|
||
|
Title: I need to vent...more medical gripes Post by hdbngr on Mar 28th, 2003, 12:30pm The latest in the fun and exciting interactions with medical professionals. Bring on the clowns... A few Doctors are trying the Medtronic implants for relief for cluster headache sufferers. There is little supporting literature yet, so the few who have tried for the surgery are granted "guinea pig" status. I have high hopes for this. I'm a chronic, have tried everything else in 6 years, most medications are ineffective. The insurance company actually authorized it without a fight. The Doctor who performs the implant wants one more additonal diagnostic procedure, a mediated C2 nerve root block, done first. If this was effective, he would proceed with the implant. The upshot was it might provide temporary relief from the pain. His office went to schedule the C2 procedure ASAP, one month later. Two days before the procedure, that office called for an auth number. Apparently, Doctor #1 was out of network. The Doctors office said "oops" and found docter #2 to do the C2 procedure, scheduled ASAP again, 4 weeks later. This time, I called my primary care, my insurance company, and doctor #2's office before hand to make sure all details were handled. We went to the appointment yesterday. The Doctor was very nice, and asked all of the usual - medications, where is the pain, what have you tried? I asked when we were going to do the injection. He was baffled. He does perform nerve blocks, BUT, he doesn't perfom that particular C2 nerve block and had no idea that I was there for one. Said he would be glad to provide a referral, and to a surgeon for a consult on the stimulator. We explained we already had a surgeon and he WAS the referral, that was why we were there. He gave us the low down: The C2 block requires a 2-year fellowship of training, is in a difficult spot located next to an artery, and if done incorrectly, causes paralysis from the neck down. He apologized if his staff had told me otherwise, and was concerned that I had been referred there. The paperwork he had from the surgeons office did not reflect anything about a C2 block. Turns out, the risks associated with the diagnostic procedure are much greater than with the surgery itself. We had not been told any of this before. First attempt: Scheduled with a Doctor who did the procedure, but was out of network. Second attempt: Doctor was in network but did not perform the procedure. No one seems to understand that halfway wont work here. Now the Insurance company wants to know why we are getting a diagnostic procedures for something already authorized, and why we have needed to see three different doctors in as many months. I'm scared they are going to cancel the authorization. 4 days taken off of work, two hour drive each way with no completed block, no surgery scheduled, and still getting hit daily. Arrgh! Sorry for the length, but desperately needed to vent. Has anyone out the mystical meidated C2 nerve root block? I am one really frustrated guinea pig. |
||
|
Title: Re: I need to vent...more medical gripes Post by amber on Mar 28th, 2003, 12:56pm wow..what a bitch!!! I have no information to offer..only support. I'm sorry you've had to take so much time off of work, only to get a complete runaround. All I can say is...be in their face until they figure out what's up. Obviously you were mislead...and they should be held accountable. Unfortunately in most cases these things end up being ignored. I hope you have a better day tomorrow! Amber |
||
|
Title: Re: I need to vent...more medical gripes Post by Mark C on Mar 28th, 2003, 5:09pm Damn, HB, What a nightmare. I hope this mess works out OK for you. I have been through the wringer myself a couple of times with the insurance / doctor crap. Keep fighting the good fight. PFDAN's Mark |
||
|
Title: Re: I need to vent...more medical gripes Post by Roxy on Mar 29th, 2003, 12:50pm Sorry you are getting booted around everywhere. Like Amber said....get in their faces until they get it all worked out. Squeaky wheel gets the oil, and all that stuff. Hope it works out for you, keep us posted. PFDAN, Tracey |
||
|
Title: Re: I need to vent...more medical gripes Post by Not4Hire on Mar 29th, 2003, 8:58pm yo!... hdbngr.....or (if i may *buy a vowel*) headbanger do ya think that: Quote:
this is a clue that y'all are charting ....UNKNOWN WATER... and that there are ......maybe.....more reasonable alternatives....??? dunno about ....u.... but the prospect of "paralysis from the neck down".....just gives me the ULTIMATE WILLIES..... are you seriously thinking of this........????? ....pard, there are *other avenues*.....explore 'em..... ...some snake oil has the venom....... >:( |
||
|
