Umbilical Stem Cells

[Newch]

New here and due to horrific burning neuropathic pain that developed post surgery (which has progessed for 3 yrs) and no relief with myriad of meds/shots looking into umbilical stem cell injections in Panama, not approved in US. No pain pre surgery but severe cord compression and myelomacia significant in cervical spine. Has anyone tried this? Scwhann cells look promising but still a lot of ongoing research thru the miami project. What are most people doing?

[Hidden]

Hi there Newch

I'm so sorry to hear of your difficulties with neuropathic pain & your desire to try anything to get rid of it, especially when you were pain free before - relatively speaking.

Some of the pain you will have experienced will be long compressed nerves "waking up" if you will as they become resupplied with oxygen & nutrients. But one would have expected it to settle down by now.

As far as I am aware from talking to folk on the Myelopathy Support Website on FaceBook facebook.com/groups/myelopa... (come join us if you haven't already) no-one has ever tried this. There is talk of it, but it is not well trialled as yet & so we cannot be certain of clinical outcomes.

You mention that you are 3 years post op now - have you had a neurosurgical review recently - is your hardware fused & intact? Is there any adjacent segment disease going on which may explain your symptoms. Or perhaps osteophyte development which may be impinging on nerve roots to cause your symptoms.

In the first instance, I would be going back to your doctors to ask for a review if you haven't already. at 3 years it would not be unreasonable to request another mri scan.

What sort of meds have you been on? I find Duloxetine very helpful for radiculopathy pain in my arms & baclofen for muscle stiffness/spasticity. Obviously, gabapentin & pregabalin are also available. The problem is that everyone is different & dosages need to be tailored according to you & your body.

Other folk use analgesic patches, TENS machines, hot & cold compresses, meditation, relaxation & distraction therapies, topical heat ointments e.g. Tiger balm in various combinations to find what works for them.

I totally get where you are coming from - constant pain really does grind you down. ANd it can be stressful finding ways to cope with it.

I hope you can get some answers soon.

KInd regards

Shirley

[Newch in reply to Hidden]

Thanks but have been all over for answers and have ruled everything out. Initially, we were told that the nerves needed to settle down. Went to a very reputable surgeon and hospital and have had tried everything and seen tons of drs. Infinite amount of meds have been tried as well. Now just trying to look into the stem cells and have only been able to confirm improvement in MS patients which is slightly similar in that they develop lesions on the spine that cause similar horrific pain and stem cells are being shown to increase the Schwann cells which repair the mylein sheath which I am hoping may be a way to cure the bruise inside the spinal cord and perhaps settle down the nerve pain from the myelomalacia. Thank you for trying but focusing the research on this area now and do believe it will ultimately be the cure but the question is how soon...

[Hidden in reply to Newch]

The other option is a spinal cord stimulator. A couple of folk in the FB group have them & so far have found them helpful.

Just a thought

Shirley