Syringomyelia

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Re: Syringomyelia

Postby mad254 » Wed Mar 02, 2011 8:03 am

Razzle

I love the quote "Once you choose hope anything is possible" !! I am sharing that one ! Actually someone from ASAP told me that when you have SM alone your best bet in a neurosurgeon experienced in spinal cord injuries. I thought that was a great start for people with SM.
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Re: Syringomyelia

Postby reedy » Wed Mar 02, 2011 10:33 am

I'm going to the NIH, almost certainly for surgery, in a few weeks! Scans from March 28th, surgery on April 1st. Scary, but the right thing to do.

I am SM only, post-traumatic.
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Re: Syringomyelia

Postby mad254 » Wed Mar 02, 2011 10:47 am

Dear Reedy ,

Praying and you sound very positive ! What type of accident did you have? I have always been curious just what type of accident could cause the syrinx ? Does it have to be a major one or just as little as whiplash? Thinking of you and hope all will be well.
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Re: Syringomyelia

Postby TPRMRN » Wed Mar 02, 2011 4:06 pm

Hello, My name is Tonya,I was Dx: 2001 with Idiopathic Syrinx T5-T9,located in the center of the spinal cord. I had to stop working due to pain 2004. The neurosurgeons do not recommend treatment because they fear futher damage. I have had to tell doctors what is wrong with me because nobody seems to know. I'm a registered nurse and I feel like we are the step children and nobody gives a s---, because it's not related to a CM. I have had doctors tell me that a syrinx does not cause pain and this was from a pain doctor. I agree that we need to be separted from others that are caused from trauma or related to CM because we are totallly different. So far the only tx. seems to be to shunt if possible and give us pain meds. I'm terrified that I will be in this much pain for the rest of my life, I'm fifty three. My meds are Fentanyl patch 100 q48h, Neurotin 600mg x 2 qid, Peracet 7.5 prn for breakthrough pain. Hope this helps and my prayers are with you. Tonya
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Re: Syringomyelia

Postby mad254 » Wed Mar 02, 2011 5:27 pm

Tonya , OMG !!! I am so sorry ! Yes I am a bit frustrated with the 2 disorders compared to being as one, because many things cause the cyst. I am so sorry you don't have the support you need. I think we need to stand strong to be able to get more funding for research that is needed for the people with SM from trauma and idiopathic .

However I think having SM along with Chiari is good for research reasons, because we are such a small group less $$ is allocated , but if we are together with Chiari perhaps they will some day find something for us. The thing about surgery is that you don't want any more further damage done to your spinal cord . How many opinions have you gotten? Thats ridiculous that the pain MD said that is not causing pain ! Fire him immediately !

I pray for you too Tonya ! All I know is when I am not in pain I can conquer the world and until it gets that bad I am going to fight !!

Madeline
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Re: Syringomyelia

Postby TPRMRN » Wed Mar 02, 2011 6:22 pm

Madeline, Thanks for the response. Only people with pain 24/7 can truley relate because I'm a nurse and I did not understand until it happened to me. If you are not in pain live you life to the fullest, do everything you ever wanted to do because we never know when it could be taken away. God Bless! Tonya
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Re: Syringomyelia

Postby lady 59 » Wed Mar 02, 2011 7:26 pm

Tonya I totaly agree, I have SM only, idiopathic. As far as MD knowing about it they are few & far between I've found. And some try to say they do when they don't. I'm 51 and can't imagine being like this the rest of my life, not they I have much quality of life now due to this disease!
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Re: Syringomyelia

Postby charlotte » Wed Mar 02, 2011 8:11 pm

Hi,
I am new to this recently diagnosed after having thoracic pain, headaches, numbness abd prickly feelings in upper back and arms and hands. primary ordered MRI and came bake that i have annular buges in c-5,c-6,c-7 and a syrinx 2mm through c-4 through c-7. i had never even heard of a syrinx but doctor felt confident that this was the cause of problems. He referred to mayfield clinic to a neurosurgeon who acted as if the syrinx wasn't a problem at all and even insinuated pain was all in my head and referred me to physical therapy.physical therapist says i have arthritis in cervical spine. He claims bulging in discs may be putting pressure on nerves that extend out of spinal cord.I have different opinions and i don't know the answers looking for advice. thx
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Re: Syringomyelia

Postby missd88 » Thu Mar 03, 2011 1:45 pm

Tonya, I can totally relate. I'm 44. 2 syrinxes in the thoracic spine. No CM. No one can tell me why they are there. I've been seeing docs since 2008 and the main thing I've repeatedly said is that I'm terrified if this is the rest of my life. I've done PT 3 times. Had injections. Tried every med/narcotic possible and they did nothing for my pain. I take 1800mg neurontin 2x per day. It's the only drug I didn't have side effects from. My NS just broke up with me telling me there was nothing more she could do for me surgically or medically. Of course she had someone else call & tell me this. Soooo I'm back to where I started. I don't even know where to begin. I know I have to find a NS but I don't have the energy. I guess I just want to find one that actually believes that SM causes pain, numbness, burning, incontinence, constant headaches, etc. But, I'm not giving up. So hang in there. Even at your lowest point you gotta pick yourself up and keep trying. You can do it.
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Re: Syringomyelia

Postby Heatherpage » Thu Mar 03, 2011 4:16 pm

Hello

I too am newish to this site; I have a syrinx and the Dr suspects a non enhancing low grade tumour is the cause of it. However he is continuing with tests to rule out inflammation as a possible cause too.

