Recommendations for Neurologists and Pain Management Doctors

Posted by cwallen9 @cwallen9, Jan 7 10:49am

Does anyone in the Pennsylvania area (could be surrounding states) have a neurologist and/or pain management practice that they could highly recommend? I have been suffering from severe burning neuropathy pain in my feet, legs, hands, and arms for over 2 years and I haven't been able to find anyone that can help, or at least work with me. My neuropathy was brought on by upper spinal chord damage due to a cervical spinal steroid shot. I live in central Pennsylvania away from any big cities. I have seen neurologists at Johns Hopkins, Cleveland Clinic, Penn State Hershey, but they did not seem to want to be bothered with me. I know many people have had to go from doctor to doctor until they found someone to help them. I am hoping that I can benefit from someone else's experiences.

@cwallen9, Thanks for creating this new discussion. It sounds like you have seen neurologists at several large medical facilities but received no help. Did they give you any reasons or suggestions? Since you mentioned that this was brought on by upper spinal cord damage from a cervical spinal cord steroid injection, did they mention your symptoms were one of the possible risks?

Cervical epidural steroid injections and spinal cord injuries: https://www.thespinejournalonline.com/article/S1529-9430(15)01374-1/pdf

@jenniferhunter may have some suggestions for you. You mentioned pain management. Have you thought or heard about the Mayo Clinic Pain Rehabilitation Center? – https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

REPLY

John, It does seem like a good discussion area because some people say they have not found a good physician, while others seem to have found someone they like and trust. Unfortunately, I am in the former category. The neurologists did not seem to want to discuss the possibility of the shot causing the neuropathy. They classified it as idiopathic and said I should seek pain management help. It would be nice to at least hear some theories on what the shot could have done. All of the pain management places just do steroid injections or can only recommend common drugs such as gabapentin (which did not help).

REPLY

You might already know this, but Neuropathy Commons has a listing of doctors: https://neuropathycommons.org/experts-directory/us hope this helps!

REPLY

No, I didn't. I will look into that. Thanks.

REPLY
@cwallen9

John, It does seem like a good discussion area because some people say they have not found a good physician, while others seem to have found someone they like and trust. Unfortunately, I am in the former category. The neurologists did not seem to want to discuss the possibility of the shot causing the neuropathy. They classified it as idiopathic and said I should seek pain management help. It would be nice to at least hear some theories on what the shot could have done. All of the pain management places just do steroid injections or can only recommend common drugs such as gabapentin (which did not help).

Jump to this post

@cwallen9 I've found that it's the neurologists that just offer gabapentin, Lyrica, Cymbalta, etc, and aren't much help. But Pain Medicine doctors at Mayo go far beyond steroid shots and Gabapentin. If it's possible for you to travel to Minnesota, please take a look at the Pain Medicine docs there.

REPLY

Did you go to Mayo clinic? Did they help you? What other pain control methods do they offer?

REPLY

@cwallen Yes, I've been to the Rochester clinic several times over the years, including having two total shoulder replacements. In 2020 I drove there twice for appointments in Pain Medicine. I suggest you take a look at this page: https://www.mayoclinic.org/departments-centers/pain-medicine/sections/overview/ovc-20450061

REPLY

@cwallen, Here is a search link for success stories shared by Mayo Clinic patients who went through the Pain Rehabilitation Center.
https://sharing.mayoclinic.org/search/?search=pain+rehabilitation+center

REPLY

If you don't mind me asking, what did they do for you in regards to neuropathy pain?

REPLY
@cwallen9

If you don't mind me asking, what did they do for you in regards to neuropathy pain?

Jump to this post

@cwallen9, I'm not sure who you are asking regarding what they did for neuropathy pain. I don't have any pain with my neuropathy so there are no drugs or medications that help with numbness from my neuropathy. If you want to direct your question to a specific member, it's easy, just type their member name like I did yours, then type your question.

REPLY

I have neuropathic pain and numbness down my legs and into my feet, more on the left side. I had neuropathy testing done along with scans on my lower back, and the test came back saying there is little neuropathic damage. The neurosurgeon says the numbness and pain should be relieved by my back fusion, there are nerves being pinched and that is the likely cause. I am very happy there's not lasting damage being done!

REPLY

I suffered for years from SEVERE neuropathy in the groin area, pelvic area and left leg. After years of narcotics (that don’t help that much) and numerous surgeries, the only way I got some relief was from an implanted medication infusion system made by Medtronic. I’m concerned your issue may originate too high on your spinal cord ( the catheter, which is completely implanted, must be attached to your spinal cord above where your pain is and from your post I don’t know there is enough space). Medtronic has a website you can read about it. It haven’t completely removed my pain but without it, my pain was bad enough to cause me to consider some extreme measures. The pump last six years. It is managed by my doctor office that placed it. I have to get refills about every 75 days but that depends on the dosage. Refills are a simple needle into a port in the device under your skin. Not painful or time consuming. I just had my third one put in so I have had mine for about thirteen years. If you are interested, find a good, reputable interventional pain clinic to go to for an evaluation. I go to the one at the University of Kentucky. If you live near a large university with a good hospital system you might try that. For me personally, I am not comfortable with those free standing pain clinics. I’m sure there are some good ones. That’s just my personal preference and I can be sure of the level of care. Questions? You are welcome to email me at palmorejs@aol.com.

REPLY
Please sign in or register to post a reply.