I have been diagnosed w/ SM. My doctors seem like it's no big deal let's follow up in a year. Ok, I'd like to know what to expect is going to happen to me five, ten years from now. I'm already dealing with chronic pain all over my body but mainly the back of my neck, back, and hips, headaches everyday, and a whole bunch of other contributing factors. The doctors basicly told me to take an anti-depressant / pain med & a muscle relaxer. One doc said that my cervical syrinx isn't why I'm in pain... (I could have sworn that I read that in the symptoms before) No one seems to care or thinks I should worry about it. Maybe I just want to be aware of all possibilities. And, I'd like to talk to someone with similar problems as mine, or someone with some knowledge on the subject. Thanks

My suggestion is to seek out a good neurologist in a large city. I live in Massachusetts so when I had my cervical spinal cord tumor removed in 01" I went to Boston to see the best doctors. I have been left with a very large srinx that has caused constant issues and is getting progressively worse. It is a rare disorder that most doctors really know nothing about but think they do and then send you home like yours did. Get a second opinion on how to treat it is my suggestion.

I just got this reply.... I'm not sure when you posted it - but thanks. The second Dr. I went to has now retired because of his own medical problems. He was much older. So I had to go back to my first neurologist. I don't haven't been seen for it since august of 09 but I'm going to see him in feb. Maybe my MRI will show that there hasn't been any change. Either way, I know that there's nothing they can do except surgery and can sometimes make it worse, so I've heard. I just wonder if it has any affect on my respiratory and/or nervous system cuz it seems like a lot of my problems may be coming from an underlying condition - one that the docs cannot find a reason for all my anxiety and nervous problems... I think it's the SM.

*Ok.. I see now this was posted 9months ago! I don't remember getting an update. Well... at least I've updated my profile and remember now what this site was for.

I have been diagnosed with a syrinx for a few years now. For some reason, it really does seem like doctors don't like to admit they might not know much about a certain subject. If it was me, i would tell the truth and admit i lacked much knowledge. I'd definitely rather hear that than have someone tell me my vertigo, headaches and pain (that are debilitating, thanks much, doc) are psychosomatic or non-existent. EnlightenMe? I really hope you are diligent in trying to obtain help/treatment. When i first got my MRI report that stated i had a cervical syrinx, my family doctor said my MRI was "totally normal". I am so glad i happened to request a copy of it myself. I asked doc what a syrinx was and he said he hadn't even noticed it on the report. =( Had tons of high-expectations and confidence then! Sorry, had to vent. Anyhoo--good luck and pain-free days to all!

Do you know where your syrinx is located? I think mine is from c6 to t1 or something like that from last year. I have been on the asap website for a long time and researched this for a while... from everything i've read and have been told, it seems that the only thing they can do is pump more meds in you or eventually operate if it gets bad enough. My neuro acts like it is nothing to worry about at all. That seems crazy to me because everyone else who has one thinks that's insane. But I'm here and I'm not crippled yet so I guess I'm fine.... I don't know. The pain in my neck in back is so bad that I don't even think it's from the syrinx itself - but probably has something to do with the headaches and the pressure and other weird sensations. I have to wait until feb now just to see him when i had an appointment that i canceled november 10th just because the receptionist was being so rude. I just felt like giving up and not caring about it anymore.... then I decided that it's not going to go away, duh. Well.. I have been told to see a neurosurgeon; not sure why. But that's the advice that has been given to me. I haven't found one yet. They also said don't let them operate on you though...??? It's just confusing and nothing even helps anyway. I'll never be pain free... I don't know too many people who are though. Good luck to you and thanks for your reply.

Your friend probably said that due to risk of anasthesia-related complications any time you have surgery and also possible paralysis from spinal cord surgery. I don't know though, because when i was first diagnosed surgery wasn't worth the risk as i was not as symptomatic as i am currently. Now though, i would probably be willing to risk paralysis in exchange for some relief from everything. Without insurance, i don't know exactly if my syrinx has expanded/elongated or if i "just" have nerve damage. ?? When it was measured at the time of my 2007 MRI, it was only 18mm from C5-C7 and 3-5mm in diameter. Darned thing's so small it isn't comprehensible for it to be so troublesome! =( Well, i guess it is because the average diameter of the spinal cord is only 12mm. And, EnlightenMe--don't let doctors that don't know of syringomyelia tell you it is no big deal. And try to get a second opinion no matter what comes of your neurosurgeon appointment, k? =) Kinda bossy, aren't i? Sorry!

lol... No, you're good :) and Thanks for the reply. Good luck 2you and feel free to write more. It's nice to hear from someone.

