Wendy,
Could you please resubmit your comment to Gregg's post? We accidentally deleted it.
Thank you, Wendy!
LWA
Monday, November 30, 2009
Eric Drew
Please welcome Eric Drew. Eric's email address is eric@ericdrew.com.
Eric says:
"I have been recently diagnosed, so I am just learning about the disease."
Welcome Eric. Please reach out to our membership with questions. Visit our Facebook at Life With Arachnoiditis for face to face interaction with others.
LWA
Eric says:
"I have been recently diagnosed, so I am just learning about the disease."
Welcome Eric. Please reach out to our membership with questions. Visit our Facebook at Life With Arachnoiditis for face to face interaction with others.
LWA
Sherri Crider
Please welcome Sherri Crider. Sherri's email address is dscrider@att.net. Sherri says:
"I have AA and am seeking information. Thank you."
Sherri, welcome to our group. Please feel free to email others for more information. Our Facebook is becoming more popular and is a way to interact with others face to face. You can find us at Facebook and search for Life With Arachnoiditis.
LWA
"I have AA and am seeking information. Thank you."
Sherri, welcome to our group. Please feel free to email others for more information. Our Facebook is becoming more popular and is a way to interact with others face to face. You can find us at Facebook and search for Life With Arachnoiditis.
LWA
Jacqueline Fox of Cambridgeshire England
Please welcome Jacqueline Fox from Cambridgeshire England. Her email address is: silver_fox1410@hotmail.com
Jacqueline says:
"I'm with the NHS UK. Hello there, I developed Arachnoiditis, after my Dura-mater was accidentally cut during a back op, in 2000. Since then I've been controlled resonably with Gabapentin/Tylex & Volterol. I am now on the maximum dose of Gabapentin, wondering if any other treatments or drugs out there? Regards Jacqueline"
Welcome Jacqueline. Please reach out and email others and be sure to visit our Facebook where you can "see" and interact with others.
LWA
Jacqueline says:
"I'm with the NHS UK. Hello there, I developed Arachnoiditis, after my Dura-mater was accidentally cut during a back op, in 2000. Since then I've been controlled resonably with Gabapentin/Tylex & Volterol. I am now on the maximum dose of Gabapentin, wondering if any other treatments or drugs out there? Regards Jacqueline"
Welcome Jacqueline. Please reach out and email others and be sure to visit our Facebook where you can "see" and interact with others.
LWA
Rosy of Texas
Please welcome Rosy of Texas. Rosy's email address is rosy457@yahoo.com.
Rosy says:
"I need tips on managing the pain."
Welcome to LWA, Rosy. Please reach out and email others that have listed their email address. We are here for you.
LWA
Rosy says:
"I need tips on managing the pain."
Welcome to LWA, Rosy. Please reach out and email others that have listed their email address. We are here for you.
LWA
Derek from Australia
Please welcome Derek from Australia. Derek's email address is:
aussie_redback66@yahoo.com.au
Derek's diagnosis is: Chemically Induced Adhesive Arachnoiditis caused by the contrast medium used being too toxic for human use, also arachnoiditis and fibrosis.
Welcome to our group, Derek.
LWA
aussie_redback66@yahoo.com.au
Derek's diagnosis is: Chemically Induced Adhesive Arachnoiditis caused by the contrast medium used being too toxic for human use, also arachnoiditis and fibrosis.
Welcome to our group, Derek.
LWA
Anna Morgan
Please welcome Anna Morgan of Florida. Anna's emails is annathea25@gmaail.com
Anna says:
"Arachnoiditis was featured on an MRI taken in 1995. I had had four laminectomies and then had a 4 level fusion (L-4 - S-1). I also had 2 myelograms in the 1970's. After the fusion I hAd a year and a half of relief, then I had unrelenting pain which required large amounts of prescription pain killers. In 2002 I was lucky enough to receive an intrathecal pain pump, which changed my life. This horrible disease forced me to neglect my family and ended my career. I have a Master's degree in education and had taught for 27 years. Two years ago I received my SS Disability on the first request. Today I live the best I can with a fantastic husband and daughter. They are the world's best at understanding and helping. I also have complete foot drop in my left foot."
