Arachnoiditis: Looking to talk with others

So with you! Sometimes you just have to stop. My failed neck surgery caused my greatest disaster. I’m now just trying to keep as comfortable as I can. My doctor is truthful with me said she will order any type of test I want but the outcome will not change. 😨

I have had AA for almost 3 years. It has been simply devastating to say the least! It began with a "minimally invasive, one level L2 surgery" on an existing fusion of L3, 4 & 5. The neurosurgeon hammered on my vertebrae too hard, breaking a big chunk of it off, and then his tool slipped and cut my dural sac-3 inches long-causing it to leak!! I could not walk after a prolonged surgery on my right leg, I was kept doped up, and developed MSSA in the surgery sight, and was close to dying. I could not walk for 2 years, had stem cell therapy in Scottsdale with Dr. Malan, and I was able to walk, again. However, my sever pain has never stopped and my right leg, the worst, is atrophying and I have developed severe, killer muscle spasms down both legs that are devastating and beyond description, really. Please let me know if anyone has successfully sued their doctors for this heartbreaking, life-altering condition. I tried for 2 years to sue the neurosurgeon (in Reno) and no one would represent me, even with confirmation from 3 surgeons. However, he is being investigated by the Nevada State Board at the moment, because of the letter i wrote out of sheer frustration!I would love to hear from you! Thanks!

HELLO ANNA2019, I HONESTLY CAN FEEL THE DESPERATION, THE PAIN. MY HEART SINCERELY GOES OUT TO YOU. 2008 WIDE LAMINECTOMY, S-1. L-2. L-3. L-5. L-5. NO FUSION!!!!!!! HE CALLED IT, "FAILED LAMINECTOMY" CODE WORD FOR A.A. I BECAME WORSE! LOTS DONE AFTER THAT! 2017 FUSION, FEW DAYS AFTER SENT TO ER, MRI, FRACTURED VERTEBRAE, CAUSED BY A "LOOSE SCREW??" ANOTHER SURGERY!!!!! YOU MENTIONED YOUR FRACTURED VERTEBRAE. AND PERHAPS SUEING. I WAS SPEAKING WITH A FRIEND, O.R. SURGICAL NURSE, TOLD HER ABOUT MY FRACTURE, I SHE ASKED, WHY DIDN'T I SUE? I SHOULD HAVE! WHEN HE OPENED MY SPINE HE DID NOT SEE ALL THE SCAR TISSUE?? I HAVE SOME OF THE SAME PAIN AS YOU. IT IS LIFE ALTERING. YOU MAY HAVE A CASE. INCASE YOU DESIDE TO SUE MAY I SUGGEST TO BRING TO AN ATTORNEY ALL THE RESEARCH YOU HAVE DONE. IN THE RESEARCH IT DOES BLAME THE SURGEONS, NEUROSURGEONS, EPIDURALS AND MORE. THEY ARE A VERY STRONG GROUP HARD TO BEAT BUT ALL OF US CAN TRY AND STOP THE CAUSES MEANING EVEN GOING TO WASHINGTON. IF I GO SHOPPING FOR JENES, PANTS I CAN'T TRY THEM ON THE PAIN IS SO BAD AND I CAN'T BEND. MY HUSBAND IS NOT ALLOWED THE THE WOMEN'S DRESSING ROOM. SHOES, "MY HUSBAND" HAS TO PUT THEM ON ME. IT KILLS ME!!!!!!!!!!!!!!!!!!!!! GOOD FOR THAT LETTER, YOU DID THE RIGHT THING. THEY CAN'T GET AWAY WITH IT ANYMORE INCLUDING YOUR DOCTOR. I SHARE THIS HERE LOOK UP DOCTOR FORREST TENNENT, EXPERT IN AA, DR. BURTON, ANOTHER, NORD, NATIONAL ORGANIZATION RARE DISORDERS. DOCTOR BURTON IS NOT SHY, SAYS HIS PIECE. I HOPE I HELPED AT LEAST A LITTLE. PLEASE LET US KNOW IF AN ATTORNEY WAS CONTACTED.

hi Joan happy to hear from you. We must be our own Advocate, no one else will. Please let me know how your Consultation goes if you can. I have a different kind of pain now. I can not take too much more of this. My Pain Management dr. is a excellent dr. but I am his first patient with AA. I spent the day seeing if Neurology would help? Dr. Tennant, I faxed him results of my recent MRI and a few other things. the reply I received was a shock and a disappointment. his reply, if it was from him? There are times I don't think he is the one responding?? Well, the reply was informing me that he wrote a book on AA and I hope you feel better. wishing you good luck!!!!!!!!!!!!!!!!!!!!! All I want in my life is to be comfortable, dress myself and leave the house not just to see doctor's.

My Pain Management dr. said the same thing but not so kind. We have get our heads together to bring this to the attention of our Senators, Congressmen, News papers ETC. I don't want to die this way with no accomplishments so others don't have to go through the same. Legislate or try to a bill the those surgeons must!!!!!!!!!!!!!!!!!!!!!!! inform post-op patients of the dangers they may cause others. This has become a epidemic and NONE of Medical Community wants to acknowledge it. Law suits!! No one wants to help me not even Neurologists. As soon as I tell them my diag. they say they are not familiar with it. LIES of course they heard of it.

Hi! So much to respond to but am not in a GOOD position right now. Am attending an excellent 3 week program on Pain Rehabilitation at Mayo Clinic Jacksonville and just finished week 1. Was so sad that you were left with bad impression about Dr Tennant. Wish I could explain. But he is no longer doing patient care only Education. Please go to his websites for more help. He is a wonderfully kind doc but is now in semi retirement since closing the Clinic in Nov 2017. DEA FORced it upon him totally unfairly. He is in his late 70’s and preferred to retire before dealing any more with crazy DEA. Have been an ARC patient for at least 15 years and finally diagnosed in 2012. So I totally understand how everyone gets the run-around with this disease listed in NORD (National Organization for Rare Disorders). This might be a good resource for you. Look please for Dr Tennant’s websites on Hope and others. There is an excellent manual for Caregivers of ARC patients. Print and refer to it daily! Big hug to all with much understanding. J

Coincidentally tonight had email from Dr. Tennant´s office advising of new bulletins on ARC. Trying to attach but getting "attention required" notice. Will try to copy tomorrow, but do try to go to his websites....

Is this the one?
https://www.painnewsnetwork.org/stories/2019/6/7/16-key-findings-about-arachnoiditis

Hello John, I faxed Dr. Tennant a copy of my MRI and more information about my AA in response my fax was ignored and whom ever tried to sell me Dr. Tennant's new book. I was so upset and very disappointed. I always received good medical information.

I've never tried to fax any information to Dr. Tennant but maybe it was not received on their end or got lost in the shuffle of paperwork? Understandable to be upset and disappointed. You might try faxing it again.