Syringomyelia

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Re: Syringomyelia

Postby chrisw » Wed Apr 06, 2011 4:13 pm

mad254 wrote: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


Jumping in here- did you get to listen to Dr. Oro's talk on this? He called this Chiari Zero or Chiari .25 or .5... I guess it is his thinking that Chiari isn't the herniation but the blockage in the brain sometimes (usually) causes the herniation.

I don't know if your docs used the same terminology or even consider this a problem like he does. If you don't get positive results Dt. Oro in Colorado might be a good second opinion!

:)
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: Syringomyelia

Postby tracergurl67 » Wed Apr 06, 2011 8:10 pm

[size=150][color=#BF0040]Hi lostsoul72

[color=#FF0080]I have herniated cervical discs at C5-C7 w/syrinx @ C6-C7. I was dx with it almost 3 yrs ago after having stroke like symptoms. It took me going to the NIH to hear that I have the herniated discs and that "may be" the cause.(after numerous MRI's and CT scans and a CINE MRI) Ive had doctors tell me it was all in my head and that it must be stress! I have to come to the "REAL" realization that I must be my own advocate for myself and my health. I know what I feel and how I feel. Stress....ugh if I had to hear that one more time .... I might just really show them what stress is. What "stresses"me out is the fact that no one would really consider my symptoms and what I was saying and feeling until now. It will be 3 yrs in June. I have not gotten better in these last 3 yrs infact I seem to have gotten gradually worse. Some days are totally unbearable and others are "tolerable". with that being said it these health issues may have come into my life..BUT Im not going to let them take the life out of my livng. I have a wonderful and loving and supportive husband and 3 kids and they all see what I go through and they just want me back to old me.

Thanks for asking about me. I wish you well. :)

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~[/quote]
Have a Blessed Day,
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Re: Syringomyelia

Postby tracergurl67 » Wed Apr 06, 2011 8:17 pm

Hi lostsoul72,

I have herniated cervical discs at C5-C7 w/syrinx @ C6-C7. I was dx with it almost 3 yrs ago after having stroke like symptoms. It took me going to the NIH to hear that I have the herniated discs and that "may be" the cause.(after numerous MRI's and CT scans and a CINE MRI) Ive had doctors tell me it was all in my head and that it must be stress! I have to come to the "REAL" realization that I must be my own advocate for myself and my health. I know what I feel and how I feel. Stress....ugh if I had to hear that one more time .... I might just really show them what stress is. What "stresses"me out is the fact that no one would really consider my symptoms and what I was saying and feeling until now. It will be 3 yrs in June. I have not gotten better in these last 3 yrs infact I seem to have gotten gradually worse. Some days are totally unbearable and others are "tolerable". with that being said it these health issues may have come into my life..BUT Im not going to let them take the life out of my livng. I have a wonderful and loving and supportive husband and 3 kids and they all see what I go through and they just want me back to old me.

Thanks for asking about me. I wish you well too. Please keep me posted how you are doing as well.

Tracy
Have a Blessed Day,
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Re: Syringomyelia

Postby tracergurl67 » Fri Apr 08, 2011 2:10 pm

pophollywood,

Yes it is a daily ordeal when my unwelcomed quest arrives.."PAIN"( 24/7) I try to live each day to its fullest, I still go on with a smile because its mind over matter. I hope that by being involved w/the NIH and Dr Heiss ....that the end of this pain will come sooner rather than later. 3 years is long time to not have the answers but I think I am finally seeing some light at the end of this Syringo tunnel.
Have a Blessed Day,
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Re: Syringomyelia

Postby ssusan33 » Sat Apr 09, 2011 4:36 am

i have sm and i was wondering can popping of the neck irriate it more or is it ok because when i dont pop it my neck starts hurting and when i do it feels much much better ???????
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Re: Syringomyelia

Postby mad254 » Sat Apr 09, 2011 2:05 pm

Susan ,

I would definitely ask your NS about that one? They would know the best . Good luck
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Re: Syringomyelia

Postby reedy » Tue Apr 12, 2011 12:45 pm

Hi all,

I've just been discharged from the NIH where I had a lumbar drain put in to deal with my syrinx. It was an interesting process. I agree that Dr Heiss really encourages confidence. One of his colleagues (Dr Iskandar, UnivWisconsin) described him as a very thoughtful surgeon, and I would agree. He considers all the evidence, doesn't hesitate to reassess his original opinion based on new data. This is an unusual and very desirable characteristic in a surgeon, in my opinion.

