Syringomyelia

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Re: Syringomyelia

Postby reedy » Fri Mar 11, 2011 2:17 pm

{sorry - now posted online my last sentence looks shouty! Wasn't meant that way - I intended just to highlight it as my summary sentence as it was a bit of a rambly post.}
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Re: Syringomyelia

Postby Harrybaby666 » Mon Mar 14, 2011 12:12 am

Hi Ready,

I just want to chime in here and say I was just diagnosed in December 2010 with having the syringomyelia WITHOUT the Chiari Malformation as well...my syrinx was caused by a "harmless" spinal tumor that was discovered in an MRI a number of years ago and I had been advised that it would NEVER bother me....Yeah....RIIIGGGHHHTTTT....I was diagnosed with a syrinx that starts at T7 and Goes to T10 On December 15th, so I am so very new to this. I know this must be very overwhelming to you as it is extremely overwhelming to me as well.

So far, I am in pain 24/7, and although I am on the generic Neurontin and the generic Robaxin, which do help, I am still in pain no matter what, and I do have my good days and bad days, and when I am having a really bad day, besides the pain, it feels as though someone had poured a 55 gallon drum of starch into my bloodstream as I get EXTREMELY stiff starting with the neck and affecting my upper and lower torso, my arms, hands and fingers and my legs and feet.

I have also started to get numb spots in my upper torso as well as in my right foot and when I take a step, sometimes I cannot feel the floor beneath my foot and I fall, so I do have a wheelchair coming in about 4 to 6 months (thanks to the slow progress of a certain type of medical insurance) as I don't trust myself or my legs. My neurologist has told me that "muscle wasting" has started. I am also to the point where I cannot walk very far because the more I use my muscles, the weaker and weaker they get (I notice this most when I have to walk from the North Station train station in Boston to Mass General Hospital....this is no easy task...).

As for the doctor who told you that Syringomyelia causes no pain.....that is not true.....because when the heart or blood pressure goes up, it forces the fluid in the syrinx down and thus causing pain....for me, if I get angry or stressed, the pain sets in BIG TIME...and it does not go away very easily either.

As some of the others have also stated, I do have the same kinds of fears about what the future is going to hold and honestly, I am pretty darned scared. I am only 44 and the thought of being in a wheelchair is a horrifying thought, although I know it is necessary not only to ease up on my failing mobility but also to protect me from falling and doing more harm.

I just wanted to let you know that I share with you any fears and questions and total frustrations that you may have, and you can PM or email me any time should you want to share info, or frustrations or successes....

I also agree that there should be a separate section for those who are afflicted with SM only as this would really bring to light the fact that there ARE other reasons for Syringomyelia other than the main cause of Chiari Malformation.

I hope I have helped in some small way....Harold Lowell....aka Harrybaby :mrgreen:
I may not be able to kneel to pray, but I can still bow my head to give thanks and to pray.....
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Re: Syringomyelia

Postby passmass » Sun Mar 27, 2011 10:17 pm

I have A Syrinx from C5-T2. It seems to have been caused by a ruptured disc, C6 ruptured into spinal cord. I do have EDS which caused the disc to rupture. I also have had thetheted cord surgery. I have Chiari also. see complete list on tag. My Chiari is not as big of a problem as other issues. It seems to be a get one get all sometimes.
Good Luck Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
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Re: Syringomyelia

Postby mad254 » Mon Mar 28, 2011 10:10 am

Hi Everyone,

I have been asked to participate in the NIH clinical study on syringomyelia. They said they are only excepting 120 people . At the same time I was notified of this I went into NYC and saw a new NS . I brought all the info from the NIH with me as well so he could follow up. The NIH said this was excellent to do , because they do not replace my doctors at home.
Friday I am being sent for a full body MRI from the brain to the lumbar , Cine of the brain and contrast for the Cspine . This is the first time since 2006 someone has sent me for any extra tests beside a plain mri of my cspine. I like my new neurosurgeon . He seems truly interested in finding out why I have this cyst! It still could come out idiopathic but at least we will know for sure.
The NIH said this was excellent because thats what they would have been doing as well, but there is a 6 week wait list from now at the NIH for those tests to be done. I will send my results down to them.