Title: Re: I need to vent...more medical gripes Post by Nathan on Mar 30th, 2003, 8:36am i just have one question.... how are you holding down a job if your getting hit daily??? i have been cronic for 3 years and i got fired from my last job due to chs (always calling in, wanting to leave in the middle of a shift, ect) and having been able to find anyone to hire me since! they job it "poor job stability" which means basicly they dont wanna hire someone when they never know if he can work or not. so how do YOU do it? do you only get hit at night or something? |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Mar 31st, 2003, 4:50pm Nathan: Job histories sound rather similar... I get hit during the day, too, but to answer your job question...I learned some hard lessons, and I learned some tricks. Some days, there is no way I could come to work or hide it, but basically, I have become a "closet clusterhead". I was in the non-profit world when I first started having them. Doctor first said migraine and stress related so even though I had been in my job for 2.5 years and had never had headaches, I changed jobs (stupid me). They got steadily worse in my new "low stress job" and I missed more and more work. I had the feeling they were going to fire me for calling in so much, so when we moved out of state, the opportunity came up to not work for awhile. I grabbed it, thinking it might help. I had missed so much work that I never got my last paycheck. I owed them too much time. I worked there for only 4 months. Then the cluster headache diagnosis came. I went to an O2 supply company to get set up. Even knowing I was chronic, they offered me a job out of the blue because I could relate to the other cluster patients they had. Free oxygen and could hook up at work. I didn't have to see customers, just talk on the phone, so it didn't matter if I looked like homemade hell. At the time, I had lousy insurance that wouldn't pay for O2, so it was the best job, ever. They understood. I worked there 5 months. Then we had to move again. I was "let go" from the next job, after I took too much time off. I had tried to educate them on clusters, told them I had them. BIG Mistake. They didn't understand and said I should "go home until I felt better" (When is that?). I worked there eight months. By then, my resume was really spotty as well and I sounded like a flake. I got lucky with the job here, an answer to a prayer, and just celebrated my two year anniversary here. Unfortunately, it is also the longest I have held a job since clusters began. I didn't tell anyone here I had them. I am lucky to have an office with a door that I shut if it gets really bad, fast. I can go into a rarely used bathroom if I need to pace, bang, or puke. Other times, my husband drives me home when there is no hiding, or its not possible to drive. As long as the work gets done, and done well, they have been flexible. There is always some illness going around here, and I try not to lie, just let them assume I had the flu, or whatever is going around. It is amazing what people don't want to see, and what they assume, if you just don't say anything at all. This year, I took my vacation in clusterville. They don't know that, I just tell them it was nice to have some time off. I have been off 10 days in the last 3 months, but 5 of those days were "vacation", 2 were personal, and 3 were sick. All were due to CH. Hopefully, this way, I wont hit the HR radar screens. It's a big place, lots of employees. Been here long enough that keeping a low profile is no longer quite enough, though. Co-workers have begun to pick up on the cluster symptoms, and have been asking questions. Guess I was lucky to make it 2 years. I have to find a solution, and soon. If dropped the jobs I didn't spend enough time at from my resume because it looked bad. I asked a previous supervisor to call HR at old jobs to find out what they would say (might surprise you). If they focused on health, rather than the quality of my work, I didn't list them, or found an coworker who would provide a reference instead. Employers "assumed" I took time off because of a new baby and was renentering the workforce. After the first two interviews where I didn't get the job, I quit correcting them and got a job. They understand mommy, they don't understand CH. Maybe I will win the lottery and can call in "rich" instead of sick. I hope you find something soon as well, Nathan. PFDAN. Vanasa |
||
|
Title: Re: I need to vent...more medical gripes Post by Nathan on Apr 1st, 2003, 8:04am hdbngr, it sounds like you have a little more determination than i do ! LOL! i tried and tried to get a job after i was diagnosed, but i was honest with all of them and told them there will be times i have to stop what im doing and go to my car, a bathroom, ect to use my o2 and bang my head against something or just rool around in pain (i lift out the banding and rolling part but you get the idea) and of course, didnt get the job(s). after that, i just gave up and applied for disability. it has been a long hard road fighting with ssi, but i will finally have my disability hearing this month and my lawyer is confindent we will win. i would much rather be in your position but i just dont have the job skills to merrit a position with my own office or even a little understanding if i need to pause for 15 min to an hour to treat myself. i even tried the local dvr (division of vocational rehab) for a job out of my home and they couldnt help me due to the frequency of chs attacks. anyway, congrats to you for actually sticking it out and not letting your chs get the better of you. hopefully one day you wont need that bathroom for a hiding place, unless of course you just want to hide from your job itsself!! LOL take care, ------N |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Apr 1st, 2003, 9:03am Not4Hire: That's three vowels, how much $$$ did you have before you spun the wheel? Likewise, the prospect of "paralysis from the neck down" gave me some ultimate willies, too. I was pissed and I was scared. They kind of forgot to mention that part when they began the scheduling process... When I said guinea pig, paralysis wasn't part of the