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Title: Nerve blocks? Post by Dave_Emond on Nov 9th, 2005, 10:47am Hey All, My doc has finally passed me on to a Pain Management Clinic for chronic pain. My CH never ends, I mean ... I'm in constant shadows inbetween attacks. If the shadows are low level, then I feel the pain of this other (yet to be diagnosed disorder ... suspect ALS) which includes pain while walking, separated muscles hanging lose, inability to eat, swallow; which of course leads to constant diarreaha. The list could go on too long, but you get the idea. Rex went with me for my first visit (my memory getting worse and worse) and we discussed many options. First I agreed to take a new medication (at least for me) called Namenda. Namenda is supposed to help with pain and memory. Been on this for one week, with no evident changes, but is a taper up prescription. Apparently, during questioning, the doc also decided I needed to see a specialist psychologist for recognitive issues, coping with chronic pain and suicidal ideations. So that's the background of where we're at now. This doc has offered to try some procedures of nerve blocking in the C2 & C3 regions. I agreed. Already had MRI done to prepare for this and expect a call soon. As far as I understand it, they will go in and "numb" a nerve passage, wait for results, then repeat the process a second time. After this, they will do the same with the second nerve passage. Has anyone more information on this procedure or gone through it themselves? (Note: Doc was appalled at the idea that any doctor would cut the Trigeminal Nerve.) Any idea as to what I might be looking at? Both the nerve blocks as well as the Namenda? Thanks, Dave (Rex ... if you see this and I'm missing something, feel free to jump in. Inside joke: It's pain and ......... MEMORY!) :P |
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Title: Re: Nerve blocks? Post by nani on Nov 9th, 2005, 11:07am Hey Dave, here's a link to Floridian's book and what he has to say about them. I hope this gives you some REAL relief! hugs and pf wishes, nani http://med-owl.com/clusterheadaches/tiki-index.php?page=Nerve+Block |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 9th, 2005, 11:30am Thanks Nani, Annette had found his site and bookmarked it for me ... can't believe I've missed this site for so long. But now that you reminded me ... It brought back a fear that I also wanted to mention: From "The Clusterheadache Book": In an Italian study published in 2005, suboccipital nerve blocks using betamethasone (one of the Corticosteroids) showed very promising results. 85% of patients who received betamethasone in this particular region of the neck were cluster free at the one week mark, and 62% were still pain free after 4 weeks. None of the patients who received the saline placebo injection was attack free during the first week of the study, showing that the treatment was highly effective and that the Placebo effect for cluster headache patients is about as large as the placebo effect for cancer patients (zero or close to it). For anyone who knows my background, I was shocked to see that they may be using Corticosteroids... not sure if that's a good idea or not considering my immune system is a complete mess from the Prednisone fiasco from a past doctor. Glad to have found that on Floridians site ... something I need to make sure the doc has a full understanding of my situation in this area. Good reminder ... thanks much! Dave |
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Title: Re: Nerve blocks? Post by MJ on Nov 9th, 2005, 11:49am Hi Dave Not sure if this will help as its not cluster related but does involve nerve pain. My wife has in the last two years had much nerve work done due to a ruptured disc in her lower back at L4 and L5 regions. The nerve block was attempted with an injection of steroids into the affected area. She had this done on 3 separate occasions. Sadly the results were very minimal in her case. The procedure is fairly common however. (Edit to add: was less than an hour and left hospital right after.) Her next attempt at nerve numbing was to go in with a scope and and tool and literally burn or cauterize the multitude of nerves in her affected areas. Again the results were not admirable. I had been told however that for many the procedure had been highly effective. (Edit add; 2 hr procedure and left clinic in 4 hours.) The long story in the end is she actually had one of the first artificial disc replacements installed in this country. and another disc fused. 