I had chiari surgeory 8 years ago. I had a syrinx but it didnt go away. I've been in chronic pain every since then. Friday I find out my syrinx has gotten larger just in the past year. I was just wondering what to expect when I go to the nuerologist. What will they do to get rid of the syrinx?
My neck down my spine to the middle of my back is stiff and in great pain. Espeically when I do anything like just washing dishes or sitting here typing. I'm getting a block on Tues. Been upset since found out about the syrinx enlarging.
My neurosurgeon said it would probably go away on its own after I had the Chiari surgeory but it did not. All the dr.s kept saying that a syrinx doesnt cause pain when thatt was the only thing they could find wrong with me. So 8 years later my orthopedic discovered that it has indeed grown over the past year. Why would all the dr.s say it doesnt cause pain when all I’ve read up on says that it can. Frustrating! Wonder if they will have to do surgeory on the syrinx, surely they wont do another Chiari sugeory? I pray not cause that was awful!
Susan Erickson said:
Tracy,
There has been some different debate when it comes to this but from the best I understand is that the syrinx is also part of the chiari and should've been addressed when you had your decompression surgery and honestly, not sure the Neurologist can do anything other than refer you to the Neurosurgeon.....I'm afraid it may just be another surgery to repair the syrinx and as I said, I could very well be wrong since I didn't have a syrinx but I don't understand why if you had the syrinx when you
Also, I will do some more research on this topic and see what I can find for facts and experiences for you.....Hang in there....I know it's scary and especially when it's the "UNknown" of what to expect or why things are this way but I will do some research and look for other members who may have the same experience for you too....
I had the decompression, why did the surgeon not take care of it when they did the decompression???? Just curious....
Well, my orthopedic told me to go to a nuerologist. I’ve had this pain since my chiari surgeory in 02. I’ve seen all kinds of dr.s and everone says the syrinx isnt my problem until now when my orthopedic saw that mine has grown in the past year alone. Of course before he saw that he says the syrinx doesnt cause pain as did my nuerosurgeon. Whatever!
Susan Erickson said:
I totally understand your frustration with that one Tracy....One of the Webinars on the Main Page, I recommend watching it's called "All the Questions you want to ask but didn't about Chiari Part II" (I may be off on the name but it's on the main page) It goes into more detail about the Syrinx and how it's fixed etc.....Since I didn't have a Syrinx, I wish I could give you a better answer.....I can relate to the frustration....As, I believe that I may be part of the 20% that the surgery didn't help....My headaches are not getting any better and that's the one thing it should've at least done and the thought of going through this surgery again....Scares the crap out of me....So, trust me, the thought of having this surgery again....Scares me very, very very bad.....I have done some looking with the Syrinx and I agree with you, with the research it shows that it is very painful when you have a Syrinx.....I don't know why they wouldn't have addressed your syrinx when they did the decompression.....The only reason I would think is maybe the surgeon didn't know enough about it or maybe they knew even less about our condition back then. Or, every surgeon has a different level of knowledge when it comes to Chiari and then it's the reason that all of us are different....Each and every one of us......So, it could be he did what typically worked but as individuals, our responses, even to surgery are as different as each of us are......What works for me, may not work at all for you and vice versa......So, it's hard to say but I do know this:
I'd get a referral, if you need one but start finding a NS in your area that you can talk to....A Neurologist and especially an Orthopedica is NOT going to have the knowledge about how the syrinx is fixed so my recommendation would be to see a Neurosurgeon since they're the ones that do the surgery, it also could be that they did not remove enough bone so that the fluid can flow correctly for the syrinx to heal and close up.....From my understanding is that when they remove bone etc with the decompression, it helps the fluid flow better and the syrinx heals and closes back up....My wording is probably a bit off but I'd certainly be looking for a Neurosurgeon to speak to about this, NOT an Orthopedic, it's not something they do surgery on....Same with a Neurologist.....I'd at least talk to a Neurosurgeon and see what he has to say about it.....For those of us with Chiari, there is always A POSSIBILITY, NOT A CERTAINTY that we may have to have surgery again.....It really depends on symptoms and the surgeon and our bodies do change over time also so it could be that maybe it was better for a while and could get worse....The Chiari NEVER goes aways and it is a PROGRESSIVE NEUROLOGICAL DISORGER......Progressive, meaning it will progress, it just a matter of when NOT IF....WHEN....And I don't say any of this to scare you in any way at all....Just personally, think it's a good idea to find a new Neurosurgeon and go see him with your test results and give him your history, let him do an exam and that will be the best opinion that you will be able to get as far as what is going on.........At least then, you can get current information from the person who DOES and WILL handle this area as well as what is going on with you right now.....Just my suggestion but sounds like you need a NS to take a look at what is going on with you NOW......
