Spinal clumping after spinal fusion - please help !! desparate for answers

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Hi all,

My name is Kim. I am from Brooklyn. I had a spinal fusion and laminectomy done by supposedly one of the Best Docs in the state - well he turned out to be the worse!! First and foremost, if you are ever considering surgery in NYC by an orthorpedic surgeon, please let me know and I'll tell if it was my doc. He is very arrogant and even suggested to me that I was crazy and that I would feel better upon returing to work (after months and months of telling him I was in more pain post surgery) when in fact it turns out I have slight nerve clumping possibly due to inflamation to arachnoid sac (inner most sac of spinal sac). Well this condition has a slew of systoms; a lot of which I have; abdomen (groin) pain, swelling, numbness and burning, back and left leg pain that is burning ,stabbing, numbness, bladder problems. I found this out a few weeks ago and it could possibly indicate arachnoiditis which I am sure I have because of my symtoms. Has anyone ever had this? Do you know treatments? Will it get worse? What helps for pain? I take Baclofen and Oxy with very little relief. Should I continue with PT? I fear this has made it worse as I am in worse pain now after 2 months of PT. Does it go away if it is caused by surgery? A NS told me it might go away. I don't know anymore. I have a lot of distrust for the medical world. Docs lie to cover their mistakes reguardless of how much pain a patient is in and most of the supposedly very best docs do not take insurance and charge $600 per visit. Well I'm not paying that kind of money for a possibly an incorrect diagnosis! My stupid surgeon even had an MRI with contrast and CT Mylogram done post spinal fusion surgery and for some strange reason, the clumping was not reported?? Very weird as I've already had two docs confirm that it should of showen up on the films. I am getting the films this week and will bring them to at least 5 different Nueros to get their opinion on films and my condition. Does anyone think I have a law suit if condition is on films and my stupid surgeon didn't tell me? I have already done a ton of research on the condition and it is terrifying me. Any info would be greatly appreciated!! Thanks sooo much and I hope soon they find a cure for all of our pain - Kimmi
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Hello
I am a victim/sufferer of chemical arachnoiditis. As many people know, there is no cure, treatment available to this day. Only painkillers, anti-depressants, anti-convulsants, opioids are available to deal with neuropathic pain. Many patients find themselves in this predicament after sugery, epidurals and myelograms. Although myelograms are not in use as frequently as they were before the MRI. I have had arachnoiditis for over thirty years, I am now 56. I managed to have a productive life until my 53rd year then hell breals loose.
Although, today, I can honestly I manage well. I am out of my wheelchair, use a cane for balance only or for sudden sharp pain, electric discharges etc. Other than that, my life has improved tremendously since three years ago, I was in a wheelchair.
My ways of coping with this man made disorder is the following: meditation, relief of stress, belief in Oversoul, belief in myself, alternative medicine, joyous homelife, supporting husband and family, anti-depressant for the pain at low dosage, not for depression, painkillers as needed. Searching for more solutions, advocating for stopping of unnecessary surgeries, epidurals in all situation until such time aneasthesiologists can understand and develop a conscience about the damages they inflict to ordinary people like myself and to deal with a life that is destroyed.
If any of you wish to find out more about arachnoiditis, please visit my website which is at the moment a little bit in limbo as I am redoing it. There is an enormous amount of information out there, there are so many people whose lives have been touched by this disorder. There is an enormous amount of scientific data on the internet since arachnoiditis is present in france, england, ireland, bosnia, canada, italy, usa, and I forget the others. So if you wish to know more, please contact me at the following address:
vermeirenart@gmail.com
A pleasure to share my info with you and to speak with you.
Louise
arachnoiditiscanada.com

Dear Kimmi:

Because I have heard many (very many) stories like yours post Laminectomy and or Fusion I have opted not to go that route.

My Neurosurgeon was up front and very honest with me. He told me that i would be trading one pain for another and that the surgery is not reversible. I told him I would do more research and thinking about the surgery.....well I have thought about it and have come to the conclusion that I can learn to live with the pain I have now.

After 12 years of living with dibilating pain and struggling along with a cane I know which movements will literally kill me, what works for me - like hot baths can make a bleak painful day much better. Sauna's really do relax my muscles and drinking plenty of water keeps everything working well.

I try to stay away from medications.....mainly because I know that once the meds wear off - I can be worse off mentally and physically.

I hope that your situation improves....

Kim