3 months later. Does she still have pain? Yes but it seems to be showing improvement at last. Good luck and I hope you find relief soon. MJ |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 9th, 2005, 12:50pm Thanks MJ, I have no doubt that CH has nothing to do with this other disorder they are still trying to figure out. I'll try to give as short a background as possible: After getting hit with a Kip 10 one night that knocked me out of my chair, a hour or so later I felt severe nerve pains in my upper right arm. This spread through my entire body over the next two weeks. After ER trips with no help, I finally had my body go into full uncontrolable seizures/convulsions? I was just starting to wean off 120mg of Prednisone. Not responding to pain tests, etc... they sent me by ambulance to the nearest hospital 30 miles away. Laying flat, straped down on my back, of course this triggered a kip 10 CH ... total loss of all control. Must have been enough that my body gave out and I slipped away and quit breathing. (Don't know how long I was gone, but was the best feeling I ever had in my life!) Unfortunately, a paramedic intercepted the ambulance and using a "nasal trumpet" jammed that thing up my nose into the brain, I didn't want to come back, but had one of those "not on my shift you don't" paramedics. After jamming this thing hard enough and enough times they got me breathing again. The doc weaned me off the 120mg of Pred in 13 days, never doing an ATCH or cortisol test to make sure my immune system would take back over. It didn't. With MRI's, they did find "masses" on vertabrea in my thoracic spine area, forget right now which ones. Turned out after several tests they were enlarged facets that I could see myself in the pics were touching my spinal cord. No one seemed to think this anything of any significance ...? The nerve pain has gone, but my muscles are now considered as "Rapid Muscle Deteriation". I personally think because of the activity they went through trying to control the nerve pain as well as the improper Pred taper. I think your reply is important, as again, I have memory problems: Quote:
Now that you mention this, I'm pretty sure the doc said this would be the course they'd follow if the tests showed any signs of help. You guys are helping to stimulate my memories of the conversation with the doctor, so I welcome all input. Thanks again MJ, Dave (PS: Hope your wife continues on the path to a pain free future.) |
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Title: Re: Nerve blocks? Post by CHTom on Nov 9th, 2005, 2:53pm I've had the Deep Brain Stimulation (DBS) operation in mid-September and have been having positive results; studies on patients who have had it in Italy have shown a cessation of pain after about 1-2 years, but the operation is not approved yet in the US by health insurance companies (nor is it available, except, I think, one was done at UCLA). I am having pain free days for the first time in years. I don't know what has to occur for this operation to be approved by health insurance companies in the US so that theý'd pay for it, but it appears to provide the closest thing to a "cure" for chronic CH pain that we have. Funny that the implant device is made in the US and was developed here for Parkinson's disease patients (and that operation is paid for by insurance companies), but no such luck yet for chronic CH patients. Good luck with your nerve block. |
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Title: Re: Nerve blocks? Post by pubgirl on Nov 9th, 2005, 3:03pm John/chtom You still haven't told us where you had this DBS and who was the surgeon. Or is this a secret? Wendy |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 9th, 2005, 3:05pm Thanks Tom! Quote:
If you have the time, could you give me more info on this personally and perhaps link info? I'm shadowing a bit hard right now and have to admit that some things I'd normally understand right off ... well ... I feel like a kid sometimes ... like right now :-[ Is this DBS anything like what they want to try on me? If not, what you had sounds better? I don't remember what a PF day feels like at all, it's been too long. If I had one, I might freak out wandering what was going on :o Glad there's a backspace key on here or this message wouldn't be readable :-/ Thanks, Dave |
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Title: Re: Nerve blocks? Post by rextangle on Nov 9th, 2005, 5:03pm Dave, I don't think you forgot anything... but then again.... ;) Rex |
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Title: Re: Nerve blocks? Post by pubgirl on Nov 9th, 2005, 10:02pm on 11/09/05 at 15:05:36, Dave_Emond wrote:
