Please welcome Tom Mostello of Indiana. Tom welcomes your email and his email address is tmostello@msn.com.
Tom was diagnosed with arachnoiditis/lower back April 2010.
The prior post has the wrong email address for Tom.
Thanks.
Friday, April 30, 2010
Wednesday, April 28, 2010
Please welcome Cara Crump of Missouri
Please welcome Cara Crump of Missouri (she is moving to Montana in November 2010). Cara would love to hear from you. Her email address is ilovegummmybears@yahoo.com.
Cara says:
"I am cara im 27 years old. i had epidural steroid injections in februdary, and when they didnt help, i underwent arthoscopic micro discectomy (AMD), on 4-7-10. since a week and a half after my surgery, i have never felt so much pain in my life. it feels like someone is trying to saw of my leg, or stabbing me with a knife. i have spasms so bad that i scream and cry. i have not slept hardly at all since the pain started ( its been 10 days now) and when i do get to sleep i wake up crying. no medicine that they prscribe can help my pain. i am on oxycontin and it doesnt even take it a notch down, only makes me tired.im on meds for spasms inflammation and antisezure meds, but nothing helps. i just had my mri today and met with my doctor, and he said i had arachnoiditis. when i was in his office i didnt ask alot about it because the name sounded funny, i thought is he talking about a spider? he told me that all the nerves in my back are completely inflammed and appear to have been so for quite some time. he is confused because there is no rehernitaion after he removed my disc and my muscle strength isnt lacking. he doesnt know what happenend or why im in so much pain just that i have all this inflammation. he then put me on a steroid pack to help with the inflammation to try to break it down. he is hopeful that he can get my pain under control, but i am just scared. i read everything about it when i got home and i am so sad. how can i deal with this for the rest of my life? after 10 days i feel like i cant take it anymore, and to read this im just so confused and hurt and scared. my wedding is in june and i can barely get out of bed. i want to be well enough to experience my wedding. can someone help offer support, things that have helped them through the pain? i dont know what to do and i just need someone to help me
thanks
cara crump"
Cara says:
"I am cara im 27 years old. i had epidural steroid injections in februdary, and when they didnt help, i underwent arthoscopic micro discectomy (AMD), on 4-7-10. since a week and a half after my surgery, i have never felt so much pain in my life. it feels like someone is trying to saw of my leg, or stabbing me with a knife. i have spasms so bad that i scream and cry. i have not slept hardly at all since the pain started ( its been 10 days now) and when i do get to sleep i wake up crying. no medicine that they prscribe can help my pain. i am on oxycontin and it doesnt even take it a notch down, only makes me tired.im on meds for spasms inflammation and antisezure meds, but nothing helps. i just had my mri today and met with my doctor, and he said i had arachnoiditis. when i was in his office i didnt ask alot about it because the name sounded funny, i thought is he talking about a spider? he told me that all the nerves in my back are completely inflammed and appear to have been so for quite some time. he is confused because there is no rehernitaion after he removed my disc and my muscle strength isnt lacking. he doesnt know what happenend or why im in so much pain just that i have all this inflammation. he then put me on a steroid pack to help with the inflammation to try to break it down. he is hopeful that he can get my pain under control, but i am just scared. i read everything about it when i got home and i am so sad. how can i deal with this for the rest of my life? after 10 days i feel like i cant take it anymore, and to read this im just so confused and hurt and scared. my wedding is in june and i can barely get out of bed. i want to be well enough to experience my wedding. can someone help offer support, things that have helped them through the pain? i dont know what to do and i just need someone to help me
thanks
cara crump"
Saturday, April 24, 2010
Please welcome Maria "Lu" Figueiredo
Please welome Maria "Lu" Figueiredo of New York. Lu welcomes your contact and her email address is dorcostas@yahoo.com.