Anna says:
"Arachnoiditis was featured on an MRI taken in 1995. I had had four laminectomies and then had a 4 level fusion (L-4 - S-1). I also had 2 myelograms in the 1970's. After the fusion I hAd a year and a half of relief, then I had unrelenting pain which required large amounts of prescription pain killers. In 2002 I was lucky enough to receive an intrathecal pain pump, which changed my life. This horrible disease forced me to neglect my family and ended my career. I have a Master's degree in education and had taught for 27 years. Two years ago I received my SS Disability on the first request. Today I live the best I can with a fantastic husband and daughter. They are the world's best at understanding and helping. I also have complete foot drop in my left foot."
Sunday, November 29, 2009
Input from Patient on Kovacik Protocol
Hello! My name is Connie Keeler and I'm the patient from Tennessee that visited Karen and Dr. Holsworth for 10 days. I had a wonderful time walking with Karen each morning and seeing Dr. Holsworth for the treatments. I've been back home for one week and have been able to continue my treatments. I have been able to decrease the amount of pain medicine that I take by 25% and I'm sleeping better. I can't say enough good things about Dr. Holsworth and the protocol that Karen and I are on. My doctor in Tennessee has been able to communicate with Dr. Holsworth and supported my trip to Colorado and is ordering the same treatments for me in TN. I am very excited about my improvement. I would encourage any one with arachnoiditis to consider getting in touch with Dr. Holsworth and going to see him so that you too may also receive the treatments and begin to fell better. I feel that I have received an early Christmas present. God does wonderful things through his special angels (Karen & Dr. Holsworth)!
Saturday, November 28, 2009
Patient from Tennessee
There is another patient on the exact Karen Kovacik protocol. A patient visited Colorado, undergoing treatment with Dr. Holsworth for two weeks in November. This patient also experienced improvement while undergoing therapy. Patient wrote after returning home to Tennessee that she continues to improve after each treatment.
This particular patient never had back surgery but did have many ESI's. Patient was diagnosed with arachnoiditis in May 2009.
We have asked this patient to publish her experience. Things don't always move fast when you have arachnoiditis, so her story make take some time.
Karen Kovacik, LWA
This particular patient never had back surgery but did have many ESI's. Patient was diagnosed with arachnoiditis in May 2009.
We have asked this patient to publish her experience. Things don't always move fast when you have arachnoiditis, so her story make take some time.
Karen Kovacik, LWA
Friday, November 27, 2009
Update on Karen Kovacik
Progress Updated to November 27, 2009:
I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising and I am narcotic free now for over 6 months. Diazepam free just about 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. Made 4.6 miles handily and it may be time to look at titrating off robaxin.
For a few months now I have had twice weekly therapy. The ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. Dr. Holsworth also added a glutathione push (GSH) after each C/mag IV and it has worked beautifully. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water.
Almost all leg nerve pain is gone ... most of the time. It kicks up when I go skiing. I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart! The past few weeks I can crawl into bed at night without pain creeping in after a few minutes .... and I mean *no* pain. I've teasingly told Dr. Holsworth, "If I get any better, you won't be able to stand me!" I am so thankful and so very humbled by the progress we've made. What a gift to have Dr. Holsworth on my team.
To stay updated on my activities, send me a friend request on Facebook. Look up Karen Kovacik and in your friend request message box please identify yourself as having read my profile on Life With Arachnoiditis.
Go to www.acam.org to learn more about alternative medicine. I've learned the "impossible just takes longer!" I am very close to having my life back ... it will be a life long journey I believe.
God bless you all. Please don't hesitate to contact me if you need anything.
Karen
I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising and I am narcotic free now for over 6 months. Diazepam free just about 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. Made 4.6 miles handily and it may be time to look at titrating off robaxin.