I know the postings prior to mine are a little old. I posted in a different topic area a couple of days ago and just read this one. EnlightenMe, your journey thru the medical world sounds like mine. I'm wondering if you have found any help, or are they still trying to push the anti-depressants on you? I'm sure a good percentage of our population is on anti-depressants as is my experience that unless you're dieing, they'd rather you keep quiet and just eat the pills. I've had cancer too, so I know they push then also. Anyway..I'm venting again, just so frustrated that none of them listen and no one will give an answer and I am in so much pain. I'd like an answer rather than a new pill.

Gabrielle, do you also have SM? Just wondering if you could share a little about it. I have pretty much given up on trying to sort it out. I believe, they aren't going to be able to do anything for it - except push a pill, unless they have to operate and that is not going to happen. I don't think they operate until it gets so bad and it could do the opposite of help. Seems like that is what I have read anyway. I think, basically, exercise and nutrition would help a lot of things. I'm not even sure anymore if my syrinx causes me any pain or abnormalities. How are you doing as far as the cancer goes? Its nice to vent and have others to "talk" to. I hardly ever get on my computer anymore but will try to check it more often. Nice to see some people still posting to this though:)

Hi EnlightenMe, I was dx with SM about 4 years ago. My symptoms have been getting worse since I had a MVA last year. It is very frustrating having the doctors not know much about this. I even took a printed copy of a web site from the Mayo Clinic to my last visit. They just stuffed it in their file. I don't believe there are many doctors out there that truly give a crap anymore. I am also among the under-insured so, I'm not a very lucrative contract for them. I'm sorry you haven't found any help, I'm glad your syrinx is not causing much pain and I hope it stays that way. The cancer is hopefully in remission. I can't afford to see an oncologist and run all the tests they like. As long as I'm above ground and walking, it's a good thing! :-) Just disappointed in the medical world overall. Stay well and thank you for answering my post!

I went throught the crazy limbo of doctors too. Finally I found a spine specialist at UAB who knew what I had and he sent me to a Neurologist. The neurologist, Dr.Prittchard knew exactly what a cyst was and he was very clear that my pains were real and that too stop being in denile about them. Because after all the doctors I had seen I really believe that I was faking my pains. He put me on Gabapetin and worked me up to 1800 mg. He said he can go up to 3600mg. It took a week or two and I finally could move my shoulders and have some relief for the headaches that were in the back of my skull. He also gave me Tramadol for the body pains. He said that since the cyst is only 5mm in diam. that he was not ready for talks about surgery. I have another MRI in December. I know it is depressing to find out about this disease, but it is also rewarding to have a name for it and know that my doctor really cares about this disease. I have had moments where I cry and there are days I can not really function without the help of other family members. But I am glad I joined this group I need to know that I am not the only one in the world in pain.

Hi Mandee, I'm glad that you found someone to help! My neurologist insists the pain is not from the syrinx. I am getting set up for epidural cortisone shots in my neck. If anyone has any experience with this, I would love to hear it. I also have days or times where I just cry. But..you can only do that for so long. It's just all so aggravating. Keep us up to date on how you do. I think we can all learn from each other. Especially given that we are in a group called "Rare Share" Oh boy. :-) Stay well!! Gabrielle

Gabrielle, I have a friend who gets the epidural cortizone shots, she said it hurts more, but I hope it is effective with your pain. I know she says after she has it she has to lay around for awhile. The unfortunate thing is these cyst are destorying our spinal cords. I just hate we have no true cure. Do you have any numbness? What about your muscle movement? I was told to excerise, but I am so drained with hurting that I don't even want to do it. Also I am curious about getting on social security. I have already been denied. I have been waiting 15 months to get an appeal court date. Still no word from social security. I just could not believe I had been denied. Well keep me up to date. I am glad I have someone to speak to. Thank you!

