Syrinx

I have just recently been diagnosed with a syrinx between my C4-C5. I am experiencing chronic pain in my upper back and neck, weakness and aching  in arms, headaches that start out as tension and turn into migraines, weakness and aching in legs and sometimes the pain shifts from my upper back to my lower back.  Is there anyone out there that can tell me what pain remedies or alternative therapies that will help with this?  I work full-time and I find that some days that I am in so much pain that I can't make it to work.  Will i still be able to work in the long term? I was told by a Neurosurgon that I was born with this condition and now that I have researched this all the problems that I have had in the past are directly related to this.  Some days I am just beside myself with pain does anyone have any suggestions on how to deal with this???  I am on a 9 month waiting list for another MRI where they will do the die this time, 2 year waiting list for physiotherapy and also on another waiting list to see a pain management specialist.

[*Stormy*]

Hello Fellow Canadian!!!

Sorry I am a little excited...you are the closest person to me so far!

I live in Victoria (actually Sidney) BC and I have yet to find anyone with Chiari/syringomyelia that is close to me.

It kills me to hear that you are on a 9 month waiting list...I was too when they thought I had MS. I thought..there is no way that I am going to wait that long to find out..so I ended up paying privately to the tune of $1700...our health care waits are ridiculous. It was the MRI that found the Chiari though..so in the end it was worth it.

I am also on a waiting list for a physiatrist...I am told it can take a very, very long time. Meanwhile, I keep trialing different drugs to help with the pain. This is post op pain that I am dealing with.

So from your post, I take it that you have the syrinx but no Chiari? Your pain sounds a lot like mine but I am the other way around...Chiari with no syrinx. Did they look for Chiari? I ask this b/c the radiologist missed it the first time around on mine!! There is very little awareness out our way in regards to CM and I'm sure SM too....so...even if they see something, they may cite it as incidental or say nothing at all. It was my NS that took the time to look at my scans and HE dx the Chiari.

Ask for your MRI reports and pics!!! I'm sure where you live it is the same...I just had to get a release form and fax it into the Health records department. You may be surprised on what the report has to say.

I have a great NS here in Victoria that I would highly recommend...so if you need a 2nd opinon..PM me and we can talk more!

Hopefully, someone else here with a syrinx can give you more advice..

Take care
Carolyn

[denverluv]

On a different topic- being in the states one thing alot of people talk about is how Canada has all their healthcare paid for, and why can't our government do the same for us over here- but you guys really have to wait that long to get anything done? What the heck- wouldn't it cost them more long term for all the conditions that progress over that amount of time? And then if you pay you can get it sooner? What a pain.

I do have a syrinx but I have Chiari too. All of my symptoms kind of run into each other, but I can def. relate to the back pain. I tried just acetaminophen, Ibuprofen, then Medical Marijuana, and the MMJ kind of helped my deep muscle pain, but not enough to continue with it. I didn't smoke because it made the pressure in my head worse, so I took edibles. Even with that I felt like I couldn't really focus on anything correctly, and the amount I would have had to take to take away my pain would have put me in la-la land. It also made me tired, and they say there are some strains that are not supposed to make you tired, but no matter what I took it always did make me tired. Part of my issues are between the general fatigue that Chiari gives you, as you know being in constant pain can exaust you. I also have bad scoliosis, and just holding myself up at this point is a challenge. SO, needless to say, taking something for pain that a side effect was getting extremely tired was not a good option for me.

Right now I just take Tramadol (Ultram). Something stronger would help more, but I don't do heavy narcotics. The Tramadol takes the bite out of my pain, and it also has an anti-depressant in it, so it helps with that, which IMO helps with the pain. On a scale of 1-10, my pain usually is around 6 or 7 normally, on a bad day about 9. I have to rely alot on mind over matter. Distraction, however you do it, also helps. (that's why I am here all the time! ) Changing position often, hot baths, heat packs, massage. I really do believe in meditating on your pain, believing that your mind can at least scale it down. Sometimes we focus on the pain and then it feels worse because that is all we can think of.

I hope you find something that works for you. Good luck :)

[selmaS]

HI and welcome : )

I believe I may have answered a post for u on another forum.

DO u know do u also have chiari?.....tethered cord or other related conditions?
9 months is a long time to wait and I am so sorry they don't seem to think ur pain is enuff to get u in sooner.

I have a friend with pain like u mention and she has tried accu puncture....and as long as it is a good one has seen benefits from it.

We also have a thread for things u can do to help with pain in our health pages
http://www.medhelp.org/posts/Chiari-Malformation/HEALTH-PAGE-LINKS-/show/1146333
Here is a link to a thread that does have links to pages that deal with chiari and syringomyelia pages.

I am sure other members with a syrinx will pop on too....and thanks sooo much for making Carolyn happy : )

"selma"

[rod44]

Hi Stephanie, a Syrinx can be secondary to another problem such as Chiari or an injury, it is important to find the cause of the cyst development, for this you should have a NS who deals with SM as a big part of there practice.


