Arachnoiditis Looking For Friends

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Ref	Name	Age	Male	Female	USA	Comments
2	Sandie	60	0xx	x	Sanford, Michigan
3	Helen	73	x0	x	Vermont	Would like to hear from anyone about this disease
4	Pat	59	0	x	Buffalo NY Area
6	Warren	49	x	xx0	New Orleans	0
9	Marcelino	53	x	x0	Houston Texas	If anyone has a name of a physician in Texas that can diagnose this terrible disease, please email me with his name and number.
10	Donna	39	x0	x	CA	x
12	Barbera	55	oxx	x	Rochester, MN
13	Cindy	49	ox	x	Paradise Michigan	I live in a small community but am close to Sault Ste. Marie, Newberry, Marquette, Petoskey, Traverse City, those are some of the larger towns within 1 to 4 hours from me. Then further would Be Grand Rapids, Detriot, Lansing, etc.
14	Judy	48	xo	x	Canadaigua NY	I am in the finger lakes region
15	Dawn	27	ox	x	LA	x
17	Michael	60	x	0	Seattle tacoma wa	like to hear from you
18	Pete	40	x	x0	Michigan	x
21	Carrie	42	x	x	Grand Island, NE	I've had arachnoiditis since 1988. I'm miserable and would love to talk to hear others stories as to hear any hope possible!
22	*Terrance	42	x	0x	Queens New York City	HAD A MICRODISCECTOMY 1 1/2 YRS AGO-SUFFERFROM LEG, FOOT AND BACK PAIN EVER SINCE.
26	Thomas	39	x	xx0	Park Rapids, MN
29	Kay	63	0x	x	West Chicago, IL	my doctor says I have arachnoiditis. I have had many epidural's, 2 mylograms. Surgery twice for lower lumbar, l3, l4, l5. Also c3, c4. my feet and legs have changed, and have lost sensation in left leg that sometimes gives out on me. It is very weak. Last surgery 7/03 corrected the pain at l3/l4 level but the numbness and severity of strength is much the same so the surgery only helped the pain
30	Angela	49	0x	x	Arkansas	i would like to chat with others in this condition
31	Michael	77	x		Garfield nj
32	Barbera	42	00x	x	Dallas Texas	I am Canadian. Married to an American. I will do what I can to help. Let me know.
35	Linda	53	0x0	x	Ajax, Ontario Canada	x
36	Melissa	27	0x0	x	LANSING, MI, USA	x
37	Anne	40	0x0	x	Redding, Ca	I would like to find a friend who suffer like me.
38	Marjorie	72	00x	x	El Sobrante, California	Recently diagnosed with this condition. Live near Berkeley, California. Would like to hear from other sufferers.
40	Richard	77	xx	0	San Marcos, CA	I have had Arachnoiditis since 1986 and have tried everything including a Thalomotomy using Gamma Knife and have had no benefits.
41	Susie	43	x0	x	California, USA	I am a registered nurse. A year ago, I developed arachnoiditis after a series of three epidural steroid injections, followed by three epidural blood patches, all of which went inadvertently into the subarachnoid space.
42	Roberta	59	0x	x	Pennington Gap,Va	Chronic pain from Adhesive Arachnoiditis. Currently in pain management, but have no let up in the pain. Have had this disease since 1966. Want information on the latest treatments available and the medications that are best with a minimum of side effects. Developed immunity to some strong medications because of length of pain.
43	Debbie	51	0x	x	CANADA	I was diagnosed in Mar 2000. I got Arach from trauma, I know it is not so common and it is very frustrating getting the information I need to represent myself. I live with my son who is good to me for the most and I am blessed to have him. I am afraid that am going to loose my case and this is my last chance. No money for lawyers......I am sure you have heard that before. I don't live in the same province where I was injured. My X employer is a lawyer and is doing everything in his power to make sure I don't get reinstated!!! You think is was coming out of his pocket. I have run on long enough. Looking forward to hearing from someone. Debi
45	KW	37	x	x0	Katy Texas	Have been diagnosed with Arachnoiditis. Father also has it.
49	Russell	53	x	0x	Grand Saline, Texas	I have been suffering with Arachnoiditis for 25 years and was diagnosed with it in the 80's but did not know what all it involved until I found this website. I had no idea that their was so many people that were suffering just as I was. Thank God that this has now been brought to light and maybe there will not be as many victims and feel free to e-mail me any time that you just need to talk to someone who understand and unless they are going through this themselves they could never understand. People just think that you whyning and they just can't know and I hope they never have to find for themselves.