Hello Everyone, I have just joined and read your posts. I was ill for eleven years and found out this year that I have sm. I was told after I have been diagnosed with multitudes of symptoms related to the disease and collapsed in public, that I was symptom free by the neurosurgeon. I was shocked and new there had to be more to the story. So I investigated. I am lead to understand that doctors do not want to diagnose any disease that may be related to a law suit. Imagine that! My injury was sustained while giving birth to my daughter by the doctor who gave me an epidural. All of the doctors that I had been seeing for eleven years were part of the same affiliation and they tried to tell me that my symptoms were all in my head also. I was diagnosed at a different hospital and was very angry with the many doctors that I had seen after going through many tests and still was undiagnosed. Look up a Dr. Radar and his research in stem cells. This could be the miracle we are all praying for. I would love feedback as I am still trying to decide for myself if I want to try this. Until then, I feel less alone then I did before now that I have found this community. Blessings to all!

Mandee, Do mind sharing the name of your doctor in Alabama? I'm in Columbus, GA, about to go to Emory next month. I'm trying to make a little list of doctors for myself in order to treat my SM and ACM without traveling too far. Thanks and to the others, didn't mean to hyjack this.

Yes, the neurosurgeons name is Dr. Patrick R. Pritchard. He is located at UAB Neurology Outpatient Clinic, which is on the 5th floor of the Kirkland Clinic. Address is 2000 6th Ave S. Make sure you get a referrel...call 205-801-8986. I hope you get an opportunity to get some answers.

Also Benellisig...what doctor scheduled the Brain MRI? I know after I found out about my SM Dr. Pritchard schedule another MRI to see if the cyst was created by a tumor. He seemed pretty confident about tackling that situation if that was the case. But there was no tumor. I worked in Columbus, Ga. in 2006 for PacSun so I know it is aggravating to travel. My thoughts are with you.

To DebDeb...wow that is awful you have been pretty much brainwashed for 11 years. Those doctors should be ashamed with their careless attitudes. So with the disease progressing during that time where are you at with your symptoms? Have you found a doctor now that is willing to assist in your symptoms? Please tell more if you would like to...no pressure. But I am glad you have joined!

Hi Mandee, After investigating and coming to the realization that the neurosurgeon was saying I had no symptoms( because if I have no symptoms I have no law suit), I sent him a detailed list of my symptoms and a copy of medical records that gave different related diagnoses and sent it certified to his office. I was immediately contacted by his staff and he asked to see me again. When I saw him again he referred me for pain management and physical therapy. I have contacted government agencies for spinal cord injuries and my insurance referred me to a Dr. Radar who is doing stem cell replacement out of the country. I am not a candidate for surgery at this point. My symptoms range from extreme pain that is constant in the lower middle of my back and radiates up to the back of my head and over to my shoulders and down to the very lower tail bone area and sometimes down either of the back of my legs. I have spasms and tremors all over and extreme headaches. I am only able to stand for short periods of time and sitting is uncomfortable also. Laying seems to be the most comfortable position, but not much can be accomplished from laying around. I have many, many more symptoms including numbness and lack of feeling in some areas, but I can still walk and have the use of my hands. I do feel very fortunate! Feel free to ask any questions you would like and I am also glad that I have joined such a wonderful and supportive group of people.

Hi Mandee, Thanks for the feedback on the cortisone shots. I had a call from the doctors office today saying that my insurance did not cover that particular doctor. My neurosurgeon said that is the only one she refers to for epidural shots. So, now I'm debating the entire thing again. Maybe I shouldn't do it. Certainly I don't want just any idiot doing the shots. I don't know. My hands are going numb alot and the pain in my neck (no pun intended) is getting worse. Now shooting pains into my legs and feet. But of course, it's not the syrinx. This is all so frustrating and I can relate to everyone on here. BTW..someone above mentioned a brain MRI. I did have one of those the beginning of this year, it came out normal. :-) Deb..I'm glad you were able to find a doctor to listen to you!! Now THAT is rare!