I think this might be a good moment to say what the DBS is in case people reading this thread don't know. DBS is a HIGHLY experimental and high risk brain surgery where an electrode is planted into the hypothalamus and the brain is stimulated from there. This is high risk brain surgery because the hypothalamus is buried deep within the brain. There are other forms of DBS more commonly being performed for other conditions in other parts of the brain e.g. for Parkinsons, but not for CH There is quite a lot of info on the web about it although very few operations for CH have been conducted, almost all were in Italy and these have been reported, also reported is that there has already been one death from a sufferer operated on in Belgium. This patient died from a cerebral hemorrhage about 4 hours after the implantation operation The reason I am querying "Tom" (one of his many names on here and the general view from the Board old timers is that he is a troll) on where and by whom he has had this done is that he has been posting for weeks saying he has had the operation but refusing requests for details. This isn't an operation you can just ask for, most neurosurgeons in most countries, including Professor Goadsby's team here will not even contemplate it because of the very real risk of the patient dying. I still have never heard of it being performed anywhere other than Belgium (who not surprisingly I think have halted all future op's after the death) and Italy where they continue to pioneer it. If "Tom" is not divulging details on here, this suggests that either it was never done, or was done in some kind of clandestine way by an unscrupulous neurosurgeon, which I find very doubtful as if the DBS was conducted by a member of the Italian team, I can't see any reason why "Tom" doesn't say so as others from OUCH Italia have done so freely on here (actually to say they had had the DBS and it wasn't helping!) Brain surgery (as it clearly states in all the literature in the OUCH library) is currently not something to contemplate until all other treatment possibilities have been explored. Wendy |
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Title: Re: Nerve blocks? Post by pubgirl on Nov 9th, 2005, 10:11pm http://www.neurologyreviews.com/apr05/DBSClusterHeadache.html http://www.docguide.com/news/content.nsf/news/8525697700573E1885256DAB00477193 If anyone wants to read about it and Tom, could you either help people out here who are interested and tell us about it, or tell us why you can't. Wendy |
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Title: Re: Nerve blocks? Post by CHTom on Nov 9th, 2005, 10:37pm You have had a hard on for me, Wendy the B, accusing me of all sorts of things, but I do not comment everytime a fly farts. If anyone wants information about the DBS surgery they can send me a private message and I will gladly answer them. I wonder if the ONS operation is still being performed in the UK by Mr. Watkins-now that one really had a high failure rate! |
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Title: Re: Nerve blocks? Post by pubgirl on Nov 9th, 2005, 10:50pm on 11/09/05 at 22:37:54, CHTom wrote:
That's not what's being discussed here and the failure rate did not involve death. I would love it if you would Im me with the details of your DBS operation. It would be most interesting. Thank you Wendy |
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Title: Re: Nerve blocks? Post by Cathi04 on Nov 9th, 2005, 11:54pm Ummm...Tom, you, yourself said this procedure has only been done once in the US.at UCLA.......please, enlighten us as to where and by whom your procedure was performed. You KNOW we all want to know.......... Cathi |
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Title: Re: Nerve blocks? Post by Cathi04 on Nov 10th, 2005, 12:01am Dave, let me join in wishing you good health, clarity and quality of life once again! OHH, and PF, too! Not sure the DBS is worth the risk......... Cathi |
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Title: Re: Nerve blocks? Post by Donna_D. on Nov 10th, 2005, 12:16am Enlighten us, Tom. Else I'm breaking out my troll poking stick. We have all read about your alleged DBS. Just how deep did they shove that implant up your.... Nevermind. Poke. Poke. Poke. DD |
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Title: Re: Nerve blocks? Post by CHTom on Nov 10th, 2005, 12:48am Sorry Donna, nothing was shoved up anywhere-by the way, how are your hemmorhoids? |
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Title: Re: Nerve blocks? Post by Donna_D. on Nov 10th, 2005, 12:52am on 11/10/05 at 00:48:46, CHTom wrote:
How nice for you to be concerned about the pain in my ass...I guess the answer depends on you. How ARE you today? DD |
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Title: Re: Nerve blocks? Post by CHTom on Nov 10th, 2005, 12:57am JUST GREAT! [smiley=laugh.gif] |
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Title: Re: Nerve blocks? Post by Cathi04 on Nov 10th, 2005, 1:12am Tom, doncha think you have bothered this group for long enough tonight? Pack up the toys, go home. |