Lu says:
"HI, I am so ecstatic to find another site that has more info and support for Arachnoiditis sufferers like me. This is such an awful diagnosis to have to deal with and when there is so much ignorance and negligence on behalf of the medical community around where I live, it is so frustrating. I was first diagnosed back in 9-05 after having endured 5 epidurals pre-op, actually becoming semiparalegic for hours on the 5th one, and spinal fusion surgery which I lost 1 week out of my life due to a serious infection post-op. I was once a nurse who so whole heartedly believed in the medical community and its services but after being diagnosed my whole perception changed, when I became a victim to it. After my surgery, and prior to my diagnosis, I was still having so much pain, my surgeon after a while began losing belief in me and my complaints, he found it impossible that I could be in so much pain still. He even went as far, as refusing to give me any pain meds one night while I was admitted to the the hospital for pain, all I could do was cry and scream all night with agony!! The next day, considering my pain was still there, and the other patients were complaining and I has called every supervisor possible, finally an MRI was done and thats how I was diagnosed. the surgeon non-chalantly shoved it off as just a inflammatory response and practically tried to push the electrical stim unit on me, but I refused, and declined any further medical intervention from him. My sister and I quickly tried to do as much research as we could on the diagnosis, but of course at the time, there was limited amount, and whatever we did find surely hit home and helped explain all the symptoms I was feeling but also put great fear into me in regards to what was still yet to come. At that time pain was the main factor, no other bodily function or symptom was noted. Today I have deteriorated to a certain degree. My bowel and bladder have been affected, those functions have been made almost impossible. Practically every organ in my pelvis has also been affected, needed to have a hysterectomy(which was the worst thing to go thru because I so wanted to have another child), my kidneys are slow as molasses, and my adrenals glands are also slowing down making my sleep/awake cycle eradic. Besides that I am now in debt to my dentist due to all the constant dental work I need to get due to horrible effects of the pain meds on my mouth. I have endured years of agony but my strong faith and supportive family keeps me going day by day. I no longer live life for myself, I now live life thru my daughter's. Unfortunately they have been very deprived because of my limitations but they have taken it like champions, one is even telling me she is going to be a doctor when she grows up just to find a cure for me, even though she is only 7, her intentions are still adorable. The fact that she even has to say that saddens me, because at her age, even she understands that there is not enough help or info regarding this disease. Sure my pain doctor gives me pills to help some of the pain, the dose gets higher each time, when will it stop? how much can my body handle? I am too young to be the rest of my life on such drugs. I want a life, I am sick and tired of being Sick and Tired. Every day I am fearing a new thing to happen to me. I want to be able to not to have to fear this and think about what positive things will happen, what good will come, not bad. Does anyone else think this way?? I guess I am looking or a miracle to happen in regards to this disease, hoping they discover a treatment or cure to this, I feel more notice needs to be brought to this disease for it ever getting a chance to be recognized by the meducal community. Because when it does, thats when I believe we will get the proper care we deserve... Would love to hear any advise anyone has.....Love Lu
Lu says:
"HI, I am so ecstatic to find another site that has more info and support for Arachnoiditis sufferers like me. This is such an awful diagnosis to have to deal with and when there is so much ignorance and negligence on behalf of the medical community around where I live, it is so frustrating. I was first diagnosed back in 9-05 after having endured 5 epidurals pre-op, actually becoming semiparalegic for hours on the 5th one, and spinal fusion surgery which I lost 1 week out of my life due to a serious infection post-op. I was once a nurse who so whole heartedly believed in the medical community and its services but after being diagnosed my whole perception changed, when I became a victim to it. After my surgery, and prior to my diagnosis, I was still having so much pain, my surgeon after a while began losing belief in me and my complaints, he found it impossible that I could be in so much pain still. He even went as far, as refusing to give me any pain meds one night while I was admitted to the the hospital for pain, all I could do was cry and scream all night with agony!! The next day, considering my pain was still there, and the other patients were complaining and I has called every supervisor possible, finally an MRI was done and thats how I was diagnosed. the surgeon non-chalantly shoved it off as just a inflammatory response and practically tried to push the electrical stim unit