I am allergic to the contrast called Gadolinium so I have to be premeditated with steroids the before the test and it will probably last over 2 hours in that machine UGH ! I am trying to stay calm but am a bit anxious. Does anyone know if taking something to calm down would effect how your spinal cord flows? So here I go on my next journey. Yesterday I felt pretty good and today I am in a lot of neck pain and I just hope I can take something for this during the tests on Friday. Thanks everyone for being there for me too ! Praying for us all

Madeline
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Re: Syringomyelia

Postby jfreema » Mon Mar 28, 2011 10:21 am

I'm glad you're getting the help you need! I take Xanax for MRI's. No one has had a problem with me doing that. Best of luck to you!
Jennifer
Pre-Op: SM C2-T4 (2mm C2 to C5, 6 mm C5 to T1, 2 mm T1 to T2, 7 mm T2 to T4), CM 8 mm
PFD surgery May 2010
Post-Op: Syrinx has completely disappeared - no evidence at all!
Surgeon: Dr. John Heiss at the NIH
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Re: Syringomyelia

Postby mad254 » Mon Mar 28, 2011 10:44 am

Do you think the steroids, benedryl and a xanax would interfere with the flow of the fluid? I am waiting to here back from the NS today about that very question so I will post as soon as I find out! After this test I will fed ex the results and get started with the NIH study. Thanks for your help !
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Re: Syringomyelia

Postby karenb » Thu Mar 31, 2011 10:54 pm

Madeline,

Congratulations on your good news. If you do choose to participate in the NIH study, I really hope it helps you. I also hope it helps them learn more about what the rest of us are going through.

Karen

P.S. I'm jealous!
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Re: Syringomyelia

Postby mad254 » Fri Apr 01, 2011 6:54 am

Ok today the day for the CINE , Brain, contrast and C/ Lumbar, Thor/ MRI UGH !! Should take over 2 hours. Next week I will know for sure if this is truly idiopathic SM or not. We are desperately needing more information. research and cures for our disorders and if I can help by participating @ NIH at least i feel i have helped .

Karen did you ever get a CINE MRI? I am sorry the surgical option didn't work out for you at the NIH and you are suffering so ! I wish you all best and wish i could help you!
I wish we all lived closer then we could fight harder ! I just signed a petition that was stating the govt wanted to cut funds to the NIH!!!!


I will let you know when the results come in.

Madeline
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Re: Syringomyelia

Postby karenb » Fri Apr 01, 2011 4:45 pm

Madeline,

I have not had a CINE MRI - none of the facilities here can do one. (Heck, when I moved here 4 years ago, the only way to get your MRI output was on film - no CDs!)

The neurologists at Barrow (in Phoenix) didn't feel that a CINE MRI was needed (but they did order full spinal MRI's & MRA's), but I'm not sure whether they'd know a syrinx if it hit them on the head (ROFLOL).

I've been on disability since mid-2008, and my last big MRI work-up was done last summer (2010). I've decided that, at least for the next few months, I want to focus on living and catching up on things I've missed during the past few months. Unless there's a dramatic change, I'm probably going to wait until next year to get another MRI workup - maybe I'll go back to Phoenix, or maybe I'll try my luck with Dr. Oro in Colorado (it's only 140 miles further away...).

Best wishes!

Karen
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Re: Syringomyelia

Postby mad254 » Fri Apr 01, 2011 10:39 pm

Karen ,
Thats funny what you said about the MD not knowing what a syrinx is even if it hit them on the head !! LOL !!! Well i survived the whole 2 hour test today with the CINE and contrast plus 3 hours of driving in the rain and some snow ! Thank God that is over and now I will have to wait the weekend. I know what you mean about all the MRI's and tests. I have had 4 cat scans recently also because I was sick for 6 months with chronic sinus infections , constantly going to the ENTs , trying 4 different antibiotics and steroids and finally had to get surgery this Jan 28th. I have been going for weekly follow ups for that and now this again . I also had 2 other MRI Nov and Jan so I am burnt out with all these tests. Oh I forgot my new NS is also sending me to a nuero ophthalmologist to do a pressure study in my eyes . He said that also shows about the pressure in your brain . I have appts every week this month and sometimes 2 x a week and they are all in the city so a bit of a drive. I got the copy of the CD right away and will send to NIH on Monday Fed Ex. Next week I should here from both about the results.

Take some time off like you said for mental health time minus the Md's! Like I said I wish I can help you too. I think seeing Dr Oro would be a great idea. Maybe you can send all your scans to him first and see what he thinks . Maybe he will give you a phone consultation? TTYL madeline
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Re: Syringomyelia

Postby karenb » Mon Apr 04, 2011 12:08 am

Madeline,

My calendar hurts just reading your post!!!

One trick I've definitely learned with CT scans.... leave your progressive lenses on the counter!!! I forgot & wore mine during last week's CT. I definitely paid for my omission... I got seasick (ROFLOL)!!

Karen
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Re: Syringomyelia

Postby mad254 » Tue Apr 05, 2011 4:42 pm

Hi ,

Good news is I don't have any degenerative disc disease, hydrocephalus or tethered cord. They did find that in my 4th ventricle in my brain there is some sort of blockage . That is from the CINE MRI. Back to the Neurosurgeon to discuss results and further testing. Not one doctor since I was diagnosed in 2006 with SM ever suggested a full body MRI or CINE. I am a bit irritated that no one knows anything about our conditions. All my records being done here I send to the NIH.