Gabrielle, I had to communicate my symptoms in a way that could not be denied by the doctor. I don't know how you became injured, but I would highly suggest you do the same. Write a letter detailing your symptoms and ask your neurologist or neurosurgeon to refer you to the appropriate doctor for a diagnoses and treatment if your symptoms could not be related to syringomyelia. What I mention above about law suits applies to any and all as told to me by several well known attorney's. The doctors have a code of silence at this point in time in response to their insurance coverage and irresponsible law suits in the past. I am not sure what your situation is, but this is a good start and it really just helps to make sure that there is good communication between you and your doctors. Remember to send it certified. Or better yet, take it to his office and give it to a staff member and have them look at it and sign it. Let me know how it goes for you.

Hi Deb, My history is that I had been dx with breast cancer about 5 yrs ago. I had an MRI done, where it showed what the drs. dx as a syrinx. I went to a neurosurgeon at the time and he said congenital, its not causing any issues, in about 2 min. of his precious time. About a year ago I had a rear end MVA and ever since then my symptoms have been getting progressively worse. I have seen 3 neurosurgeons, all who say its not the syrinx. One of them dx me with Chairi ? I asked why he said Chairi and the others said SM, he said they are both the same but my symptoms are not from that. So..this last neurosurgeon I seen, I printed a copy of the symptoms from the Mayo Clinic site, checked off the ones that I was having and also brought a letter with me, listing all my issues. I took that with me, and a copy of all my MRI's, x-rays, CT's yada yada..she looked at the brain MRI and told me she did not have time to look at the rest. I guess for me, after awhile I feel mentally beaten down by all of this. Which is probably what the Drs hope for. I know I need be loud. I am just getting very tired and burnt out. I believe you are 100% correct that the doctors will not work against each other, even if it means our health. And that is what is so extremely frustrating. I just don't know which way to turn on that. Gabrielle

Hi Gabrielle, From what I understand, there are only two ways of acquiring this disease.(1) Congenital= Arnold -Chiari or (2) Blunt force trauma to the spinal cord. The other diagnoses would be unknown origin. I have contacted my insurance and perhaps you should do the same. I am not interested in any law suits. I just want to be cured, but I am led to understand that there is no cure for his disease. If you do have Arnold- Chiari they can do a surgery and it can resolve it for you. I read another earlier post that someone else did have the surgery, so you might want to contact them and see if they have found relief from the symptoms. I was hoping that stem cells might be the answer, but found out today that it can not be cured, but at a huge expense, it can help with symptoms. I don't have 30,000. laying around to see if it would help. I believe everything happens for a reason. I am waiting to learn what it might be. Until then... I continue to investigate and hope and pray for us all.

Hi Garbrielle, I thought I might post as I had similar confusions when first diagnosed on the causative agents vs. the effects. The Chiari malformation is a birth defect where the cerebellar tonsils descend below the foramen magnum (base of the skull) in varying degrees. Syringomyelia is the effect of this birth defect or other causes such as tumor, trauma, meningitis, arachnoiditis, tethered cord syndrome, and others... or in my case idiopathic (which means unknown cause in case your physicians ever try and use it:)). The syringomyelia is the disorder of having a syrinx, my first neurologist tried to convince me that syringomyelia and a syrinx were the same thing...there not. The syrinx is always a secondary problem and is caused by another affliction. My neurosurgeon stated in most cases when the cause of the syrinx is chiari the decompression surgery usually resolves the syrinx without any other intervention as the normal flow of cerebral spinal fluid has been regained. I hope that helps, I found the handbook for patients and families on the asap website under resources most helpful if anyone has time to read it.:)

Hi Meggie, I am wondering if you agree with the doctors thoughts on how you became injured? Do you have any memories of anything that could have caused your injury? How long did they say you had it by the time it was diagnosed?

Hi Deb. Well...my syringomyelia is still technically considered idiopathic (of unknown cause) I have tested negative for chiari, tethered cord, inflammation (meningitis or arachnoiditis), spinal injury and there is as of yet no sign of tumor so I am a mystery.:) We had to take care of the syrinx first as it was 10X12mm wide by 29-30mm long between C3 and C4 and I was starting to loose control over the large muscle groups in my legs so the shunt was first on the list. Now that I am post-op we are hopeful to focus more on the mysterious causative agent so I don't develop more syrinx's and of-course get the nerve pain under control at the same time from the surgery itself. The neurosurgeons are not sure how long I have had the syrinx, maybe since birth as their hunch is some unknown birth defect not listed under syringomyelia as a cause yet. However, I know exactly when it became an "active" syrinx from it's inactive state...I lifted two beds and a massive chest freezer way beyond my means in the same day and started symptoms that very night but that was not the cause...just the trigger that made the syrinx grow rapidly so it was noticeable. I was originally tested for MS as the symptoms for syringomyelia are surprisingly similar.:)

