three surgeons so far. I've even tried to get help at the Mayo Clinic, but they don't take my insurance (Medicaid and Medicare) and they want $650 up front, just for the first visit, not including any tests I'm so depressed and scared and I do not go out at all anymore. Even grocery shopping is unbearable for me, and I have to rely on the bread and milk my husband gets us from the little corner store to tide us through the month. :( Even with a pantry stocked full of yummy cake mixes and canned goods, I cannot stand long enough without pain to even cook us a meal anymore. We are lucky if I can cook once a week now. Thank God for frozen meals and snacks. But I've put on weight, not being able to hardly move, walk, or get exercise. I am on the couch 80% of the day in tragic pain, crying and sobbing and feeling like I'm ready to commit suicide to get away from this pain. I have no family left, except for my mom and wonderful husband, no brothers or sisters or anyone left, my last uncle died 2 springs ago, and I've never had any children. There isn't much to give up on, you see? The pain makes you truly think about killing yourself.
I don't know what to do. The pain got so bad this week I was ready to beg mom to drive me to the Emergency Room. So yesterday I was at his office getting a Thoracic Epidural Steroid Injection (TESI) I did not get any relief all day or night, but when I got up this morning, my pain was down from the usual 10 to about a 8.75 or so. Yes, fractions are important at this point, lol. Now, 10 hours later, my pain is back up to a 9 and I am in serious pain again.
I do not smoke, or drink. I only eat a little too much, so I'm overweight. If I could just lose some weight, my center of balance would be better, safer for me. But how to lose it, when you can't even walk to the mailbox anymore? I am so sad and full of despair. My entire personality has changed in the past 2 years. I do not laugh or smile hardly anymore and I've cried from the pain every day for what seems like the past 2 solid months. It has ruined me. It is ruining my marriage. My poor husband and mother are besides themselves with worry and not knowing what to do to help me (there is nothing they can do) as I lay on their couches screaming and sobbing because the pain is so damn bad.
I am presscribed the following meds:
30 mg morphine sulfate, 3 times a day, slow release (isn't helping much)
10 mg Lortabs, up to six times a day (short relief 15 minutes after ingesting, only lasts about 20 minutes)
Celexa for depression NOT helping, I swear!
Ambien to sleep (If I run out of Ambien, I will take a couple of Benedryl--knocks me out in one hour flat)
Ativan or Valium for the anxiety (Valium works better)
Two different blood pressure meds (Lisinopril and Hydochlorot something or other)
Nortriptalin --spelling?-- (Pamelor) To try to soothe nerve endings, to help with pain. NOT helping. Gives me nightmares.
The doctors tell me the cyst is growing ON my spinal cord and that it is NOT in the spinal cord. There is a central canal that runs through the center of the cord itself-- I didn't realize this until I started researching and asking my doctors questions. If it gets IN there, I am screwed. On my MRI scans, you can definitely see HOW FAR my cord is being pushed against my spinal column wall. HOW these doctors can all claim that a cyst like this, that it does not OR CANNOT cause pain, well, they are WRONG. WRONG! WRONG! WRONG!!! My Neurologist is going to do a case study on me, and I am making sure he understands that whether he's read it in medical journals or not, whether he is Harvard educated (and he is) and no matter all of his schooling, he is not going to convince me that this cyst is NOT causing me enough miserable unrelenting pain, pain so bad, so constant, so fierce, that is has me thinking about ending my life to escape it. On top of the lumbar pain, it is just too much for me to bear.
Oh yes, one more indication of spinal cord damage was indicated when the doctors held my foot in a certain way and my foot went to bouncing up and down on it's own, as if they had pushed some magical button. I found it to be alarming. The symptoms and sensations from these ruptured leaking disks and this cyst have been everything strange, from the burning patches on the outside of my thighs, to what I'd swear to God was a real truly real wet sensation on the bottom of one foot that would come and go, whether I had shoes on, or was barefooted. I'd check, completely dry. Yet, the feeling was so real. It tricked me every time. You laugh at these little strange oddities at first. Then, they become unnerving. It's not so funny anymore. :*(
COMMUNITY LEADER
I posted the link just b4 ur last post on this thread-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
COMMUNITY LEADER
Here is a link-
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
COMMUNITY LEADER
Hi Molly...did u look at the list of Drs we have here?...scroll to the bottom of this page to the Health Pages and click on the link and look for the list of Chiari specialists...keep in mind, u do have to research all the Drs on the list as they may not all be true chiari specialists, but they did successfully treat a member of this forum.
