Hi,
I think this is something that is very hard to talk about because it is so rare. From my experience, my syrnix is very small and only causes problems once in awhile. And usually laying on a heating pad a couple of times a day helps. I don't even take meds for it. This makes it hard for me to say "I know how you feel" and things like that. Because I don't know how most people feel. And since mine isn't causing problems (yet), I joined this site to gain first hand knowledge. I am still learning about this rarity as well, so from that point of view, I feel that I can't offer advice, because I don't have any.
I do stop in every once in awhile and read the new messages.
Maybe discussions about everyday life may get things going. I think we need to find a common interest.
Now, if someone wants to talk about raising two young boys, one special needs, swimming, sailing, or gardening, or even some of my other problems (scoliosis, Tarlov Cysts)... I have a lot to offer.

I think we have all learned to just deal with our problems and go on. Since they are so rare and not many other people understand it is something we are use to keeping to ourselves.

Jen

I don't think you can say it's going to go away. My prgnosis is that it won't but it shouldn't get any worse.
I agree with Jen though that I find it hard to talk about it sometimes as on a day to day basis I see people who don't understand.
I'd love to just be able to write what I go through every day but worry it will make others focus on the negative if I'm not offering advice or answering a question.

I commend you guy`s for your honesty and in fact some of the time I don`t like to talk about it either. It is like right now I have written this post three or four times and nothing sounds right.I do try to support people that come on here because I know that they are hurting or just need some one to talk to.And yes some of the time I vent about what is going on with me and my doctors.I try to be positive but some of the time I say things that I probably should have kept it to myself when I am hurting.Sorry if I offended anyone.I have been living in pain since my wreck in 1992 and can`t get the doctors to understand that I don`t want to be so doped up that I can`t function.And with some of them that means no med`s at all.I know that on the days that I am real bad I don`t say anything and there are times that I have to take a week or two to compose myself enough to even send hugs to my friends here.It is not because of them believe me.Some times I don`t know how my wife puts up with me.

I would like to talk about SM. I had a decompression in June 06 and a 2nd surgery to remove internal scar tissue in August 07. Upon waking from the 2nd surgery, I spent 5 weeks relearning my body, which had a decrease in sensation from the neck down, and relearning how to walk and care for myself. I had another MRI about a month ago. My surgeon says the CSF is flowing properly, but my Syrinx is now the concern. He sent me home and told me to come back in 6 months for another MRI. I wake up every morning now with just a little more nerve damage. It's really scary because the fact that I'm walking right now is a miracle. One doc said that if the damage to my spinal cord & brain had occurred in a single accident instead of over time, I would be a quadriplegic w/ no chance of recovery. But if things keep going the way they are, I might be there before I hit that 6 month mark. It's difficult to get answers on what procedures and remedies work, or even what's available. I want to know if surgery is the only option or if there's something I can be doing today to help slow the progression?!

Casey,I don`t know of any other options for a syrnx other than what my NS told me and that is to have MRI`s done every year to check the progression.And if it gets to big then they suggested that I have more surgeries.My problem is that when I had the first surgery I was in Denver and now I am in a small town in New Mexico and my first NS moved to California before I had my last appointment.The one that I saw after that said that I should get a NS down here to be on board just in case that I need more surgeries but the one that they sent me to can`t get it through his head that I am not looking for him to do surgery but I needed him to Know about my case and be able to do surgery if I need it in the future.I found out later by his assistant that he didn`t want to see me because I had already had one surgery and he didn`t do it.Funny thing was he dosen`t do the surgery himself but he would have to refer me to one in either Huston or New York,so I never understood his problem with seeing me in the first place.

Hi,
It's me again. I am going to try to make an effort to reply more.

Casey (and others in the same situation), I just can't even wrap my mind around what you are going through. (That's one reason I don't post much - because I don't know what it is like) It just stunns me to think of someone who is waking up each day with more and more nerve damage. For someone to say that in 6 months they may not be able to walk. You see it happen to people on TV and such, but in the back of your mind you think "that's just on TV" and keep it at that. I saw something about how the inventor of the stationary bike is suffering from ALS and thought to myself "Wow, this guy who wanted to stay healthy now can't move and it's not his fault. I am glad it is not me. I couldn't imagine that happening to me." But here you (and others) are, people that I can *talk* to suffering. I will keep all of you in my thoughts. Keep us updated on how you are doing. And I speek for myself, but probably others as well, if there is anything I can do for anyone, please let me know.

