Yes, I had L4-L5 fusion in October "22 the surgeon knicked my dura during surgery and created AA affecting L5-S1 AA, right leg hamstring down to calf and CRPS now in my foot. I've lost the ability to raise up on my tip toes. I have lots of burning back pain, neuropathy pain, intense muscle cramps, hip pain from my abnormal gait. I also am hot the majority of the time and have developed a tremor. My feet hurt all the time and ridiculous nerve pain. I've done PT for 6 months and just Started LDN and I'm refusing Spinal cord stimulator.
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
I am new to this site. I keep looking for answers and comments from a Mayo Clinic expert on all the questions. I only see comments from people suffering. Am I missing something or is this just a support chat room????
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
This is a support group. Maybe you can look at the "About Connect: Who, what and why" support group to find out where to ask for specific referral information.
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
I have Arachnoiditis. I got it 2 yrs ago from a botched epidural. There really are no drs that treat this , it’s not a common disease but becoming more so. I wouldn’t let anyone cut my spine if I were you. Just not a good idea if you indeed do have AA
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
I am new to this site. I keep looking for answers and comments from a Mayo Clinic expert on all the questions. I only see comments from people suffering. Am I missing something or is this just a support chat room????
@ttzkjmm Welcome to Connect. Mayo physicians do not monitor this site. It is a patient forum and you can learn a lot from patients. If you use the search at the top of the screen, you will find discussions where your search word is mentioned and it will show the context. That is a great way to find other members talking about similar experiences. This is considered a support group for many conditions and no one can give medical advice, but we can share experience and resources as well as doctors that treat various conditions.
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
My journey started four and a half years ago. I initially had chemo induced neuropathy and the pain/numbness/tingling progressed to just above the ankles in both legs and was just worsening. My oncologist sent me to a neurologist and he recommended a lumbar puncture to test for demyelination. That’s when the problems really started. 2 or 3 days post LP, my ears started ringing (and have never quit) along with a mild headache. This was in January 2019. I’ve have degenerative disc disease for many years. Since the initial LP my pain/numbness/tingling/cramping/etc… have progressed up through my calves, hamstrings/quads and glutes at a rapid pace. With the DDD, I have back pain. The leg issues and back pain were separate problems until early in 2023 when they both became one. That’s when the (I can’t get my bladder completely empty and not knowing when it’s time to take a dump) problem began. Between my PCP and myself, the research started then. During the progression I visited a pain clinic several times. 4 nerve blocks, 2 ablations and an epidural steroid injection only temporarily helped and actually made things worse. Our research revealed a probable arachnoiditis diagnosis. Most articles we read looked as if they interviewed me for the symptoms. Fast forward a few months and my doctor wants to do major lumbar surgery. Sadly, I live in a rural area and when I mention arachnoiditis they just laugh and say you’re on Google too much. I’m scheduled for major lumbar surgery before the holidays and I’m very concerned I’m making the wrong decision. If anyone has any information to share, I’d be grateful. I’m sorry the post turned into a novel.
I’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
Connect
Connect
Like
Helpful
Hug
Yes, I had L4-L5 fusion in October "22 the surgeon knicked my dura during surgery and created AA affecting L5-S1 AA, right leg hamstring down to calf and CRPS now in my foot. I've lost the ability to raise up on my tip toes. I have lots of burning back pain, neuropathy pain, intense muscle cramps, hip pain from my abnormal gait. I also am hot the majority of the time and have developed a tremor. My feet hurt all the time and ridiculous nerve pain. I've done PT for 6 months and just Started LDN and I'm refusing Spinal cord stimulator.
-
Like -
Helpful -
Hug
1 ReactionI’m new to this support group so my apologies if I’m not following the correct format. I’ve suffered progressively for 4 years with what was initially diagnosed as chemo induced neuropathy. After many lumbar punctures, spinal blocks and epidural injections I’m worse than ever. Recent research reveals I may have adhesive arachnoiditis. I’m presently scheduled for major lumbar surgery and I’m concerned it will do more harm than good. Does anyone know of an AA specialist that would do a telemedicine consult?
-
Like -
Helpful -
Hug
1 ReactionI am new to this site. I keep looking for answers and comments from a Mayo Clinic expert on all the questions. I only see comments from people suffering. Am I missing something or is this just a support chat room????
This is a support group. Maybe you can look at the "About Connect: Who, what and why" support group to find out where to ask for specific referral information.
-
Like -
Helpful -
Hug
1 ReactionI have Arachnoiditis. I got it 2 yrs ago from a botched epidural. There really are no drs that treat this , it’s not a common disease but becoming more so. I wouldn’t let anyone cut my spine if I were you. Just not a good idea if you indeed do have AA
-
Like -
Helpful -
Hug
4 ReactionsThank you for taking time to reply.
@ttzkjmm Welcome to Connect. Mayo physicians do not monitor this site. It is a patient forum and you can learn a lot from patients. If you use the search at the top of the screen, you will find discussions where your search word is mentioned and it will show the context. That is a great way to find other members talking about similar experiences. This is considered a support group for many conditions and no one can give medical advice, but we can share experience and resources as well as doctors that treat various conditions.
-
Like -
Helpful -
Hug
1 Reaction@esouppain Welcome to Connect. Here is a discussion about Arachnoiditis where you can connect with other members.
Spine Health - Anyone been diagnosed with arachnoiditis after spine surgery?
https://connect.mayoclinic.org/discussion/arachnoiditis-2/
-
Like -
Helpful -
Hug
2 ReactionsMy journey started four and a half years ago. I initially had chemo induced neuropathy and the pain/numbness/tingling progressed to just above the ankles in both legs and was just worsening. My oncologist sent me to a neurologist and he recommended a lumbar puncture to test for demyelination. That’s when the problems really started. 2 or 3 days post LP, my ears started ringing (and have never quit) along with a mild headache. This was in January 2019. I’ve have degenerative disc disease for many years. Since the initial LP my pain/numbness/tingling/cramping/etc… have progressed up through my calves, hamstrings/quads and glutes at a rapid pace. With the DDD, I have back pain. The leg issues and back pain were separate problems until early in 2023 when they both became one. That’s when the (I can’t get my bladder completely empty and not knowing when it’s time to take a dump) problem began. Between my PCP and myself, the research started then. During the progression I visited a pain clinic several times. 4 nerve blocks, 2 ablations and an epidural steroid injection only temporarily helped and actually made things worse. Our research revealed a probable arachnoiditis diagnosis. Most articles we read looked as if they interviewed me for the symptoms. Fast forward a few months and my doctor wants to do major lumbar surgery. Sadly, I live in a rural area and when I mention arachnoiditis they just laugh and say you’re on Google too much. I’m scheduled for major lumbar surgery before the holidays and I’m very concerned I’m making the wrong decision. If anyone has any information to share, I’d be grateful. I’m sorry the post turned into a novel.
Hello @esouppain and welcome to Mayo Clinic Connect. I noticed several members have joined you to respond.
You will notice I have moved your post into an existing discussion on this topic that @jenniferhunter also mentioned, which you can now find here:
- Anyone been diagnosed with arachnoiditis after spine surgery?: https://connect.mayoclinic.org/discussion/arachnoiditis-2/
Is there a reason you are keen on a telemedicine consult over an in person?
-
Like -
Helpful -
Hug
1 Reaction