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    SM...this is insane

    I was diagnosed with chiari and sm back in '10, they did the cervical fusion saying that could possibly get rid of all of my symptoms but they have only got worse. Then they did the chiari decompression saying that would get rid of the sm, but it seems that my symptoms have come even quicker. I had decompression July '12, ended up in the hospital Sept '12 because I was falling (tripping) over my left foot, I could not feel my left leg at all. I have been having left chest pain, had heart cath Friday to make sure nothing was wrong with heart causing the symptoms, cardiologist said it was perfect and same with arteries and it's all connected to the syrinx's. The NS has been saying for MONTHS that NONE of the symptoms are connected to thoracic syrinx's because the legs can only be affected with lumbar. Because of crap going on in the heart and lungs now that they will do something!!!! Thursday I have to see his idiot PA. He's actually got up in my face and talked down to me if I have asked questions. It feels like Thursday I am going into battle. I had the cardiologist forward ALL results, everything to the NS's office to say HEY DO SOMETHING!!!
    I miss my birds and being able to run! Syrinx's at T2-T6 and T9-T10 prominence of CC at T7-8 DDD at T6-7,T7-7 and T8-9, fusion at C5,6,7, in other words totally screwed up lol

    #2
    If I were you, I would be seeing a different neurosurgeon. How experienced/expert is this one in the management of primary syringomyelia and Chiari??? If you are getting your care through the VA, you have the right to request a change, even if it means getting referred to a different VA hospital.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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      #3
      I think it is time to see a new surgeon to get a second opinion. I've learned that it is usually not a good idea to "force" a doctor to treat you.

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        #4
        Dr wise told me there are no good surgeons for chiary decompression. they are all dead and he has no faith in whats roaming round the colt paddock.

        im wondering who did your surgery.
        I think this is a very bad thing to have, that arnold chiari. apparently there are few people who will do any kind of surgery on someone who has this. even if the surgery does not involve the arnold chiary. It just being there is a very bad thing.


        I don't think the odds are very good for not developing a syrinx or in my case possible tethering. It seems to be probable if there is previous surgery.

        I have developed a thing called pots. It affects my heartbeat and blood pressure, and it sucks. It is related to the chiari thingy, and having that just rolls it all into one big ball of its sucks to be us.

        Im very interested in what happens to you. In my searches, it seems going to another state is my only option. who knows, it might even be Iowa.

        My opinion is that you may have found about the only Dr in the country who would do a surgery like what you had.

        Surgeons of that kind seem to be very rare, and temperamental.

        please keep us updated on your search for treatment. It might be you will have trouble even getting a second opinion, because no one likes arnold chiary one bit.

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          #5
          Dr Ryken with Iowa Spine and Brain at Covenant Hospital in Waterloo Iowa is the one that did my chiari decompression. I love him personally, very easy to talk to, actually listens to you as a person. My issue with his office is his PA who talks down to you. Not sure if it's because I am military or not but he's Muslim and Bosnian, they do not take kindly to women who know what their talking about or questioning them. I've tried to get referals to other NS's about the syrinx's and whatever is causing issues. They look and it seems they run as fast as they can from me or say see you in a year. I'd like to see these dr's deal with this for even a week let alone a whole year LOL. Dr Ryken explained the decompression for the chiari and it was actually fairly easy to recover from which i was shocked about. Now just to try to fix the rest lol
          I miss my birds and being able to run! Syrinx's at T2-T6 and T9-T10 prominence of CC at T7-8 DDD at T6-7,T7-7 and T8-9, fusion at C5,6,7, in other words totally screwed up lol

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            #6
            Here is his page within the hospital site. http://www.wheatoniowa.org/find-doct...l.aspx?cID=235
            I miss my birds and being able to run! Syrinx's at T2-T6 and T9-T10 prominence of CC at T7-8 DDD at T6-7,T7-7 and T8-9, fusion at C5,6,7, in other words totally screwed up lol

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              #7
              I have read about him. he seems competent, and appears to have an excellent reputation.
              Maybe you can write him a short letter about what you are dealing with. not a complaint about his employ, but a letter about your situation, and what you would like to do about it.

              address it to him. I doubt he would mind.
              .........So are they hoping you don't get worse? it will go away? are they saying let's wait a year and then see if you need surgery? or another surgery won't help?

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                #8
                Well I had apt with the PA yesterday, thankfully the "asshole" was canned, I wish I could have done the happy dance lol, really nice sweet YOUNG PA who ACTUALLY knew about sm!!!! He confirmed that all my symptoms match!!!! I was damn near in tears. He ordered a MRI series for on the 1st and have apt with Dr Ryken on the 1st to discuss next options!! I was almost in tears when I left there yesterday.

                Dr Ryken is a really good NS, he did my chiari decompression and cervical fusion. I can not think of a single bad thing to say about him at all! My migraines before decompression where like every other day, in the past 6 mo I've maybe had 3 and not that bad!!! I would refer anyone to him who has chiari or anything wrong! And the PA is damn good (cant remember his name atm) but omfg i think I am in love!!!
                I miss my birds and being able to run! Syrinx's at T2-T6 and T9-T10 prominence of CC at T7-8 DDD at T6-7,T7-7 and T8-9, fusion at C5,6,7, in other words totally screwed up lol

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                  #9
                  so glad to hear. the right provider makes a huge difference in care.

                  pbr
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                    #10
                    Thats the truth!! I am spending the time between now and the 1st researching this spinal cord thing with the sm surgery, disc's I dont have a problem with, I already had a fusion so that part doesn't scare me at all, but the spinal cord does alot. I know of afew who've had the surgery on the sm and going to talk to them to. Dr Ryken before surgery when it's scheduled has a open door policy to if you have any questions about surgery. I know with my decompression for the chiari I kept him at office once til about 6 asking questions!! I felt so bad lol
                    I miss my birds and being able to run! Syrinx's at T2-T6 and T9-T10 prominence of CC at T7-8 DDD at T6-7,T7-7 and T8-9, fusion at C5,6,7, in other words totally screwed up lol

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                      #11
                      id like to meet that Dr.

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                        #12
                        where in Iowa are you? I lived near winterset for seven years and went to creston community college, as well as summer classes at ames.

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                          #13
                          He is in Waterloo IA. Covenant hospital. I'm from Waterloo originally but live 30mi away now. I know where Winterset and Creston is and a major ISU fan!
                          I miss my birds and being able to run! Syrinx's at T2-T6 and T9-T10 prominence of CC at T7-8 DDD at T6-7,T7-7 and T8-9, fusion at C5,6,7, in other words totally screwed up lol

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                            #14
                            I had a Cuban P.A. in orthopedics at Walter Reed. He had a problem listening to patients in general. I think the military and VA hires refugee doctors as PAs and most look at what appears to be another 6 full years of med school to go back to be doctors and give up. Makes for cranky PAs no matter where they are from. Here in Madison I've had wonderful RNs who came over and had to start as CNAs and go back to get a BSN and they do it. They are some of the best most compassionate nurses I've dealt with.

                            BTW, are your problems all post-service?
                            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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