In short, when I checked in, he thought the best tactic to deal with my multi-part syrinx (with a bubble at about C6 and a long skinny syrinx to T5 (? - sorry can't remember exactly where)) was what he called 'the direct approach'. That is, try to dissect away the arachonoidiasis that is holding the spinal cord to the walls. He also thought that a syringopleural shunt might be the next best option. Both are pretty invasive, heavy surgeries, but would address the root cause of the syrinx. By the end of the week, based on my new MRIs, flow study, myologram, he thought that his first suggestions were not likely to help as much as he had hoped and would certainly lead to a few new deficits. He suggested either a lumbar shunt to the peritoneum or to do nothing. My symptoms are increasing notably, so we decided to go for the shunt. The scary part was a) how much they put this decision in to your hands (we felt overwhelmed by the enormity of such a decision on limited data) and b) how little previous data there is to go on and c)how fast we had to make our decision. We got our results on Thursday night late and needed to be ready for surgery by 7:30 the next morning. We decided to go through with it, so Friday April 1st I had the lumbar shunt put in.

On the evidence base for what to do, Heiss said 'Its not clear whether this kind of approach will help. The data is limited, with small sample sizes. Some studies show 30% success, some 50% success, some 100%'. Well....that's all I knew when we took the decision to do the surgery. Afterwards I got a copy of a study* providing data, and summarising other results. Do you know what they mean by small sample sizes? In my line of work I'd have guessed 50 people, or 100 or 300.... but when you look at how many patients are comparable and who actually showed up for follow up data collection, the numbers are something like 3, or 8..... so no wonder we don't know yet! We are blazing the frontier for treatments of SM!

So far so good. I had about 1 week of spinal headaches (very annoying -they suck the life out of you) but I was walking (slowly) almost immediately. Headaches now gone (though I feel fragile and at risk of having them again). I am walking, but also having huge problems with stiffness in the legs and muscle pain in the region around my upper thighs, gluteus, femur area. Although it aches when I walk or just stand, I'm optimistic the pain will go away since it seems to move around from day to day. My other set of pre-existing symptoms seem about the same or maybe marginally better. My post-op MRI showed no significant change in the syrinx, though it did seem to go down 1-2mm, so change in the right direction. I think there is certainly a big placebo effect going on for me. I am so positive about Heiss' professionalism that I am likely to interpret all change in a good light. But nothing wrong with a good placebo, and maybe some of it is real! I'm just hoping that this op stops my decline...that would be a huge positive result for me!

Best wishes to all of you,
reedy

* The paper is:
Oluigbo, C., Thacker, C. and Flint, G. 2010.The role of lumboperitoneal shunts in the treatment of syringomyelia. J Neurosurg Spine 13:133–138, 2010

I have the paper in PDF format and would post it if I knew how, or can send it via email if you PM me. It is short and very accessibly written. It summarises most of what I've learned about SM over the past few years. I strongly recommend reading it.
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Re: Syringomyelia

Postby mad254 » Wed Apr 13, 2011 10:15 am

I think my head is spinning from all this information or lack of information for our condition. I am awaiting the papers to sign up for the NIH study. Because I have done a large amount of the test already here they will see me in three months for the first follow up. My appt is in July.

Reedy I read the article you sent me too thank you. So far for me all they know is that I have no chiari what so ever, except if you want to say chiari 0 , but not because of any other reason they just don't know why yet. They think they see some blockage in my 4th ventricle of the brain , but no herniation, no tethered cord etc. They suspect an injury or inflammation or bleeding perhaps in the brain when i was born??? They dont know why. I am the idiopathic .

My NS here wants me to have a myelogram next but NIH didn't recommend it. As Pop hollywood stated I have to think about this one { " think it through" } and talk to family to decide and then decide if i want to get the myelogram done here before July at NIH .