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Title: Re: Nerve blocks? Post by MJ on Nov 10th, 2005, 1:56am Hey I thought this was Daves thread! Dave I talked with someone about that nasal trumpet today. Pretty scary what can happen when things go wrong, the slightest twist or too much force and yow. The second procedure I mentioned above was called an IDET procedure. The basic reason seems to be when bone or other growth touches a nerve(s) the pain begins sorta like an abcessed tooth if anyone ever had that or an electrical short circuit which may better explain your situation. According to my minimal understanding. I remember how ugly prednisone can be was at 140 once trying to kick the CH habit seems the taper was about 3-4 weeks if I remember right. shortly after that I swore off all meds. You did it on speed dial. I just cant even begin to imagine the torture of what a kip 10 would be like while strapped down in the horizontal position unable to move at all. I think the minds only choice would be to go where you went. Now I have my allotted share of 10's but I think that your 10 beat them all. In your time of trouble your an inspiration to me. Get well MJ |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 10th, 2005, 2:40pm Thanks all ... Was a bit surprised this thread could go off in such a different path than I expected ... :-/ First let me thank you all for your concerns and support, these are trying times. MJ Wrote: Quote:
YOW! is right! I got a look at the nasal trumpet somtime later and can't imagine how that Rhino Horn could even fit in my nostril, let alone extend up to my brain! :o Even when they did get me responding, I had no desire whatsoever to come back. I had just experienced peace that was beyond description, and now someone was trying to take me away from that. This paramedic was a huge woman and I can remember her standing over me with both hands just grinding this thing into my nose. (I thought at first it was some kind of tube they where trying to get down into my lungs.) I did resist when I started coming back, I wanted to be left in that peace I had felt earlier. She knew this and kept jamming this thing up my nose until as she put it, "I'm going to keep doing this until I see that airbag raise on your own efforts!" I didn't care at first, but gave in after several more jams of that incredibly painful rhinos horn, then had to try to force myself to breath and plead that I was doing all I could. She saved my life ... if you can call it that :-/ MJ Wrote: Quote:
Ya know ... I have been and still somewhat suspisous that these facets touching my spinal cord could cause "phantom pains". Signals in the spinal cord telling the brain the wrong information. From what I've learned this is a possiblity, and on the sad side, the pain felt would be real to the victim, as real as any proof postive pain, such as a knife plunged through an arm ... the brain is mislead from the nerve signals and produces pain to that area as a warning sign that the affected area needs attention. Even if there is no knife in your arm, the brain had been given the wrong signals and the pain would be the same. This is just an example, but I feel worth following up on. Wait here ... the phones ringing ............ ;) Okay, that was a physcholgist I was referred to by the Pain Mangement Clinic. They will take my Medicare and I have an appointment tommorow at 2:00. They will be checking for recognitive issues, chronic pain coping and suicidal ideations. I think I have 12 sessions to start off with. Have to admit I don't have much confidence in this field, as I sat in on many sessions with my brother, who killed himself earlier this year. CHTom: I'm confused? I did get your IM and you sound like you have answers to the many questions others have been asking of you. I don't understand why you don't just post the same type of message here to this board? It's not my place or policy to post things written to me in private, so I will leave this area in your hands. I'm not a judge, just looking for help. As time and pain levels allow, I am very good at investigating and will follow up your leads. I have many contacts world-wide from my own charity and from being a former President of OUCH. I will look into this with an open mind. I will admit I am puzzled that you yourself do not open up with more information, especially if it could help another sufferer? Anyway, I thank all of you for your support and welcome all input you may have on the issue of the nerve blocks. And thanks for all the private IM's from so many of you! I've always known how much this family here cares and am sorry I let myself fall away for so long. Maybe a depression thing or something else, but it is helping to get back to my family here in Clusterville. God Bless ya all, Dave |
