I am going into my 5th year of having this. I had a back injection that was no injected properly. The pain I experience is like no other. My activities are very limited but, I do try to push through. Suffering g the next day, week, or weeks afterward. My medications are helpfu. I have a wonderful Dr. In Pittsburgh, PA. He understands this condition and is so caring. We work hard on a combination of meds that would at least remove much of my pain along with a pain psychologist that works along with my doctor. Depression has become a huge part of my life. Trying to accept the new lifestyle I have to live.
I am so thankful you have found a support system in your physicians. It is very difficult to find someone that understands this condition. It sounds like you acquired your condition the same way I did. Much Love
Hi Bonita I was diagnosed with arachnoiditis about a year and a half ago. It currently traverses my entire lumbar and maybe further up the spine. Unfortunately, prior to subsequent to that time I’ve been diagnosed with the following spinal maladies: Ankylosing Spondylitis, CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), type 1 modic changes of the spine and finally degenerative disc disease which has led to now nine spinal surgeries. Because of this cornucopia of joy it has become almost impossible to differentiate what malady is causing what symptom. I will typically go to the pain management doctor or my neurosurgeon and say “Doc, help me figure out what is causing such and such”. They will often just shake their head. I’m currently taking four norco per day along with Lyrica, muscle relaxer and Lidocaine patches. Their effects are minimal.
@@bonitabradley8213 Thanks Bonita. It is what it is. Pain is just part of life these days. Toughest part is just the confusion. Hard to find a reasonable treatment when you don’t exactly know the cause. But I get along alright. Take care.
I have a few questions: 1) Were you given lumbar ESI’s for back pain? If so how many? What specialty was the doctor? 2) Was it with Depo-Medrol or Kenalog? 3) How soon did your symptoms change or worsen? 4) Did your injectionist admit to the dura puncture? 5) Do you mind sharing who gave you your Arachnoiditis diagnosis? 6) Is it now stable or progressive? 7) What did you mean that it’s the “CSF that makes the symptoms”? 8) Oh yeah…Was fluoroscopy used? Thanks Bonita for sharing! So sorry about what happened to you, and thank God that you survived to tell and share with others.
1) It was given it for herniated disc pain. Thie was was the first injection. He is a pain specialist and was administering 22 epidurals that day. 2) No idea. 3) The symptoms began as soon as he pulled out the needle from the epidural. I had immedate increasing pressure in my head and I thought it was going to explode. I thought I was having a stroke. 4) He told them to take me on a gurney and put me in a hospital bed and administer Fentanyl. He came in a few minutes later to see if it had helped and it had not. I still thought my head was exploding or I was having a stroke. He told the nurse to give me more Fentanyl. When he came back to check on me, he told me I had a spinal puncture during the procedure and this happens to 1% of people and I would need a bloocpatch. I told him I had to go to work in an hour and he said, "yea, you're not going. No permissions were signed and changes were added in writing to my initial paperwork stating I agreed to a blood patch. He took me back in and put the needle in my back with the blood to patch it. I had a sharp pain like he hit a nerve that went from my back to my lower R foot that was so intense. I was sobbing and begging for him to stop. The nurse was on her knees holding my hands telling me to hold still. He made the puncture sound unusual and did not admit it was his doing. 5) I had a MRI around July 14 stating a herniated disk. I had the injection July 28. My MRI on Aug 11 showed Arachnoiditis. 6) It is progressive. I have been to 6 specialists who say they can only treat symptoms. I have loss of feeling in both legs from the knee down and now starting in my arms. I have involuntary movements, spasms, and cramps. My back will seize up and I have to lift my left leg into the car. 7) The Spinal Flood leak that continued after the blood patch caused dizziness, nausea, confusion, and temporary vision changes throughout the day and I was blind for 20 minutes on Aug 10 when I went to the ER. 8) I assume so but since it was my first one ever, I had no idea what was happening or supposed to happen.