I am interested to know if you could describe your symptoms and the pain you experience with a Syrinx and no Chiari?

Although I have blurred vision for sometime just lately this has increased to a point where if I move my head or back aor even blink everything I see looks as if I'm seeing through water (if that makes sense).

For pain, I have burning, numbness, tingling and headaches, the Syrinx is at T3 I'm not sure if it covers another T or not but it's quite small from what I saw on the MRI. Except for mild but persistent headaches, blurred vision and a slight tingling in my fingertips all of my symptoms are in the lower limbs and feet and the numbness causes unsteady walking (like I've had one too many) and loss of balance.

But I feel pain from the burning and tingling and also at night when I lie in bed I can't sleep for ages because I get pains mostly in my feet that feel like electric shocks and very annoying twitching in my back and legs, I'm interested to know as I am from the UK and we have the NHS the neurology nurse tells me that anything that makes you uncomfortable is considered pain, and I wonder what you consider pain. Also how do I know what is caused by the syrinx and what is not?

The neurologist I have is very supportive and immediately ascribed my symptoms to the Syrinx, he also mentioned that he has seen patients which run down a large part of the spinal cord who don't suffer any symptoms, he believes the size of the Syrinx isn't a measure of the pain level or the symptoms you will have.

Thanks for any info
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Re: Syringomyelia

Postby karenb » Thu Mar 03, 2011 7:09 pm

Hi All,

Permit me to ramble a bit...

Regarding the NIH studies referenced earlier... The idea is that you send scans and a brief history of your condition to the NINDS. Then Dr. Heiss's team evaluates them to determine IF you are a candidate for the study. If you are not, it doesn't mean you don't have serious symptoms and difficulties - it just means you don't meet the study criteria. If you are, then you visit the NIH for a full exam (described in the consent packet), the results of which allow them determine whether you are a surgical candidate or not [and, if so, what type(s) of surgery]. If you are a surgical candidate, then you have the option of having surgery or not. The surgery is not "experimental" - Dr. Heiss (the study director) is one of the most highly regarded SM specialists in the country. The idea of the study is to track outcomes and results over a 5-year period so they can know more about SM.
(FYI, I volunteered for the studies, but they determined I was not a good surgical candidate. I was hoping that even though that would probably be their conclusion, that they would still track my condition & symptoms to better understand what we all go through.)

My own situation... I have a syrinx from T6-T10, and have been told my SM is ideopathic. Tethered cord & CM have both been ruled out by several different neurosurgeons. My problems started in October 1997 when I dislocated one of the intrinsic bones of my left foot - excruciating - and kept dislocating it over and over (maybe 100+ times). Other bones started dislocating, and two musles in my legs locked in a permanent spasm. My physicians searched for the cause for almost 10 years before my new Neurologist dx'd SM (new NL was needed after I moved). The true cause of my SM may be an auto accident I had in 1993 (bad enough that I broke my nose), but no one will probably ever really know...

My biggest symptoms... (a) leg muscles that are "locked" in permanent spasms/contractions, which is very painful, (b) myoclonic jerks of my legs, which disturbs my sleep and makes walking about rather dangerous (I can collapse at any time), and (c) a paralyzed bladder (which means I have to self-cath several times a day). I finally had to stop working in 2008 (I had been an Engineer for a major corporation for 20 years). I use a wheelchair any time I leave the house, and use a walker, a cane, or a wheelchair inside the house.

Sometimes I feel really frustrated... because it does seem as if ASAP is focusing more on Chiari Malformation. Even if surgical options aren't promising, I wish more attention could be given to educating the medical community about what SM is, the associated symptoms & problems, and treatment options (including basic symptom relief). I really hate that some doctors seem to think SM is "made up" - I actually had one physician go so far as to tell me that "It's just in your head, what you really need to do is get a job" (Insert condescending tone on the last 3 words).

I get really frustrated at how my world has shrunk in the past 3-1/2 years, and with it the possibilities and options open to me. Heck... I can't make any plans at all without figuring out whether it's even an option because of my wheelchair... Grrr....

Sorry for the long ramble... I usually try to be more positive and upbeat in my posts, but this subject just kind of hit a really raw nerve (more than one, actually...).

Karen
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Re: Syringomyelia

Postby mad254 » Thu Mar 03, 2011 10:39 pm

First of all I would like to say I am relieved to meet others with SM and No Chiari . I would also like to say that any MD that states your cyst is not causing your pain. Please find another doctor which i should have done a long time ago.