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Title: Re: Nerve blocks? Post by Jonny on Nov 10th, 2005, 6:43pm on 11/10/05 at 00:48:46, CHTom wrote:
http://img.photobucket.com/albums/v396/Ueli/TrollAlert.gif |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 12th, 2005, 7:41am Maybe we need not be so fast to judge ... CHTom made a simple statement regarding DBS. Since I'm not aware of what other areas he has been given the role of a troll ... I'm only looking at this one area. It seems to me that both posts put up by Wendy (Thank you) actually back Tom's statements: http://www.neurologyreviews.com/apr05/DBSClusterHeadache.html http://www.docguide.com/news/content.nsf/news/8525697700573E1885256DAB00 477193 Then I also found this on our own US OUCH website: From the OUCH Website: Dr. David Dodick of the Mayo Clinic in Scottsdale, Arizona, reported at the Migraine Trust International Symposium, that his team had implanted a device under the skin of a patient who was suffering up to five cluster headache attacks per day. The device stimulates the occipital nerve at the back of the head. The occipital and trigeminal nerves converge. These nerves connect with all of the pain-sensitive structures in the skull. Dodick explained that stimulating the occipital nerve inhibits activity in the trigeminal nerve. The 40+ year old patient had been a chronic clusterhead for 2 years. "He was on every conceivable medication. In fact, when I saw him he was on five medications," Dodick said. "We admitted him to hospital and blocked his occipital nerve and for 3 days he was pain-free, which was remarkable for him, but his attacks came back. Then we blocked him again, and for a week he was cluster-free, so then we had the idea, let’s try an occipital-nerve stimulator." The stimulator is a pacemaker-sized device that sends impulses via electrodes placed under the skin over the occipital nerves on the back of the neck, under local anesthetic. Currently patients with untreatable cluster headaches undergo procedures to destroy part of the trigeminal nerve. "Those are destructive procedures and while they may be effective, they have the potential for pretty serious side effects," the researcher said. "We put a stimulating electrode in on the right side, because that's where 90% of his attacks were, and for 2 weeks he had no cluster headaches, except for one on the opposite side, which cluster patients are sometimes known to do," Dodick said. "We then took the stimulating electrode out from around the occipital nerve, left him for 2 weeks and he went back to having his cluster headaches, so we decided then to go in and implant two electrodes, on either side over each occipital nerve. He's done remarkably well since then, and that's about 7 months ago." In the past few weeks, another two patients have had stimulators implanted, but no results are available yet. The researcher said a study would also be under way shortly looking at the utility of occipital nerve stimulators in patients with chronic migraine. "The trigeminal nerve is the substrate for pain experienced during migraine, cluster headache and other primary headache disorders," Dodick said. "That's why this kind of an approach may be applicable not just to cluster but to migraine, and possibly other primary headache disorders, too." Professor Peter Goadsby, chairman of the symposium, said the neuromodulation data presented at the conference, including the work presented by Dodick and another presentation by Dr. Massimo Leone on a deep brain stimulator in the hypothalamus in 7 patients with cluster headache, was among the most exciting of the conference. "These things turn on, and (the headache) turns off--that's pretty watershed stuff," Goadsby said. Tom: You have sent me some info on this ... where and when the procedure took place. Could you also provide the name of the doctor who actually preformed the operation? I would think you would want to remove troll accusations by simply explaining in detail all the questions asked by those of us who would really like to know. It should be that simple. I've just begun researching this area and have found out about the risks involved, personally, at this point, if I could afford it ... why not? I don't have much of a life now with the chronic CH, and don't have PF days ... shadows are always present (plus chronic pain from whatever this other disorder is ... pain I only feel when shadows are at their lowest). I'll go through with the nerve blocks first and see what happens. I'm not setting myself up to expect instant relief ... "been there done that" ... and just found disappointment. Just need to try something new as no meds have ever done squat. I can't guess what gain Tom could have in bringing up this alternative procedure, then again, I can't guess why Tom doesn't just lay everything out on the table either? I'll continue my research and post facts as to what I find. Take care ya all, Expect I should be getting a call soon to start the nerve blocks, and will let you know how it goes. Dave |
