Susan,

I have recently been diagnosed with a thoracic syrinx and feel the same way you do. Your post could have been written by me except my symptoms are on the left. The base of my skull feels like it will explode, and I feel like my diaphram cannot expand enough to let me breathe. I have tingly feelings on my left side, including the tip of my nose. Sitting is excrutiating after a short while and I am losing control of my left hand. This all happened very suddenly. I had pains here and there for a while, but nothing that was consistent. Then, in February my tailbone started aching constantly, followed by symptoms in my foot, then my leg, and right on up to my nose. At all times, I feel like I have an electrical current running through the left side of my body.

I have an appointment with a neurosurgeon this week. I was looking forward to the appointment until I saw your post. My orthopedic doctor made it sound like it needed to come out immediately, but now I am worried that the neurosurgeon will send me on my way. He is supposed to be the best in the city and I will let you know how my appointment goes. If he's familiar with the condition and willing to remove it, you may want to make an appointment with him since you have not been successful with your local doctors. I am 52 years old and live in New Orleans. I don't get on here often, but if you would like, you can e-mail me at lvwalker9@aol.com.

My syrinx is where the cervical and thoracic meet. C6 to T2. I believe your symptoms are likely caused by your syrinx. I have a lot of similar symptoms. My hands and feet burn and throb. I also have weakness in the hands and feet, more so on the left than right. I get stabbing pains in my neck and shoulders and muscle spasms in my lower back. I also get a positional vertigo. I have heard that people experience a cape like area of pain with cervical syrinx, I wonder if this is what you are experiencing when your diaphram and such have issues.

I am in cleveland and we have some of the best doctors in the country here. Between University Hosp and Cleveland Clinic I have seen 2 pain management doctors, 3 neurologists and 2 neurosurgeons. None the less, I havent made any progress. All the doctors have heard of SM, none of them treated me like a psych patient, but the answer is always the same. Treat the symptoms. I am not a candidate for surgery, in fact, my scans were reviewed by Dr Benzel who is a top neurosurgeon for SM. He wouldnt even see me, sent me to a colleague, who explained that I was not a candidate for surgery and that I need to just treat the symptoms.
I didnt want drugs either, we are naturalists here, we take echinacea for colds, and use grapefruit seed extract for ear infections etc. The pain was awful though. I started taking St Johns Wort, because it is a natural nervine. It wasnt enough. I was diagnosed in Feb 2012 and I now take the maximum dose of Gralise daily (1800mg), 8 mgs of Zanaflex, a high bp pill and benadryl every single day. And Im not sure what to do from here, my pain is still averaging a 7, my right foot is beginning to drop like my left. I see my neuro on Tues and we will see where we go from here.

You may want to start with Physical Therapy, I was in PT for about 18 mos, they helped me learn about proper body mechanics and how to put my hip and shoulder back in place (after the muscle relaxers joints seem to be too flexible). I got a new bed and couch that support my back better, I use proper posture and I sleep with a cervical pillow. These things made a huge difference, I still have pain but the tingling and numbness is lessened.

I have a cervical syrinx from C-2 through C-7, medial dorsal column of spine. I have right side fcae tingling stops right in the center of my nose and chin. I too have deep pain under base of skull and severe muscle pain across shoulders down back and a crazy terrible clamping sensation around ribcage. I also have a lot of burning cold sensation down both arms and burning in the bottoms of my feet. I developed all of this after a rear end accident in June 2013. I take tramadol 50 mg q 6 hours just to keep my pain level at a 6. Long story short, I'm in Texas and the closest specialist doctor is in Aurora Colorado. i am not a canadate for surgery as mine is 3 mm wide. I have no Chari and my brain MRI was clear, no lesions. I'm so sorry for you pain, I do understand, 8 months ago I was working 40 plus hours a week as a Respiratory Therapist (had worked with same job for 12 years) and managed my husbands business books. Now I can't manage my home, much less anything else. Please let me know if any of you have the clamping sensation around rib cage...it's pure hell. Also if some meds work better than others for you.

Hi Susan. I have had similar symptoms. My neurosurgeon is Dr. Donald Behrmann and his office is in Winter Park, FL a suburb of Orlando. He did my posterior fossa decompression for Chiari Malformation in 1996. He did not place a shunt. Turned out the decompression caused the syrinx to collapse somewhat. My syrinx extends from C2 to the bottom of T7, and is 15mm in diameter at its largest point. Most docs will tell patients "A syrinx doesn't cause that type of pain. See, it says so right here in my medical book." UH, YES IT DOES!

My CM/SM is familial and I have 4 family members who all have had similar symptoms, so I know the syrinx is causing them. It's sad that we have to educate our doctors, but educate them we must.

Good luck dear. Gentle hugs.

One more thing...your ribcage is likely suffering from wicked muscle spasms. Yep, there are even muscles on the inside of your ribcage. I take soma plus baclofen and most of the spasms have quieted. Ask your doc if you can try a muscle relaxer to see if it will help. Worth a try...