Meggie, I was told that MS is associated with Syringomyelia. That it is common to be afflicted with both. I also was being seen for MS and it has not been ruled out. I wonder if you had any symptoms at all prior to lifting those heavy objects. I was injured eleven years ago and from that time on had various symptoms, the doctors did MRI,s but never found it. I noticed that when I became ill coughing or anything like that, it felt like someone was hitting my head with a sledge hammer. I went to emergency rooms and they would give me a shot(no tests or anything) and have me lay down in a dark room. I know it sounds odd, but in those eleven years of seeing doctors the fact that they finally diagnosed me was so crazy good I can not even tell you how elated I was just to know that I was not making myself sick as some doctors were telling me and they just wanted to put me on anti depressants. That was depressing! Have you looked into Stem cells at all and do you have any feeling about them? I was contacted by a Doctor Radar and if I go out of the country and come up with 30,000. dinero he says I will benefit from them. He says he won't say he can "cure" it , but that the symptoms will be way reduced and I will feel much better and healthier than I do now. He says he would do a lumbar puncture directly to the sight of injury and I would be able to leave in an hour and half. Please tell me your thoughts. You can google him. He just wrote a book called "The Silent Miracle".

Hi Deb, I haven't had a chance to look up that book, but I will. Thanks for sharing the title. I had a friend who just went south of the boarder for a surgery, not cosmetic but related to myalgia. I thought she was crazy at first, but her experience was great and she is feeling much better. I don't know all the details, but just saying that here in the US our options can be very limited. So I share in your thoughts of looking elsewhere. Although the money factor is usually what holds people back. Gabrielle

Hi Gabrielle, Can you find out if this person was given stem cells? I would greatly appreciate the information. I would have to do fund raising and they sent me a packet with suggestions and how to's, but I guess I am trying to get feed back because that is a lot of money to come up with, to not have a better idea of how it will benefit me. The idea of having needles poked into my back again sounds ominous as well. Debra

Hi Debra.:) MS shares many symptoms with syringomyelia and therefore is usually tested for as it is a well known disorder before syringomyelia is suspected or even known. I was tested for MS as well and have been told it has not been ruled out either, however it is a very difficult disease to diagnose, usually when all other options have been ruled out. As far as being a symbiotic disorder...multiple sclerosis is an autoimmune disease that without proper medication will destroy varying portions of the brain and spinal cord by lesion formation. The only correlation I can conceive of with my current knowledge base would be a potential lesion formation in the spinal cord that might cause an interruption of cerebral spinal fluid pressure and normal flow therefore potentially causing the formation of a syrinx similar to that of a tumor, however it is not listed as a cause as of yet but a good hypothesis Debra.:) I had no symptoms before the lifting that would indicate the presence of a syrinx.I am sure you were relieved as you were finally being validated for your years of suffering. Stem cells...well that is certainly a controversial subject now a days. Personally I am all for the hope of curing so many diseases with the unwanted and discarded frozen embryo's that would otherwise go into the trash, other methods of obtaining the cells I might disagree with. Stem cells are undifferentiated cells, meaning they are able to become heart, brain, skin, any type of cell in the human body. There application on syringomyelia does not seem practical unless used upon the damaged cells after the syrinx had been resolved. The stem cells would logically have no effect on the syrinx itself as the underlying causative agent is causing the CSF pressure change, not damaged cells. Personally I would gather as much information as you can before making your decision and always be the skeptic. Extraordinary claims require extraordinary evidence. Such as in homeopathic practitioners, which by the way is mathematically dosed as one part in a number larger than all of the atoms in the universe....it's just water, given by a "doctor" whom may claim to be such with NO education at all. One must be weary of those who claim miraculous practices. I will definitely look up the silent miracle, I am intrigued as to his scientific data and why it is not accepted and practiced in the U.S.. Please keep us updated and I hope for you the best.:)

