Hi pod people
 

Here is the list of this compounded med. It works pretty good too....
Keta/Clon/gaba/imp/meffen/tetra (1) 10%.

Just show this to your doctor and he will know what this is. It does cut the pain. It was not covered by my insurance.:(ginnie

Chaucerfan

Curious to know , did you have prior surgery that caused the Neuroma or did this just develop..... I really think my situation could be a Neuroma forming as a result of 3 surgeries I had and all the complications that have occurred since.

I have done so much research that sometimes scar tissue/neuroma formation can occur when nerves heal...I really believe mine did this at the incision site (there is alot of sensitivity/pain) since I had 3 surgeries (10 days apart), had MRSA in Hospital and then developed MONO 2 months post surgery......my whole system got messed up?!!

Will see what the Neuro has to say .....as far as the surgeon and any other doctor I have seen, they have either said there is no connection or just don't want to go against the surgeon, etc. I don't have a medical degree however I have a lifetime knowing myself and I see that it certainly could have a connection.....never had any of these "post op issues" prior to surgeries.

Look forward to anything that you find out in your situation

I guess our situations ARE different because my benign tumor came first -- for unknown reasons; then the incision to remove it, which went in between my ribs, damaged a DIFFERENT nerve and caused the neuropathy.

You certainly have had more than one human being's share of problems -- three surgeries in a short time, then MRSA, then mono! Yikes!

But I am like you in wondering how these things can be totally unrelated. I mean, the nerve tumor was basically overproduction of myelin. And now this mysteriously caused neuropathy seems to be (in part) demyelinating. I have an appointment in early October with a PN specialist at the same hospital as the thoracic surgeon who removed the nerve tumor. Maybe they could put their heads together? And maybe another user of this board will have had a similar experience. Have you considered starting a new thread that explicitly refers to the surgery / neuroma connection?

Hi Ginnie:
Thank you for the information. I will show it to the Dr.and see if he gives me a prescription.

I'm guessing ketamine, clonidine, gabapentin, and mefenamic acid, but the imp & tetra have me stumped.

Doc

Thanks so much for your response & Yes that sounds like something I may do.

Like you, I believe that there likely was damage to Other nerves especially with the potential of encountering nerves 3 times that are so sensitive when they are stretched, etc.

In fact when they went in the 3rd time they prepared me for having a Thoracotomy as I had to have the 2nd & 3rd surgeries for "Chylous Lymph Leaks" and when the 2nd surgery did not resolve the problem they thought that the leak could be in the Thoracic Duct however, the leak was ligated thru the same surgical site previously done. I understand there is greater chance for nerve damage and more pain because of the whole incision/rib access when a Thoracotomy is done.

I had phrenic nerve damage with elevated diaphragm which did not resolve till 20 months post op, Long thoracic nerve damage which resolved more quickly and lastly, Horner's Syndrome which has not resolved and is permanent (Droopy eyelid, pupil will not dilate on surgical side and I don't sweat on surgical side either. To me, all of this and my other symptoms along the way points to nerve damage/neuroma?/PN for sure.

This is why I believe that it is pretty certain that what is going on now has to be a progression of the nerve damage and likely PN. It is just way too coincidental. Because my surgeries were out of state and not wanting to return there I just may have to find a PN specialist close to home if I don't get answers from the Neuro.

chloecasey

The most common cause of night- time
Paresthesias is low blood sugars.
So attending to low carb meals especially
Dinner with a protein snack before bed
May help. Pre-diabetes actually begins
With episodes of low blood sugars.

The next culprit can be neck compression
From disc or other cervical abnormalities.

I am on an iPhone on vacation and
Cannot go into further detail at this
Time, sorry.

They checked me for diabetes including the ac1 and they are OK.
I have neuropathy during daytime too( pins and needles and numb) but it gets much worse at night. My feet feel like there is something on them .

A1c and fasting numbers are not accurate for checking what your blood sugar is doing on a daily basis if you are not full blown diabetic.

I was told by doctors I was fine.

On my own I bought a meter. I was not fine. I was prediabetic and fully on my way to a nightmare. I am so glad I took matters into my own hands. Doctors don't care until it is too late.

The ONLY way to know how food is affecting your blood is to use a meter 1 hour after eating and 2 hours after eating. At 1 hour is the highest peak and at 2 hours it should be back down. If you eat 1 cup of white rice and you check 1 hour after first bite and the number is above 150 then I would be concerned. Nerve damage begins at 150. And while a doctor will say you are ok, truth is you are NOT. Normal numbers should not reach 150 and up after a meal.

My pn is worse at night. As with everything, even a cold, it is always worse at night. sucks

My husband is diabetic so I have been checking my blood for years but I will check again.
Thanks for the information.