Hello, everybody. I’m brand new here but I’ve had DM for about 5 or so years and neuropathy for as long as I’ve been diagnosed. In fact it was the burning and numbness that brought me into the doctor’s office and we went from there to a diagnosis of DM Type 2.
My main concern right now is that my neuropathy is increasing in severity. I’m not on any medications for it just my regular diabetes meds (metformin and glipizide) and some others for other conditions.
This week I went to see a podiatrist for the first time. He does nerve decompression surgery for diabetic neuropathy/compressive neuropathy. He’s all gung-ho to do the surgery on me. I’m rather anti-gung ho. Are there others in this community who have had the surgery done? I’d really appreciate hearing from you.
I’m also going to speak to my physician about changing anti-depressant medication to Cymbalta. How does that work for folks who’ve taken it?
I know everybody has individual responses to different therapies. I’m just kind of feeling like I’m entering a giant forrest without a guide.
Thank you!
P.S. I rode in the Twin Cities Tour de Cure last Saturday for the first time. It was GREAT!
I have Diabetic Neuropathy; so far just in my feet. The burning, tingling (sometimes feels like hundreds of needles) and numbness get pretty unbearable at times. I have been told that nerve decompression surgery may be an option and that maybe I need (vitamin) B12 shots. This is something I am scheduled to visit a neurologist about.
Not being excited about surgery, I did some research on the subject and came across a nutrient supplement that is supposed to calm the affects of neuropathy. The nutrient supplement is available at Walgreens, and is called Alpha Lipoic Acid. The recommended dosage according to the doctor whose research I read, is 300mg to 600mg a day.
I have been taking 600mg of Alpha Lipoic Acid a day for over one month. I am getting some relief. After the first two days of taking this, I started noticing relief. It is not as much as I would like, however, I do feel the Alpha Lipoic Acid is giving me relief from the neuropathy (it is no longer at the pretty unbearable at times level which I mentioned above).
I am comtemplating increasing the dosage, but I am going to think on it for a while. Other things I do is elevate my feet a few times a day, and soak them in luke warm water with just a bit of liquid ivory soap for 15 to 20 minutes (then rinse with plain water) before bed.
Trying the Alpha Lipoic Acid for a while before deciding to do surgery might be worth while. If you do, I would be interested in your results.
I’d avoid surgery also, if possible. Some neuropathies do heal with better BG control. It doesn’t happen quickly depending on the severity, but it can happen.
You can try R-ALA (alpha lipoic acid), an OTC amino acid supplement. The R form is the most effective. ALA repairs the myelin sheath of nerves. It can also lower BG.
If you’re not getting good results on oral diabetic meds, talk to an endo about insulin. More T2s are using insulin.
I’ve got this “thing” about taking insulin. I’ve seen a discussion posted about it on this website. It hasn’t been recommended to me as yet but I’m trying to be more open about it and preparing myself for the possibility.
I’m going to try the ALA (R-ALA) and see what happens. Also will try and get the blood glucose in better control, too. Ah, portion control, you do elude me so.
Please do yourself a BIG favor, and do not rush into surgery. I have had peripheral neuropathy (PN) for about six or so years. I had a very severe case, so severe that I could not crawl into my own bed and had to check into the ER. I had been rx’d neurontin when my PN was first dx’d, but that med did nothing for me, and I ended up in the ER. The ER doc switched me to Cymbalta, and that med has given me my life back. I’ve been on it for six years now. I have absolutely no pain and go about my life just fine. Please exercise your non-invasive treatment options first. Surgery is a big step, and it really ticks me off when I hear about doctors who try to shoehorn patients into expensive, invasive medical procedures that may very well not be unnecessary.
To illustrate this last point, I also have a benign brain tumor, an acoustic neuroma (AR) (vestibular schwannoma). I have known about it for about eight years. My AR is relatively large, about 2.0 cm measured across in any direction, the size of a large marble. The procedure to remove an AR runs about $70K, and the procedure to treat it with radiosurgery (cyberknife, gammaknife, etc.) runs about the same. The neurosurgeons were eager to remove my AR, and the ENTs who work with radiosurgery were eager to zap it. Both camps championed their particular procedure and poo-pooed the other. I came to realize that they were not interested me. They were interested in a huge payday. There are many. many former AR patients who fully regret going forward with skullbase surgery or radiosurgery. Their post-procedure quality of life has not improved, but on the contrary, has declined severely.
