NEWBIE, NOT EVEN SURE IF I BELONG HERE

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NEWBIE, NOT EVEN SURE IF I BELONG HERE

Postby kathy_h_87120 » Mon Jun 18, 2007 3:10 pm

Sorry this is going to be rather long as this trip to nowhere has been long. I'm female 56 yrs old.A year or so ago I started having pain in my left shoulder and arm. It has steadily gotten worse and I have been shuffled from doctor to doctor. I started with a general practioner (as everything must in the US) HIs first impression was that it was a rotator cuff tear and he sent me to physical therapy. The Physical therapist was under the impression that I had a nerve pinched and he started working with that. As he did some type of execise to lengthen my neck something went wrong and the pain went totally off the scale. He said he would not work with me until x-rays were taken,. Back to the GP/FP and he had x-rays and MRI taken of my cervical spine. He sent me to a Spine specialist who ran a nerve and muscle conduction test on my left arm. They came out as normal and while he saw a small amount of spurring but that it could not be causing the pain I was feeling. By now the pain had reached unbearable even with Narcotics. It just never let up. The pain would be a very sharp stabbing in my armpit while someone was running a blowtorch up and down the outside of my left arm. Some one else was twisting a rubber band around my wrist.. Next stop was a pain specialist. He was convinced that my pain was being caused by trigger points and gave me 7 injections in the back that did nothing. He also had me going to Physical Therapy which was pure torture. I would leave the place and go throw up then just lie down in my car until the pain let up enough so I could drive. A second MRI was done of my thoracic spine. It was check and found nothing unusual but a small Syrinx that was too far down to be causeing any trouble and too small anyway. Back to the GP/FP he decide the next step is a nerosurgeon. By now I've begun complaining that I felt like I was in a Freddy Printz movie "Not my yob man" There was a lot of passing the buck but not treating of the patient. (almost to the end folks) I hear the neurosurgeon talking about me and they mention some like "look here it's huge" So I get excited thinking that they have found something treatment might start. anyway they show me my MRI's and say there is a syrinx on my MRI. I say yes I know but I was told it was too small to matter. and then they say no this one is much higher up and is large and they can't figure out how the doctor reading th MRI could have missed it. They also point out that there is so atrophying of one area of my brain. NOw they don't really name the part but pointed to the area of the cerebellum. Lets say I'm a little up set now but figure something has been found something will be done. But then "NMY" sets in again and the neurosurgeon says they don't threat that and I need to go see a neurologist Silly me I thought a Neurosurgeon would be a neurologist but that I can't get into the neurologist until a month and a half. So again patient isn't really being treated. I don't know what is wrong with me. I don't know what to expect and I am still in horrible pain. Can someone point me in the right direction. I have only medicare insurance so I have to be a little tight with my money. Oh yeah on top of all this I am main caregiver for my mother who is in early/midstages of alzheimers. I'm coming apart her.
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Postby cash71 » Mon Jun 18, 2007 3:26 pm

Kathy, Welcome to the board and I would say you are in the right place. If you read back on some of the posts you will find that many of us have pain as a major issue/symptom or our syrinx and that most (if not all of us) have been told that syrinxes do not cause a lot of pain. Well I'm here to argue with that point and so are a lot of others. I have a syrinx which is largest in the thoracic area and I have a 2 year history of backpain-very severe at times.

I know its not fair and doesn't make it right but I take some comfort in the fact that most of us have had similiar roads to diagnosis and have been misdiagnosed, mistreated and disrespected by many many specialist before getting a real answer. Unfortunately until you get to an expert in the care of sm you will most likely continue to experience the same treatment-trust me I know.

This is quite a rare condition and b/c of this most neurosurgeons (ns) have very little knowledge about them. You need to get to an expert. That's the only way to get some one to take you seriously and get proper tx. There is a list on the ASAP homepage under medical advisory board or if you post what city you are near someone will usually chime in with a good suggestion.

It's also going to be very important to educate yourself. That way you wil know when these docs are blowing smoke up your....well, you know. :lol:
I'll give you a few of my favorite site for info. go to www.thechiariinstitute.com click on videos. Also www.conquerchiari.org and of course the ASAP homepage has a lot of great articles and info.

Hopefully, this answers a few of your questions. If you have any more please ask. There are so many knowledgable and caring people here and I hope you will find some answers and relief really soon.

8) Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby daynthelife » Mon Jun 18, 2007 3:28 pm

Kathy...I just wanted to show support..welcome you to the board and let you know you definitely belong here!!! Someone will be along soon to offer advice and help. First off where are you located? Someone may know of a specialist in your area that can help you. We're here for you...

much luv,

Kathy
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NEWBIE

Postby razzle51 » Mon Jun 18, 2007 3:32 pm

Hi Kathy , I sent you an email . and here is the ASAP WEBSITE link
http://asap.org/index.html
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Thanks every body

Postby kathy_h_87120 » Mon Jun 18, 2007 3:56 pm

I'm in the Grand Rapids MI area. Not exactly a hot spot for med care. unless you are talking heart care. Since I am so new to this I'm sure I have let myself be lead around by the nose. So what kind of doctor should I be lookin for? Neurosurgeon, Nuerologist, something else?
Thanks ahead for the help
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dr

Postby razzle51 » Mon Jun 18, 2007 4:04 pm

Since you have been diax I would say Neurosurgeon and you are right Michgan doesnt have to many experts in SM .Here are a couple that are close
Dan S Heffez, MD FRCS
Milwaukee Neurological Institute
2350 W. Villard Ave.
Milwaukee, WI, 53209
Phone: (414) 438 6500
Fax: (414) 438-6707
and Dr.Frim in Chicago
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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another dr.

