Sm Symptoms?

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Sm Symptoms?

Postby Casey784 » Mon Feb 18, 2013 8:06 pm

I was dx'd with SM 5 years ago. It ran from t6 to t10. After a recent increase in pain and symptoms, I had another MRI. It now runs from t5 to t10 and is only about 1cm. I also have a fusion at l2/l3 and am now showing some arthritis (though he had a fancy name for it) in the facet joints below the fusion.

Anyway....LONG story short, I'm interested in hearing symptoms from other people with a similarly located syrinx.

I have a laundry list of symptoms but the neuro I saw today says that are mostly not related (the neuro 5 years ago said they were). He didn't say they weren't real but that they can't be related to the syrinx...not to mention it is a "completely benign" syrinx. I politely responded it was not benign to me because it was sure causing issues in my life. He agreed that he wasn't in my body and can't dispute my pain but that clinically speaking, the syrinx is benign.

So....I guess I'm looking for validation that I'm. It crazy because right now, that is exactly how I am feeling.

Thanks
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Re: Sm Symptoms?

Postby pmaxwell » Tue Feb 19, 2013 11:14 am

I know SM affects everyone differently and you have several issues that could be responsible for your symptoms. I don't have SM so I cannot share my symptoms but you can find lots of references to symptoms in our website. You might also want to download the Handbook for patients created several years by a team of specialist. The general article on syringomyelia list a few of the symptoms generally associated with a syrinx but I also damage to nerves can result in symptoms that seem totally unrelated to anything.

When a nerve is damaged or compromised, the brain doesn't know what is going on so it can send out all kinds of messages. You know your body. You know what you are feeling. The doctor is there to help you achieve a better quality of life. If he/she cannot do that, find another doctor.

Patricia
Together We Can...
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Re: Sm Symptoms?

Postby Casey784 » Tue Feb 19, 2013 3:23 pm

Thank you for your response. I have spent time over on the website and I can't find a listing of symptoms ...unless you are referring to the very generic one. I'm actually looking for more specific symptoms for the affected area that I have. I do realize that everyone is different but I'm thinking validation from others is helpful. For instance, the doc says that nerves for my hands and arms cannot possibly be affected. Not could the nerves in my face however I never had trouble with them before I started having issues that lead to dx. And I have a lot of issue right now with it.

I don't know. I guess I just want to know I'm not alone and what my options are. Finding a new doc is great but not always realistic given insurance and the area in which one lives. I know I need to be my own advocate.

This is the frustrating part which makes me stop seeking help. I stopped a few years ago because of this type of situation but here I am again, needing help and getting incredibly frustrated.

ugh. It's never easy. That's for sure.
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Re: Sm Symptoms?

Postby gunflint » Tue Feb 19, 2013 3:44 pm

I don't see where you live but you would be doing yourself a huge favor by trying to hook up with a NS that is experienced with SM. I'm trying to think of who you need validation for. We all have a few similar symptoms however one of the more hideous issues of CM/SM is the variety of symptoms and the different intensities in which we suffer. I've said before that it didn't take me long to realize that if I mentioned more than 2 symptoms the doc's (no matter what letters they have after their names ) would start to roll their eyes and pretty much stop listening. Here's an example for you. One symptom that I have but have only seen listed on a few SM symptom charts is tinnitus (ringing of the ears.) It drives me nuts sometimes. I can't stand to be in a quiet room the noise drives me crazy. However I don't ever recall reading about it here. You might have better luck posting what your symptoms are and asking if other's have anything similar. Good luck
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Re: Sm Symptoms?

Postby cwasrud » Wed Feb 20, 2013 5:38 pm

Casey,

My syrinx runs T6-T10, and I have all the symptoms you mentioned. I used to always get told that my pain cannot be from my long but skinny syrinx, until lately. My symptoms are progressing and I have not had an MRI since 2011, but will be having one in April. My balance is off,my ears ring constantly, every joint in my body hurts and stiffens up. I walk like I am 99!

Don't pay too much attention to what these docs say. One thing I have learned is that they know very little about SM, and are not going to admit it. Also,they think very black and white. For instance, when they say "your pain is not caused by your syrinx" I always want to add "NOW", because they don't see it now. But that doesn't mean YOU don't!

Anyway, that's my 2 cents worth and I bet many here have gone through this.

Take care,
Cindy
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Re: Sm Symptoms?

Postby tennesseewalker » Sat Mar 02, 2013 2:15 pm

When I saw my neuro last month, I explained to him, his PA, and a med student that they'll tell you that "SM doesn't cause those symptoms...see?...it says so right here in my medical book". UH...YES IT DOES. I live here 24/7, and my son, my twin, and both of her daughters have CM/SM too. From time to time I'll call her to explain what's going on with me, and she'll say "YOU TOO?" So I'm the expert on my SM, not the doc.

Some syrinxes are tiny, but cause severe symptoms. Some are HUGE (like mine) but don't cause symptoms. I began having symptoms at 27, but no pain until age 40. My syrinx extends from C1 to the bottom of T7, widest at the T1-T2 level where it occupies 75-80% of available cord space. My twin's is similar to mine, and she developed pain at age 32.

I feel you should ask your doc how many other SM patients he has. If he has fewer than 1000, then he is not experienced enough to over-rule your statements. The NS who did my PFD said his practice sees one or two SM patients a year.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Sm Symptoms?