Hello Meggie, Thank you so much for your insightful answers. You do seem to have a wide knowledge base and if you don't mind sharing, what is your main resource for gathering information? Are you associated in some way with the medical community? If not, I must say that you are a skilled communicator and I very much appreciate whatever further information about this disease that you have to share. I am gathering all that I can in hopes of finding a cure. I would like to know what it feels like to be "normal" again. Can you relate? Thanks again, Debra

Thank you for the wonderful compliment Debra.:) I do have a basic medical background as I have been pursuing my doctorate as a nurse practitioner in child and family psychiatry for the past four years, but unfortunately this disorder packs a mean punch and has left me all but bed-ridden. I have still only officially deferred my clinicals for a year, however I doubt I will be able to continue on my current career path. I am contemplating a research career in social psychology as I could take most classes online and a research position might be done from my bedside laptop and phone line, I am waiting to see where my function and limitations even out with the different treatments the team of physicians are experimenting with to try and maximize my abilities and quality of life. I would be happy to share any knowledge I may have that you are interested in...in-case you hadn't noticed I do love rambling on about medicine and psychology so just ask.:) I am glad you mentioned resources as so many of us (me included before college) use unreliable websites to try and gather precious information. Fun-fact: Wikipedia is NOT allowed as a reference in any college classroom...why? Because it is written and re-written by you and I, not by qualified individuals with a degree in the specified field and without proper citation and therefore accountability. I personally always use nih.gov sites (National Institutes of Health) for my research as they are government based and have credible authors. Webmd is also usually quite accurate and uses common language as most individuals have not taken medical terminology. As far as being normal I have had similar emotions...however I learned some valuable information in a mandatory statistics class...normal (average or mean) is only defined as the sum of the data values divided by the number data items...so there is no such normal person only personalized averages.:) However in the psychological aspect one should acknowledge and process these emotions which are well explained in Elisabeth Kubler-Ross's 5 stages of grief (http://www.ekrfoundation.org/five-stages-of-grief). Although we are not necessarily dying in a physical sense or losing someone else, we are in grief over the loss of our abilities, our previous painlessness, or even our innocence as to the cruelties of genetic mutation and therefore will naturally try to go through these stages to process the changes in a healthy manner. We may go through them out of order or repeat stages multiples times, but this is how our psychological processes work. The best explanation I have found on syringomyelia thus far is that of a friends and family handbook posted on the asap website (http://www.asap.org/index.php/disorders/patient-handbook/) that offers a anatomical and physiological look at the causes, treatments and outcomes of the disorder known thus far by leading researchers in the field that I would highly recommend. It opened my eyes to a relatively unknown disorder...I had not been taught this in nursing and was unaware it even existed until my diagnosis. I hope that helps and please feel free to ask me anything, I might not know the answer but would always try and help you find it.:) Please keep me updated on how you are doing, I hope for you the best of the data set.:) Meggie

Hi Deb & Meggie, Deb, I did ask my friend if her surgery involved stem cells, it did not. So...I don't know how that would work. Meggie seems to have some really accurate information. Anything is worth looking into, but just be careful. I keep wondering, how do they know my syrinx is a syrinx and not a tumor? I was dx with cancer 6 years ago? I'm not sure. Gabrielle

Hi Gabrielle, I'll bet Meggie can answer this better than I, but I'll give it a go. From what I understand, the difference between a cyst and a tumor is that a cyst is a soft area where fluid moves through it or collects in it and a tumor is a hard mass. The diagnostic equipment is able to detect if blood or other fluid is in a soft mass or a hard mass. I have an area in my left back flank that has been hurting for years and continues to grow. One doctor said it is a lipoma and another said it is my muscles changing. Neither wants to treat it they just keep giving me pain pills and muscle relaxers. I hope this helps you. I wonder if you are keeping your medical records. It really does help with understanding if you read them and the associated notes. Debra