51	Mitchell	56	x	0x	Phoenix, Arizona	Married with 2 children, ages 7 an 11.
52	KD	48	x	0x	Gambrills Maryland	I have had multiple surgeries, epidural steroid injections, MRI's & CatScans since August of 1994 and was diagnosed with "A" about 6 - 9 months ago. I have been unable to work since my last surgery in 2000 (extended L5/L4 fusion in March and cervical fusion in May)
53	Sandra	22	0	x	California	tired of the pain tired of the suffering nobody believes me nor cares
57	Victoria	52	xx	x	Bloomington, IN	Please forward anyone that you know is a specialist for this disease to me. Thanks !
61	Shirlene	44	x	x	Louisville
62	Sue	38	x	x	SW of Chicago, Illinois	Diagnosed with Arach about one year ago. Have suffered from back pain for 10 years after car accident left me with 3 herniated discs...had fusion in 2000, have implanted morphine pump with no relief form pain. I now also take Methadone orally. I have begun to lose sensation in my legs and feet and falling alot. I feel like soon I wont be able to walk anymore. I don't want to be in a wheelchair so when I go out I do use a cane
63	Brenda	45	x	x	Idaho	I have been in pain for 15+ yrs. I have 6 kids and unable to work. I have had 2 operations and the pain is getting worse. I home school the kids. I take methadone and norco but it only takes the edge of the pain. Trying to keep a low amount of pain meds. It would be nice to talk or just listen. Email me or if you want I can call you. Hope to hear from someone soon.
65	Kathy	40	x	x	Houston,Tx	Hi everyone! I would love to hear from anyone who is battling with arachnoiditis. I have had four back surgeries. and developed it after the third one. I struggle with depression and addiction to my pain meds. I need a friend who understands.
66	Barb	48		x	USA	Looking for someone close by that I can commented this about "A" disease and find out how they deal with it.
67	Diana	51	x	x	Kansas City	Would like to hear from anyone who can give me information on this disease
68	Kathy		xx	x	Brazoria,tx	This is a lovely lady who would very much like to hear from anyone else with this disease.
71	Mark M.	54	x	x	Southern California	I am a writer living in southern california. I broke my spine at 15 and put of lumbar surgery until I was fifty. I now have been diagnosed with arachnoiditis. Also diagnosed with aggressive osteoarthritis, fibromyalgia, and Behcet's disease. Other than all that, I am quite fine. I would like to hear how others went about researching this nasty little disease and what they found that is helpful, if anything is. Thanks.
74	Mary Kelly	47	x	x	New Hampshire	I was diagnosed with arachnoiditis in 1978. My Dx came consequent to a myelogram in which the dye remained inside for over 2 weeks. At that point another attempt was made to remove the dye and the surgeon, at one point turned the table upside down. The dye raced to my brain throughout my spinal cord, where it remains almost 30 years later. At once I felt as if my brain exploded. I immediately lost my vision and I did not move or bring my head up for a very long time. I did improve, yet this past summer I fell and broke my ribs and back. The trauma sent me spiraling downward fast. I can no longer walk. The only thing I had for pain was an ice bag. Thanks to the folks in Dr. Burton's office and at the Sr. Kenny Inst., I now have some pain medicine, yet, not nearly enough. I will travel back in spring for more help and a stay in the spinal injury unit. I love my life, and I hate to have to go, but I can not make it without the help. I often wonder how long a person can suffer in this manner, and what tomorrow will bring. I am thankful for my husband, and for my work. (i run a medical practice in Vermont and specialize in Pt, counseling and rehab). I think at times that work is my only salvation!! Thanks for listening.