Hi I'm new here , First reply here ,,
My deal & tumor ( double wammy ) in @ T8-9 level ) I'm on fentanly 25 Mcg patch every 48 hrs ,,helps alot .and tramadol 4-6 hrs ..
incredible pressure pain in chest , and back tightness in chest when I inhale & shortness in breath ,, was diagnosed in 2009 ,,on disability since 2012 .. increased numbness in feet to ankles an weakness in legs ,,I have to make sure my feet are under me before I take a step OR I'LL FALL ..and I have fallen alot ... and I just get up I keep going ..the paralysis in guaranteed ,,,weither in 2 yrs or 10 depends on the determination of the person ...

i'm a fighter ...and I still drive a truck (casually CDL )3-4 days a month ...in the northwest ...some days are really bad when the pain breaks through the fent . & tram . and ibufrofen / tylenol ...then I use a tens unit ..neuro stim ..
the numbness in tingly / weakness in legs bothers me the most ..
the thought of a WHEEL CHAIR depress me the most ...i RATHER BE IN HEAVEN ...per say ...so I keep fighting !

exlong haul sent you a note

hello everyone. my first post here
so i recently got diagnosed after the radiologist found the syrinx on MRI and it was neither a neurologist nor Neurosurgeon who picked it up.
i have read through all the replies and can relate to almost everyone here i guess. this is bad news when u know abt it but it can be arrested and you can have some recovery if you find the cause and go for surgery.
the unique thing about syringomyelia is that every patient presents with a different set of symptoms and that is not how doctors are taught to diagnose. they follow a checklist.
as you all might have found out by now, this comes under the neurosurgeons and the primary cause of the formation of the syrinx is an abnormal CSF flow. this can be because of a chiari malformation (49%) or a tumor or inflamation of the arachnoid matter that absorbs CSF. your doctor needs to find out what is causing the bad csf flow which resulted in more of that fluid being pushed down into your spine. if he/she says that it is most likely idiopathic u need to stop seeing that doctor as it is rarest and a diagnosis of exclusion.
you dont have to rely on your doctor 100%. u can be a well informed patient, do ur research make your own checklist and take control.

Hi to all. I've posted elsewhere on this site re syringomyelia. I live in the UK and am very unhappy re lack of guidance, knowledge and attitude of 3 neurosurgeons I've seen. First one retired after really only advising me to avoid bungee jumping! However he was better than the next two, one the epitome of brusque and arrogance and the other who cannot use plain English and has no interpersonal skills.
Anyway, my syrinx is T3-11, I don't know the width but it is post traumatic after an RTA in 1981. I'd had weird sensations mainly re mobility for years and was finally diagnosed in 2007. My syrinx is inoperable, but I suppose if it expanded into my Cervical cord there may be a case for intervention. I recently queried autonomic dysreflexia, which can become a medical emergency, with specialist nurse who referred to Consultant. Neither of them knew anything about it which is shocking because I've been advised I have potential risk of as my original injury was #T5-8!
When I first started to research this condition as clinicians were useless, I read about the cape-like distribution of pain over neck, back and shoulders which I've had for years. Latterly the specialist nurse advised that the syrinx will only effect from below site, so for me basically all I have problems with from chest level and below! It appears I must attribute pain above this level to fibromyalgia which I was diagnosed with in 2013. I'm forever tired with little sustainable energy and sought explanation for this. Fibro is more a diagnosis of omission so can be rather contentious! Although a syrinx will be evidenced via MRI, this is only of value insofar as that is not in doubt. But as others discover, clinicians understand little and offer little. My accumulated knowledge and research (I was a mental health nurse for over 20 years) and logic attributes my widespread pain, discomfort, fatigue, spasm, spasticity, elimination difficulties and most worrying - mobility problems, to the syrinx. Coming to sites like this is of some value but I find that people seem disinclined to embark upon regular discussion?

Hi everybody. I am new also. I have a thoracic syrinx (T5-6)with similar symptoms mostly below the site. I am due for another MRI and will be seeing some recommended neurosurgeons. One of whom is a pediatric neurosurgeon. Pediatric neurosurgeons have more experience dealing with shunts so I'm hoping they will consider me a candidate for surgery. I will pray for all of us that we have a good outcome. This is scary stuff. I'm feeling depressed about it as I'm sure alot of us are. Looking for ways to cope with that.

Hello amazing people. I am new to the group. I have to start by saying how thankful I am to find this group and the unifying shared experiences. It has been years of inexplicable symptoms ranging from facial numbness, muscle fatigue, immense nerve pain, shoulder grinding and locking, seeming paralysis, migraines, tightness in the neck and back, and a few others. My syringomyelia was found between my cervical and thoracic regions. A fluke discovery when they noticed diminished cerebral fluid flow when completing an MRI for a massive herniated disc in the lumbar region. They soon found several other spinal problems including the syringomyelia. It has been five years and it was not until I had emergency surgery to my lumbar spine to save my ability to walk (approximately 8 weeks ago) that I was assigned a neurosurgeon who tied the majority of my symptoms to the syrinx. For anyone in California Dr. Goradia (a neurosurgeon) and his physician assistant was the only neurologist, neurosurgeon, or doctor who had any clue.
Thank you all for sharing your individual experiences and providing sanity for those of us who can finally understand the cause of the symptoms instead of having nightmares about what Dr. google says possible causes are to the most random symptoms.
Warmest Regards,
Jacquelyn