For a few months now I have had twice weekly therapy. The ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. Dr. Holsworth also added a glutathione push (GSH) after each C/mag IV and it has worked beautifully. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water.
Almost all leg nerve pain is gone ... most of the time. It kicks up when I go skiing. I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart! The past few weeks I can crawl into bed at night without pain creeping in after a few minutes .... and I mean *no* pain. I've teasingly told Dr. Holsworth, "If I get any better, you won't be able to stand me!" I am so thankful and so very humbled by the progress we've made. What a gift to have Dr. Holsworth on my team.
To stay updated on my activities, send me a friend request on Facebook. Look up Karen Kovacik and in your friend request message box please identify yourself as having read my profile on Life With Arachnoiditis.
Go to www.acam.org to learn more about alternative medicine. I've learned the "impossible just takes longer!" I am very close to having my life back ... it will be a life long journey I believe.
God bless you all. Please don't hesitate to contact me if you need anything.
Karen
Sunday, November 15, 2009
Welcome Brian Heilmann
Please welcome Brian Heilmann of Arizona. His email is sentinel50@frontiernet.net. He has been diagnosed with arachnoiditis and has had surgeries in 91, 96, 99, and 07.
Brian says:
"I use to be a Special Ops Member for the USDOJ until I was in a repelling accident 1991. I had a discectomy and it was ok until I got injured on the job again. Laminectomy in 1996; and then Instrumentation 1999 and retirement. In 2007 I had a failed attempt to put a SCS in my back. Too much scare tissue so Percacet and Lyrica. I still have tremendous pain I am getting very tired of it. I am interested in exercise and the vitamin regements suggested in the lead article by KK. thank you Brian Heilmann"
Brian says:
"I use to be a Special Ops Member for the USDOJ until I was in a repelling accident 1991. I had a discectomy and it was ok until I got injured on the job again. Laminectomy in 1996; and then Instrumentation 1999 and retirement. In 2007 I had a failed attempt to put a SCS in my back. Too much scare tissue so Percacet and Lyrica. I still have tremendous pain I am getting very tired of it. I am interested in exercise and the vitamin regements suggested in the lead article by KK. thank you Brian Heilmann"
Welcome Gregg
Please welcome Gregg Newman. Gregg's email is greggoo7@aol.com. He is from Pennsylvania and has been diagnosed with arachnoiditis and failed back surgery syndrome.
Gregg says:
"I have had 7 lumbar surgeries over the years. I am now experiencing severe pain, throbing, electrical shooting, numbness, tingling, burning, freezing cold and many other horribly debilitating sensations in both my legs and feet all the time. I was wondering if anyone else has these very painful symptoms and what do they do for relief of them. I've heard Neurontin works well, is there any thing else? Is anyone using Neurontin successfully? What strength are you using? What about those experimental drugs? I would like to be in the trial if possible. Please help me. My pain and other symptoms are getting progressively worse."
Gregg says:
"I have had 7 lumbar surgeries over the years. I am now experiencing severe pain, throbing, electrical shooting, numbness, tingling, burning, freezing cold and many other horribly debilitating sensations in both my legs and feet all the time. I was wondering if anyone else has these very painful symptoms and what do they do for relief of them. I've heard Neurontin works well, is there any thing else? Is anyone using Neurontin successfully? What strength are you using? What about those experimental drugs? I would like to be in the trial if possible. Please help me. My pain and other symptoms are getting progressively worse."
Welcome Mary-Ann
Please welcome Mary-Ann Brewster-Leroy of South Africa. Her diagnosis is arachnoiditis. Email her at mary-annb@xsinet.co.za
Mary-Ann says:
"I have just been diagnosed with arachnoiditis and have looked on
the internet for articles. I feel very frightened as the doctor who
diagnosed me let the phsyiotherapist tell me then he left for overseas.