I have a 6 x 7.5 x 14 mm cyst in the c4 / c5 . I have been suffering since 2006 and was a hairstylist for 28 years and booked everyday until I started with symptoms. I had to quit my job . I should have been getting disability, but I think they all thought this was nothing. I suffer from neck, back, shoulder pain, swelling of the hands,trigger finger, needles pins, electrical shock feeling in my shoulder and neck area , at times severe headaches with sharp pains shooting from the back of my head to the front, have not been able to sleep on my right side because of the pain since 2006 , weakness in my upper legs and arms , dizziness and my mind is in a fog. I love this listen to what I have been told by neurologists at the beginning of all this tendonitis, repetitive stress injury, carpal tunnel, tennis elbow, psoriatic arthritis { i don't even have psoriasis} and the best I was told is " sometimes we can tell you what you don't have , not what you have" When I was first diagnoses they told me that my cyst could not be causing al this pain.Then this past summer when my symptoms were getting worse i was told" You don't want THAT surgery and theres nothing really that can be done" I don't give up easily and will never take that as an answer.Although I was crying most of the day in pain today and was wondering how the hell am I going to live like this???

Karen thanks for the info on NINH that is very helpful to know that you do have the choice of surgery and you can still participate regardless.Sorry they didn't choose you though. There are a lot of people out there with small cysts and pain. They really don't know enough . I keep on wishing to win the lottery and hire someone to find a cure for us or at least get that research $$ so desperately needed .
I called ASAP phone # and they said up till a few years ago the organization was just called Syringomyelia and then Chiari was added. I am hoping that now they are together more $$ is allocated for our research too . They told me that for SM alone that we should see a neurosurgeon that specializes in spinal cord injuries. I found that interesting and it makes sense the doctor should have that expertise. Even if you dont have SM from an injury he or she would be the expert in our case. Thats what I am going to do next { spinal cord injury surgeon} NYC.

Putting SM and Chiari together as one kind of reminds me of when my son was diagnosed with ADHD and I would join these support groups and most of the children had autism. I would question why and they they would say well they have adhd too . But there behaviors were totally different than my child with adhd alone. I could never find a place that he fit in and still cant. When you are a rare case you have to be put in together in a subgroup. This can have its benefits but we must stand together and support each other and hopefully see the day that we can have no pain and be cured. { or at least a procedure with a better outcome}

Madeline
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Re: Syringomyelia

Postby karenb » Fri Mar 04, 2011 11:46 pm

Madeline,

Even before the words "& Chiari" were included in ASAP's name, Chiari was a big player, since it appears to be the root cause of SM for so many people, and what we all have in common are issues relating to CSF flow. My hope is that anything that leads us closer to a cure or treatment for some of us will ultimately help us all.

Karen
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Re: Syringomyelia

Postby mad254 » Sat Mar 05, 2011 6:22 am

Karen I pray that we can all be out of our pain and suffering and they find a cure. I was up all night in pain and I am so scared and tired.

Yesterday I went to get copies of my records. In the radiologists office sitting next to me was a mother and her daughter { she was maybe about 9 yrs old}

The mother was trying to explain what the daughter had , what the doctors said and the surgery she would need. I couldn't believe what I over heard Chiari.

I turned around and said " I am sorry I over heard you and I told her what I was diagnosed with. She was explaining how her daughter was having these horrible headaches.

I told her about this website, forum, I told them they are not alone. I comforted them and said she is not alone and they will see on this forum there are many children that know exactly how she feels. As they were leaving we were hugging and crying she said" Sometimes God puts you in places for a reason" My heart went out to that mom and little girl. I could see they were terrified. Hopefully they will find confront too coming here.

Madeline
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Re: Syringomyelia

Postby reedy » Fri Mar 11, 2011 2:13 pm

Hi Mad254,
Thanks for your interest and wishes. The 'trauma' that (almost certainly) started things off for my syrinx was a bacterial infection on the dura of my spinal cord. Staph aureus, which is everywhere (all over your skin right now .....eeeeew!) sometimes gets into places it shouldn't, and for some mysterious reason it got in to and settled on my SC. This happened 10 years ago (almost to the week!) and its been a long road to finding out about my syrinx. I got my diagnosis in 2007, and have been watching things get worse, slowly, since then. So now the balance point has come and its time for surgery to see if we can stop the decline.

On clinical trials, Jennifer and karenb have expressed it really well. The main thing about a trial is that they will take extensive data before and afterwards and rigorously follow up the results. Shocking as it may seem, although our condition is rare there actually are many, many people treated for it (most of whom don't end up on this website) and the information on consequences of one treatment versus another is not taken in a comparable (standardized) way and often not for very long. A huge amount of knowledge is let slip away. I am very keen on being part of a clinical trial as I am a scientist by training and I feel that my challenges in this personal loss could be used positively to build up an evidence-based knowledge of treatment effectiveness. Basically I feel I owe it to following generations to take the treatment that contributes to evidence based medicine.
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