@@bonitabradley8213 OMG!.. sounds like a butcher, not a doctor! Fentanyl was the wrong protocol… believe it or not the proven emergency treatment would have been a massive IV steroid drip of Dexamethasone or immunosuppressant therapy to reduce inflammation… for 10-14 days followed with oral pain meds. He blew it twice! Did you ever file legal action against him? Thanks for responding… : )
Hi Bonita, My PCP and neurologist are poorly educated with AA. I have had to direct them forward at every step. I am a retired emergency department registered nurse. Have you tried gabapentin and if so your thoughts? Yesterday I convinced my doctor to start a taper dose of methylprednisolone. Thoughts on oral steroids if you've taken then? Where do you see hope with AA treatment? I started then stopped Gabapentin because of issues with nausea and concerns for my pancreas and liver. My biggest problem is lack of sleep due to the pain and the electrical feelings. I believe I have had this condition for perhaps decades. It has gotten worse. I had my first steroid injection in my twenties and I'm now 67. Best to you ❤
I am not a Gabapentin fan. I tried it and over time started to have incontinence because it shuts off the sensation s trying to block the pain. Thankfully, I got off of it in time to regain control. I worked for the Department of Aging and every one I assessed on it had incontinence issues. I have never been given steroids.
Diclofenac. It is supposed to be safer than Ibprofen.
Рік тому
@@bonitabradley8213 i uesd ketolorac 20 ml injection bad gastritis since 5 weeks. Did you use diclofenac every day? How is your stomach wirh this? thank you for answer🙏
@ I take 3 Diclofenac 50 mg; up to 6 Tylonal Arthritis a day 650mg, Tizanadine -up to 3 a day 4 mg, and B12, Vit D, Magnesium and Fish Oil.
Рік тому+1
Do you have extreme burning pain in legs and back. Ism only in bed cant walk it hurts extreme no way out I cant find your amazon things the first link. When i open with google browser nothing is shown
@ I still have nights that the involuntary movements keep me from sleeping but I feel the muscle relaxers I was put on have helped the pain or maybe just time.
I am going into my 5th year of having this. I had a back injection that was no injected properly. The pain I experience is like no other. My activities are very limited but, I do try to push through. Suffering g the next day, week, or weeks afterward. My medications are helpfu. I have a wonderful Dr. In Pittsburgh, PA. He understands this condition and is so caring. We work hard on a combination of meds that would at least remove much of my pain along with a pain psychologist that works along with my doctor. Depression has become a huge part of my life. Trying to accept the new lifestyle I have to live.
I am so thankful you have found a support system in your physicians. It is very difficult to find someone that understands this condition. It sounds like you acquired your condition the same way I did. Much Love
It helps if you have a support team.
Absolutely.
I wish l had a support team,, but here in England my Drs don't know what Arachnoiditis is!!😢😮😮
@@lajollaally Trust me, they don't in the US either.
Hi Bonita
I was diagnosed with arachnoiditis about a year and a half ago. It currently traverses my entire lumbar and maybe further up the spine. Unfortunately, prior to subsequent to that time I’ve been diagnosed with the following spinal maladies: Ankylosing Spondylitis, CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), type 1 modic changes of the spine and finally degenerative disc disease which has led to now nine spinal surgeries. Because of this cornucopia of joy it has become almost impossible to differentiate what malady is causing what symptom. I will typically go to the pain management doctor or my neurosurgeon and say “Doc, help me figure out what is causing such and such”. They will often just shake their head. I’m currently taking four norco per day along with Lyrica, muscle relaxer and Lidocaine patches. Their effects are minimal.
And by the way I believe mine started after one of my lumbar surgeries when they apparently punctured the thecal sack during the procedure.
I am so sorry
@@bonitabradley8213 Thanks Bonita. It is what it is. Pain is just part of life these days. Toughest part is just the confusion. Hard to find a reasonable treatment when you don’t exactly know the cause. But I get along alright. Take care.
I have a few questions:
1) Were you given lumbar ESI’s for back pain? If so how many? What specialty was the doctor?
2) Was it with Depo-Medrol or Kenalog?
3) How soon did your symptoms change or worsen?
4) Did your injectionist admit to the dura puncture?
5) Do you mind sharing who gave you your Arachnoiditis diagnosis?
6) Is it now stable or progressive?
7) What did you mean that it’s the “CSF that makes the symptoms”?
8) Oh yeah…Was fluoroscopy used?
Thanks Bonita for sharing! So sorry about what happened to you, and thank God that you survived to tell and share with others.
1) It was given it for herniated disc pain. Thie was was the first injection. He is a pain specialist and was administering 22 epidurals that day.
2) No idea.
3) The symptoms began as soon as he pulled out the needle from the epidural. I had immedate increasing pressure in my head and I thought it was going to explode. I thought I was having a stroke.