Next week I will call them to see when they want me to come down too.

PS Pop hollywood i hope your cyst eventually resolves and that time will make you fell even better. Did they give you the lumbar?

Madeline
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Re: Syringomyelia

Postby mad254 » Tue Apr 05, 2011 7:01 pm

Pop ,

Sorry to here about all your complications and pain. Chronic severe pain is probably the most unbearable thing to live with . Prayers to you for that pain to subside!

Did you get the CINE and contrast with all your previous MRI's before the lumbar ? How many mm was the other cyst they found through the lumbar? When was your surgery ? Did they say the nerve pain from the complication will get better? Thats just terrible .

Thanks for answering my questions!

Madeline
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Re: Syringomyelia

Postby tracergurl67 » Tue Apr 05, 2011 9:41 pm

Hi. Iam also involved in the study at the NIH and find Dr Heiss and his colleagues very helpful. I have SM w/o CM. I also have 2 herniated discs and was told that was probably the cause of my Syrinx. I suffer everyday in pain and most recently its been very bad, head and neck pain that radiates into my shoulders. I have weakness in my hands more on the right then the left. My right hand and arm seem to be colder than the left. I have dizziness and have fallen atleast 5 times. I have trouble with using my fingers to button or zip I have little strength in my right hand esp when I try and open up a bottle or gallon of milk. Dr Heiss told me that I would probably have to have surgery for my herniated disks. But Im not sure I want to do that unless I know for certain I will have some relief. Having SM is not the end of world BUT it is life changing. I can not do the things that I once enjoyed (gardening,exercise) as this brings on pain. I would recommed the NIH and Dr Heiss and his staff to anyone who has CM or SM. Dr Heiss has years of experience with SM and CM I would venture to say that he is probably an expert on them.

Does anyone else suffer with the same symptoms? If so, what have you found to help you?
Have a Blessed Day,
Tracer
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Re: Syringomyelia

Postby lostsoul72 » Wed Apr 06, 2011 5:05 am

Hey Tracergurl,
It's interesting that our experiences seem similar. I have multiple herniated discs in my T-spine and a "small" syrinx, 2 mm wide from T4-T10. Where are your discs and syrinx? My doctors have told me that the discs couldn't have caused the syrinx and they won't commit to either problem causing my symptoms. I've noticed that stress can bring on or make symptoms worse for me. Stress is something I am learning to deal with better than I use to! Deep breaths, the mind over matter thing & counting to 10 a lot.

Back, shoulder & neck pain- heat & ice, ibuprofen unless it's bad then I break out the Zanaflex. Hot shower or moist heat help a good bit too. I also try light stretches my PT showed me and pressure points to work out the tension.
Headache and other symptoms- Neurontin (1800mg/day) My pain runs about a 5 on a normal day at best with 3-4 days/wk 9-10. So we're still working on that. Taking a sinus/allergy pill with caffeinated drink seems to help sometimes.
Weakness, numbness- This really tries my independence, LOL! I will try to do things myself but I am learning that I do have limitations & ask for help if I'm having a rough day. I have a supportive family that will pitch in as needed. My right side is my weaker side and most painful too, maybe because I'm right handed. I've been trying to switch it up & use my left hand when possible. The burning pain is very aggravating for me!
Dizziness, nausea or balance issues- I don't walk in the dark anymore, LOL! The dizziness I haven't really figured out anything yet other than try to stay off my feet when possible. For nausea good old ginger ale but I also have phenergan for the worst times. Balance, I try to pay closer attention to walking & use handrails, furniture, etc. We are installing a grab bar in the shower as well as getting a shower seat- closing my eyes to wash my hair makes me woozy!

I was just dx'ed in Dec. 2010 so I'm still learning. When something new happens - here is where I come to compare war stories & take the advice I get seriously. Frustration & lack of patience with myself is probably my biggest battle! It is life-changing that's for sure- no more dancing at the club with friends, shopping trips have to be cut short- I got motion sickness pushing a cart in Wal-mart??? Lugging around my 6 month old grandson is almost over for me & wrestling with my 7 yr old grandson is no more. I will most likely have to give up my job where I worked my tail off to get promoted. But it may have been a blessing in disguise- it slowed me down & I became much more aware of things at home that needed taken care of. My family seems to like that I'm not working the 12 hr rotating shifts anymore. Maybe it's time for me to go back to school like I have wanted to but couldn't make the time for! Sorry this is so long, but I guess I had lots to say! Take care & please keep me posted on your experiences.
~Erin~
Multiple Herniated Discs, DDD, SM-2mm wide from T4-T10, Hypothyroidism, Celiac Disease, Anemia

"[i]Opportunities are usually disguised as hard work, so most people don't recognize them[/i]..."
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