on me, but I refused, and declined any further medical intervention from him. My sister and I quickly tried to do as much research as we could on the diagnosis, but of course at the time, there was limited amount, and whatever we did find surely hit home and helped explain all the symptoms I was feeling but also put great fear into me in regards to what was still yet to come. At that time pain was the main factor, no other bodily function or symptom was noted. Today I have deteriorated to a certain degree. My bowel and bladder have been affected, those functions have been made almost impossible. Practically every organ in my pelvis has also been affected, needed to have a hysterectomy(which was the worst thing to go thru because I so wanted to have another child), my kidneys are slow as molasses, and my adrenals glands are also slowing down making my sleep/awake cycle eradic. Besides that I am now in debt to my dentist due to all the constant dental work I need to get due to horrible effects of the pain meds on my mouth. I have endured years of agony but my strong faith and supportive family keeps me going day by day. I no longer live life for myself, I now live life thru my daughter's. Unfortunately they have been very deprived because of my limitations but they have taken it like champions, one is even telling me she is going to be a doctor when she grows up just to find a cure for me, even though she is only 7, her intentions are still adorable. The fact that she even has to say that saddens me, because at her age, even she understands that there is not enough help or info regarding this disease. Sure my pain doctor gives me pills to help some of the pain, the dose gets higher each time, when will it stop? how much can my body handle? I am too young to be the rest of my life on such drugs. I want a life, I am sick and tired of being Sick and Tired. Every day I am fearing a new thing to happen to me. I want to be able to not to have to fear this and think about what positive things will happen, what good will come, not bad. Does anyone else think this way?? I guess I am looking or a miracle to happen in regards to this disease, hoping they discover a treatment or cure to this, I feel more notice needs to be brought to this disease for it ever getting a chance to be recognized by the meducal community. Because when it does, thats when I believe we will get the proper care we deserve... Would love to hear any advise anyone has.....Love Lu
Welcome to Tom Mostello
Please welcome Tom Mostello of Indiana. Tom welcomes your email and his email address is tmostello1@msn.com.
Tom was diagnosed with arachnoiditis/lower back April 2010.
Tom was diagnosed with arachnoiditis/lower back April 2010.
Welome Barbara Provis
Please welcome Barbara Provis of the UK. Her email address is b.provis@ntlworld.com and she welcomes your email.
Barbara says:
"Let me intoduce myself (cut & paste from another site) - my name is Barbara Provis aged 67 years - retired nurse, live in Surrey in the south of England. I am married, have one son and two grandaughters. I have had Adhesive Arachnoiditis since 1978 - so 32 years. Symptoms have gradually increased over the years. I wasn't given any information to begin with so had no expectations one way or another; when I was diagnosed in 1990 I was told that I would probably be in a wheelchair in 10 years time.
Pleased to report that the only time I need a wheelchair is at airports when doing transatlantic flights.
I also have two non malignant tumors in my spine at C12 and S1; collapsed C11 vertebra and osteo-arthritis of spine, hips, feet and hands.
I do use a walking stick/cane or elbow crutch now.
Like most people with AA. I have followed the usual route; several epidurals of Depomedrone, myelogram, laminectomy, spinal fusion, plus hundreds of sessions of traction, physiotherapy, Pain Clinics, plaster jacket, first 6 facet joint injections with piriformous injections in 1997; 2001 had more facet joint & piriformouse injections, last session in November 2004 I had 3 Injections - Bilateral Sacro-iliac Joint injection with steroid (Depomedrone) & local anaesthetic. One injection of Botox to right Piriformous Muscle, followed a week later with a steroid (Depomedrone) to right ileo facet joint with no benefit whatsoever.
The first two facet joint injections were quite good with considerable pain relief and I was very grateful for the reduction of pain, however the last session in 2004 made the pain level go through the roof and has never really calmed down. I have since wized up about Depomedrone & refuse every time it is suggested now.
At present I take Tramadol, Paracetamol, Amitriptyline, Phenytoin, Nitrazepam, Lidocaine Patches & since my osteo arthritic hip became acute in September, Butrans Patches.
Acupuncture, which I have been very lucky to receive for the last 11 years, gives a little relief but the clinic has closed down - I'm very disappointed.
Now 8 weeks into recovering from a hip replacement; down to one crutch now and recommenced driving the car again!
I have discontinued the Butrans Patches and going through withdrawal symptoms, especially at night.
I like to keep as busy as possible during the day and am very involved with the local community - it's my way of distraction therapy.
