Arnold Chiari Malformation & Syrinx &Tethered Cord Syndrome severe back pain

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I had decompression surgery for my Arnold Chiari Malformation with Syringomyelia in 2004 and then had surgery for Tethered Cord Syndrome in 2006. But I still suffer with intense back pain, specifically pain between my shoulder blades. For the past 8+ years I have had to depend on pain medication which only takes the edge off. Now I've gained about 100 pounds due to in activity but once I try to do anything on my feet I start getting this pain between my shoulder blades so bad the pain radiates down both arms and if I ignore it long enough I get an intense migraine. Is there anyone out there that can PLEASE help me ? I can provide additional info later if needed, I just wanted to see if there is anyone out there anywhere that can help me. I had to retire from the US Post Office because of this pain. The pain started about 6 months before my surgery for Tethered Cord syndrome. That surgery did help alleviate all my other symptoms except this back pain.

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  • Posted

    Hi there,

    I also suffering terrible back pain after decompression in May 2016 - however -when I asked my gp-they referred me to pain management team also to Osteo-artrhitis specialist - with the pain management they provide me with :

    1. Weight management

    2.Physio

    I am waiting to see my specialist to have discussion what is the problem with my back pain (I had Mri/Scan) last week, for which once he analised what is the matter with my spine he will be able to treat me - in the mean time - I have very gentle exercise - I walk 20 minutes each day - also doing back exercise (have a look in you tube-there are plenty of it on how to reduce your back/neck/leg pain) I do not like taking drugs - so i chose this suggestion - evven though I am still have ppain - but I can put up without taking any pain (NOT EVEN PARACETEMOL) and also spray with magnesium oil each night - takig plenty of liquied (2 ltrs) instead of diet - I just cut all the bad food - and doing intermittent fasting (no breakfast - eat at 1pm then last meal 7pm) - I start to lose weight now - I am seeing my neuro surgeon again just to check whether this is a part of the result of Chiari or that is nothing to do with it? - I aso going to be seen for specialist in regard to my joint (Shoulder) - why don't you ask your gp to refer you to specialist and to have your back scan? - I am not sure if there is relation to Chiari - I assume it might be - beacause I feel that way - but moving gently will help your stamina back to near enough healthy - however with Chiarian - they said that you have to except with your condition and also take your time- take it easy - keep miving - try to lose weight because if you put o weight it will make your back even worse. I hope that is helpful - but I used to cry in pain - as I could not move sometime, since I have the physio and doing gentle back exercise each day - I am OK. I a sure I will be much better each day - exercise and eat healthy really help me .

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    • Posted

      Thank you for the advice. I have had my whole back scanned with an MRI and besides the Arnold Chiari and Tethered Cord I also have degenerative disc disease. I also went to see a chiropractor and found I have several ribs on both sides out of alignment and found some relief after an adjustment so I kept going to 2 different Chiropractors and they both noticed the ribs out. Problem was that the adjustment only lasted 3 days. So I kept going but after about 2 months my pain level got worse so I stopped. I also have a recumbent bicycle that I'm trying to get excersize with. But thank you again for your advice but you may want to be checked for Tethered Cord syndrome as it is now found people with Arnold Chiari have. Besides in office testing (one test was for me to walk on my heels accross the room and right away I had to go to the batheroom with #1). They also did an MRI of my brain stem and found it was 5 mm. longer than normal. Thanks,

      Jim

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  • Posted

    So, are you going to have another decopression, what is your specialist said about your back pain beside degenerated...uuuhhhhh I will not biking if I were you....can you walk or evve swmming rather than biking, you have no support for your back..it might aggravated....
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    • Posted