Postby razzle51 » Mon Jun 18, 2007 4:06 pm

forgot another one :
Dr. Steven Swanson
Neurosurgeon
Michigan Brain & Spine Institute
Reichert Health Bldg
Ste. 3011 Elliott Drive
Ypsilanti 48197
(ph) 313.434.4110
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There is a light at the end of every tunnel....just pray it's not a train!.

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Postby Sandy » Mon Jun 18, 2007 7:02 pm

Kathy,

Welcome! Of course you belong here! You have a syrinx. I have a thoracic syrinx. Now if we can teach all the doctors to say syringomyelia correctly...LOL!

Knowing how to treat it would be much better.

Best of luck, again welcome and yes you belong here, and I'm here for an ything I can do.

love,
sandy :D
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Postby kathy_h_87120 » Mon Jun 18, 2007 7:25 pm

Tell the truth I'm not sure what I have. Nobody has really spoken to me to try to explain what is going on and what I can expect. All I really know is that one guy said he saw a syrinx, he pointed to it but I have to admit I saw nothing. I have copies of all my MRI and I can't see anything at all. Or where they pointed to the lower part of my brain and said it was atrophying. I couldn't see anything. There was no mention of Chiari or anything like that. If there aren't any chiari formations than what is causing the atrophying of my brain? I hate the thought that I have to wait until after July 25th to find out anything. I'm so depressed.

Sorry
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Postby cash71 » Mon Jun 18, 2007 7:40 pm

Kathy, It is OK and normal to feel depressed, upset, angry, sad any or all of the above. It is a shock to be dx with something like this and there is no right way to react. I remember very well how overwhelming it all felt initially but it gets better, honest. For me this board has been the biggest blessing. It is really wonderful to share your anxieties and worries with others that know where you are coming from. It is healthy to share your feelings with someone and sometimes its easier to share them here with us than even with family or friends. So you vent if you feel the need and we'll be here to listen and support you.

If two different MRI's have shown syrinxes than you have syringomyelia. Now I don't know what is going on with your cerebellum and I don't think it would do you any good to try and worry or speculate to much about it. If I were you I would figure out which of the docs Roz mentioned is closest and get on the phone and make an appointment you may very well get in sooner than July 25 and believe me it will be much more fruitful to be seeing someone with expertise in this area.

I hope you find some of this helpful. I'll say a prayer for you that you will find some peace and comfort in the midst of this stressful time.

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby kathy_h_87120 » Mon Jun 18, 2007 7:54 pm

I'll call both tomorrow. The one in Ypsilanti would be closer physically if I were planning on driving. But I have a friend who could fly me to the one in Milwaukee in just about the same amount of time. Anyway I'll give them a call and see if either will work and let you all know. I appreciate having a group to come to who understand even when I don't.
Thanks again
Kathy
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Postby kittb » Mon Jun 18, 2007 8:13 pm

Kathy,
it sounds to me from your description that you have cerebellar atrophy as well as the syrinx problem. This is similar to my diagnosis, About ten years ago, a NL(neurologist) did an MRI of my brain stem and told me that all of my problems-dizziness, loss of balance, unexplained pains here and there in my body-were attributable To the lack of growth of my brain stem caused by my MVA in '78. Fast forward four more years, he finally orders up a spinal MRI to see if he's missed anything. Surprise! He finds a six inch long syrinx. So now I have to deal with both of those problems. I'm sorry that it seems like you do too. I hope you can find more sympathetic doctors knowledgeable in the care and treatment of our condition.
Kittb
If you ever lose yourself, call on me and we'll be lost together-Kitt
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Postby kiminfla » Mon Jun 18, 2007 8:45 pm

Kathy, Just wanted to add my welcome. I have Chiari, no SM but we're one big ol' happy family here! I hope you can get some answers soon from someone who is knowledgable in your condition. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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drs

Postby razzle51 » Tue Jun 19, 2007 5:20 am

Kathy I had dr. Frim listed too dont forget him . I had 3 dres listed. here is Frim info.



Dr. David Frim
University of Chicago Childrens Hospital
5841 S. Maryland Avenue
Chicago, IL 60637
Phone: (773) 702-2475
Fax: (773) 702-5234
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby SMLady » Tue Jun 19, 2007 10:04 am

Hi. I just wanted to say welcome. Your story sounds so familiar as so many people here have gone through the same thing. I was lucky in that the first 3 neurosurgeons I went to identified my problem and told me that size doesn't matter in these cases. Mine is from t1 to t11 or 12, I don't remember now, and 5mm. They won't try to shunt until it's at least 6mm wide So right now I'm just being treated with pain medication, and once a year I have an RFD - where they burn off the nerve endings to my spinal cord to help with the pain.

I wish you luck. Take care.
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