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im very confused need help

aprilmaeaaprilmae Posts: 5
edited 06/11/2012 - 8:52 AM in Degenerative Disc Disease
Hi and thanks for reading. I was in a bit of concern of what i have been through in the past two years... started back in june 09 i started to get a migraine everyday numbness to the left side tingling in my whole left side and couldnt hardly walk and my vision was very bad.. so after seeing doctor after doctor in jan 10 they told me i had arnold chiari malformation and degenerative back disease in my c5 and c6.. well going through so much pain my doctor finally referred me to a neuro surgeon.. where we discussed about having the chiari surgery. gave me the option to do it or not to let me think on it so i did for a couple of days and called and told him yes i will go through with it because of meds wasnt helping or physical theropy wasnt either. so on may 18th i did was pretty crazy surgery... first major surgery. well i stayed in the hospital for about 3 or 4 days came out on may23 well i started to see that i had some leakage coming from the back of my head where they glued me shut.. i was in the most excruciating pain where my headaches were 100 times worse.. i finally couldnt stand it anymore from the pain and having to put a towel around my head everyday so my mother called the ambulance on may29 where they admitted me again said i had a spinal leakage and i caught mrsa from the surgery.. so they kept me pretty doped up until i went through another surgery on june3 cant member what it was but i know it had to do with something with the leakage but they went back in where they did the first surgery.. from day to day getting another staple or 2 the pain was awful and being stuck in the room with the mrsa i almosted died i guess thats the whole faith thing that i didnt have cause i felt as if i wasnt gonna make it out..i lost 30 pounds within that time i stayed in the hospital. i stayed in the hospital till june17th i finally made it out and i started feeling better but then i woke up one day and couldnt raise my left arm what so ever i was shocked n scared so i rushed to the hospital they said they couldnt do anything i should go to my surgeon so i did where he scheduled me for an mri and said everything looks fine.. well now it is april 2011 and i can move my arm but no strength in it i can raise it to the side and my muscles are so tight looks like im flexing.. i been going through physical theropy for about 4 months now because of the headaches have came back and my neck pain and i have back pain.. i am currently on a lot of meds such as narcotics and anti depressant meds which i dont want to be but living with a migrain everyday and the depression is really hard at times and the back n neck pain as well.. so i am curious if i should have went through the surgery , cause of reading up on the c5 and c6 disc that are deterating it says it causes the problems i had before i had my surgery.. but yet noone is doing nothing about the degenerative back disease i got so i dont know what to do next so if you have any information would greatly appreciate it which way i should go or what i should do next..


  • That is the question I think most of us face during our recuperation time- if we ever recuperate at all... I am sorry to read of your case. I am not too familiar with c5 & c6 but I am familiar with the degenerative back disease because unfortunately part of my second spinal fusion also dealt with the deterioration of my two lower disc of L4 & l5. In my case they were able to replace to replace the two disc with placing two titanium cages and bone marrow and close it with two small screws to hold the cages in. I am 5 months in from my second surgery and even with narcotics the pinching of my nerves the numbness I feel the pain I'm usually in everyday I too come to that ultimate question was surgery the right decision and I believe it is a case by case situation. My pain and suffering is much greater now than before my first surgery and even greater now after my second surgery but I do not regret my surgeries because only God knows, or destiny if you are just spiritual, where I would be if I did not take care of my spine health.

    I say keep looking for professionals that have dealt with your case. I am not sure where you reside but hospitals in NY are top in joint disease and orthopedics. I know the forum doesn't allow to promote individuals or institution but if you'd like my email is Moyacardi@yahoo.com and I may be able to refer you to specific institutes.

    Keep that faith and know your case is important and you will find a doctor that will be able to support you in correcting your spinal health issues.
  • I wish I had some answers for you - but I don't :(

    It would seem to me that if your arm is that tight it could be the reasons for migraines and even back pain - as the muscles all connect in one way or another -

    What is your PT and/or Drs saying about the migraines and back pin returning?

    Are you on meds to help prevent and stop the migraines?

    I suffered from migraines so badly I would vomit and actually lose my sight. I ended up in the ER a few times a month until we got to the bottom of it.

    Please know I will keep you in my prayers.:hug:

    Please keep us updated
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • thank you for your feed back feels great to actually talk to someone that can understand a bit more than my friends do ... i do reside in ohio and i am starting to see a neurologist at the end of this month took me six months to get in there cause of the insurance... but im hoping that this doctor will get to the bottom of this with the headaches and also the back pain.. and i do have migraines where im sick to my stomach and i dont want to eat or move or even get out of bed but yet i do have the 2 kids i fight it a lot.. im on pain meds and they have tried to give me meds to help prevent the headaches but nothing seems to work..i am on narcotics right now as well as anti depressants to try to gain control of my life again.. so i am hoping at the end of this month i could have some answers im hoping...
  • I am going to share my migraine info with you - hoping some of it is helpful.

    I take amphetamine every night to prevent my attacks, I take replax when I get the migraines ( which is very rare any more ).

    I know you have a injury that causes your migraines but I will still share this other info.

    If I eat any foods with sodium nitrate, MSG, food dyes in it I will get a migraine attack.

    So foods like lunch meat ( except turkey over baked, NOT smoked ), hot dogs, bacon, etc are all big no no's for me. No quickie boxed/canned foods. Most fast food places are out for me and many restaurants are also out for me.

    If you think by some chance your attacks are also triggered by any of these try staying clear and see how you do.

    If you want any more info I will be happy to share it with you :)

    PS: I am in a hospital bed right now as I had both my knees replaced 3 weeks ago and am using my lap top which does not have spell check on it. I know I really "butcher" a bunch of the words here. Hope you can make sense of them - my apologies :(
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • There is a website for knee replacement much like this one, it's called bonesmart.org Great people and great support over there. Good luck with your recovery.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
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