75	Rayden	40	x	x	Calgary	i have arachnoiditis from a severe back injury as well as it is now spreading quite rapidly now and i would like to know the out come
78	George	73	x	x	USA	Have been recently diagnosed with arachnoiditis with the past year and have had 3 epidural's with no benefit. Used kadian for 3-4 months with minimal benefit and have recently been changed to a high dose of neurontin (1200-1600mgs.twice a day. Another option being considered is an electronic implant which some people have had success Looking for people who have had first hand experience and what there opinion has been
84	David	81	x	x	Coral Springs	Over 8 years, two failed surgeries and countless modalities, Only just diagnosed
86	Thomas	54	x	x	Hornell, New York USA	54 years old diagnosed with arachnoiditis in 1998 caused by mylogram dye from back surgery in 1979. Symptoms are getting progressively worse and I sure could use a friend who understands this terrible disease.
87	Donald	63	x	x	New Jersey	I was born with cerebral palsy. When I was 20, I underwent a procedure at the University of Iowa called Ultrasonic Irradiation, which involved the shooting of dye into my brain to make a map of it so that the doctors could identify my damaged brain cells. (I was told that I was the last to receive the dye)
87	Melissa	x	x	x	Vermont	I have yet to be diagnosed. Still looking for a doctor who isn't afraid to help. I have to beg for every bit of pain medication. Ct Cisternogram on 5/29/02 with isovue. instant reaction that was ignored. suffering since. I thought i had some long lasting spinal headache. What a hard lesson to learn about who one can trust. Thank God for the internet as we laymen have no access to a medical library. I will make it my life's work to educate the public about injectables into the spine. The only thing that can keep me down is inadequate pain medication. I am young, newly married with a 10 month old. I need to function for my family.
88	Maryann	51	x	x	Ontario, California	I was diagnosed with sponylolethesis, herniated disc, degenerative disc disease and stenosis requiring my 1st surgery in 1981...prior to that I had spinal meningitis as a complication from a skull fracture that ruptured my spinal cord and caused bleeding into the spinal canal. I have had many myelograms and spinal injections also. I have now had 7 surgeries to date and was recently diagnosed with arachnoiditis. I may need an additional surgery to remove existing hardware that was put back in 2 yrs ago. I am interested in any research or facility that specializes in this disease, so please email me if you have any info. I have gotten off all narcotics after many years and don't want to go back on.
89	Julia	37	x	x	Spring, Texas	I, unfortunately, have suffered endlessly with back & pelvis pain for almost my entire adult life. More recently, in March of 1999, I was scheduled for a Laminectomy due to herniated disks in L4 & L5. However, unbeknownst to me at the time, my surgery would later prove to be devastating. In fact, it was one year to the month in March 2000 that I received my devastating news; I learned that I was diagnosed with a rare and incurable disease, Adhesive Arachnoiditis. These two words have forever altered my life in a horrific way as I have suffered with excruciating pain every minute of every day.
90	Mary	55		x	Minnesota	I have MANY MANY questions & would like answers
91	John	65	x	x	x	I was diagnosed with arachnoiditis at UCLA Medical Center after having back surgery 8 months ago yet not improving. The difference I seem to have from others is that I have no pain thankfully but i have extreme weakness in my lower limbs and extreme fatigue. I have been in physical therapy for about 9 months but really am not improving. I was wondering if there are others out there who have my symptoms? Pain seems to be the principle symptom and I don't have that.
94	Judy	44	x	x	WA	I am scheduled to meet yet another "Spine" specialist, but my Dr. mentioned arachnoiditis as a strong possibility. It all fits the picture too perfectly. How does one cope?
95	Patti	50	x	x	US	Diagnosed w/ A a month ago, waiting to see an NS
96	Elleen	x	x	x	Texas	Just diagnosed- trauma induced- interested in talking to others.
97	Helen	53	x	x	Cleveland, Ohio	I've been diagnosed with arc and just want to talk to others who also are suffering and how they cope with the symptoms!
98	Kathy	48	x	x	Georgia	3 mylograms, 1 chemonucleosis procedure, 5 other back surgeries, still in horrible pain, but have never heard of this disease.
99	Kate	36	x	x	Lake Tahoe	Was diagnosed 6 months ago, had symptoms for 6-7 years,common reply from doctors you shouldn't have this, family doesn't believe me.