Hope this helps and I will keep looking for more information for you.....
Hey Susan, Found this. It also says to find a nuerosurgeon whohm specializes in syrinx. Thanks for your help.
HOW IS SYRINGOMYELIA TREATED?
The only treatment for syringomyelia is surgery. However, surgery is only recommended when the condition is severe enough. When this is the case, the first step is to find a neurosurgeon that specializes in syringomyelia. A neurosurgeon is a doctor that operates on the spine, brain, and/or nerves outside the brain and spine. The surgery is done to correct the condition that caused the syringomyelia. For example, if syringomyelia is due to Chiari's malformation (see above for description), the goal is to provide more space for the cerebellum in the back of the skull and in the upper neck area. By doing this, the flow of cerebrospinal fluid returns to normal. This causes the fluid-filled space that is characteristic of syringomyelia to flatten out or disappear.
In some cases, to get rid of the fluid-filled space, a flexible tube called a shunt can be placed inside of it. From here, the tube will drain the extra fluid into the space between layers that line the belly. The fluid will then be absorbed along the wall of the belly. If surgery succeeds, it will usually stop the condition from getting worse and possibly help to moderately decrease the symptoms. Unfortunately, over time, surgery is not always successful and more than one surgery may be needed. In cases in which surgery is not needed, the patient needs to be monitored often by the treating doctor with physical examinations and scans of the spine.
Hey, I found a nuerosurgeon on line that sounds good. A friend of mine even said her mom used him and he was good. He is board certified and I checked him out. I feel good about him. Now tomorrow when I go get my epideral at 6:15am I’m gonna give his name to my dr. and get a referrel for him. Thanks for all your prayers!!
Susan Erickson said:
Tracy,
You ABSALUTELY, WITHOUT A DOUBT, NEED TO SEE/FIND ANOTHER NEUROSURGEON WHO HAS A CLUE HOW TO TREAT THIS.....SUCCESSFULLY!!!!
It causes REAL pain, and can actually cause pain, EVEN AFTER it's fixed........Abby is right, Jolene does have some great knowledge and experience that will help alot.....and she is the sweetest woman......(Shout Out Jolene....MY GIRL) She is wonderful and has alot of information on this also....
All the stuff I've read is this should be dealt with also a Neurosurgeon who has at least treated patients with Syringomyelia before as well as the decompression surgery as they are so often treated together, more times that not.......
I'm sure that there is a NS close enough to you, unless you live in a fairly small town, that will have this experience.....You can look up on the Board Certification in Neurosurgery....Any NS on that list should have the necessary experience, according to my NS, I called and spoke to MY NS's Nurse and that was her recommendation and she also said you need to DEFINITELY get it looked at and treated......NOT to let it go and ignore it....
Sorry, wish I could pull up a name or something for you.....
I will help with anything I can, saying many prayers for you....I know you will find the right NS to help with this!!!
Thanks Carla, so far I feel worse after the block. I have felt worse altogether since the chiari surgeory. I’m losing hope.
Carla Stone said:
Wow, that sounds really serious. I have had the chiari surgery and lucky enough to not have a syrinx. I wish I could tell you what they will do, but I don't know. I do understand being in constant pain though. I fell into that 20% that are worse off after their surgery. I also have a shunt that helps to drain fluid.
I pray that the block will help. At least it may offer temporary relief from the pain until you see the neurologist and they figure out how to best help you.I am confident that everything will turn out okay:)
I have not had a block done in my back or neck. I had to have shots in my head in the nerves that was causing me problems that were cut thru during the chiari surgeory. It’s been a couple of years from that. I had pain from the base of my neck going up over my head into my eyebrow that would stop me in my tracks and make me think I was about to dy. Then my tongue would like get a big cramp in it. Wierd but the shots helped that. I feel somewhat better today. still stiff but I can turn my head better. Just didnt know it would hurt this bad. I’ll be ok
Carla Stone said:
Tracy, please dont give up hope! I do truly understand. I have felt worse since my chiari surgery too. Maybe the block will just take some time and start working soon. Have you ever had a block before? I hope the neurosurgeon has an answer for you. Even if it is surgery, if it will get rid of the pain, it will be worth it. Hang in there, friend. I am praying for you:)
Tracy said:
Thanks Carla, so far I feel worse after the block. I have felt worse altogether since the chiari surgeory. I'm losing hope.