Ray

[stephanie48]

Thank you all for you posts back and especially to my fellow Canadian Gal :).  You are the first person that I know that has this sort of problem in Canada.  I got a copy of my NS report today and it turns out that the syrinx is from c6-t1 and I have a disc bulge at the c5-c6 level but he does not feel that this is significant with regards to neural impingement. He also stated that there is no evidence to suggest Chiari malformation.  His impression on the report is there are no obvious signs of the cause of the syrinx so he doesn't suggest surgery at this time.  

I guess that the most frustrating thing about this is because it is so rare is that we have General Doctors in Revelstoke and mine has never treated a patient with this.  I feel that she really doesn't understand the pain that I am going through and was reluctant to give me medication for it.  My last visit when I broke down crying in her office she finally started to get the jist of this.  I am not lying about the symptoms, they are here and very real and I just want the pain to go away so I can go back to my normal active life.  She now has me on Oxicodene, Anti inflammatories and muscle relaxants. I used to go to gym 5 days a week, always out walking, or biking or hiking and now I can't do any of them because the pain just gets worse.  I'm scared that if this keeps up I will not be able to work because some days I can't get out of bed.  I guess that I am just frustrated, upset and scared so any information would be appreciated :)

[rod44]

Hi Stephanie, I have a Syrinx in this area as well, it is very bothersome so I know just how much pain you are having. Finding the cause is important, if the Syrinx is treated without finding the cause it could develop again and you would be back to square one.I assume they plan to monitor your Syrinx (usually they review you every 3 months) to make sure there are no neurological problems, many of the nerve supplying the upper and lower limbs originate at this level of the spine.


Ray  

[stephanie48]

Thanks for the info rod.  I went back to my doctor today and she is going to get me into a pain clinic in Vancouver and she is going to look into other drug therapies.  Until I get the next MRI with the iv, it is hard to say if something is causing this.  The NS said in his report that he did not see any signs of the cause of the syrinx so I guess that I will just have to wait and see.  It's been 4 months since I have been referred for another MRI so at least I am half way through my wait.  What medications do you take for yours?  Have you ever tried alternative therapies?

[stephanie48]

Thank you for your response.  This is all still very new to me and I am trying my best to get a better understanding of it.  Yes in Canada the wait time for specialists and tests can be very frustrating.  I take it that you don't get that in the US? Today is a good day - went to my Doctor and I think that she has done some research since my last visit so she is now referring me to a pain clinic in Vancouver and she is looking into other medications one in particular is used for seizers.  At this point I am willing to try anything. How long has it been for you since your initial diagnose?  Are you able to work?  I

[denverluv]

No, I don't work, but I also have Chiari too. I feel like if it was just my syrinx, I might be able to, but I really don't know. Well, probably not, because of my back pain.

I was first diagnosed when I was 9, had surgery for scoliosis and then didn't really become aware of my symptoms untill about three years ago.

LOL- we have a wait time here, just not THAT long! - or at least I have never had to wait that long!

I hope you find relief - Good luck!

[rod44]

Hi Stephanie and welcome to our community, I take Nurofen, Difane (Anti-Inflammatory) and acupuncture to help with the pain. My Syrinx is secondary to CM and other spinal problems (Neurenteric Cyst @ T1, Fused vertebra C7-T2) so for me it is about treating the cause. Right now it is challenging just to find a NS who actually knows about these related conditions....

My NS is monitoring things for now and has indicated he will not surgically treat me until I have significant disability or in his words "when one leg wont follow the other", suffice to say I am looking with another opinion.    

If I would suggest anything I would strongly recommend that you get a NS who treats Syringomyelia as a big part of their practice. A Syrinx is uncommon and not all Doctors are well versed on them.....

Ray

[ill13632]

I have a neurenteric cyst eroding my cortex (it's in my clivus), do I have to find a neurosurgeon that specializes in this?

[selmaS]

  Hi...it would be helpful to have a specialist in dealing with this type of cyst and for the location it is in....

Does ur cyst cause symptoms?

    "selma"

[ill13632]

I have memory/concentration problems, exhaustion, stiff neck, nausea/vomiting, headaches at the temples and slight pain at the back of the head when exhaling.  also central sleep apnea and O2 levels of 75% at night

[selmaS]

   Were u Rx'd a C pap for the apnea?

The one thing I will repeat is u need a true chiari specialist.

In the mean time, ask ur PCP to do blood labs to see if u have ne low levels of vitamins and or minerals and if ur thyroid could be affected.....

  Getting all ur levels in line can help with some of ur symptoms.....and lessen some of the chiari symptoms u r dealing with at the moment.

In addition, u should avoid certain activities to help lessen the possibility of triggering the symptoms to flare.

   "selma"