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dellon

Posted by Scott on 3/27/03 at 19:16 (114796)

Hi, just wanted to check opinions on Dr. Dellon. I'm thinking of seeing him next month. I would be very interested in anyone's opinion, good or bad. Have one shot and want to make sure he's legit. Thanks.
Scott

Re: dellon

Donna Z. on 3/27/03 at 19:43 (114797)

I have seen him. It was a good. Different postop from what my normal pod. would of had me doing. He knows what he's doing.
Donna Z.

Re: dellon

Sharon W on 3/27/03 at 22:51 (114801)

Scott,

If you go to neuropathy.org (it's a membership site, but membership is free) and do a search there, you'll find a whole LOT of different opinions about Dr. Dellon.

Sharon
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Re: dellon

scott on 3/28/03 at 10:04 (114816)

Sharon, unfortunately I cant access the neuro site with a web companion.
Can you give me an idea if the controvery is related to his surgical outcomes or his broader diabetic research etc. He seems to be a bit commercial but yet has very good credentials. I just want the best doctor
I can get as I have a bad and advanced case. Thanks very much!!
Scott

Re: dellon

Sharon W on 3/28/03 at 10:47 (114820)

Scott,

I would go to see him if I could afford it. Not for TTS surgery -- I've already had that, and it was successful -- but because he could do QST testing and a punch nerve biopsy, and I really think I need both tests.

I think most of the controversy has been over the fact that he is an advocate of TTS surgery for people who have peripheral neuropathy. But others have complained that they had QST testing done, spent a bunch of money going to see him, and learned nothing new or helpful in finding out the cause of their problem.

Sharon
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Re: dellon

Sharon W on 3/28/03 at 11:18 (114822)

Scott,

I should add that a number of the peripheral neuropathy patients who have had nerve decompression surgery done by Dr. Dellon have had very disappointing results -- and in a couple of cases their nerve problems became much worse after surgery.

Sharon
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Re: dellon

Sharon W on 3/28/03 at 11:23 (114824)

Scott,

On the other hand, I should note that ANY surgeon who does nerve decompression procedures will have both successes and failures, and it seems to be the failures who are most likely to post their results on a message board...

Dr. Dellon (as you probably already know) is a well-published expert on neuropathy and on performing surgery on peripheral nerves.

Sharon

Re: dellon

Ed Davis, DPM on 3/28/03 at 19:03 (114848)

Sharon:
QST is not universally accepted as a test for neuropathy and TTS. I remain unconvinced about the merits of QST.

Dr. Dellon's TTS surgical release technique is impressive. He has made a teaching CD-ROM that I use to teach technique to my podiatric surgical residents.
Ed

Re: dellon

Sharon W on 3/28/03 at 20:06 (114852)

Dr. Ed,

It's interesting that you use Dr. Dellon's CD-ROM to teach technique to your podiatric residents! I found that CD-ROM in my research over a year ago and was fascinated... The website also had a lot of info about the QST testing, and the machine that's used.

If you don't mind my asking, why do you remain unconvinced about the value of QST? (Is it because you've not had many patients seek out testing by that method, or because they've had mixed results?) I am actually quite serious about the idea of seeing Dr. Dellon but if QST is not effective there would be little reason to do so.

Sharon
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Re: dellon

Ed Davis, DPM on 3/29/03 at 14:45 (114898)

Sharon:
The physiatrist whom I am very impressed with, Dr. Mohammed Saeed of Tacoma, WA has one of the best NCV/EMG techniques I have seen anywhere in the country. He often can distinguish not only between post. tib. nerve entrapment but determine which branch of the nerve specifically is entrapped.

Dr. Saeed owns a QST device but feels that NCV testing is far superior. One problem with NCV is that while it can be a very specific test, it is not very sensitive for tarsal tunnel syndrome. One advantage of QST, according to Dellon, is that it may be more sensitive.

I don't have sufficient knowledge of the nuances of testing to make a definitive statement concerning QST. My opinion is based on my conversations with Dr. Saeed and the observation that QST is not considered a standard of care by the physiatry and neurology community, at large.
Ed

Re: dellon

Sharon W on 3/29/03 at 21:01 (114916)

Dr. Ed,

Thanks for the input. Actually, I have toyed with the idea of coming up your way for another opinion (my older sister lives in Richland -- not really that close to you, but closer than Texas!) and I still might try to do so someday. But it's not TTS I need further evaluation for right now --I've been diagnosed with peripheral neuropathy, and I'm trying to figure out the cause before it gets too much worse.