I am sorry about ur Ins...I also had mine cut off PT yrs ago as my condition was considered chronic....so, if u have a chronic condition they won't cover u...great, what is ins for???
Do try to look at the list and do some research....
If u have questions, we r here : )
Hello everyone, it's been a while since I was here last. No, I have not seen a Chiari specialist, I've not been able to find one! I will be seeing a new surgeon soon though; I'm having a new MRI done at the end of this month to see how the cyst is doing, if its gotten bigger, smaller, whichever.... I'm very excited to find out!
My symptoms have not increased much, thank goodness. I did suffer a meltdown that landed me in a psych hospital this past August though. They took me off all of my pain meds (lortabs and morphine) and put me on Suboxone; it made my pain go from a 7-9 (on a scale of 1 - 10) down to a 1 or zero!! It has been a miracle drug for my pain! But I just got a letter from my ins. co. saying they will not pay for it anymore, so now I don't know what to do! I will keep you informed. Bless you all! Hope everyone is doing okay. ;-) ~Molly
My symptoms have not increased much, thank goodness. I did suffer a meltdown that landed me in a psych hospital this past August though. They took me off all of my pain meds (lortabs and morphine) and put me on Suboxone; it made my pain go from a 7-9 (on a scale of 1 - 10) down to a 1 or zero!! It has been a miracle drug for my pain! But I just got a letter from my ins. co. saying they will not pay for it anymore, so now I don't know what to do! I will keep you informed. Bless you all! Hope everyone is doing okay. ;-) ~Molly
COMMUNITY LEADER
Hi and welcome to the Chiari and Syringomyelia Forum.
Most times the care or lack of care is the result of being seen by Drs that r not experienced with chiari/syringomyelia and that is y we get what we have dubbed "The Royal Chiari Run Around"...once u find a Dr that is a true specialist u will see a difference.
Many times with a syrinx, they can not operate or place a shunt bcuz the syrinx is too small, but the way u describe urs it sounds large....do U also have Chiari?
Have u tried a true Chiari specialist?
"selma"
Hey there... so sorry to hear of your problems. I'm, unfortunately, in a very similar boat. SO much pain, so much increasing symptoms. I'm just waiting as each part of my body slowly begins to lose function (a tinglying/numbness started on my right thigh but now has spread down my entire leg, down my entire left leg.. and is now affecting my left arm). I have SEVERE headaches all day, everyday. Without medication, I'm absolutely unable to function at all - just simply shove my face in a pillow and vomit now and again. Pain killers have little affect. They tried about everything else, including all migraine meds, experimental ones, and even botox. Nothing. They tell me that my headaches CANNOT BE CAUSED by my syringomyelia, though my case is quite progressive and they recognize the impact so much that they "forced" me into disability.
My neurosurgeons refuse to operate until I lose the ability to be mobile. How much bullsh!t is that? From what I've read, when you get a symptom - it's generally permanent... you can only prevent further puralysis. I was 23 when diagnosed (and hospitalized for 9 days) and I'm now about 26 and it seems like nothing has changes, no matter how many doctors I go to.
In fact, my pyschiatrist recently retired and I was just "given" her replacement - who decidedly, without even reading my charts, is taking me off all my medications because I seem to be trapped in a "doctor seeking" condition or something like that. I have only seen doctors that I was referred to by my other specialists. Such B-S! I can't help but mention that he can barely speak or understand english. The person he replaced was considered one of the most recognized and educated, not to mention just a kind soul, out there.
The way syringomyelia/chiari is handled is so upsetting. I've read too many stories that are far too similar to mine. So sad. :( Good luck, friends. I'm here for anything I can provide.
My neurosurgeons refuse to operate until I lose the ability to be mobile. How much bullsh!t is that? From what I've read, when you get a symptom - it's generally permanent... you can only prevent further puralysis. I was 23 when diagnosed (and hospitalized for 9 days) and I'm now about 26 and it seems like nothing has changes, no matter how many doctors I go to.