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Title: Re: Nerve blocks? Post by pubgirl on Nov 12th, 2005, 8:40am I agree Dave It is a serious thing to post on a CH board about the DBS and having had it done. It is a high risk procedure but is showing some incredible results for other neurological conditions, particularly Parkinsons. There have also been some very good results indeed for migraine. It is a possible hope for the future, particularly when they have done a few more and have perhaps identified what minimises the risks. I just find it hard to accept that CHTom has had it done but is being so very cagey about the details. This seems grossly unfair. It is like me saying I've found a new prevent that stops all my attacks with no side effects, but nah nah nah nah you lot on ch.com, I'm fine but I ain't telling you where I got it or what it is! It feels to me like there is a possibility CHTom may be telling the truth but is maximising every possible bit of attention he can get from it before his big "I told you so" revelation. Wendy |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 12th, 2005, 8:57am That seems to be my point as well Wendy ... For the life of me I don't understand why anyone with any type of a succesful treatment wouldn't just lay it all out. Where? When? By Whom? Prep? Procedure? Side effects? Final results? Aside from my own research, it seems it would be so much easier if Tom were to come forward with all these questions and answer them publicly. Tom ... I'm giving you the benefit of the doubt ... I'm not going to judge ahead of time. This is your chance to shred the role of a "troll". Would you please take this opportunity to do so? Looking forward to more info, Dave |
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Title: Re: Nerve blocks? Post by AussieBrian on Nov 12th, 2005, 9:22am on 11/12/05 at 08:57:41, Dave_Emond wrote:
Going back just a few posts Tom said he preferred not to discuss it publicly, but anyone interested may care to PM him for details. I sent him a PM and he privately answered every question I asked. |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 12th, 2005, 4:41pm on 11/12/05 at 09:22:46, AussieBrian wrote:
Fair enough I guess, I'll give it a shot. Thanks Brian, Dave |
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Title: Re: Nerve blocks? Post by pubgirl on Nov 12th, 2005, 10:40pm I did that but he only sent me info that anyone could get from the Net, not the who's , where's and when's. But then again he doesn't like me so it isn't surprising ;;D Wendy |
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Title: Re: Nerve blocks? Post by CHTom on Nov 14th, 2005, 12:57pm Dave, I tried to send you an answer to your questions about DBS but was notified that I have been blocked from responding to you. Perhaps Brian still has the message that I sent to him and he can forward it on to you. |
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Title: Re: Nerve blocks? Post by Dave_Emond on Nov 14th, 2005, 4:03pm Quote:
Tom, Sure enough ... no message shows in my PM box, but ... it did come through in email under notification of new messages in my inbox [smiley=huh.gif] I don't get it ... I went back and checked and I have absolutely no one blocked, but yet it did come to my e-mail that it should have been there [smiley=huh.gif] Anyway ... I had done more research before I just now opened Tom's e-mail. He answered questions I would have asked before I had the chance. As for Tom being labeled a "troll" on this matter, I have to disagree. Tom's reasons for not posting everything we'd like to know has reasonable explanations for. Thanks Tom for the info. I'll go ahead now with nerve blocks and hope I find some relief there. If that doesn't work, I may try to research more into this operation and its progress both medically as well as insurance wise. Thanks, Dave |
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Title: Re: Nerve blocks? Post by CHTom on Nov 14th, 2005, 11:44pm Good luck with the nerve blocks, Dave. My health insurance company screwed up and gave me the go ahead to get the operation before they checked it out (they were notified in July about it, but didn't start checking it out until after I was in the hospital, with their permission, in September, 4 days before the operation and didn't notify the surgeon that they would not approve it until after it was done!). I've been in contact with them and it appears that they will pay-thank goodness for such an ineffecient system ;;D! |
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