Question about syrinx size and symptoms

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Question about syrinx size and symptoms

Postby Jankster253 » Tue Jan 03, 2012 2:53 am

I have a question.......my syrinx measures only 1mm and is from T-5 to T-11.......does anyone know if a syrinx that small can still cause multiple symptoms. My regular Neurologist makes me feel like my syrinx is too minimal to cause all the issues that I am having. Can't wait to see Dr. Richard Ellenbogen in Seattle in a few weeks. Hoping he has some answers for me. I'm tired of feeling misunderstood and frustrated. Thanks in advance!! :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
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Re: Question about syrinx size and symptoms

Postby karenb » Tue Jan 03, 2012 12:26 pm

Teresa,

My syrinx is from T6-T9 and measures 3 mm at its widest.

My NL first told me I'd need a walker and a wheelchair, and I nurse helped me get more info about the condition - at the time, the info was pretty stark (first suggested contact was the Christopher Reeve Paralysis foundation!).

I've had quite a few NLs tell me I'm making it up - one even had the balls to tell me that "it's all in your head - what you really need to do is go get a job" (imagine the condescending tone that went along with it... and this was just one month after I'd been awarded Social Security Disability!).

The folks at NIH said that even small syrinxes can cause numerous problems - I don't know what they mean by "small", but mine was "smaller" than they were looking for... Anywho, from what I understand, it's both the width and length that matter, but it's also greatly affected by you spinal physiology, and it sure sounds like you've got a lot going on.

Hang in there, and keep searching for help and answers!

Karen
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Re: Question about syrinx size and symptoms

Postby razzle » Tue Jan 03, 2012 4:48 pm

a syrinx can cause all kinds of problems . I dont mess with Neurologist as they know nothing just testing . wait for Dr Ellenboggan and see what he has to say . ask his recomendation for medication and then have your family dr take over from there . you dont need a neurologist . waste of monsy.... good luck
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Question about syrinx size and symptoms

Postby passmass » Tue Jan 03, 2012 9:12 pm

In this case SIZE DOES NOT MATTER!!!!! A very small syrinx can cause alot of problems and a large one very few.
It depends on the person and how the syrinx works. If you Doctor does not understand this find a new one!!!!
Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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Re: Question about syrinx size and symptoms

Postby Jankster253 » Tue Jan 03, 2012 10:17 pm

Do you mind if I ask what symptoms you guys have?? Thanks for your replies. Curious what the Neurologist says tomorrow.......... I doubt much as he is unfamiliar with syringomyelia. He was on vacation when I had my MRI and got back today. My follow up was scheduled for Feb 14, but they called today and he wants to see me tomorrow. Should be interesting. I see Dr Ellenbogen Jan 23.

How many of you are on Disibility? How many symptoms did you have or how severe were they before you qualified? I worry about this a lot because I'm a nurse.

Thanks again......

Teresa :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
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Posts: 26
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Location: Tacoma, WA

Re: Question about syrinx size and symptoms

Postby JeffinMI77 » Wed Jan 04, 2012 1:59 am

I have two "tiny" syrinx and I get a whole host of symptoms. I just found out what it was in December but i've had the symptoms for years. I see a Neurologist for the first time tomorrow (Jan 4th). My PCP was familiar because his father in law had one. He suggested that I go on SocSec. Told me he would give me what ever pain pills I want with refills....Don't know if his willingness scared me more or the his knowledge of the pain level!

I get horrible back pain, numbness and tingling in my arms and legs, feel like my legs are going to give out after working ( I'm a Patient Care Tech), involuntary muscle movement, and her lately I feel like i'm more clumsy then usually. I bump into things, drop things.

Let us know how it goes!

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Question about syrinx size and symptoms

Postby Jankster253 » Wed Jan 04, 2012 3:21 am

Jeff,

Thanks for sharing. Let us know how it goes with you too. Sometimes I feel like I'm crazy....that something else MUST be causing all my symptoms other then my only 1mm syrinx. It is so frustrating to say the least.

Good night,

Teresa :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: Question about syrinx size and symptoms

Postby JeffinMI77 » Wed Jan 04, 2012 6:15 am

I agree with you Theresa, I think I must have something else going on too. It's frustrating because people look at me as if to say, "there's nothing wrong with you". I had a NP write in my chart that I was seeking drugs......That hurt!

I had one of those nights that I couldn't sleep after 3 hrs...gonna be a long day!

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Question about syrinx size and symptoms

Postby Jankster253 » Wed Jan 04, 2012 4:17 pm

So I went for my follow up appointment following my MRI at my Neurologist today......it went as I expected it to, he didn't really have any answers or explanations for me. He made me kinda mad because he kept saying that he didn't think my symptoms were from my Syrinx because it's so "small" (1mm T-5 to T-11). Every time he says this I want to jump across the desk and choke the life out of him!!! I don't even think he has looked up Syrinx or Syringomyelia, or at least it doesn't seem like he has. If he Googled it like I have been for the last 5 years, maybe he could see how complex this disorder can be.