I am sorry you have to suffer.

Jen

Hi,it`s me agian.I hope that I didn`t offend any one when I posted this subject about talking to each other.It was not my intention to make any one mad or unconfortable.I just think that it does every one good to discuss what is going on with them and where they are with this rare disorder.The more you talk about it then maybe more we can learn(not saying that I am any kind of a doctor or any thing like that).I know that every case is different ans mine is different than that of Casey or Sailor Jen`s.Maybe there is a doctor or med student looking in and finding out that we are real people and that this disorder needs to be looked into with fresh insights and new prespectives.Not saying that that is happening either it might be but I don`t really know.I did think that we need to talk more.And I still do,so talk away that is why we are here isn`t it.

I was doing some online research last night and found a site on stem cells. There's a place called the X-Cell Center in Germany that uses your own cells, taken from hip bone marrow. Has anyone heard about procedures like this and if it can help repair damage incurred from Syringomyelia? Apart from surgery, which only stops progression, there isn't anything else that I've found that will help repair or reverse any damage. Sometimes I feel like I'm grasping at straws and looking for anything that looks potentially helpful, so I want to make sure that I don't get my hopes up before verifying medical claims...:)

Monte - I often feel the need to vent about sm. I think sometimes we do just need to say whats going on rather than hiding it.
Jen - Nobody can know exactly how someone else feels but we all have an understanding of what the others are going hrough in some way, if that makes sense. I have really good days and really, really bad days. What I see as a good day though would be very different to what someone else judges as a good day.
I too don't take pain meds (only when I'm in hospital and they make me.)
You don't have to be able to give advice just share your experience of the condition if you want too.
Casey- I have never heard of any kind of treatment like that but then I haven't really looked. Decompression surgery did stop the increase of my pain through nerve damage and I consider myself to be extremely blessed that it hadn't progressed massively in the 3 years it took to diagnose.

Casey,I too have not heard any thing about that type of treatment but then agian I can`t even find a good NS in my area.I don`t know what has been going on in neuro surgery or even the treatments that have came out in the last 2 years.I so need to find a good NS that is as up to date as the one that did my surgery.

Monte, Are you close to Colorado? Isn't there a Chiari facility in Aurora? I don't know if that's an option for you... I see Dr Arnold Menezes at the University of Iowa. I guess he's a leading expert in Chiari Malformation, so I'm assuming he's equally qualified in SM, as it is a common counterpart. But I still get the feeling sometimes that I'm being used as a guinea pig, especially when my quality of life is diminishing by the day and I'm told to come back in 6 months.

I've been doing some research on the SM surgeries. Do they normally use a shunt? I've heard mixed reviews. Does anyone know where there is some statistical information on the success rates and the mean length of time a successful surgery can give someone? I just had an extremely traumatic surgery 1 1/2 yrs ago and I'm making sure this is right for me instead of asking "how high?" when the surgeon says "jump".

Btw, I just saw a chiropractor who does Applied Kenesiology today. I feel better already! None of my numbness has reversed, but the gentle pressure he applied made me feel like my balance wasn't as compromised and my pain levels are down! He's seeing two other patients, one with a recent Chiari decompression and another with Syrinx. He said both are seeing positive results. I'll keep you informed...

