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Considering going under the knife for CHIARI MALFORMATION, or Cervical Stenosis??

Discussion in 'General ME/CFS Discussion' started by Jacque, Sep 12, 2012.

  1. Jacque

    Jacque Senior Member

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    A Phoenix Rising member (Sushi) recommended that I post my experience on the Surgery for Chiari Malformation and Congenital Cervical Stenosis.

    I have been ill for over 35 years and have been diagnosed with RA, CFS, FM, EBV, Hashimotos, Lyme, Biotoxin Illness, Chiari Malformation, and now ME.

    I am one of those type A's that never gives up on a Correct Diagnosis... Came across a website abt FM being caused by Chiari Malformation. Got the MRI and had two "specialists" look at it and it confirmed Chiari Malformation and CCS.

    I was so ill that I was happy to get the diagnosis...and quite honestly I would have let him cut my damn head off and sew it back on...to get rid of this, head to toe, constant pain.

    My son is also in a lot of pain...had him get an MRI and his Chiari was worse than mine was. So we BOTH went in on the SAME day 2 1/2 years ago in Vegas, for our surgeries.

    I had a 5 level laminectomy and my son had the brain decompression. TALK ABOUT STRESS!!!

    Thank GOD we both lived through the procedures. My son ended up with Chemical Meningitis 2 weeks after surgery and was admitted back to hospital. It was HORRIBLE... Especially when I was dealing with all nerves and muscles in the back of my neck SCREAMING... A month of feeling like a swarm of hornets had landed on the back of my neck... There were not enuf pain killers for the pain of that surgery...and I have had a few surgeries.

    So now I have the back portion of 5 of my vertebrae missing (essentially my spinal cord is now right under my skin just a ways..when I push gently it sends electric shocks through my body - SCAREY S**T!) I did have a LOT of migraines prior to surgery and they disappeared after surgery..only to return 1 year later, but not as many.

    NOTHING...I mean NOTHING got better other than that... All I can say is that the surgery lit a match that I cannot put out!!! The surgery was the last straw for me. Have felt very close to death many many times in the last 2 1/2 years... All my life I have dealt with pain and suffering...but this has been BEYOND words... It completely set my immune system into a tailspin... and I don't know if it will ever be corrected.

    Aside from that I now take the majority of pain meds bc of horrible burning pain in my neck...that nothing seems to help but opiates.

    So, I have a few less migraines, but 10X the suffering and immune dysfunction.

    My son....NO change really altho really don't talk about it because neither of us want to admit that it was probably a failure on both of our parts.

    They cannot do both of the surgeries at once. I still need the brain decompression and my son still needs the laminectomy. I would literally DIE...If I had that done. And I will NEVER encourage my son to do this. The guilt that I carry as his mother passing this crap on to him is... HUGE.

    I now believe what he really has is LYME and ME. He has all symptoms...but I just can't go there with him. He is 23 years old... cannot tolerate alcohol...is in bed by 9... has NO social life except hangin with his GF.

    I am guessing I just didn't want to believe that I passed the Lyme spirochete to him invitro and thought the Chiari would be a quick fix... WRONG.

    I did EXTENSIVE research before having our surgeries. I would NEVER do it again.....

    If you have CFS/ME and are considering this surgery, I can only say based on our surgery that it is NOT going to cure your ME... and will in all liklihood make you much worse.

    My surgeon just smirked when I told him I had CFS and Lyme... I asked him if it would affect those.. he said NO.... I want to say he is and IDIOT... however as you all know they are just IGNORANT about our illness.

    If you do decide to go forward with the surgery, I hope your experience is more positive than ours was.

    Jacque Simmons
     
    Wayne and Sushi like this.
  2. Tito

    Tito Senior Member

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    I feel very sad for you. I've been ill for 26 years and there is something I have noticed. Doctors just want to be right and prove it to you. They do not care if their treatment turns bad. They want to see in your eyes that they are the hero that saved you. If it does not work with you, well, they try with the next patient...
    Have anyone ever heard a doctor saying "I don't know what you have, so I prefer to do nothing. It's beyond my realm of expertise."?
     
    Jacque likes this.
  3. justy

    justy Senior Member

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    What a terrible experience for you and your son - so sorry to hear of this.
    In my very limited experience almost all surgeries are potentially very difficult for PWME. I had a minor op on my cervix 4 years ago and was supposed to be up an back to work that afternoon - 4 years later i still havent gone back to work and now dont know if i will ever be well enough again. I dont blame it just on the surgery, but after a lot of nasty lung infections it was the straw that broke the camels back for me. Unless i was in a life threatening situation i dont think i would have surgery of any sort again.

