Terry. Did you see Dr. Dellon?Posted by Sherrie on 5/16/03 at 08:31 (118949)
Terry, Just wondering if y0u saw Dr. Dellon in Balto. and if you are going to have the tts surgery?
Re: Terry. Did you see Dr. Dellon?Terry W. on 5/16/03 at 11:52 (118980)
Not sure if you are speaking to me but I went to see Dr. Eslami. I live here in Bessemer, Alabama.
Re: Terry. Did you see Dr. Dellon?Terry D. on 5/20/03 at 19:27 (119433)
Yes I saw Dr. Dellon in Tucson and then had the surgery yesterday in Baltimore. He found a large tumor that was literally strangling my nerves...especially the calcaneal(sp). It had atrophied to the point that it soon would have been gone.
I'm in no pain 24 hrs post op but I am still on 1600 mg of neurotin and 25 mg of elavil.
As most of you know Dr. Dellon is highly respected. I'm also sure he has his detractors because his method opens all 4 tunnels. I too was nervous because other Dr's told me this was a simple procedure and why go on a 'fishing expediation'. In my case the other Dr.s would have been flat out wrong and I would have ended up like so many on this board with a failed surgery.
Earlier this spring I flew to LA to have another expert take a 3D MRI of my posterial tibial nerve. He did and even showed me where it was pinched. He also said he was surprised it wasn't pinched as badly as he would have thought due to my symptoms. What he failed to see was the huge tumor....and believe me this guy , a neurosurgeon, is one of the best in the country.
Right now I'm in a huge 'Johnson' bandage and am cautiously optimistic. I'm afraid to get to excited as I've read so many disappointing things on this board.
I believe in prayer and I think that's what got me in touch with Dr. Dellon in the first place. I found his name the very night I came back form LA......guess where I found his name...right here on this board.
I think he is a terrific surgeon and especially if I was diabetic.
Re: Terry. Did you see Dr. Dellon?Pam S. on 5/20/03 at 20:41 (119450)
Had you had an MRI done by your dr. where you currently live. I am very impressed by all of your efforts and travels. Do you mind if I ask where you live (how far did you have to travel.) You must have been in terrible shape for quite a while?
I will be very interested to hear how you progress and if you think any of us sufferers should see this dr. Even if we think we have great medical care, this is tricky... right? Good luck, Pam
Re: Terry. Did you see Dr. Dellon?Sharon W on 5/20/03 at 22:38 (119454)
Do you have any idea when Dr. Dellon will be returning to Tucson? I am hoping to be able to go see him there in the fall...
Re: Terry. Did you see Dr. Dellon?Terry D. on 5/21/03 at 13:47 (119521)
Pam, I live in the Upper Penn. of Mi.
I first saw my local pod. and was not satisfied. Then I went to Marshfield, Wi. to see a foot @ ankle orthopedic surgeon and had nerve conduction testing there. Nothing came out conclusive. The neurologist indicated that TTS is so rare in non diabetic people and claimed he was no authority. This was also the sentiment of the orthopedic surgeon.They told me to come back in 4 weeks. The ortho said the surgery is not complicated.
During all this I found a neurosurgeon in Santa Monica who developed the enhanced MRI (neurography) that can see small peripheral nerves. But he missed the tumor. He did guide a shot of cortisone into the tunnel. This was my second shot of cortisone...my local pod also gave me one 6 weeks earlier.
Next I went to Tucson to see Dr. Dellon. He tested me with his neuro senseory machine and explained the surgery to me. He is easy to talk to and gave me confidence in his abilities.
He is going to Alaska in June. That is all I know about his schedule. He takes his time with you and you get the sense he really cares.
As I said I know I'm not out of the woods yet but am encouraged.
Re: Terry. Did you see Dr. Dellon?Terry D. on 5/21/03 at 13:50 (119522)
Sharon see my post to Pam.Just call his Tucson office and talk to Rosie. She is kind, patient, and will set you up to see him. It is also easy to fly into Tucson and rent a car. We stayed at the Doubletree. Very nice and close to his office.