Anyway, he is going to start me on Neurontin (Gabapentin) for my nerve pain. I will continue to go to physical therapy weekly and massage weekly. I will see Dr Richard Ellenbogen (who thankfully DOES know alot about SM) on 1/23 and I pray to God they have more to tell me. I will go back to the pain specialist 1/26 and I guess I will see what ideas they have.

I hate the way the NL makes me feel like I'm making it up. I'm most definitely NOT making it up!! I am miserable and I want to feel better!!

I also made an appointment with my PCP on Monday to discuss my sleeping problems and feelings of depression over all of this. I hate the thought of taking MORE meds, but I have to start feeling better for the sake of myself, my family and my job.

I have been off work since Dec 15th and I'm going back on Jan 7th. Whether my body/mind are ready to go back or not.....I have no choice because my sick time is running out. My NL said that the 11 pm to 7:30 am shift that I have been working the past 16 years isn't ideal for me (graveyard shift can reek havoc on your system/body), but at this time I'm kinda stuck there. I know it's going to be rough......because at the end of a typical day I am super sore and super exhausted, and the thought of then working all night terrifies me. I am looking for a part-time day job.........but this is proving to be harder then I had expected.

So that's what is on my plate for today. Thanks for letting me vent here. It's comforting to know that the people here really understand, unlike almost everyone else.

Teresa :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: Question about syrinx size and symptoms

Postby JeffinMI77 » Wed Jan 04, 2012 4:47 pm

Hey Theresa,

I understand you completely. I went to see the neurologist today for the first time and he said the same thing. He brushed off the two syrinx I have and said they were "incidental findings". My real reason of being there was the back pain. He claimed to know alot about syrinx. He was more interest in the fact the my mom and I both have A-fib. He still couldn't give me any explaination for the pain and prescribed a therepeutic multivitamin and PT. He want me to go to PT 3x a week...I have a 30 dollar copay, I DON'T THINK SO!

I feel like i'm back to square one. My pcp has me ready to quit work and go on disability and the NL has me being superman. I told him that I lift patients everyday and it didn't phase him. Said we would do another MRI in six months. From all the reading i've done I'm suppose to aviod things that would aggrivate this condition. Does he really know? I put in a call for my PCP to call me for some advice. I also found a lump in my back that he barely acknowledged calling it a lipo something. Said i could have it removed but that would just be surgery for no reason. This lump seemed to appear over night. I'm not comfortable with that answer.

I asked for an excuse for work because I was having a rough day and called off. They gave me a slip that said I had an appt....Yeah that's gonna work. I cannot discribe how mad and upset I was/am. I'm at a loss. I went from feeling that everyone though I was crazy to asking am I really crazy.

I was goin to right my own post and vent but since you and I are experiencing the seem thing I just piggy backed on yours, sorry lol. I'm here to listened to any ranting you have.

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Re: Question about syrinx size and symptoms

Postby Jankster253 » Wed Jan 04, 2012 5:29 pm

Jeff,

I'm sorry, but sounds like we both had a crappy NL visit. You need to do some homework and FIND a NS that knows about SM apparently. Sounds like from others here that it's not always easy. Thankfully the expert here is only about 40 min away from me. I have seen him before, but it has been a couple years, and at that time I wasn't having all these symptoms. When I saw him last it was a referral to see if I had Chairi, which he ruled out.

Hang in there. I hope you get answers soon. I'm going to look for a video link of Dr Ellenbogen at a conference where he did a really good question and answer session. I may watch it again myself.

Have a good day!!

Teresa :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: Question about syrinx size and symptoms

Postby Jankster253 » Wed Jan 04, 2012 5:34 pm

Jeff:

Here's the link, please check it out!

http://www.csfinfo.org/node/217

Teresa
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: Question about syrinx size and symptoms

Postby karenb » Wed Jan 04, 2012 8:23 pm

Hi Jeff and Teresa,

Man, you two sure have been going at it, so I figured I'd mix up the stew a little...

As I said earlier, my syrinx is from T6-T9, 3mm at its widest.

My problems started in mid-October 1997 - I came home from work on Friday with what felt like a little bruise on the side of my left foot. The following morning, my foot had such stabbing pain that I could barely walk. By Sunday evening, the pain had turned to numbness and had started creeping up my leg. After 6 weeks, I was finally allowed to see a podiatrist, who found a dislocated cuboid bone. He relocated it, it broke, the fracture was treated, but it healed dislocated. Some time in mid-1998, he realized that I had a constant muscle spasm in my left Peroneal muscle, and that was triggering the dislocations (and confirmed it was not the other way around - the dislocation was not triggering the spasm). The spasm was also starting to deform my foot (causing hammertoes & bunions, dislocating toes, etc).

At that stage, the neurologists got involved, and I spent the next 5 years going down the Charcot-Marie Tooth Muscular Distrophy and experimental medicine route at the University of Medicine & Dentistry of NJ (Robert Wood Johnson). They ruled out MS, Lou Gehrig's disease, and Reflex Sympathetic Dystrophy, among other things. Finally, after dozens of tests, they just started trying to treat the symptoms. (Oh - about 15 months into this saga, my right foot and leg joined the left one in the mystery symptoms.)