I am aware that the prognosis for PN is not good, but I also know that the only hope for halting the progression of this disease is to figure out exactly what kind of PN I have and what is causing it, then treat the cause (if possible). With that in mind, one of the things I wanted to check for is smaller-fiber neuropathy, and it had been my impression that was the main advantage to using the QST machine. Also, I've heard that Dr. Dellon uses the punch biopsy test pioneered at Johns Hopkins for small-fiber neuropathy, where they microscopically examine the smallest nerve fibers and count those that look healthy or unhealthy... then repeat the test a year or so later to assess the progression of the neuropathy.

Anyway, thanks for the info, Dr. Ed. I appreciate it.

Sharon
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Re: dellon

Ed Davis, DPM on 3/30/03 at 13:11 (114927)

Sharon:
PN and TTS can be close cousins so testing is essential to pin down the causes. PN can mimick TTS at times. I remember a poster about two years ago with a B-vitamin malabsorbtion problem who was diagnosed with tarsal tunnel, had unsucessful surgical treatment but was eventually cured when the true cause was discovered. You may want to do a search on this site.

The prognosis of PN is related to the cause. The three most common causes are: diabetes, hypothyriodism, vitamin B12/folic acid malabsorbtion.
Ed

Re: For Dr. Ed

Sharon W on 3/30/03 at 20:12 (114945)

Dr. Ed,

Both of the neurologists I've seen (so far) for assessment of PN have said that PN and TTS can be related. One commented that these two problems were 'linked' and that PN 'could be a factor' in developing TTS; the other told me that TTS is more likely to develop in PN patients, and that he belives PN 'contributes' to developing TTS. I know that Dr. Dellon has written papers on this subject and has become a specialist in doing TTS surgery on patients who had already been diagnosed with PN.

You commented, 'I remember a poster about two years ago with a B-vitamin malabsorbtion problem who was diagnosed with tarsal tunnel, had unsucessful surgical treatment but was eventually cured when the true cause was discovered.' My case is different. While TTS and PF might well have masked the fact that I was also beginning to develop PN, I'm convinced that TTS was a correct diagnosis for me. That's partly because my pain level went way down after TTS surgery and partly because my pod found 6 varicose veins inside the same compartment of the lacinate ligament as the nerve and the two normal blood vessels. Both of the neurologists that I described this to indicated that six varicose veins putting pressure on the nerve could indeed cause TTS.

I certainly agree with you that 'testing is essential to pin down the causes,' and that is what I want to do. I just wish the neurologists around here were more in agreement with you! My PCP wants to help me find the cause, but she isn't an expert on PN (and besides, she just had a baby and isn't working right now).

It's not easy. I can't order any tests for myself (!) and the neurologists I've seen so far aparently think that 'peripheral neuropathy' is an adequate diagnosis at this point (my PN is still mild and I guess it's progressing fairly slowly). These neurologists seem to take the attitude that it's not worth trying to determine the cause of my PN because it probably wouldn't be something they could cure anyway. I don't agree with that at all! I want to do everything that CAN be done to treat the cause, NOT just dull the pain -- and to do that, we have to figure out what the cause IS.

You commented, 'The three most common causes are: diabetes, hypothyriodism, vitamin B12/folic acid malabsorbtion.' (You didn't mention alcoholism; I'm not a heavy drinker, however.) My TSH was checked recently, and it was normal. I'll have to ask about folic acid; I'm not sure if my PCP checked that -- it might have been on the blood chemistry panel she ordered. I do know that she ordered tests for B12 and homocysteine, but not MMA. She also checked my sed rate. All of the blood labs she's ordered so far have come back normal.

The second neurologist I saw (but not the first) said that he thinks I have pre-diabetic neuropathy. However, he didn't order any labs to determine that -- and I've never failed a blood glucose, a fasting blood sugar, or an accucheck. When I see my PCP again, I will ask her to order the HbA1C and the glucose tolerance test. That should determine, one way or the other, whether I have impaired glucose tolerance.