Casey,I am 500 miles away from Denver.I don`t know about the Chiari facility but we moved away from there in 2006 so they could have one there now.The one that I went to is/was in Littelton,Co.sort of in the middle of that mess they call Denver Metro on the southern side of the city where Aurora is more on the South east side.Either way it is still 500 miles away and I can`t drive that far anymore and can`t afford to fly.We do have Brendas Brother still living in Monument,Co.about 40 miles south of Denver so if I do get to go back I could stay with them and go back and forth to the doctors office.
The part about going to a chiro sounds interesting,I was going to one when I found out that I had the SM but my Ns told me that all that he was doing was further damage.But he was doing adjustments to my back to see if I could get any relief that way.It sounds like your chrio is doing accu-pressure,tell me if I am wrong because I don`t know.Do let me know because I need to find some one that can relieve the pain in my back and I have been to the pain clinic and that did nothing at all for me.I was also doing that when they found the SM and they canceled all of my appointments(the doc was in the same practice as my NS).But I did go to one in Lubbock,Tx.and still didn`t get any relief so I have exhausted that way of treating it so who knows maybe what you are doing is the right thing for me to try next.
As far as putting the shunt in I don`t know if that is what is normal for them to do but in my case when they cut the sack surrounding the spinal cord they waited for 30minutes to see if it would drain on it`s own and because it didn`t they went ahead an put the shunt in and just drained it into the out side lining of the spinal cord.I thought that was a crazy thing for them to do but they said that I had already been in surgery for 8 hours before the got the shunt in place so they didn`t want me to have to go through any more surgery to put the drain all the way into my stomach.I guess I was having a hard time with the anathyesia so the put the shunt in and watched it drain and closed me up.As it is I had a bad reaction to the anathesia and was very sick for four day`s.I was supposed to be in and out of the hospital in 2 day`s but they would not release me until I had stopped being sick for at least one day.I finally got to go home on the 6th day.
I do understand what you said about not just jumping at every thing that the NS say`s.In my case I didn`t have much choice at the time,but now that I have had time to check things out I go more slowly and ask a lot of questions and get second opinions even if I go to my GP anymore.

I was told not to go to chiro's also, but I am desperate and this guy isn't like any chiro I've ever been to. He just uses his thumb to kind of put pressure on the muscles, not cracking the joints, but allowing the body to react to the pressure and make the adjustment itself. It was most similar to massage therapy, only he focused on specific areas, not the whole back. He doesn't crack or snap your back and he definitely doesn't use traction, which is a Chiarian's nightmare! He also did this thing where he simultaneously stimulated the dura at the base of my neck and the tailbone. He said sometimes the dura gets kind of twisted (not exactly, but similar to tethered cord syndrome) and the CSF can't flow properly. And he was pretty realistic about not being able to cure me, but possibly slow the progression, which is all surgery would do.

It's different than acupuncture. Acupuncture uses very fine needles that are inserted into specific areas of the body. I've tried that and it helped me as well, but the cost is more for an acupuncture treatment. I think acupuncture was actually the best at relieving my pain, though. Sometimes you can find chiro's that will do acupuncture also, and their fees might be lower than going to a clinic. I had my first acupuncture a couple of months ago and it was the only thing that has actually alleviated my pain at all since my last surgery. Too bad insurance won't cover all of the good treatments ;(

Monte, how far are you from Albuquerque? Is that an option for you? I don't drive anymore, either, so I know how distance is a huge hurdle. Hope someone comes your way!!

Casey,I am 240miles away from Albaqurque which is closer but then I have to find a new NS and get them to see me if they agree to it.I don`t think that they will because of all the others saying that they don`t want patients that have already had surgery,still can`t figure that one out.But they don`t tell you that until you are already there and have had a prelimanary exam and they look at the MRI`s and all of the doctors notes.The whole thing is so frustrating and dosen`t make any kind of sence at all.I don`t know maybe I have just went to the wrong NS but you would think that it wouldn`t make any difference if I have had surgery or not.
The one thing I think that you missed was not Acupuncture but acupressure,I think that is more like what you had done they just call it Kenesology instead.I do agree that massage is great for relieving the pain and muscle tension but I can only get that for short periods,a week here and there but nothing that is over a period of months(Insurance won`t pay for it).
I did talk to my Dad last night and he told me he dosen`t know of any one here that does Keneseology(sp).I guess that I am going to have to let my fingers do the walking through the phone book and see if I can find one.It still sounds like it would be great to see if it works.Keep us posted on how it works for you.

Oops! Right, it is like acupressure! I haven't found anything yet that works for more than a few days either. But I did get a call from my surgeon's office and they are going to see me on May 8th for another MRI and doc visit! Much better than waiting until August! Well, I hope you can find someone in your area. I'm lucky that I live in a college town, so there's a variety of alternative practices available. That sucks about the NS's responses to previous surgeries. I hope that works out too...:)