I am 58 years old and normally nothing knocks me down but this is just too
much.How does this progress? Is it quick or is it over many years. I need
to prepare my future life.
My husband is 84 years old and my daughter and family leave for Austrailia
soon then I have no-one.I am so frightened."
Mary-Ann says:
"I have just been diagnosed with arachnoiditis and have looked on
the internet for articles. I feel very frightened as the doctor who
diagnosed me let the phsyiotherapist tell me then he left for overseas.
I am 58 years old and normally nothing knocks me down but this is just too
much.How does this progress? Is it quick or is it over many years. I need
to prepare my future life.
My husband is 84 years old and my daughter and family leave for Austrailia
soon then I have no-one.I am so frightened."
Welcome Candi White
Please welcome Candi White of Florida. Candi's diagnosis is epidural fibrosis, fibromyalgia, brachial neuritis or radiculitis. Candi's email address is
candee2b@aol.com
Candi says:
"i am 44 years old. my first surgery was 13 yrs ago, a discectomy for a ruptured disc. my second surgery was 21 months ago, a interbody lumbar fusion with instramentation at L-5 and S-1. i did great until 5 months after surgery, i started feeling alot of pain, kept getting worse, tried pt, made it worse. i was diagnosed with severe epidural fibrosis of the L-5 and S-1 nerves. i have tried epidural injections and am now on pain managment with narcotics. i am in pain all the time and have to walk with a cane most of the time. when i go shopping, i have to go wherever there are scooters. i cannot pick up or do many things with my 2 year old grandson. i also have a herniated disc pressing on my spinal cord at C-4 and C-5 which caused chronic pain, headaches and my arms to constantly fall asleep. i drop things all the time. i also have just recently been diagnosed with fibro myalgia and am on cymbalta. can't take lyrica, makes me feel drunk. Thank the lord for my husband!
, he is the most understanding, wonderful loving man in the world and i could not get through this without him. there is nothing they can do so i try to deal with this the best i can. i applied for disability one year ago, they denied me two times. i have a lawyer and we filed an appeal 7 months ago. just waiting. before all this happened, i was a regional manager of one of the largest appraisal companies in florida. now i can't sit for more than 15 min, stand for more that 5 and cannot walk very far. there is nothing i can do for work and my husband is doing all he can. the medical bills are killing us. i have great faith in the lord and know this is happening for a reason, i just don't know what it is yet. thanks for listening. i pray for a miricle."
candee2b@aol.com
Candi says:
"i am 44 years old. my first surgery was 13 yrs ago, a discectomy for a ruptured disc. my second surgery was 21 months ago, a interbody lumbar fusion with instramentation at L-5 and S-1. i did great until 5 months after surgery, i started feeling alot of pain, kept getting worse, tried pt, made it worse. i was diagnosed with severe epidural fibrosis of the L-5 and S-1 nerves. i have tried epidural injections and am now on pain managment with narcotics. i am in pain all the time and have to walk with a cane most of the time. when i go shopping, i have to go wherever there are scooters. i cannot pick up or do many things with my 2 year old grandson. i also have a herniated disc pressing on my spinal cord at C-4 and C-5 which caused chronic pain, headaches and my arms to constantly fall asleep. i drop things all the time. i also have just recently been diagnosed with fibro myalgia and am on cymbalta. can't take lyrica, makes me feel drunk. Thank the lord for my husband!
, he is the most understanding, wonderful loving man in the world and i could not get through this without him. there is nothing they can do so i try to deal with this the best i can. i applied for disability one year ago, they denied me two times. i have a lawyer and we filed an appeal 7 months ago. just waiting. before all this happened, i was a regional manager of one of the largest appraisal companies in florida. now i can't sit for more than 15 min, stand for more that 5 and cannot walk very far. there is nothing i can do for work and my husband is doing all he can. the medical bills are killing us. i have great faith in the lord and know this is happening for a reason, i just don't know what it is yet. thanks for listening. i pray for a miricle."