In fact, my pyschiatrist recently retired and I was just "given" her replacement - who decidedly, without even reading my charts, is taking me off all my medications because I seem to be trapped in a "doctor seeking" condition or something like that. I have only seen doctors that I was referred to by my other specialists. Such B-S! I can't help but mention that he can barely speak or understand english. The person he replaced was considered one of the most recognized and educated, not to mention just a kind soul, out there.
The way syringomyelia/chiari is handled is so upsetting. I've read too many stories that are far too similar to mine. So sad. :( Good luck, friends. I'm here for anything I can provide.
Hi again everyone.
The cyst was acquired. I hae had the MRI scans of my brain done also, and no Chiari Malformation there. The surgeons all say surgery to remove the cyst is WAY too risky because of the damage the surgery could possibly do. One surgeon wants to play the wait and see game. He told me to come back to see him when I could no longer walk, bascially! Can you believe that!?!
Another surgeon suggested a shunt, but even that is risky, they say. Wait-and-see.
So thanks for everyone's support and encouragement.
The cyst was acquired. I hae had the MRI scans of my brain done also, and no Chiari Malformation there. The surgeons all say surgery to remove the cyst is WAY too risky because of the damage the surgery could possibly do. One surgeon wants to play the wait and see game. He told me to come back to see him when I could no longer walk, bascially! Can you believe that!?!
Another surgeon suggested a shunt, but even that is risky, they say. Wait-and-see.
So thanks for everyone's support and encouragement.
Well that would be a complete failure of your doctors if they let you become paralyzed! I dont understand why those surgeons would not absolutely have to remove the cyst that is causing your pains and syrinx. We are here for you, to get this off your chest. Many people in this community suffer from chronic pain, and we are here to help you deal with this. As hard as it is, you just have to keep on pushing the doctors back when they start to shove you out of the office.
In the mean time, try to watch a funny movie. Or read a good positive book. Laughing is important and smiling as well. Let your self just plunge into that other world and trying to put yourself in a different place. It might be only temporary, but good chemical's releasing into you and can help you. I hope you find some relief somehow. Thank you for sharing yourself with us! Stacey
In the mean time, try to watch a funny movie. Or read a good positive book. Laughing is important and smiling as well. Let your self just plunge into that other world and trying to put yourself in a different place. It might be only temporary, but good chemical's releasing into you and can help you. I hope you find some relief somehow. Thank you for sharing yourself with us! Stacey
Said a special prayer for you that He will ease your pain, give you the comfort you need and wisdom for your doctors to help. Remember with Him ALL things are possible.
COMMUNITY LEADER
Hi and welcome to the Chiari/Syringomyelia forum.
May I start with a question?...sorry, but did ur drs tell u if ur syrinx (cyst) was congenital or acquired?
One reason a syrinx may develop is a disruption is CSF flow, have u had a Brain MRI to see if u also have a chiari herniation that could be causing the flow issues.....many times u restore the flow and the syrinx shrinks.
If the syrinx is large enuff they can use a shunt or a stent....but I do not believe they remove them unless u r talking about something else.-http://www.medhelp.org/user_journals/show/205805/Differnt-types-of-syrinxs-and-shunts--article-by-DrJJane-Jr--MD?personal_page_id=197028
The above link is an article I placed in my journal for reference regarding shunts.
It is very important that u see a chiari specialist as they r very knowledgeable on syringomyelia too.
"selma"
May I start with a question?...sorry, but did ur drs tell u if ur syrinx (cyst) was congenital or acquired?
One reason a syrinx may develop is a disruption is CSF flow, have u had a Brain MRI to see if u also have a chiari herniation that could be causing the flow issues.....many times u restore the flow and the syrinx shrinks.
If the syrinx is large enuff they can use a shunt or a stent....but I do not believe they remove them unless u r talking about something else.-http://www.medhelp.org/user_journals/show/205805/Differnt-types-of-syrinxs-and-shunts--article-by-DrJJane-Jr--MD?personal_page_id=197028
The above link is an article I placed in my journal for reference regarding shunts.
It is very important that u see a chiari specialist as they r very knowledgeable on syringomyelia too.
"selma"
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