I was told by some Chiari patients its not good to do the lumbar because it can cause more pressure in the spinal canal and make the syrinx worse ! Have you heard about this?

Madeline
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Re: Syringomyelia

Postby reedy » Wed Apr 13, 2011 11:10 am

I understand that myelograms have a fair amount of additional risk as they require an additional hole in the lumbar region. NIH did give me one, but only at the last minute before surgery (the day before) to confirm the plan of approach. As it turned out, I think it was part of the evidence suggesting a lesser intervention, so it provided useful information. But it also probably showed the same thing as the MRI flow study, just with different kinds of imaging.

Mad254, perhaps you can wait until you get to the NIH to decide about a myelogram. If they think it is needed they can do it there.
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Re: Syringomyelia

Postby mad254 » Wed Apr 13, 2011 11:33 am

Reedy ,

I think your right ! Especially since my symptoms are not life threatening at this point and I need just a plan for pain management and perhaps physical therapy etc. I am in constant fear that today will be the day of that death pain and it is not always like that. I have good and bad days but never non pain days. I am going to call NIH after they receive my signed acceptance forms for the study and try to speak to one of the doctors. Hopefully Dr Heiss. Does he even speak to the patients on the trial through phone? Thanks for the info !!


Madeline
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Re: Syringomyelia

Postby mad254 » Wed Apr 13, 2011 3:25 pm

Hi Pop

I am already accepted in the study . I am in. I just have to sign the papers. I didn't want to bother Dr Heiss until he sees my signed consent. Thanks GREAT to know I can call and speak to him ! I just listened to the webinar on pain management ! I wish you well and a quick excellent recovery Pop !

Madeline
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Re: Syringomyelia

Postby reedy » Thu May 05, 2011 2:02 pm

Are any of you SM folk going to the conference in Colorado?
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Re: Syringomyelia

Postby mad254 » Thu May 05, 2011 3:39 pm

I really was thinking about going but at this point my deck practically just collapsed { 2nd floor one} so we are in the process of rebuilding and must get braces for my son ! We cant make a decision yet . Plus my visit to NIH has been booked for July as well so that would mean 2 trips that month. We will have to walt until literally July before we can make that decision. Are you going? It would be so nice to be able to meet everyone. Madeline
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Re: Syringomyelia

Postby mplevins » Thu May 05, 2011 5:23 pm

HI All you Syringomyelia Suffers,

I have been newly diagnosed with the condition. I have syrinz through T5 and T9 of my spine. My symptoms include burning and acute pain on my left side. My SM voyage began with being sent to a pain management doctor to manage my pain after having a cervical spinal fusion. They ordered the MRI of my thoracic spine and that found the syrinx. As I am only the 4th patient they have seen with this condition they felt it was best that I show a neurosurgeon.

We went to a Neurosurgeon today and came away very upset. The only thing he really wanted to talk about was doing another MRI to determine if I have a tethered spine.

Any and all information would be greatly appreciated.
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Re: Syringomyelia

Postby karenb » Thu May 05, 2011 10:44 pm

Hi mplevins,

Welcome to our (hale? hardy?) group. I would suggest posting a separate post requesting input on an NS in your particular area - folks are a lot more likely to respond to that than something at the tail end of 4 pages of postings...

I have SM from T6-T9, and my SM voyage started 14 years ago with a dislocated bone in my foot... and has been going ever since. The current battle is to get my van fixed so that I can get out of the house (since I'm in a wheelchair and live in the foothills of the Organ Mountains in southern New Mexico - heck, I can't even get my newspaper or mail without my electric wheelchair!).

I would really like to attend the conference this summer - the last one I attended was the one in 2008 in D.C. - it was extremely helpful. I don't know if I can make it due to distance and timing... plus I don't have a caretaker available at that time.

For those of you eligible for the NIH study, I hope it goes well, and wish you all the best. I hear really good things about Dr. Heiss, and wish I was eligible... sigh...

A big hug to everyone, and best wishes for good/better health in the days, months, and years to come!

Karen
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