100	Sandi	59	x	x	S/E Wisconsin	This past year is when I first found out that the suffering I have been doing for the past 21 years is from Arachnoiditis. Only after trying to get to the bottom of another recent flare up, and requesting all of my records for 30 years did I find that in 1983, 1986, 1994, 2000, 2003 Dr's had indicated my Arachnoiditis problems! No one had informed me, until I couldn't take it any more. In 1983 I had myelogram, (renografin) then Chymopapain injection, (10 punctures !) followed within two weeks another myelogram (depo-medrol) andlaminectomy/discectomy surgery following the depo- medrol. The pain was so bad the first go around I woke up on the operating table while under general anaesthesia. Now my spine problems have progressed, as more than likely so has the AA. The pain, burning, numbness, tingling, bowel/bladder issues, falling, tripping, depression are the worst things to cope with. I do try to continue to work, but am down in that endeavour to only about a third of what I used to be able to do. Anyone out there from Wisconsin too. I would really like to find a local support group/meeting. Thanks for listing, I would be lost without all of you. Sorry we have to have this malady to bring us together. Hopefully together, we can bring about some help for others in the future. Take care, and God Bless
101	Mark	41	x	x	Wisconsin	My name is Mark and I am going thru constant pain and suffering, struggling with the loneliness also. I have been fighting this disease for several years and doing what all the Dr's. ask and ready to throw the towel in.
102	Richard	48	x	x	Madison, Wis	I first herniated the disc at L5-S1 in 1986, various injections, procedures, and surgeries leading to fusion in late 1991. July of 2003 herniated the 2 discs above the metal and after epidural's and a myelogram in April 2004 was told 2 days later that I had Adhesive Arachnoiditis. The Doctor is leaving the decision about further surgery up to me... I think NOT! Would love to converse with others, now that I have so much free time on my hands, as I'm apparently on an extended vacation for the rest of my life. Might as well make it interesting and meet new people who understand this nightmare. Looking forward to hearing from you. (this posted 5th of June, 2004)
104	Dale	60	x	x	LaPorte,Indiana	I Retired after 34 Yrs as an Ind State Policeman. I have suffered from lower back pain for about 30 yrs. I had a ruptured discs Removed in 1970 and have had lower back pain ever since . I recently had 2 MRI'S and a mylogram and was told i had a severe case of arachnoiditis . Apparently Doctors in So.Bend and Chicago Have no cure . I'M told that surgery will not help . I have trouble doing what i enjoy most,,Playing with my grandsons,Golf,Working in the yard,and sex . I guess you just have to live with this problem and live with the severe pain
105	Carey	28	x	x	Ohio	I have just been diagnosed with arachnoiditis and in fear.
106	Bernado	55	x	x	San Antonio Texas	I was diagnosed with arachnoiditis in 1985 by VA doctors,but just three weeks ago, I had a laminectomy of L3,L4.L5 due to spinal stenosis, and they say it is not arachnoiditis, its due to arthritis? I wonder if any one else has been told this too.
107	Barbara	66	x	x	New Mexico	Just diagnosed recently, having hell with symptoms and need someone to share with.
108	Jim	44	x	x	Carson City NV	Diagnosed with arach about two years ago. I am not in the extreme pain category at this time. I am slowly loosing strength in my legs. Mainly my left leg is the weakest. Had surgery when diagnosed to remove calcific scar tissue from upper cord, between my shoulder blades. Have not had any improvement. Fortunately I am still working as I have three young kids and a wife to provide for. I have a wonderful Dr. in Reno that is trying to help me as much as she can. Best of luck to all of you
109	Sandi	59	x	x	Brookfield, WI	Hi, I have suffered with AA since 1983,now progressing, and only just found out what diagnosis Arach actually is/has been in 2004. Dr's kept it to themselves after a botched series of injections and surgery
110	Alice	47	x	x	Louisiana	Had surgery in 1986. The condition started immediately after and progressing. Just diagnosed with this condition from cyst biopsy. Would love to hear from those who want to share information and support. Thank You.