      The last specialist I saw was 7 years ago at the Chiari Institute in Long Island New York. The specialists at the time rattled off 5 things that could be causing the pain but they did not know which it was or more accurately since they already got paid the $250,000.00 for my last surgery they weren't interested in trying to discover the real source of the pain. Why do I say this ? Well the last office visit I was there for the Neurologist had to step out of the office for a minute and when he came back in he slapped my back exactly where I told him the pain was really hard and said "did that hurt ?" I had to lay down on my side till the pain subsided. What kind of barbaric doctors do that ? But in that clinic when they get $250,000.00 for a surgery and maybe $120 for an office visit where do you think their interest lies ? I did just contact them this past summer and the clinic had been sold and moved and none of the original doctors are there anymore. I've been told by a local neurologist that my Chiari still looks fine. But I've seen more BAD doctors than good ones and the problem inherent with doctors is once one doctor diagnoses you none of the doctors in that area will go against his diagnoses even if it is wrong. When I had my decompression surgery done they never checked me for the Tethered Cord Syndrome and because I had it and they made that opening in my skull larger it pulled my brain even further downward causing me some brain damage. The part of my brain that was affected controlled my balance and motion sensitivity. Once I had the tethered cord surgery those symptoms improved but I did not get 100% back, maybe 75%. Funny thing is the doctor that did my decompression surgery moved out of state only 8 months later because his malpractice insurance was too high. 

        Now the bike I ride is a recumbent so I have full back support, one is a trike and the other is a 2 wheeler with a fully reclinable seat back. I just wish I could find a doctor that could tell me for sure 100% what is causing the pain. Before all of this I worked at the post office and I worked 5 years part time to get my full time route and I had to give it all up because of the pain. But thanks for the input.

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    • Posted

      Oh dear......can you not find out from the organisation..I do not know where to find in the US in the UK we can find it from NHS..we also protected as a patient.. if any doctor move. can you not ask your insurance to find out where he is..but surely if you cover by insurance you still can sort this thing out..your insurance ..should cover the cost..try to Mayo Clinic call them if they recommend other surgeon/neurologist
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    • Posted

      Yes they did tell me he moved to New Jersey. But I've been told by two seperate Neurologists that my Chiari still looks good so I know that's not the problem- I'm sorry I should have shared this earlier. But now I've been wondering if the pain is muscle related somehow. The reason I suspect that is because I had been getting alot of muscle spasms and my family doctor wanted me to cut back on my pain medication so I asked him if he could give me a low dose of muscle relaxing medication and once I started taking it the muscle relaxing medication seemed to work better than the pain medication. So I was able to reduce the amount of pain medication to where my doctor wanted. But I don't know if there is a specialist doctor for muscle related issue's ?

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    • Posted

      well just have a look at google about any of medication what is the side effect on it?, sometime if people take statin on a higher dose that can caused muscle pain as well, but I also suffering from Back Pain, I am not sure it is because of my chiari..but I have to see my specialist/s again then I will be able to give a feed back to every one here. The most important for you to do is ''take charge for your health, explaining to them how you feel, prollong taking any mussle relaxing also may give person potential side effect, what ever they have given you, have a look at the packet (the leaflet inside your medicine) - as I said this to every one, that doctor are so busy I am not sure in your country, in the UK..even if some one have appointment they can wait...and wait ..up to 30 - 40 minutes before beinng seen, they are snowed down, they could not remember what you have even though its on the screen, they do not have the time to talk and listen, but if you are prepare and be assertive and know what you are talking about, they listen, and treat you well --- as they realised you are taking control and concern about your health...normally for muscle tissue they will refer you to osteoartrhitis specialist..ask your doctor to refer you to one of the secondary care specialist. 

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    • Posted

      Hello, 

        I am sorry for the delay in my response and I can't thank you enough for your help. Unfortunately the doctors in the US are about the same, you would think for the $75 your paying them they could give you more than 5 minutes of their time smile. I'm sorry to hear you also have back pain, I wouldn't wish this type of pain on anyone ! If you happen to find out anything more about muscle related pain please let me know and I will do the same for you. Thank you and take care !

      Jim

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    • Posted

      Hi , funny enough since we communicate with each other, I have been seen by orthopaedic specialist, Arthrhitis specialist, my doctor, had MRI/Scan on my back, i-2-1 physio, and finally they offered me epidural injection as its helping me to do more harder exercise I also being seen by the weight watcher- the goal is losing weight, as since I suffered from chiari -and expereinced housebound for 8 months - I put on 2 stone..giving me more back pain - the result of my scan was excellent, nothing I need to worry about...so I have injection this morning..i should not want it really but I have to choose what is important?, if by getting epidural then I can be more active and doing long walk would help me losing weight ..then this is the pathway I took..in the hope of loosing weight..lesser pressure on my back bone, muscles and nerve then pain free even when getting so many movement..losing weight mean more healthier and my objective is getting rid of all the pain I have in my bone.
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