help info please

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help info please

Postby alzo24 » Thu Sep 29, 2011 9:39 am

Hello im very thankful ive found this place im from the uk and the doctors here seem very confused as to what is actually wrong with me , I have as follows
congenital scoliosis caused by hemivertabre and cervical c6/c7/t1 congenital fusion , this caused me to develop scoliosis in my late childhood early teens .
once this was diagnosed I had a mri done which detected a syrinx in my lower cervical section this was played down at the time by the orthopaedic surgeon and told it was nothing to worry about , so I had spinal fusion and Harrington rods inserted to stabilise not correct .
Now 10 years later ive started having a lot of right arm pain/numbness so after seeing my new consultant he sent me for another mri as he was concerned about the syrinx ( i though it wasn't am issues its a little cyst I was told nothing !) the mri detected a small syrinx from c6 to t1 don't know the exact mm but its small compared to what ive seen on the net . the consultant said its too small to cause me any issues as yet and its most likely( but he didnt seem to sure to me ) a prominent central canal whatever that is . im waiting to see a neurosurgeon as he carnt explain my symptoms and after reading up of these syrinx and what they can do its scared the sh*t out of me
oh sorry by the way i have no chiari and the upper cervical spine and the junction as they called it are 'normal' as they put it


any ides from you guys

thank you
alzo24
 
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Re: help info please

Postby alzo24 » Tue Oct 04, 2011 10:15 am

hi everyone ive started to get muscle twitches in my thigh/calf/foot they are only very slight but constant so are really annoying . my feet also feel warm/fuzzyish and prickerly , i know from reading the other posts that any symptoms are possible with this but I really need some advice and thought id finally found the place with this site . on the more positive side the arm pain has really subsided but I just don't feel right its hard to describe .

Please help
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Re: help info please

Postby airsense00 » Fri Oct 07, 2011 1:07 pm

Syrinxs are mean little cavities. Even small ones can cause nerve damage. It sounds like you are starting to get damage. The syrinx acts like a slow but progressive water hammer to your spinal cord. Without chiari you have an idiopathic syrinx probably from the scoliosis. Your best but is probably pain management but if the syrinx gets bigger and symptoms worsen you can get a shunt put in to drain the fluid. These are not a walk in the park as they can clog and should be checked/ repaired regularly. Anyone with shunts chime in please. Some symptoms you have to live with. I have SM also and some nerve damage that did not heal after surgery. Good luck keep us posted. Your not alone and people here are glad to help.
29 year old chiari 1 with syrinx c4-t8. Surgery Feb 2
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Re: help info please

Postby June » Sat Oct 08, 2011 5:39 pm

Sorry you are having problems. I agree with airsense--sounds like you are experiencing the results of nerve damage from the syrinx. One thing which is very important for all of us with SM is to consult a neurosurgeon who specializes in CM/SM. (Here in the US it is hard to find a specialist in SM; most are Chiari docs who also treat syringomyelia, but the good ones know both maladies very well.)

Even really good neurosurgeons can mess you up IF they don't know the subject, and as many of us have learned the hard way, some doctors don't know about or believe in CM/SM. So be sure you've got a good doctor who knows about syringomyelia. Then you may need to do tests to find out just what is happening and possibly have a shunt put in. But as airsense says, be cautious about shunts: they can be very problematic, because they become clogged, move out of place, get infected, etc, etc. Many of us just use pain management, eg: pills, mainly, to deal with SM. There is much for you to learn about that, so a good pain management doctor is necessary, too.

One thing you can do is to educate yourself about SM. Find out as much as you can about the subject; that will help you understand what is happening with your body and also understand what the doctors are talking about. SM is likely a lifelong commitment, since you don't have chiari, so get acquainted with it. And even a small syrinx can cause problems, so don't accept that without further investigation.

There is so much more, but I hope this will help a little bit. Keep in touch, and let us know how you are doing. We are all in this together. --June
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Re: help info please

Postby alzo24 » Wed Oct 19, 2011 1:56 am

here is my link to the mri image of my syrinx , please let me know what you think from your experiance and knowledge.
is this a prominent centeral canal as my doctor tells me ?
is it too small to cause my symtoms as he tells me ?
http://s1122.photobucket.com/albums/l52 ... 8718781117
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Re: help info please

Postby alzo24 » Fri Oct 21, 2011 2:31 am

hi my symptoms have been getting worse especially in the legs the fuzzyness feeling has changed to full on freezing cold especially in the feet I cant warm them up no matter what I do , I also started getting nausea , light headed , burning in right bicep and occasionally getting a electric shock in my fingertips when I touch things. Please have a look at my image and comment as best you can for if you think the syrinx is large enough for me have symptoms and if you can see any cause for the syrinx being there eg chiari or if you think my vertebrates are the cause and if it can be stopped

thanks
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Re: help info please

Postby June » Fri Oct 21, 2011 3:38 pm

Yes, I think the syrinx is large enough to cause symptoms. But I'm not qualified to read your MRI, and I don't understand the rest of what I'm seeing--looks to me like a large central canal with a good-sized syrinx. But please don't read too much into that. I am not a doctor, and I don't really understand this.
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Re: help info please