111	Jay	53	x	x	Tampa	I have had multiple back surgeries since 83. Was diagnosed with failed back syndrome. Had pain pump for 9 years. Many surgeries, andover 20 myelograms, 20 nerve block injections, some with Phenol, all from respected docs. I have now been told I have arachnoiditis and am in the first stages of handling it. It's a matter of constant pain daily, ineffective treatment, and I still keep a positive face for friends and public. I believe that is most important.. ATTITUDE! Having just been told, it's a little tough right now. Emails welcome. Jay
112	Dan	27	x	x	Detroit, MI	Hoping this reaches the airwaves. I am 27 and was diagnosed with arachnoiditis in early 2004. I have had very little luck finding doctors willing to work with my condition. Many seem to think that the symptoms are in my head. I am looking for people to chat with about life with arachnoiditis. I seem to be non-responsive to narcotics and am in constant unbearable pain that I wouldn't wish on anyone. If you can think of a symptom, chances are I have it. I'm trying to keep busy by writing, drawing and reading everything I can. I could really use some contact with others that know how very real this pain is
113	Helen	62	x	x	Antioch, Ca.	Have arachnoiditis for past 15 years. It got worse about 3 months ago. The pain is indescribable and my walking abilities are practically nil. I would like to speak with someone.
114	Al	46	x	x	Udora CANADA	No official diagnosos as yet, but I received my health records from Sick Kid's Hospital which confirm a myelogram using ethiodan at age 8 prior to surgery for spina bifida (menegocele). I've been going nuts trying to get my GP to figure out what is causing the progressive neuropathy, loss of balance, weakness in my legs, angina-like chest pain (heart is fine), depression, and increasing "phantom" pain. Looking for a doc who knows the disease.
116	Linda	40	x	x	Portland, Oregon	My fiance suffers from arachnoiditis. If anyone has any info, please email me. Thank you.
117	Paula Irene	59	x	x	Missouri	I have had arachnoiditis for 13 years. I'm tired of not being able to do anything. My hobbies are making quilts, reading, and cooking
118	La Donna	40	x	x	Las Vegas, Nevada	I was told that I had Arachnoiditis in 2001. It is painful and so hard for people to understand. I often feel as if I am speaking Greek and wish I had someone to talk to. That's all.
119	Jacqueline	52	x	x	Gallatin Tennessee	I am married,mother of 3 grown children and 4 grandchildren and number 5 will be here in December. I am disabled due to and automobile accident in 1986 which resulted in me having to have back surery and as a result I was told I had arachnoiditis. . It is truely a difficult disease and I would love to have your support
120	Wayne	53	x	x	Mobile, Alabama	Arach sufferer for 2 1/2 years, frequent poster to COFWA.ORG Spend lots of nights on computer when I can't sleep because of pain. Am fighting having pump implanted,but do have SCS, minimal success with it but another surgery (#5) is scheduled soon.
124	Louise	53	x	x	Ontario, Canada	Hello friends, finding this site is a blessing, I, as well, have been diagnosed with arachnoiditis.One doctor has told me to go home, try to make myself comfortable. No treatment,no cure available. I have now realised that I have tolerated pain for the last 30 years, not knowing that it was a real disorder. I will try tai-chi, accupressure, reflexology, reiki, and any other alternative therapies to, at least try to alleviate the pain. Happy t o be among you, support from others who are, so to speak, in the same boat, is great.
125	Laura	43			West Virginia	I have suffered from Arachnoiditis for 5 years. I also have caudia equina syndrome, arthritis, and 2 herniated disk. I'm sorry to know that there are others like me but I am thankful to know I am not alone.
126	Gerard	44	x	x	New Jersey	I had an epidural blood patch 7 months ago-self-diagnised arachnoiditis-partial response with corticosteroids.
127	Penny	39	x	x	Dubuque, IA	Thanks for establishing this site. I developed Arach. as result of spinal surgery. Deep Bone pain. It would be nice to hear from any of you.
128	Cindy	-	x	x	Calgary, Alberta	I am a mother of one and have had arachnoiditis for two years now. I wanted to share my stories with others and finally become a part of a support group for this disabling disease

Ref	Name	Age	Male	Female	USA	Comments

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