Thank you Gabrielle.:) Touche Debra! Don't doubt yourself, you are right on...there is a big difference in imaging for a solid (tumor) verses a fluid filled (syrinx) mass. When an MRI is performed with intravenous contrast (my profile picture) then only the cerebral spinal fluid will be illuminated, if it is without contrast a dark or black color will be seen for fluid and the tumor or solid mass would appear more light or white as the other tissues would (picture examples of this are on-line to give you a better visual). So it is always beneficial to be on the skeptical side Gabrielle, I would look at it myself and get a second opinion just to make sure. You have every right to feel the need to validate the physicians claim...and even more so with your past cancer diagnosis. When we experience something traumatic we often form in psychology what is called a "conditioned stimulus", meaning if I get hit in the face I will automatically try to block the next time something comes close to my face. This is an important psychological tool that has been passed down our evolutionary genome. So you are naturally going to be weary of a subsequent cancerous mass to try and protect yourself from further out of control cells. And I agree with Debra, I keep a folder with all of my test results and information from this disorder near by for reference. I hope that helps and please know what you are feeling is completely normal and more over essential to keep you as healthy as possible.:) Meggie

Hi All...I just wanted to wish you all happy holidays and hopefully a great new year. I also wanted to ask a question, my anxiety level has been going thru the roof. My neck feels as though a rope is tied around and is being tightened, my blood pressure is going up and I am very angry most of the time. Normal?? I had an MRI a few weeks ago. The doctor was suppose to be comparing it to a previous one to see if the syrinx has grown. No answer yet. I just am really angry. The pain is alot and I'm sure that's part of it. Just thought I'd ask if anyone else had this. Meggie..your explanation above makes total sense. Thank you for putting that in words.

I should say, the anger level is to the point where if I was a guy, I would probably punch the freakin wall. No good, but that's how I'm feeling.

Hello Gabrielle and all others, We are in stressful times at the holiday time and pain =anger. Yes I have felt angry. Very angry dealing with doctors is not easy either. Some advice that has helped me. Find a very quiet place and get in the most comfortable position for you. focus on one word and nothing else for at least twenty minutes. I like the word om. Take deep even breaths and relax all of your muscles from head to toe. I hope this does help. You might also consider counseling if you are not already getting it. It does not mean you are crazy, we all need to hear our selves talk sometimes. If you ever need to talk to someone I am here and you can reach me at 8587742581. Happy Holidays everyone! Debra

Hi Debra, I wanted to say thank you for your post and thank you so much for the offer to talk! I am not currently in counseling. I went after the cancer dx for awhile, it was helpful. The pain of the syrinx and nothing being done, and I suppose the holidays too. Lots of things I guess. I will try your suggestion of meditation. It certainly can't hurt. I'm just feeling very frustrated and don't seem to be able to shake it. Happy New Year to you, Debra and we'll talk soon. Thank you again for taking your time!!! :-) Gabrielle

Gabrielle, Call any time. I have very little in common with most others these days, in fact they seem to be in a strange state of denial about my disease and that is what is frustrating for me. The level of pain that this disease causes is unreal! Others look at you and think you are normal because they can not see what you feel. I don't like reminding my friends and family about my disease and sometimes they give me the impression that I am making it up or seeking sympathy. UGHHHHHHHH! This is crazy making for me! Again call any time. Debra

Hi Debra, I can really relate to what you said. I feel the same. I told my husband the other day, people just want to hear that you are fine. You look fine, so you must feel OK too. I don't talk about it with many people. I don't care for sympathy, but it would be nice to talk to someone who understands. My neck pain is worsening by the day. It's 24 hours a day, so it makes it really difficult to forget about it. I also find that I am clenching my jaw at night now. Maybe from the pain, I don't know. I hope somewhere here in cyber space at least some doctor is reading all this crap and maybe will do something in the future. You think? Still no call back from my neurologist. I'll call today or tomorrow to see what the deal is and then go pick up my copy of the MRI and report. Thanks, Debra! I will find sometime soon to call you. Gabrielle