Postby June » Tue Mar 05, 2013 12:45 am

Casey,
You expressed an interest in SM symptoms. I have SM--t6-t9, and lots of symptoms. Of course, I have pain in my back--radiating from the area of the syrinx up to the shoulders and out to my sides. I also have lumbar problems--facet joint inflammation, which has responded well to injections, ice, and exercises.

But back to the SM symptoms: my hands become numb when held in certain positions. The numbness goes away when I change position and move my hands around--maybe a minute or so. I feel slight numbness in my face all the time--down the right side and along the chin. It is not a problem, just strange. Cold is bad. Actually anything that makes my muscles tense up causes pain.

On the bright side, I have found a wonderful pain management doctor! He is a D.O. rather than a M.D. and when I found him last August, 2012, I was in bad shape. He has tried many different things, and here's what I am doing now: I wear a Butrans patch--change it once per week. (It is a narcotic.) I take 400mg Lyrica every day around 2PM (the time is important). I have a cream which is made up from the doctor's prescription, which my husband puts on my upper back. And I use oxycodone for breakthrough pain--I take up to 45mg two or three days per week, sometimes less. I also have Ketamine in the form of nasal spray to use if the pain is really bad.

When I first began going to this doctor, I was taking more than 200mg Oxycontin every day, and I was still in a lot of pain. By December, he had me off Oxycontin completely and onto this current regimen, which works quite well. I'm not pain-free, but I feel so much better!

This doctor knew nothing about SM when I first showed up at his office. But he has studied up on it and figured out what I need. At some appointments, we have sat at his computer and Googled various things together, discussing whether something would help or not. This doctor will tell me about a drug and then ask me if I want to try it. He doesn't just hand me a piece of paper to take to the pharmacy. That's how I ended up with Ketamine--a horse anesthetic. It makes me loopy, and I have to be careful when taking it, but it helps the pain. I'm out of time and space, but I want to say that I hope you find a good doctor who can help you. Pain management is about all there is for SM'ers. Good luck!
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Re: Sm Symptoms?

Postby syrinx48 » Mon Apr 15, 2013 1:32 pm

Dear June,
It is good for me to know that you almost get the same medication as I do. I get Ketamine infusions, once in 4 months and it helps me tremendous! Also a patch (fentanyl) and oxycodon for breakthrough pains. I hope that mor SM people are going to get ketamine, for it really helps a lot!

Annemarie
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Re: Sm Symptoms?

Postby hotsauceman » Tue Apr 16, 2013 4:37 am

My syrinx is much higher but I'm flying up to the Mayo clinic on Sat. for a Monday 7 am appt. I'm hoping they can save at least one of my hands. I don't think there is any hope for my left hand. As I have less use of my hands the burning is not as severe in my left now. My Neuro asks me about different symptons every six months. He makes me a little nervous about some that he asks about that I don't have yet.
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Re: Sm Symptoms?

Postby syrinx48 » Tue Apr 16, 2013 5:33 am

We all look for validation of our symptoms. Sometimes you just don't get them. My NS who is familiar with SM says that sometimes people have symptoms but are not to be explained why they have them there at that spot, while it make no sense to the NS's. But they are there and nothing else can rule them out, except for the SM, so the symptoms are from the SM.
That's why it is so important to see a NS who knows about SM!

Annemarie
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Re: Sm Symptoms?

Postby syrinx48 » Tue Apr 16, 2013 5:35 am

@hotsauceman, all the best for coming saterday. I hope all goes well and to your satisfaction. It is quite an early appointment you have!

Annemarie
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Re: Sm Symptoms?

Postby reedy » Tue Apr 16, 2013 6:40 am

Good luck at Mayo, hotsauceman!
I'm also losing my left hand, and right is not so fab either, but I still do stuff as much as I can with them.
I'll be asking similar questions of Dr Heiss at the NIH in a week or so.
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Re: Sm Symptoms?

Postby syrinx48 » Tue Apr 16, 2013 11:19 am

I wish I could come with you....... Also for you, good luck with Dr. Heiss, I hope that he is satisfied.
It sucks that due to SM you can't be able to use both hands properly. I feel a bit responsible, for as your accident happened in Holland!

Annemarie
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Re: Sm Symptoms?

Postby hotsauceman » Wed Apr 17, 2013 4:34 am

After my last shunt surgery, I have Parethisia from the chest down. I bave to take baclofen to control the leg spasms. the pens and needles get so bad in my feet that they ache. I can only type with my right hand now. Stiffness and burning in my right hand progressing quickly. If there is nothing they can do the I'm bound for disability by the end of the year. I do all of the cooking in my house and my wife is not looking forward to frozen dinners.
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Re: Sm Symptoms?

Postby reedy » Thu Apr 18, 2013 1:45 pm

syrinx48 wrote:I wish I could come with you....... Also for you, good luck with Dr. Heiss, I hope that he is satisfied.
It sucks that due to SM you can't be able to use both hands properly. I feel a bit responsible, for as your accident happened in Holland!

Annemarie


That made me smile! Indeed, it was a Dutch Staph. aureus that first laid me low! But I'll let you off the hook, Annemarie - if we all had to take responsibility for the bad stuff that happens in our countries, it would be a burdensome world indeed. As a a sort of American-Brit-German, who knows what, I'd have a lot of heavy weight to carry.

Just keep looking forward!
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