Re: Terry. Did you see Dr. Dellon?Bev on 5/21/03 at 14:44 (119528)
You sure are fortunate to have been able to seek out those specialists , that was great :) Did Dr. Dellon find the tumor with that neurosensory testing machine? Where was the tumor that the other neuro missed it, was it that small that the other neuro could not see it? That would upset me. I see that those machines are available all over the US at various offices for diagnosing PN. How are you doing now? Bev
Re: Sharon Welliott on 5/21/03 at 14:53 (119531)
Sharon, I'm curious, what exactly do you hope to accomplish by seeing him? Is it that you suspect an insufficient release and are considering a second TTS surgery? If not, do you think just by examining you he'll be able to diagnose a rare PN and prescribe that magic potion?
Re: Sharon WSharon W on 5/21/03 at 16:25 (119548)
I'm quite satisfied with the results of my TTS surgery.
I've posted about my reasons to see Dr. Dellon in the past -- you could probably find it with a search.
Re: Terry. Did you see Dr. Dellon?Terry D. on 5/21/03 at 18:26 (119552)
The neuro testing from Dr. Dellon did not indicate there was a tumor...of course it couldn't rule it out either.
The tumor was on the way into my heel. It was the size of a quarter. Which evidently is very large relative to where it was located.
An old injury may have contributed to the reason for the tumor.
It is now 48 hrs. post surgery and I am doing remarkably well. No pain or even discomfort. But remember I am still on neurotin and elavil.
I have a HUGE bandage on so it's hard to feel very far down but I am slowly getting feeling back in my toes and lower.
Re: Terry. Did you see Dr. Dellon?Sharon W on 5/21/03 at 18:39 (119554)
Thanks for the info, Terry. I have a friend in Tucson I can stay with (for a couple of weeks, if necessary), so I probably wouldn't even need a car...
Re: Sharon Welliott on 5/22/03 at 11:13 (119648)
Sharon, I did the search, found the relevant posts and am still somewhat unclear. By all means go see him, it's just that I suspect you may have your hopes up too high. You'll be tested for sensory loss, the extent to which you probably already know you have. Can I ask, do you have permanent sensory loss in the extremities (ball, toes, heel) or is it rather more like you get it at times, or perhaps only when the tarsal tunnel is compressed e.g. thru walking or shoes touching? If permanent, at the least, the machine likely will detect it, and you'll likely be told either that revision TTS surgery is recommended, or that you have some vague PN and surgery is not recommended, which is more or less where you are now. As you know, in the doctor world your 80% improvement already would be viewed as a success.
Re: ElliottSharon W on 5/22/03 at 18:19 (119691)
I have tingling in some parts of my feet pretty much all the time, regardless of what position my feet are in, or what they're touching, or what's touching THEM. However, when I'm not using my feet too much the tingling is more annoying than painful (assuming I have my usual 1800mg of Neurontin on board every day)!
My feet and calves should show abnormalities similar to the last NCV I had done (last February), IF Dr. Dellon's machine is really more sensitive than the standard nerve conduction testing. It should even have a chance to detect more nerve conduction slowing than than the NCV did. (Aas you probably know, Elliott, conduction SLOWING in a peripheral nerve indicates damage to the myellin sheath; a change in the amplitude indicates axonal damage.)
However, I'm more interested in getting a punch biopsy done, to assess for SMALL fiber damage that wouldn't show up on any of those tests because it doesn't involve myelinated fibers.
Please don't be concerned that I may have my hopes up too high with regard to seeing Dr. Dellon. I may be feeling kind of desperate about this, but that doesn't mean I'm hopeful. As a matter of fact, I'm a pessimist by nature (always have been) and I'm certainly pessimistic with respect to new doctors. Searching for a really good one is 'The Neverending Story'.
The thing I'm most pessimistic about, is what will happen if I don't get a more specific diagnosis -- one that identifies a cause. I don't want to end up being treated for 'idiopathic' PN the rest of my life (which is to say, taking drugs to limit the pain, but never getting any treatment that offeres ANY hope to even retard the progression of the neuropathy). I guess that might be cheaper for the insurance company than finding and treating whatever is causing this, but there's NO WAY it would be better for ME.
