Living with Neuropathy - Welcome to the group

@dancemurphy
Hi Mary!
Welcome to our group! I am in no way in the medical field, so take my advice from where it comes.
First off, don't jump to any conclusions. I assume when you say you had neck surgery, you mean surgery on your cervical spine????

I had cervical surgery one year ago. I admit I did not have any of the symptoms you are explaining. That being said, sometimes after surgery there can be some swelling from the procedure. This can cause the nerves to be irritated and result in temporary neuropathy. As far as balance and memory loss, have you read the insert that came with the Neurotin? Can it be one of the side effects?

In any case, I strongly urge you to call your surgeon and if a phone conference will not work, then insist on an appointment. If you are not happy with the answers, make an appointment with your PCP or neurologist. In the meanwhile, baby yourself as far as your neck is concerned. Do not bend or stretch, do not twist or make sudden movements with your head. Let your surgery heal. The outside can look fine, but it takes months for the internal healing to be 100% healed.

So, take a deep breath and do not panic.

Ronnie (GRANDMAr)

@dancermurphy They symptoms you describe are definitely side affects from the Neurontin. Did you give the higher dose that helps you time to "sink in"? I've found that you need to give some things a few months before some of the side affects go away. Your body needs some time to adjust & process the medication. I have taken Neurontin and now take Lyrica and the side affects are the same.

@dancermurphy I find nelurontin/gabapentin really scary stuff. It may help with pain--although I haven't found that--but the side effects are frightening.

@qball2019 Good morning and thank you for the reminder that we need to give medications, treatments, and recommended lifestyle adjustments some time to “settle in”. Practicing mindfulness can help with the “getting to know you” process, e.g. practicing yoga regularly to reap the benefit, finding a creative hobby, giving our bodies time to absorb and adjust, and especially supporting our medical providers and caregivers as they search for answers that will help us have a better quality of life.

I’m just beginning to suffer with constant burning
in my feet. Will be seeing my family practice doc on Friday and then I imagine a referral to a neurologist. Gabapenpin has already been suggested. Can you share what side effects you have experienced?
Thank you so much!
Victoria

Hello again. I forgot to mention that I tried to be seen at Mayo in Rochester, but they would not give me an appointment.

@dancermurphy Goid morning. It might help to tell you that I also experienced those symptoms after starting neurontin. My neurologist modified the time and dosage. The symptoms of grasping for words, feeling fuzzy, and unbalanced, stopped as my body adjusted to the medication and dosage time. Maybe time and an adjustment will help soothe your fears. Be safe and protected today. Chris

@vilee I got that run around with Mayo Rochester Neurology last year, and go the impression that the department is overwhelmed and reluctant to take on patients who they might not be able to help. I worked around by getting another of my Mayo Rochester docs to push for the appointment, which I then got. But I'm still disappointed. The current Mayo tv commercial says, "When it's time to find answers" but I don't feel that they're really working with me to find answers. My symptoms keep getting worse, taking over my whole body, and I want to know what I'm looking forward to so that I can plan how and where to live my life.

@vilee, Good morning. I have not been accepted for treatment at Mayo. The team felt that I am already being treated appropriately and there is nothing more that can be done right now. @johnbishop has written about his experience and the results of his evaluation at Mayo. That might be helpful for you to know. John, can you explain. Be safe and have happiness today. Chris

I suggest being more persistent in getting an appointment at Rochester. I know it is difficult and I was refused several times. Please consider not going directly to a neurologist but General admissions It was discovered that my issues are caused by nerve clumping not Idiopathic (through a good MRI), and can be treated. Not sure if these treatments will be successful or not but it is important to get a good diagnosis and find out exactly what you have. This gives you the opportunity to fight back and do what you can to improve your condition. Good luck and god bless.