Barbara says:
"Let me intoduce myself (cut & paste from another site) - my name is Barbara Provis aged 67 years - retired nurse, live in Surrey in the south of England. I am married, have one son and two grandaughters. I have had Adhesive Arachnoiditis since 1978 - so 32 years. Symptoms have gradually increased over the years. I wasn't given any information to begin with so had no expectations one way or another; when I was diagnosed in 1990 I was told that I would probably be in a wheelchair in 10 years time.
Pleased to report that the only time I need a wheelchair is at airports when doing transatlantic flights.
I also have two non malignant tumors in my spine at C12 and S1; collapsed C11 vertebra and osteo-arthritis of spine, hips, feet and hands.
I do use a walking stick/cane or elbow crutch now.
Like most people with AA. I have followed the usual route; several epidurals of Depomedrone, myelogram, laminectomy, spinal fusion, plus hundreds of sessions of traction, physiotherapy, Pain Clinics, plaster jacket, first 6 facet joint injections with piriformous injections in 1997; 2001 had more facet joint & piriformouse injections, last session in November 2004 I had 3 Injections - Bilateral Sacro-iliac Joint injection with steroid (Depomedrone) & local anaesthetic. One injection of Botox to right Piriformous Muscle, followed a week later with a steroid (Depomedrone) to right ileo facet joint with no benefit whatsoever.
The first two facet joint injections were quite good with considerable pain relief and I was very grateful for the reduction of pain, however the last session in 2004 made the pain level go through the roof and has never really calmed down. I have since wized up about Depomedrone & refuse every time it is suggested now.
At present I take Tramadol, Paracetamol, Amitriptyline, Phenytoin, Nitrazepam, Lidocaine Patches & since my osteo arthritic hip became acute in September, Butrans Patches.
Acupuncture, which I have been very lucky to receive for the last 11 years, gives a little relief but the clinic has closed down - I'm very disappointed.
Now 8 weeks into recovering from a hip replacement; down to one crutch now and recommenced driving the car again!
I have discontinued the Butrans Patches and going through withdrawal symptoms, especially at night.
I like to keep as busy as possible during the day and am very involved with the local community - it's my way of distraction therapy.
Please welcome Mark McLaughlin of Pennsylvania. Mark's email address is radagahst@aol.com and he welcomes your email.
Mark says:
"I have had an interthecal pump for the past 11 years. I am getting about 18 mg/day of dilaudid through the pump also a local anesthetic and an anti-hypertensive. For about a year and a half I have been experiencing bouts of intense burning in my legs that is not helped at all with medication. My legs also feel like they are vibrating all the time. My pain doc does not want to go any higher with the medication in my pump. He has been given me a couple of epidural injections over the past 8 months. The first one helped for a while, the second less so. I am concerned that there isn't much more that can be done for me and the pain will become completely unmanagable."
Mark says:
"I have had an interthecal pump for the past 11 years. I am getting about 18 mg/day of dilaudid through the pump also a local anesthetic and an anti-hypertensive. For about a year and a half I have been experiencing bouts of intense burning in my legs that is not helped at all with medication. My legs also feel like they are vibrating all the time. My pain doc does not want to go any higher with the medication in my pump. He has been given me a couple of epidural injections over the past 8 months. The first one helped for a while, the second less so. I am concerned that there isn't much more that can be done for me and the pain will become completely unmanagable."
Welcome to Dawn Fee
Please welcome Dawn Fee to our Group. Dawn is from Ireland and welcomes your email at dawnfee@eircom.net.
Welome Victoria Johnson
Please welome Victoria Johnson of California. Victoria's email address is husingrehab@sbcglobal.net and she welcomes your email.
Victoria says:
"I was just diagnosed with arachnoiditis yesterday. I thought the surgeon would do surgery for scar tissue removal and he said that surgery would only make me worse. Bummer! It's hard to have to think of living with this much pain the rest of my life. Glad I found this site."
Victoria says:
"I was just diagnosed with arachnoiditis yesterday. I thought the surgeon would do surgery for scar tissue removal and he said that surgery would only make me worse. Bummer! It's hard to have to think of living with this much pain the rest of my life. Glad I found this site."