Against medical advice, I decided to wait and get a second MRI a year later to see if my AR was growing. An independent radiologist compared the two MRIs and told me that there was no growth. I had another MRI the next year with the same result: no growth. I get an MRI annually, and have had six so far, and all have shown no growth. I still have my marble in my head, and it feels great! I don’t have to deal with post-surgery complications such as facial paralysis, dry eye, loss of balance, etc. Many of those who were talked into treatment have those issues to deal with for the rest of their lives. The doctors collected their money and have moved on.
I know I have painted a cynical picture here, but that is the reality. At the end of the day you have to advocate for yourself because you are the one who is going to have to live with your decision. Choice of treatment is a personal decision, and I respect that. However, you have an obligation to yourself to do your homework and be as informed as possible before choosing a path. Here’s hoping you find a course of treatment that works for you.
I’m glad you still have all your marbles. Thank you for sharing your history with me. It’s so good to hear from other diabetics out here in the real world.
I did feel “shoehorned” and that’s why I decided I needed more than one voice in my decision making process.
Thank you.
You’re not alone as a T2 being hesitant about insulin. If you can get your A1c down & have better control without it, that’s the way to go to. We have several T2 members doing beautifully using just diet & exercise. Most important thing to get BG down by whatever means.
Well, I will give you some perspective on my situation. My problem is not in my feet, but in my hands. I have suffered from Carpal Tunnel Syndrome (CTS) for more than 15 years. I have had ulnar nerve and shoulder nerve compressions. And make no mistake, high blood sugars inflame the nerves, they expand and make the compression problems even worse. And compression is above and beyond typical diabetic neuropathy. I have spent a lot of effort with physical therapy and tight blood sugar control. Initially, I was able to manage the CTS with therapy and I have been able to pretty much get my other problems under control. But I have spent a lot of effort with building flexibility and strength, far beyond anything you would get going to a physical therapist. And in the end, even those efforts proved to not be sufficient for the CTS.
In the end, by the time I finally admitted defeat and saw the neurologist, I had lost pretty much all the feeling in two fingers in my right hand. I had release surgery on my right hand last August. I got immediate relief from most of the symptoms, but I appear to have suffered more lasting damage on my index finger. Long-term compression can cause scarring.
Bernstein and others beleive that you can heal from neuropathy with tight blood sugar control, but it takes a long time. I supplement, as suggested here and I still hold out hope that I will heal. But I also accept that I may never fully recover.
So keep your blood sugar tightly controlled. That is number one. And supplements and physical therapy may help. But in the end, be open to surgery. It may offer you the only hope for relief and remember, if you delay for far too long like I did, you may suffer some more permanent damage.
Thanks, bsc! After finding this wonderful community I’ve felt so much more hopeful and I’m facing the fact that I’ve been totally in denial about my blood sugar control. I’m going to give it the old college try (again) and with better support in place see if I can be consistent with tighter control. If I can’t do it with ALA, diet and taking my meds as prescribed, I’m preparing to be open to whatever helps, be it insulin or, as a last resort, surgery.
ditto!
i work for a chiropractor who is a specialist in spinal decompression etc- he has a 93% success rate with non invasive/non surgical/ not rx treatments. back surgery has 20-30% success rate. we actually get a lot of patients with failed back surgery pain.we deal with nerve pain also. all that to say, there are usually other options and i cant encourage you enough to explore/weigh all the options!
i seem to have symptoms of neuropathy- ive heard from more than one person not to “wait” to treat it. if i keep tight BGs and take the supplements for example, how would it benefit me to treat it sooner than later?? (other than pain relief) sorry for my ignorance!!
Thank you for sharing your history with me. It’s so good to hear from other diabetics out here in the real world.