    Thank you for sharing your experiences, it must be hard to go over it all again and write it down here. I also have a child with helath problems (probably M.E) Its hard to know you may have passed this on.

    Take care, Justy x
     
  4. merylg

    merylg Senior Member

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    Hi Jacque,
    Thanks for sharing the experiences of you & your son here. So sorry for your pain & suffering. I don't have Chiari malformation but I do have similar burning pain in my cervical spine. It's very disturbing. I've also recently started to feel jolts from the cervical spine to the head, that feel like a shock wave through the spinal fluid, if I step on uneven ground (it reminds me I am alive :aghhh:

    I have osteoarthritis in the cervical/upper thoracic spine, bulging discs, sero-negative spondyloarthropathy, enthesitis, FM pain and stiffness in upper back. Neck is stiff & has lost natural curve. There is facet joint degeneration due to loss of disc space. You can see MRI here: http://forums.phoenixrising.me/index.php?threads/my-spine-mri-comments-please.12096/

    One Neuro advised me not to let the surgeons go poking around in my neck :cautious:

    Facet block injections at 2 levels gave me 10 mths relief from pain. I am ready for some more :eek:

    Tito I HAVE met one Dr (In my whole life) who was prepared to say "We don't know what you have....we only know what you don't have" :confused: and I would say he is one of the best! (He is actually a well-known & well-respected specialist!)
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks for sharing this really, really painful story.

    You may save some others from going this route unnecessarily. I know a couple of patients who were diagnosed with Chiari Malformations and did decline the surgery because they had heard of the complications from other patients--not from their doctors!

    I hope unwinding this illness with Dr. K will eventually deal with the pain too--somehow!

    Thinking of you,
    Sushi
     
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  6. Jacque

    Jacque Senior Member

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    TY Sushi!! xx
     
  7. Jacque

    Jacque Senior Member

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    Soooooo TRUE .. most docs completely in their EGOS...but that is why I love Dr. Kogelnik. His not in the LEAST like that... Very HUMBLE,,,honest....and does CARE... Finally I find a doc who really does care...

    But every doc seems to beat his own drum... For instance I flew to Maryland to see the Egotistical Dr. Shoemaker...and was diagnosed with the Dreaded HLA genetic profile and told I had Bio Toxin Illness from mold... so I moved out of my gorgeous apt...with full blown ocean view convinced the mold was the cause of my illness... Well I moved 3 years ago and have gotten sicker and sicker... and he NEVER would listen to my VIRAL cry... I kept telling him I felt soooo viral...but he just blew me off.

    Unfortunately we are all just CASH COWS for all of these docs...:mad:
     
  8. Jacque

    Jacque Senior Member

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    Yah I never intended on reliving it...but Sushi suggested I tell my experience so others know it is not an easy fix... I am sorry for your experience as well... Seems that Anesthesia is our enemy.... And sounds like your surgery was not a real intense one... I was under for 3 hours or longer... Frustrating!!!!
     
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  9. Jacque

    Jacque Senior Member

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    Sounds exactly like my exactly...and now just add missing back of 5 of the vertebrae to it.... I have what they call "sailor neck" curve goes in opposite direction now... Super!! Both of my kids have horrible necks also...

    Stepping on an uneven surface should NOT be doing that to you tho.....that does not sound GOOD.. Your spinal cord is being "touched" by something when that happens... What does neuro say about that? Scarey....
     
  10. merylg

    merylg Senior Member

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    My kids I can already see developing neck issues too. They also have mild scoliosis like my mum & myself.

    The spine jolt only happened for the first time recently, so I haven't had a chance to discuss it with my (2nd) Neuro. This 2nd Neuro said to have as many facet block injections as I need (at least he understands "PAIN"). I've been sick with stomach bug, stomach ?ulcer/gastritis and sinusitis so having to pace my Dr visits. See hospital Rheumy next week, will tell him...but yeah should discuss it with Neuro. Also have referral for more facet block injections...have not made appointment yet...sigh...
     
  11. August59

    August59 Daughters High School Graduation

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    Jacque - On your spinal stenosis did they tell you what your AP (anterior-posterior) diameter was? Did you use a neurosurgeon or an orthopedic surgeon?

    Did they do your laminectomy from the front or the back? I hear horror stories about rear entry!! Brain decompression sounds scary and I'm sure it was. Did they give any explanation as to why your son contracted Chemical Meningitis?