It seems strange that the nerve conduction tests I had done a year ago only showed slight slowing of my lateral plantar nerve in my R foot (even I was in terrible pain) -- and the NCV done last month showed that other nerves have been affected by the slowing, extending up as high as the common peroneal... yet I'm only in 20% as much pain!! To me, that doesn't seem to make any sense at all. In fact, I've wondered about the accuracy of the recent nerve conduction tests; the testing aparatus he used was obviously very old. Besides, he didn't check both feet -- so we really don't know whether the nerve slowness is present on both sides or only on the surgery foot.

Anyway, thanks again for your your comments and for taking an interest.

Sharon
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Re: For Dr. Ed

Ed Davis, DPM on 3/31/03 at 14:21 (115021)

Sharon:
It definitely sounds like your TTS was separate from the PN. Mentioning alcoholism was a good point as that is probably in the number 4 slot. There has been some discussion as to whether the neuropathy caused by alcoholism is due to a primary effect or by the decreased uptake of B vitamins, especially Thiamine (vitamin B1).

Unfortunatley, many cases of PN do not have an identifiable cause. I would press your PCP to re-examine the 'big three' again since blood levels can fluctuate and because those causes are easily treatable if confirmed.
Ed

Re: For Dr. Ed

Sharon W on 3/31/03 at 15:00 (115032)

Dr. Ed,

Yes, the top three causes may indeed be worth revisiting. For example, I have never had a Free T3 or a Free T4, only the TSH. And the 'pre-diabetic' thing might be valid, too.

There was an article in the January 2003 Neurology magazine which outlined a study on the neuropathy that impaired glucose tolerance (IGT) can cause vs full blown diabetes. The IGT version was milder and primarily involved small nerve fibers vs larger with diabetes. (Hence, my interest in the QST and the punch biopsy.) The test used to determine IGT was the standard oral glucose tolerance test. IGT was defined as 2-hour post glucose challenge level between 140 mg/dL and 200.

However, as I'm sure you're well aware, there are also other identifiable causes for PF that may be successfully treated these days (slowing or sometimes even halting the progression of the disease), especially if the problem is treated early on. The neurologist I saw earlier said he thought CIDP (chronic inflammatory demyelinating polyneuropathy) was one possibility. I really wish he had followed up on that... but he didn't.

From the comments I've read on the 'neuropathy.org' bulletin board, it appears many doctors may be unaware of this -- but studies have shown that MOST patients previously diagnosed with 'idiopathic' PN can be precisely diagnosed (and a cause identified) if they are seen by a true specialist in PN.

Sharon
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Re: For Dr. Ed

Ed Davis, DPM on 3/31/03 at 18:11 (115050)

Sharon:
The diabetes issue is complex and one which I currently have patients in the set of circumstances you mention.
There are a number of theories as to why diabetics get peripheral neuropathy. There is also evidence that diabetics who have good glycemic control slow the progression of neuropathy.

There are individuals in whom neuropathy manifests itself before hyperglycemia. The dilemna is how to treat the neuropathy because glycemic control has not entered into the picture yet.

A complete workup should include TSH as well as free T3 aqnd T4. The pattern of peripheral neuropathy seen with hypothyroidism is often a mononeuropathy multiplex. In other words, multiple individual nerve trunks become effected sequentially -- not that far off from what is experienced in tarsal tunnel syndrome. Diabetics often experience a distal symmetrical polyneuropathy in a stocking distribution. That is, numbness and possibly pain starting from the toes and progressing backwards. Vitamin B deficiency states tend to have a pattern of neuropathy more similar to that of diabetics. Such individuals can recover nicely when proper supplementation is provided.
Ed

Re: For Dr. Ed

Sharon W on 3/31/03 at 21:36 (115074)

Dr. Ed,

I was quite intrigued by this comment: 'There are individuals in whom neuropathy manifests itself before hyperglycemia. The dilemna is how to treat the neuropathy because glycemic control has not entered into the picture yet.' Would I be correct then to assume that people suspected to be in this category are those with 'metabolic syndrome' or 'syndrome X'? The obvious problem I see with that would be that there ARE obese people with high blood pressure and elevated cholesterol who stay that way their whole lives without ever developing diabetes!

Because I'm big, my PCP does test my blood glucose a couple of times a year. Interestingly enough, it's always been right on average -- for example, an accucheck would 90-110. But I suppose that could change.