Please welcome Mike Perry
Please welcome Mike Perry of California. You may email him at baja.mike.perry@gmail.com.
Mike says:
"I broke my back in 1974 in a parachute accident while on active duty with the Air Force. The back healed and with only occasional problems from time to time, I led a very active life (fighter pilot, commercial airline pilot, actor, business owner, financial planner).
Then, one day a little over two years ago I woke up with severe pain in m lower back and it never went away. My orthopedic surgeon did MRIs of my back and found degenerative discs, spinal stenosis, and arthritis. They diagnosed the pain as pinched nerves from the compressed vertebrae and wanted to do Epidural injections for the pain. I opted not to have epidurals, but instead went with opiod drugs. My pain mgt Dr. found scar tissue in the arachnoid area and rediagnosed me with Arachnoiditis.
My symptoms include chronic severe burning and sharp pain in my lower back shooting down into my buttocks, and sometimes down my legs. The pain is worst when I sit and limit my standing to a very short period of time. I end up spending an average of 18 hrs a day laying down. I have Headaches with blurring of vision. Extreme weakness, often staying in bed for days. Night and Day sweating for no reason. I often wake up soaked in sweat. I have a sharp pain in my lower right abdomen that has bothered me on and off again from time to time. I have problems with sexual dysfunction, constipation and trouble urinating. A veritable nightmare.
I had never heard of this disease until my Dr. diagnosed me with it on Tuesday (2 days ago). I have been dealing with this for over 2 years and it's not surprising to me that it's incurable."
Mike says:
"I broke my back in 1974 in a parachute accident while on active duty with the Air Force. The back healed and with only occasional problems from time to time, I led a very active life (fighter pilot, commercial airline pilot, actor, business owner, financial planner).
Then, one day a little over two years ago I woke up with severe pain in m lower back and it never went away. My orthopedic surgeon did MRIs of my back and found degenerative discs, spinal stenosis, and arthritis. They diagnosed the pain as pinched nerves from the compressed vertebrae and wanted to do Epidural injections for the pain. I opted not to have epidurals, but instead went with opiod drugs. My pain mgt Dr. found scar tissue in the arachnoid area and rediagnosed me with Arachnoiditis.
My symptoms include chronic severe burning and sharp pain in my lower back shooting down into my buttocks, and sometimes down my legs. The pain is worst when I sit and limit my standing to a very short period of time. I end up spending an average of 18 hrs a day laying down. I have Headaches with blurring of vision. Extreme weakness, often staying in bed for days. Night and Day sweating for no reason. I often wake up soaked in sweat. I have a sharp pain in my lower right abdomen that has bothered me on and off again from time to time. I have problems with sexual dysfunction, constipation and trouble urinating. A veritable nightmare.
I had never heard of this disease until my Dr. diagnosed me with it on Tuesday (2 days ago). I have been dealing with this for over 2 years and it's not surprising to me that it's incurable."
Welome Desiree of New York
Please welcome Desiree of New York. She welcomes your email. Her email address is dford711@yahoo.com.
Desiree says:
"I had 2 bad ephidurals the second one causing nerve damage in my right leg. I am having a hard time accepting the fact that I have to live like this. I just started the Nucynta and I really like it with flexerall or tramadole. My system is going through mad changes and lately I feel like I'm in a bubble. Sometimes I feel like I am taking too much meds but don't want no part of the pain. I feel like my life is not going to be too long if I have to continue living like this. I don't like going outside because I feel handicapped and I am too young. Don't know how to function any more."
Desiree says:
"I had 2 bad ephidurals the second one causing nerve damage in my right leg. I am having a hard time accepting the fact that I have to live like this. I just started the Nucynta and I really like it with flexerall or tramadole. My system is going through mad changes and lately I feel like I'm in a bubble. Sometimes I feel like I am taking too much meds but don't want no part of the pain. I feel like my life is not going to be too long if I have to continue living like this. I don't like going outside because I feel handicapped and I am too young. Don't know how to function any more."
Subscribe to:
Posts (Atom)