Monday, November 9, 2009
Message from Jon McHann, Cofounder
Jon sent in a message and asked if we would post it for readership:
I have great admiration for Dr. Jones. When I was first diagnosed, her published work was the first thing I ever read on A.A. and I use her work constantly as a resource. I have recomended her work to every single person I have responded to through LWA and privately. OUTSTANDING!!!!!
Life has really slowed down for me. Pain dictates what I do and how fast it gets done. I only go to town now for appointments, and I have days when I cant take very good care of myself. I try to get out and walk with my animals once per day. Most of the time I get out to the barn, sit in the doorway where I have a chair. And hold court with a pail of cracked corn. I have not even been able to get to church for months now.
I am planning a trip to Huntsville, AL. to see my "local" leading neurosurgeon. We will talk about what can be done surgically for long term pain relief. My body is having a real hard time processing medications. So I now live in high pain 24/7. I am open to what he may have to offer, but I am not expecting anything. Deteriorating disease in my Cauda Equina is progressing, and of couse my lumbar AA just above that is constantly agitated due to that deterioration. I have lost all feeling in my pelvic area, and dowm both legs to my knees, then constant pain from my knees down. Any vibration sets off the A.A. symptoms. I spend most of my time sleeping in 2 hour periods all day. Bladder and bowel issues take up a fair bit of time.
Computer time for me is now down to a half hour a day a best. I dont even open alot of mail that contains humor type stuff as I don't want to waste my time, when I could be writting a letter like this one. Karen I am so proud of how you have carried on. The only thing I would like to see is possibly a closer knit membership. But that will come in time as we (LWA) is still young. I am fading fast here Karen, would you be so kind as to post this to F.B. for me and the LWA site. I am writing you personally first! It may be nice to use this as an update for folks as I "dont get out much anymore".
The relationship with God and his son, my saviour keeps me positive and in my trenches doing my battle every day. There is no way I would be here enjoying my animals, a great relationship with my wife and family without Jesus by my side.
God Bless You and all LWA members
Jon McHann
I have great admiration for Dr. Jones. When I was first diagnosed, her published work was the first thing I ever read on A.A. and I use her work constantly as a resource. I have recomended her work to every single person I have responded to through LWA and privately. OUTSTANDING!!!!!
Life has really slowed down for me. Pain dictates what I do and how fast it gets done. I only go to town now for appointments, and I have days when I cant take very good care of myself. I try to get out and walk with my animals once per day. Most of the time I get out to the barn, sit in the doorway where I have a chair. And hold court with a pail of cracked corn. I have not even been able to get to church for months now.
I am planning a trip to Huntsville, AL. to see my "local" leading neurosurgeon. We will talk about what can be done surgically for long term pain relief. My body is having a real hard time processing medications. So I now live in high pain 24/7. I am open to what he may have to offer, but I am not expecting anything. Deteriorating disease in my Cauda Equina is progressing, and of couse my lumbar AA just above that is constantly agitated due to that deterioration. I have lost all feeling in my pelvic area, and dowm both legs to my knees, then constant pain from my knees down. Any vibration sets off the A.A. symptoms. I spend most of my time sleeping in 2 hour periods all day. Bladder and bowel issues take up a fair bit of time.
Computer time for me is now down to a half hour a day a best. I dont even open alot of mail that contains humor type stuff as I don't want to waste my time, when I could be writting a letter like this one. Karen I am so proud of how you have carried on. The only thing I would like to see is possibly a closer knit membership. But that will come in time as we (LWA) is still young. I am fading fast here Karen, would you be so kind as to post this to F.B. for me and the LWA site. I am writing you personally first! It may be nice to use this as an update for folks as I "dont get out much anymore".
The relationship with God and his son, my saviour keeps me positive and in my trenches doing my battle every day. There is no way I would be here enjoying my animals, a great relationship with my wife and family without Jesus by my side.
God Bless You and all LWA members
Jon McHann
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