Good luck to you, Elliott, in your own quest for healing.
Re: Elliottelliott on 5/22/03 at 19:12 (119697)
Sharon, does it feel like the tingling has a source of entrapment (e.g. tarsal tunnel area) or is it more like all over everywhere? Is it limited to certain toes?
Re: ElliottSharon W on 5/22/03 at 21:43 (119718)
There's very little tingling in my toes; most of it's in my arch area, the lateral and anterior plantar areas of my foot, my heels, my inner OR outer ankles, OR on the top of my foot. There is more tingling in the areas associated with the posterior tibial nerve and its branches, especially those associated with the lateral plantar nerve (the one nerve that showed slowing on my first NCV). There could be minor re-entrapment problems in the right arch area, or perhaps there's some damage in that area caused by my orthotics. It's hard to tell how much of it, if any, could related to TTS -- because there is something else going on too.
Residual problems after TTS surgery could not explain the tingling or pins and needles or burning/aching/discomfort in unrelated areas of my feet and ankles, OR in my calves, hands, forearms, and shoulders. I also have problems sometimes with weakness (usually in my hands or in the front of my right ankle and shin).
My hands will burn, then my palms will turn red, and then my hands go so numb I can no longer feel the vibration of the car through the steering wheel as I drive (that problem is unfortunately very consistent). Sometimes one hand or the other will form a 'claw', and it will be difficult to open up my hand. I had no problems in my hands until last fall (except for occasional numbness from leaning on my elbows); now I have both sensory and fine motor control problems in them (clumsiness, problems with writing, etc.)
I don't like to talk about this because I know it sounds completely psycho.
I've been told by doctors that I might have carpal tunnel syndrome and/or ulnar nerve entrapment -- and perhaps I do -- but I've also had two neurologists tell me that entrapment syndromes (like TTS or carpal tunnel or ulnar nerve entrapment) are more likely in people with PN and that they think the two are 'linked' or that PN 'contributes to' entrapment syndromes. (That's something that Dr. Dellon is quite an expert in).
Sorry to ramble on. What I'm trying to tell you is, it's not just my feet anymore...
Re: Your postingsKristi on 5/22/03 at 22:15 (119721)
This is the first time I have been on this site and have done alot of reading of everyone's comments. The reason why I am writing you is that you seem to have TTS and CTS if I am correct. Have the doctor's ruled out MS? The only reason why I am asking is because I am nervous for myself since I currently have CTS and they (Orthopod) think that I have TTS in my right foot. The scary thing is that I got up early one morning and was about 5 steps from my bed (on my way to the restroom) and when I stepped down on my right foot it just wasn't there. My brain is foggy about the details but it was like my foot must have suddenly gone to sleep. I broke my 5th metatarsal and have been in a cast for 7 weeks. My NCV is scheduled for next week on my hands and my feet now since my foot is having nerve problems. (tingling, going to sleep and a 'wave' sensation, etc.) I fear that this could happen again once the cast is off. I am puzzled as to why all of this has come on all of a sudden and am fearing something like MS. (I do not have any of the risk factors for CTS). You would ease my mind if the MD's have ruled out MS in you. Any tips you could pass along would be greatly appreciated as well since I am new to this......
Re: Your postingsSharon W on 5/23/03 at 07:11 (119729)
I had an MRI of my brain done to rule out MS. And I once had something similar happen to me, except it was my left hand that I suddenly couldn't control. I was walking into the bank carrying papers in my left hand, and I dropped the papers because all of a sudden there was no way I could grip them.
I don't know if that helps...
Re: Sharon Welliott on 5/24/03 at 22:40 (119854)
Thanks for the detailed description. I just wonder whether you'll get much more than an opinion as to whether a(nother) release is warranted. If you find out more, please post what you learned. Thanks.
Re: Your postingsBrianG on 5/26/03 at 19:31 (119973)
Good luck Sharon, it sounds like you have a lot on your plate! I hope that whatever it is, can be cured fairly easily.