Carla Stone said:
Wow, that sounds really serious. I have had the chiari surgery and lucky enough to not have a syrinx. I wish I could tell you what they will do, but I don't know. I do understand being in constant pain though. I fell into that 20% that are worse off after their surgery. I also have a shunt that helps to drain fluid.
I pray that the block will help. At least it may offer temporary relief from the pain until you see the neurologist and they figure out how to best help you.I am confident that everything will turn out okay:)
Thanks Susan, I guess I just wasnt expecting so much pain. But like I told Carla I'm better this morning than yesterday. Still stiff and in pain but tolerable . The dr.s I see dont want to give pain meds so I"ve been doing all this without meds. Plus I dont want to take them cause I have to take care of my daughter that has Down Syndrome and Diabetes. So I havee to give her meds and 4 shots a day. I dont want to forget a shot or give her the wrong amount.
I think I will go back to my orginal nuerosurgeon. I talked with nurses yesterday and according to them he is the best. So, like I chose last time the best over a bed side manner. They chose him to fly to Washington to operate on Ronald Reagan when he got shot. He did surgoery on my uncle and got the tumor out of his brain. things I heard about him were just rumors so I my as well go back.
Thanks you Susan Erickson said:
Tracy,
DON'T LOSE HOPE....IT'S ALL WE HAVE TO PUSH FORWARD WITH....We are ALL here for you to support you.....If the surgery has kept you from being permanently paralyzed, THAT IS A SUCCESS....If you still have use of your arms and legs (even though it may hurt), that is still a SURGICAL SUCCESS.....The Chiari Surgery only offers two guarantees......
1. That they will open up more space in your head to aleviate the pressure pain in your head/neck......(Sometimes, which I think is my case, they didn't take enough, which may require a 2nd surgery and as bad as I DON'T WANNA GO THROUGH IT AGAIN......I'd MUCH rather they not take enough THAN TAKE TOO MUCH.....B/c then they can't go back and fix it.......
2. The second point of the surgery is to SLOW DOWN THE PROGRESSION OF SYMPTOMS AND STOP PARALYSIS....So, as I said, your still walking, just like me....Even though we are in constant pain....As Carla, I also believe I'm either in the 20% surgery does not work for (and they don't know why for 20% it doesn't work) or they didn't remove enough skull/bone to relieve the pressure but they did stop the progression of paralysis I was having......
It's EXTREMELY FRUSTRATING TO BE IN CONSTANT PAIN.....THAT, MY FRIEND, UNFORTUNATELY I UNDERSTAND VERY, VERY, VERY WELL AS I LIVE WITH IT EVERYDAY AND HAVE FOR 20+ YEARS....It's only been really, really, really, really, really bad since August when I left work on STD, but it's been enough pain that they've had me on strong pain meds for pretty much at least 5 years, which sort of works against me b/c my body is soooooo toleratant to pain meds and most others too....IT SUCKS.....I've been through the epidural and tens units and all of that for my back and NONE of it helped just with my back alone so I know that isn't even an option for me, I've been thru the pain patches and all the other pain mgmt out there so there really is nothing left for me.....I learn to deal with the pain, they give me the strongest stuff they can and send me on my way, somedays I can handle it and some not so much.....So, please do NOT give up hope....I have extremely frustrating days, when I lay here and cry and get upset and go round and round with the "WHY???" "WHATS THE POINT OF THIS?" Etc. Etc. Etc.......Then, I also know you have faith, that is when you have to use that power of prayer and turn it there......You WILL find relief there and you WILL find relief HERE....With your friends who go through the same things day in and day out....We go through it with you, We go through the same frustrations and pains and stupid doctors and dismissals and blow offs that make you want to have a melt down....Trust me, my friend, I'm THERE WITH YOU.......
I will keep you in my prayers as always.....I am hoping your just extra sensitive, I know the pain was worse the day I got my first epidural, it did ease after a few days and I'm hoping that is your case too.....I will keep you in my thoughts and prayers friend....If you want to vent, just let me know and I will private message you my number and you can always vent to me....