In late 2006 & early 2007, I went through a great deal of trauma - both of my parents were placed in a nursing home 2300 miles away from where I lived, and I started heavy traveling (and heavy lifting, etc.) for about 8 months. By the time I moved to New Mexico in mid-2007, I had severe spasms behind both thighs and was falling frequently. By August 28, 2007, my brand new neurologist examined me, read through the 3/4-inch sheaf of clinical notes from New Jersey, did 3 MRIs, and told me I had a syrinx. He then handed me scripts for a walker, Baclofen, & Klonopin, and wished me a pleasant day. While I was relieved to (finally) have a diagnosis after 10 years, I was also pretty terrified.

When I started using the walker, I realized my legs were collapsing 40-50 times a day, minimum. I was also experiencing episodes of myoclonus, where my legs would jerk around almost like a seizure. Once the Klonopin started to get the myoclonus under control (about 6 months), I was able to start Physical Therapy to try to rebuild the muscles I had lost. Over the past 4-1/2 years, three different neurosurgeons (all SM specialists) have examined me and determined that I am not a surgical candidate.

I had a very good relationship with my PCP (past tense, since he now works at Fort Bliss), and he and I communicated very closely. About six months after diagnosis, it started to be pretty clear that the amount of pain in my legs and the sleep disruptions from the myoclonus were not helping my ability to work (I was in a very high-stress corporate job, on-call 24/7/365), and I wasn't able to take my meds as prescribed because I wasn't sure if or how they would affect my work. Finally, after 20 years with the company and one year post-diagnosis, I stopped working and started down the full disability path. I was awarded full disability 6 months later.

I used a walker for about 16 months following my dx, but was gradually experiencing more fatigue and needing the wheelchair more. Following hand surgery, I was permanently confined to the wheelchair - I have been using a motorized wheelchair, but my rehabilitation & pain management physicians are helping me regain some ability to walk, and are also training me in how to use my manual wheelchair.

Now for the bad stuff... my legs are in various degrees of constant pain due to constant muscle spasms. I've had a great deal of muscle deconditioning while using the motorized chair, which is causing a great deal of back pain. My bladder is paralyzed, and I have a certain amount of reflex bowel (yuck). And all this from "just a little syrinx".

In the past few months, I've started getting much better pain management than I was, and it's definitely helping with some of the most debilitating aspects of what I've been dealing with. My PCP was the primary physician involved with the disability process, but the Neurologist's input was key to approval. My Neurologist doesn't help much, but he does write excellent letters (disability, tax-exemption for my handicap van, city trash pickup, etc).

I'm sorry to have been so long-winded, but this has been a really long saga. The thing is, being on disability allowed me the ability to spend more time with my parents while they were still alive, and it gives me the freedom to focus on the physical rehabilitation/maintenance program I'm on. I'm also starting to get to pursue some long-neglected hobbies and am effectively starting a new chapter in my life!

I hope this helps... at least you got diagnosed early, and can still take steps to try to keep your syrinxes from getting worse. The decision to seek disability is a very difficult, personal one - a lot depends on the degree of disability, the type of job you do, and how much your symptoms interfere with your job, among other things. Another big factor for me was wanting to make the most of the life I still have ahead of me while I still have a fairly good quality of life.

Anywho... I think I've prattled on long enough, and you're problably both asleep on your keyboards by now!

Karen
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Re: Question about syrinx size and symptoms

Postby JeffinMI77 » Wed Jan 04, 2012 10:23 pm

Karen,

I actually was please to read you message. While I feel sorry for myself at times I realize others have experience much worse. It also makes me want to push harder. I'm glad you are able to focuse more on yourself. I watched the video from the link Theresa posted and it talks about distracting yourself from the pain. I'm going to get a second opinion from someone who will hopefully support me. I understand that i'm still young but the type of work I do is very hard on the body. I lift and transfer patients. Not only a danger to myself but to them as well. I think disablitily would be the best option at this point.

You mentioned your feet and it makes me wonder if some of the issues I was having with mine several years back were related. I was in so much pain I couldn't walk. I let them give me a cortisone shot in my ankle, OUCH! They never found any physical evidence of what was wrong. I thought I was crazy. They thought I was crazy. Now I feel like i'm going through the same thing. The syrinx may be small but how come I can barely stand at the end of my shift? lol

Right now i'm working just to pay for insurance and medical cost. Plus the gas it takes to drive 40 mins away to make very little money.

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
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Location: Wyandotte, MI

Re: Question about syrinx size and symptoms

Postby Jankster253 » Thu Jan 05, 2012 12:23 am

Jeff,

Did you watch both videos? I thought they were both really interesting. The second one (question/answer part) is the doctor that I'm seeing in a few weeks. Anyway, glad you watched them.

Karen,

Thank you so much for sharing your story. You have been through so much, much and yet you seem to still maintain a positive attitude. I really admire that. Also it makes me feel like a big whiner complaining about my situation, which by comparison seems very minimal.

I pray that you continue to live your life to the fullest and enjoy the talents that God has given you. You sound like an extraordinary woman and if I was standing in front of you right now I would give you a huge hug.

Keep your chin up and thank you so much for you shared! Sweet dreams and catch you both again soon!!

Teresa :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

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