I did show the 'stocking' distribution for sensitivity to pinprick that's typical of diabetics, but I noticed it more in the R foot, and more on the inside of the ankle than the outside. My PN doesn't feel to me like it's symmetrical; I notice more symptoms on the R side than the L. (The symptoms I notice in my feet and ankles are mostly tingling in my feet, which is always present on both sides, and occasionally a bit of burning or pins-and-needles. These symptoms become quite a bit more noticable when my Neurontin is starting to wear off.) Of course, we don't KNOW for sure whether the nerve problems in my feet are symmetrical, since only the R side was tested by NCV this year. (A year ago, both sides were tested by NCV and EMG, and the slightly slowed lateral plantar nerve was only noted on the R.)

Sometimes I have problems with keeping my balance (especially in the dark), and during a gait observation my podiatrist thought she had detected traces of foot droop. Other times, I have problems with twitching muscles in my legs or feet.

There is also the thing with my hands -- which MIGHT be a combination of mild carpal tunnel syndrome combined with ulnar nerve entrapment... even though no abnormalities showed up on the NCV when he tested my R hand and forearm. Two doctors (only one of them a neurologist) have said that my hands could present a separate problem. If so, it would be quite a coincidence -- but stranger things have happened.

Unlike the thing with my feet, what's happening with my hands IS NOT primarily a sensory problem. Even mild twinges of pain in my hands and forearms are very rare. My hands do tingle and sometimes cramp when I drive for over an hour, and then they may gradually start to become numb --but my main complaints are: dropping things (especially tiny things like pills), lack of manual dexterity (there have been times when I couldn't even tie my shoes!), handwriting changes, muscle twitching in my palms and forearms, and sometimes just an overall lack of strength needed to grip something. My fingers sometimes seem to want to contract. These symptoms come and go; they're usually more bothersome in one hand or the other (but it's not always the same hand).

...I just don't know what to make of all this. But I DO know that I need more tests!

Sorry to ramble on. As you can see, Dr. Ed, I'm frustrated and confused by all of this. :-/ I'll ask my PCP about testing my T3 and T4, as well as the HbA1c and glucose tolerance.

Thanks for your time, and for the helpful suggestions.

Sharon

Re: For Dr. Ed

Sharon W on 3/31/03 at 22:14 (115083)

Dr. Ed,

By the way, I've never really had tingling or numbness or pain in my toes, except in the first couple of weeks after surgery. The plantar surface of the ball of my foot seems to be the most distal part affected -- primarily lateral, not medial. The biggest problem I have now with my feet is arch pain. (And even that feels so much better than how it used to be, it's not funny!) :(PIPE)

Sharon
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Re: For Dr. Ed

Ed Davis, DPM on 4/01/03 at 17:38 (115113)

Sharon:
Most of the patients I have seen who develop PN early are insulin dependent diabetics. The reason here is the genetic factor -- the concept that some genetic defect leads to both pancreatic and neurologic problems.

I think it is rare for type 2 diabetics to have this manifestation. You had mentioned weight and that is an issue that brings in the discussion of thyroid function.
Ed

Re: For Dr. Ed

Ed Davis, DPM on 4/01/03 at 17:40 (115114)

Sharon:
Could be the lateral plantar nerve that is the culprit. An NCV by Dr. Saeed could tell a lot since he can differentiate between branches of the post. tib. nerve when it comes to entrapment.
Pain isolated to the arch is, most commonly mechanical in nature.
Ed

Re: For Dr. Ed

Sharon W on 4/02/03 at 16:23 (115189)

Dr. Ed,

It could be lat. plantar nerve entrapment... My pod did release the distal TTS area; however, there was a problem with excessive scar tissue (which I thought had been successfully resolved). The other possibility I see along those lines is that it could be mechanical pressure from my orthotics. I had not been able to use them sice my surgery because (we thought) of swelling in the heel and arch area. They just weren't quite a perfect fit anymore. She eventually modified my orthotics about 3 months ago by having them cut out the very bottom of the heel cup and add more padding, and that seemed to help a lot -- I could finally wear them for more than an hour at a time (!) But, I do find that my feet are still more comfortable in Birks; when I wear the orthotics for more than about 6 hours my feet are more uncomfortable.

But lateral plantar nerve entrapment couldn't cause nerve slowness going all the way up to the common peroneal nerve -- could it?

Sharon
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Re: Thanks, Dr. Ed

Sharon W on 4/02/03 at 16:25 (115190)

:)