    I have severe pain in my neck right in the back just off to the left of the center of my spine at C5-C7. Both of my foramen on the left side is completely block with bone spurs, but I have only lost about 50% of my strength in the left hand (the down side is that I am left handed). They want to go in arthroscopic and bore out the foramen, but he said it is not going to help the pain my neck. He said he would have to fuse at least 3 levels to straighten out my neck, but it is still not going to stop the pain in my neck.

    He says the only thing that was causing pain in my neck was my facet joints at 2, probably 3 levels, which are badly deteriorated. We confirmed this with nerve blocks cause the pain is only about an 1/8th of an inch under the skin. My AP diameter is at 6mm's now. This was about 4 years ago, so he could have changed his mind on things by now.
     
  12. merylg

    merylg Senior Member

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    Hi justy, I agree. I think we are vulnerable to hospital acquired infections. I also think the anaesthetics have a profound effect of further damaging already dysfunctional mitochondria.
    I came home from my last (gynae) surgery with a UTI (unaware at first because everything hurt anyway). Took longer to recover because of this.
     
  13. ixchelkali

    ixchelkali Senior Member

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    Thank you for sharing your story with us. I'm sorry you're in so much pain.
     
  14. Hope123

    Hope123 Senior Member

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  15. Jacque

    Jacque Senior Member

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    I couldn't tell you ... it has been a while back... I my spinal cord was rubbing tho... They went in from the back and in this case with 5 vertebrae I'd think they would need to... I can see how the front would be much much bettercuz they are not slicing all your damn muscles, nerves,and ligaments that hold up you HEAD...ugh Said my sons Chemical Men...was from the patch they used to patch over the triangle of skull they removed...they put a patch on made of the lining of cow heart.
    If I were you...I were monitor your arm pain and weakness and not do any surgery until that shows progression...I mean what would be the point...he says it will not help your pain anyhow... And I am living proof of that ... I have had a a BAD BAD neck my whole life ...but since my surgery it is like a buzzard has landed on the back of my traps and dug its talons into about C5-C6 area...ugh... KILLIN me as I write this...waiting for my pill to kick in...

    What about havin the nerves injected?? Lots of people are getting good results with that.. I am considering it.. I guess I was hopin this pain in my neck would go away with the Rituxan.... grrrrr
     
  16. jimells

    jimells Senior Member

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    Wow Jacque, this is unbelievable. Many years ago an older friend went to the hospital for back surgery. All the other patients on the ward told him that once they cut into him, he would be back, again and again, for more surgery. How could it be that so little has changed in 30 years?

    I really appreciate the warning. I was recently told that I have a 'borderline/mild cervical stenosis'. But the neuro looked at the MRI and said the radiologist was overreading it. I was sent to a physical therapist who did an extensive exam. His conclusion? "You have a 56 year old neck". The symptoms would have to be nearly unbearable before I would even consider something like surgery. If that time ever comes, I will think long and hard about your ordeal.

    I sure hope that life gets a little easier for you. And soon.
     
  17. Wayne

    Wayne Senior Member

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    Hi Jacque,

    Thanks for sharing your story. I'm sorry to hear about your difficult experience, and I commend you for sharing so others may avoid what you've had to endure. I may comment further at some point, but I did want to at least mention for now that we've found an arnica lotion that feels almost miraculous in its ability to reduce painful symptoms of all kinds. Here's a link if you would want to take a look:

    EDIT on 8/5/13: I just found this online:

    Salmon Creek Botanical has a internet site selling Arnica lotions for muscles & joint pain. I had bought their product before & went on line to purchase more. I ordered 2 bottles for $24.00 each plus $10.95 postage. They charged my account but never delivered the product. I called the phone numbers but they have been shut down. I found out they went out of business 8 months ago but they are still taking peoples money without delivering the product. I have a copy from pay pal showing the payment.

    http://www.scambook.com/report/view/211120/Salmon-Creek-Botanicals-Complaint-211120-for-$58.95
    .............................................................................

    DO NOT BUY THIS PRODUCT FROM THE SALMON CREEK WEBSITE!!!!!

    Salmon Creed Therapeutic Arnica Lotion

    [​IMG]
     
  18. Jacque

    Jacque Senior Member

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    Wayne..Thank you... I have tried lots of the Arnica Gels etc..Wonder how this differs... Id be willing to try anything on my neck... Lemme check it out!! Thank you!!!
     
  19. Teresa

    Teresa

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    Hi folks, I just thought I would mention checking out genetics like the MTHFR mutation which is affiliated with many health problems including headaches and fibromyalgia. Not only checking out testing for the MTHFR mutation may be imporant but also having a methylation panel done could give you some answeres. Please see Dr. Ben Lynches website for lots of good info. Good luck. Teresa
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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