Similar symptoms anyone?

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Similar symptoms anyone?

Postby gtfamily » Thu Jan 10, 2013 6:09 pm

Let me start by saying that I have not had any surgeries and I have not had any spinal cord trauma that I am aware of. I woke up 6 weeks ago with a numb right foot which progressed over the course of 2-3 weeks and hasn't really changed since. I am now pretty much numb from my hips to my toes (varying degrees of numbness depending on the area). The right side is worse overall than the left. My numbness does not come and go. It is consistent 24 hours a day. It's very annoying whenever anything touches the numb areas - especially on my feet which seem to be the worst. I cannot wear socks for more than 5 minutes, and forget shoes. I have to sleep with my feet outside the covers, because the feeling of the sheets and blankets drive me crazy. As long as I am wearing loose fitting pants, the rest of my legs, abdomen, saddle area etc can tolerate it. I do not have any numbness from the waist up. I have been diagnosed with 2 syrinx (one doc thinks they are possibly connected through very thin line that didn't show up on my MRIs). First syrinx is in cervical spine and described as 3mm central syrinx of greatest diameter at C6-7. No Chiari Formation. Second syrinx is in thoracic spine and described as multilevel from T2 to T11 with mild expansion of the thoracic spinal cord at T7 (diameter varies from 1mm to 5mm). In addition to cervical and thoracic MRIs, I have also had MRIs of brain (with and w/out contrast), lumbar spine and pelvic (with and w/out contrast). I have had EMG's and Evoke response tests as well as lots of bloodwork.

Here's my question - Has anyone had similar symptoms in the lower half of their body that doctors believe was attributable to syrinx in the thoracic or cervical spine? If so, were you operated on? One of my neurologists suggests it is unlikely my symptoms are from syrinx because they aren't typical (usually capelike, etc), but isn't sure what else could be causing symptoms because he feels he ruled out MS, lupus, tumors, etc. My 2nd neurologist felt strongly my symptoms are from thoracic syrinx and feels I need shunt put in. I am waiting for 3rd opinion from neurologist in Boston, but trying to do as much research on my own as possible and so far haven't heard of anyone with my kind of symptoms related to thoracic syrinx.

I certainly appreciate your responses!!
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Re: Similar symptoms anyone?

Postby gunflint » Thu Jan 10, 2013 8:42 pm

Welcome to our little club. It is very important to read the "Patients Handbook" on this site it will help to answer many questions. As always the most important thing you can do for yourself is find a neurosurgeon that has a successful record in working with Syringomyelia patients. There are many neurologists and neurosurgeons that know a lot less about SM than you have probably leaned in the last few weeks. The importance of an experienced Doctor cannot be over emphasized. The Neurologist that said the symptoms are more cape like is a perfect example. Yes there are members here who do have the textbook symptoms but there are at least as many that have varied and much different symptoms. That is one of many frustrating things about Sm. Usually by the time you get your diagnosis you have discovered that telling the doc more than 2 or 3 symptoms causes their eyes to roll. Many here have been accused of doctor shopping for meds. When the correct diagnosis is made they usually don't apologize for the accusation. Good luck and please feel free to ask anything as there are a lot of good people here that would be happy to assist you.
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Re: Similar symptoms anyone?

Postby wildfyr » Fri Jan 11, 2013 12:01 am

Good evening, I have had numbness from my hips to my feet for a few years now. I have thorasic syrinx. The numbness is mainly on the outside of my hips to the outside of my legs to the top of my legs and the top of my feet. I tried different meds for it and nothing helped. My symptoms have advanced to the point that my lungs and organs are involved. I was told a little over two years ago that I am terminal due to the things that sm has caused. They gave me two years and I am still kicking. Take care of yourself and good luck. Che'ri
sm T-4 thru T11,3 hemangiomas T11&T12, scoliosis, in respiratory failure Jan: 2010 now terminal, Voice effected, ., being put on portable ventilator and soon a feeding tube due to aspirating into my lungs. December, 2010, colostomy pending
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Re: Similar symptoms anyone?

Postby reedy » Fri Jan 11, 2013 3:20 pm

gtfamily, sorry to hear about your numbness and irritation.
wildfyr's comments could be quite useful for comparison (but keep in mind every situation is different).
I thought I'd mention that for my treatment it was also not clear what to do - I got input from something like nine different specialists (in the US and UK) before I decided which one had the right approach for me. So don't be surprised at NSs having different opinions, and get as much input as you can manage. You will learn something from each doctor, and also clarify your perspectives as you go through with getting input. These are complex puzzles to solve, and usually there are no single correct answers as there are trade-offs in all approaches.
In the end, I was lucky enough to get accepted on the NIH SM study, and I also like Dr Heiss' judgement and trust him enormously. I've had two surgeries from him. I have a cervical syrinx only, but a fair amount of CSF blockage at about C5-C8. One surgery put in a lumboperitoneal shunt to see if it would just rebalance the CSF better. That surgery was not too bad and the recovery was relatively quick (but note that it didn't go in to the spinal cord at all, as I don't have a syrinx in that area). Unfortunately it didn't solve the main issue, which is my loss of hand function. So the following year it was clear we needed to try intervention in the cervical area to try to limit the syrinx. There was quite a contrast in viewpoints among NSs as to whether I should have a shunt put in or not (I'm still under care of an NS in London, as well as checking in at the NIH). Dr Heiss was very thoughtful and weighed up all the input, ran as many tests as he thought he could do, and in the end took my scans to a conference so all his SM NS pals (including Dr Ulrich Batzdorf, Dr Barth Green, and others) could give their opinions. Dr Heiss actually changed his mind quite considerably on what surgery to pursue in the course of getting all the evidence assembled and conferring with others. I respect that. He's a person who doesn't follow a few set recipes - he looks carefully at all the variables and makes a more holistic judgement. We decided to go with a high-level dissection of the arachnoidisis, and syringotomy (popping a hole in it, basically) but not putting in a shunt.

Have you asked about getting on to the NIH study? Have you called other specialists to see if you can send your files to them for an opinion? What I did- I looked at the scientific literature (using Google Scholar) to find out who is doing the cutting edge research on my condition,then I'd look to see if they take patients and I'd call or write to see if they would look at a copy of my scans, given an outline of my diagnosis. Or I'd schedule an appointment to see them.

Good luck with your continued research on this, and with finding a surgeon and plan you are comfortable with. Its hard work! And a huge psychological drain. And expensive (depending on whether you have to travel and pay for consultations, which I did). But its what you've gotta do!
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Re: Similar symptoms anyone?

Postby tnglitter » Thu Jan 17, 2013 6:08 pm

I sent you a PM response, please check your inbox.
T Spine SM T8-T12 (9 mm) Syringopleural Shunt & Laminectomy T10/T11 5 Jan 09
C spine Disc bulges/canal narrowing/DDD
L spine Spondylosis/DDD

Mom of 3 daughters & MiMi to 2 grandsons & 1 granddaughter
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