Postby alzo24 » Wed Oct 26, 2011 2:01 am

Hello everybody

i was really hoping from more feedback regarding my mri image as seeing nearly everybody on here as either had a syrinx or still got one , so please guys what you think and can you see any signs of chiari as ive up till now only seen an orthopaedic doctor and he wasn't really sure what he was looking for .
My NS appoitment is in two weeks
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Re: help info please

Postby syrinx48 » Wed Oct 26, 2011 4:40 am

First of all I am no doctor, or anyone who is qualified to make remarks on your MRI image. From what I can see is that there is a small syrinx, but you also have some sort of scoliosis so that from one picture you cannot tell what the problem is. Do you have axial pictures, that will make it easier to see, also what diameter it is. Even when the syrinx is small, doesn't say you can't have problems from it! Don't let them tell you that it can't cause problems, a lot of us has heard that.
I see also some osteophyts above your syrinx. Has a Cine MRI or flow MRI been made, to see if there are csf flow disturbances or blockage?

Sorry I can't help you further.

Annemarie
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Re: help info please

Postby alzo24 » Wed Oct 26, 2011 10:15 am

hi thanks for the replay yes i do have more images an entire disc full so will upload more soon when ive got the time .
i do have congenital scoliosis but as for as im concerned that's been fused and 'fixed' so to speak and hasn't caused me any issues since the last op over 10yrs ago .
I do get a lot of cracking/clicking in my neck but I think that's from the degenerative disc above the BLOCK vertebrae I was born with and guessing that was what you was referring to .
I have just had a standard MRI done and been referred to the NS so hopefully he will request a more detailed MRI that you are referring to.
They think I was born with the syrinx as i say above it was first detected when i was 10/11 and i was symptom free for 25 years so its only now im staring to feel seriously strange/ill/weird or however you can describe these strange symptoms


thanks
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Re: help info please

Postby Gill » Mon Nov 07, 2011 8:47 am

Hi Alzo24

The challenge with most of the neurologists and neurosurgeons you bump into is that they know very little about Chiari, and even less about syringomyelia. It's worth getting an opinion from a really expert neurosurgeon, and these are few and far between in the UK (or anywhere, come to that).

Consider Graham Flint at Queen Elizabeth Hospital, Birmingham who I saw a while back; or the Walton Centre in Liverpool that I recall being recommended by someone else on this list.

These are both NHS centres - you might need to do a bit of pushing to get a referral, but it should be possible.

Good luck.

Gill
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Re: help info please

Postby alzo24 » Mon Jan 09, 2012 4:20 am

HI all
Its been a while since ive posted on here and boy have things gotten worse , I now have near constant pain & stiffness in the upper back , neck , shoulders , arms , fleeting numbness in hands & feet , burning in toes , calf's are still constantly fluctuating but more a aggressive random twitches all over the body have started , slight weakness in the legs & sometimes feel like there quivering , nausea , dizziness and ...... a lot of other things I could go on all day !

Now for the worst part vie seen two neurosurgeons the first one said the syrinx is too small to cause issues and to forget about it but he will keep a eye on me with a mri in a years time or so . I was unhappy with this so i went to a neurosurgeon who is listed as a chiari/sm specialist , he stated my syrinx again is too small for issues and that's its congenital and has got no worries about it and for me to forget about it and live my life as I want with no restrictions .
As for the symptoms neither could give me a explanation apart from test me for ms which or suggest it must be the scoliosis ( that is madness ive had this for years and doesn't cause symptoms liker these) or its stress or physiological because of worry/anxiety.

im just lost and in pain and i can feel things getting worse and the future scares me , I carnt even get a doctor to recognise there something wrong with me let alone help .

ps the neurosurgeons have looked at the mri image i posed on here that's dated from July ( I saw a ns in November & December ) and when ive said things have gotten much worse since this time and things are obviously changing , they laugh it off and say the scans from July are good enough for them to be confidant in there diagnosis basically .......wtf!!1

what do i do ? , ive seen supposedly the best ns in the area
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Re: help info please

Postby Beverley » Tue Jan 10, 2012 4:54 pm

Hi Alzo24,

The one thing I can tell you from experience with Chiari, Syrinx, and herniated discs is that the symptoms that you get from each overlap so much. I had decompression surgery and then physical therapy that in part led to a herniated disc at C5&6 and the symptoms that I got from that were very similar to the Chiari/Syrinx symptoms except they were worse. Before I had spinal fusion surgery I could hard walk at all even holding onto something. Numbness and tingling and pain in my neck, shoulders, arms, hands and head were pretty bad also. But had I not experienced one as a result of the other... i.e. I have an MRI that clearly shows my disc is fine prior to surgery. If not for that I would not have know that it was a separate issue. I did really well after surgery and one day during Physical Therapy something strange happened and everything went downhill from there. So if not for know where the difference was the symptoms are so very similar that it can be impossible to tell what is causing what problem. Before my fusion surgery I was in a wheel chair and could not walk at all.

You may need a REALLY good NS to look at your scoliosis and other issues and the syrinx to determine for sure if there may be some other issue to go along with the syringomyelia. It is hard because NS do not like to work on or critique another NS's work. It is not to say that it is not the syrinx that is causing the problem but so many other issues it could be just a part of the problem.

I hope this helps a little... You may have to see many who don't have any answers to find the one that does.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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