Hi Gabriele and Debra!:) I apologize for not being on I have been quite ill but hopefully on the uphill for awhile.:( Thank you Gabrielle for your kind words and I wanted to touch base with you and validate your anger statement with a history of my own; as the weeks prior to my shunt insertion operation for the syrinx was an angry and painful time for me as well. The body can only absorb a certain amount of stimulus at any given time, so when chronic pain is present...such as that overwhelming discomfort of an enlarged syrinx, one may only take in small doses of any other stimulus leaving one irritable and angry feeling, so please know what you are experiencing is normal for what you are having to endure. I highly recommend counseling to anyone... I have been going for years and have been schooling for a psychiatry degree myself.:) I also wanted to comment on your statements on family and friends...I completely relate and appreciate your validation Gabrielle. Many individuals are not psychologically equipped with the tools to handle such situations, not to say they are not capable of learning such tools, however many are too intimidated or bound by their own trauma and therefore choose to stay in denial which; does not benefit the sufferer in the least as it presents the image that their feelings are unjust and dramatic. I found a great quote on a site for one of my issues from the shunting operation (neuropathic pain) and I quote it often to those who tell me to toughen up and it goes as follows; "No Need to 'Buck Up' When someone lives with neuropathic pain, what they really need is to be able to express themselves and the effect that the pain has on their lives. They do not need to be told to cheer up or to 'buck up', simply because this can make them feel even more worthless, as if somehow they are submitting to the pain and causing their condition to be resistant to treatment. It is undoubtedly a very difficult condition to understand; but one that demands understanding and not a glib approach, so be gentle, listen and try above all to understand the massive impact that this condition can have on people." Now copy and paste syrinx in where neuropathic pain is, or chiari and so on...it is the same principal of healthy expression and is essential for such disorders as ours. I apologize as I do tend to write novels.:) Thank you both for all your much needed support and please keep me updated on how you are both doing.:) Meggie

Happy New Years Ladies! I hope that we will all have the best year ever! A cure would be a miracle that I am ready for in my life and I have not given up hope. I love your novels Meggie. They are so helpful and enlightening.

To you as well and thank you for your kind comment, I do so enjoy a good ramble.:) My goals this year are to reach an endurance level that would allow me to play outside with my daughter again and become well enough to return to my degree program in the fall semester for clinicals.:)

Hi Debra and Meggie, I finally got my MRI report back. The syrinx is at C5-C6 extending to T1 and is 2mm. It shows a lot of things including severe right and left foraminal narrowing. I'm not really sure what all that means, but the past few days the pain is getting so much worse and now I'm having nausea too. I keep hoping that is maybe from something else. The neurologist is supposedly waiting to get back the comparison to another MRI from last year to match it against to see if there are any changes. Even if there isn't, what would my options be? I'm also getting facial pain and ear pain. I'm so f-in sick of this. I want my life back!!!! Meggie..I love your insight too, keep it coming and I hope you are able to get out and play with your daughter soon! Debra..my head feels like its going to explode too. I'm just so tired of feeling this way. Gabrielle

Hi Gabrielle! I am glad to hear you have some results.:) I might have some information that could relate to you...I have bilateral (both sides) osseous (bone tissue) foraminal (the hole in the center of your spine that contains your spinal cord) encroachment (narrowing) at C5-C6. Narrowing of your foramen can cause compression or damage to the nerves in the affected area thus potentially causing symptoms to the areas of your body supplied by these nerves. The area of C5 to C6 and extending to T1 would most likely affect your brachial plexus (a network of nerves) which supplies your shoulders, arms and hands and could cause symptoms such as numbness, tingling, sensation and/or motor dysfunction. Anti-inflammatory medications are often used and in extreme cases there are surgical procedures to open up these areas such as foraminotomy, laminotomy and laminectomy. Mine is not this severe and I do hope yours is not either.:) Nausea is a subject I am unfortunately very familiar with and it can be associated with pain. I had good results from candy ginger and room temperature coke...yes regular coke has an ingredient in the syrup that can reduce nausea.:) There is also a gentle but very effective prescription medication called promethazine (phenergan) which is commonly prescribed but the causative agent would still need to be identified and addressed. I can relate with feeling as if without options.:( This disorder seems to permeates every aspect of life without regard to sanctity. Please know you have support.:) Thank you for your kind words Gabrielle.:) And I hope to be well enough by summer to swing along side her in the sun.:) Please keep us updated! Meggie

Hi Meggie, Long time no hear! :-) I kept meaning to log in, but so many other things going on. Probably like everyone else here. I've posted a rant in anther topic on here. Syrinx is getting worse. No relief. No doctors that understand. Yada Yada Yada. I hope you are doing OK!

Christie Wood...just wondering how you were doing? I live in Oregon so we are very close (love the Seahawks jerseys!!). Anyway, may I ask what doctor you saw?... did you have surgery?...How are your symptoms now? I am new to this with SM on my MRI just two weeks ago but symptoms for 3-4 years. thanks