4) He told them to take me on a gurney and put me in a hospital bed and administer Fentanyl. He came in a few minutes later to see if it had helped and it had not. I still thought my head was exploding or I was having a stroke. He told the nurse to give me more Fentanyl. When he came back to check on me, he told me I had a spinal puncture during the procedure and this happens to 1% of people and I would need a bloocpatch. I told him I had to go to work in an hour and he said, "yea, you're not going. No permissions were signed and changes were added in writing to my initial paperwork stating I agreed to a blood patch. He took me back in and put the needle in my back with the blood to patch it. I had a sharp pain like he hit a nerve that went from my back to my lower R foot that was so intense. I was sobbing and begging for him to stop. The nurse was on her knees holding my hands telling me to hold still. He made the puncture sound unusual and did not admit it was his doing.
5) I had a MRI around July 14 stating a herniated disk. I had the injection July 28. My MRI on Aug 11 showed Arachnoiditis.
6) It is progressive. I have been to 6 specialists who say they can only treat symptoms. I have loss of feeling in both legs from the knee down and now starting in my arms. I have involuntary movements, spasms, and cramps. My back will seize up and I have to lift my left leg into the car.
7) The Spinal Flood leak that continued after the blood patch caused dizziness, nausea, confusion, and temporary vision changes throughout the day and I was blind for 20 minutes on Aug 10 when I went to the ER.
8) I assume so but since it was my first one ever, I had no idea what was happening or supposed to happen.
@@bonitabradley8213 OMG!.. sounds like a butcher, not a doctor! Fentanyl was the wrong protocol… believe it or not the proven emergency treatment would have been a massive IV steroid drip of Dexamethasone or immunosuppressant therapy to reduce inflammation… for 10-14 days followed with oral pain meds. He blew it twice! Did you ever file legal action against him? Thanks for responding… : )
Hi Bonita,
My PCP and neurologist are poorly educated with AA. I have had to direct them forward at every step. I am a retired emergency department registered nurse. Have you tried gabapentin and if so your thoughts? Yesterday I convinced my doctor to start a taper dose of methylprednisolone. Thoughts on oral steroids if you've taken then? Where do you see hope with AA treatment?
I started then stopped Gabapentin because of issues with nausea and concerns for my pancreas and liver.
My biggest problem is lack of sleep due to the pain and the electrical feelings. I believe I have had this condition for perhaps decades. It has gotten worse. I had my first steroid injection in my twenties and I'm now 67.
Best to you ❤
I am not a Gabapentin fan. I tried it and over time started to have incontinence because it shuts off the sensation s trying to block the pain. Thankfully, I got off of it in time to regain control. I worked for the Department of Aging and every one I assessed on it had incontinence issues. I have never been given steroids.
@@bonitabradley8213 Thank you Bonita.
Fezzy
You said somthing from an antiinflamatory med that you use in other videos. Which one is that?
Diclofenac. It is supposed to be safer than Ibprofen.
@@bonitabradley8213 i uesd ketolorac 20 ml injection bad gastritis since 5 weeks.
Did you use diclofenac every day? How is your stomach wirh this?
thank you for answer🙏
@ I take three pills per day that are 50 MG. I have not had any issues with my stomach.
@@bonitabradley8213 omg! thats too much for me😥 do you have a list of all supp and meds you use?
i use 0,5 dexa every other day but dont reslly help
@ I take 3 Diclofenac 50 mg; up to 6 Tylonal Arthritis a day 650mg, Tizanadine -up to 3 a day 4 mg, and B12, Vit D, Magnesium and Fish Oil.
Do you have extreme burning pain in legs and back. Ism only in bed cant walk it hurts extreme no way out
I cant find your amazon things the first link. When i open with google browser nothing is shown
Yes I do . I corrected the link. Sorry!
Does it have to start in the lumbar spine?
That was the sight of my injection so that is all that I am knowledgable on based on my research.
Can start anywhere in the spine
I would love to have a conversation with you about AA😢
I'm definitely not an expert. I am still learning and everyone's symptoms can be different. depending on where the nerve clusters are.
Do you was ever bedwritteb
No I actually hurt worse in bed for the first year and a half. It’s only been in the last few months that I have not hurt as much laying down.
@@bonitabradley8213 what helped you to better mode?🙏
@ I still have nights that the involuntary movements keep me from sleeping but I feel the muscle relaxers I was put on have helped the pain or maybe just time.
I didn’t understand meaning cairn?