deal. Been down many other avenues. Maybe you can recommend some I haven't tried, but I don't know how much is left out there. Be sure I have put my foot down on this. We called the office and asked the nurse some very direct questions about why the diagnostic procedure is much riskier than the implant itself, why they didn't think to mention it, and why it was actually necessary. (They have already determined I'm a candidate) They promised to call us back on Friday with explanantions, but guess who hasn't called... IF I ever get there, and it works, I will post any results regularly. However, I will not get excited until at least one year has passed with consistent results. I know the trap of maybe you would have a remission anyway... If it doesn't work, I will have a very small piece of equipment (like a computer mouse) under the skin and a scar on my shoulder blade to show for it. I can live with that. I know implants and deep brain stimulation aren't for everyone, especially if the pain can be controlled by medication. Mine can't. For those of us who haven't yet found that magic formula or circulation technique... (Jill comes to mind, often) maybe there is another way. I have to try, my body wont last out another 10 years of CH. |
||
|
Title: Re: I need to vent...more medical gripes Post by Nathan on Apr 1st, 2003, 9:19am tell me more about this implant. is it the SIZE of a mouse? what is it supposed to do exctally? and the c2 block you are supposed to have, is it the same procedure i had done (novicane injuection post) because i wasnt told about possibly bieng paralized either. my neuro came in with a needle, felt the back of my head for a sec and just jammed that puppy in like it was nothing! also, he never mentioned having an implant if the injection gave me any relief, he said he just wanted to try and give me any relief possible because no meds work on me either. are we on the same page here or are you having something completely different done? ---N |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Apr 1st, 2003, 9:47am Nathan: I disagree, you sound determined. I had heard that medical disability was a tough road, and that headaches were one of the most difficult. Did you have a Doctor recommend it and start the process for you? Kudos to you for sticking with it and seeing it through. Rotten that you weren't even given a chance on the jobs, but I know they are also taking into account how comfortable THEY would be around someone in that much pain. Not very, and that's often a deciding factor. It's a shame when you have to hide portions of your life to get a job and keep a job. Good luck with your hearing. I hope your lawyer presents a really compelling argument. Keep us posted. Vanasa |
||
|
Title: Re: I need to vent...more medical gripes Post by Mr.Happy on Apr 1st, 2003, 10:32am Hey Vanessa, At first, I thought you were a little _Wacko_ for guinea pigging your way thru this C2 nerve root block paralysis implant surgery thingie...........but I took a few minutes (hours) to read thru your written history since last Oct.......and gotta admit, your medical records read kinda like the 100 Yrs War: Quote:
I can understand your Totally Justifiable Paranoia when dealing with the GOVERNMENTAL CONSPIRACY on the last one, but gee whillickers..........given a choice between Cow Pie Flowers and the paralysis thing......I dunno.....maybe it's just me........... Best of luck, whatever paths you take! One Blind Mouse, RJ |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on Apr 1st, 2003, 1:38pm Vanessa, I am so sorry to hear about all your med problems. I can so so so so associate with your problems believe me I have been through almost all of it myself. I too am chronic and NONE of the typical medicines work for me except Sansert and oxygen. Sansert has so many side effects as you know and oxygen is not easy to conceal or have available when you need it. I too have been at wit's end with this whole cluster thing that I was ready to have brain surgery at the Mass. General Hospital in Boston to remove the nerve in my face, BUT AT THE LAST MOMENT (10 minutes before rolling me into the operating room) docs decided the risks were too many at my age. Apparently the whole left side of my face would droop and my eyelid would have to be stiched open or it too would droop, my mouth would droop and I would have had to plastic surgery on that too. Needless to say even with all of this, I cried like a baby when they told me no, because I knew I would forever have to live with clusters..........a fate I could not face. I understand the run around and around with doctors and insurance and I know only two things to tell you. One -- no matter how angry you are try your best to control it when you are talking to these people to straighten it out, otherwise you get nowhere. Two-- don't give up; persistence pays off in the end. Get your G/P or your neurologist to fight the fight with you and for you. If they are on your side and WILLING to help things will be a little bit easier. I know that you made the calls and did the confirmations and researched it all and it crashed down on you, but try again and try again until you get the results. In regards to the job thing, my god -- do we ever get a break? I too have had a ton of problems dealing with a job and clusters. Being honest didn't help as I did not get any understanding. One boss described my illness as being "allergic to the rain" because every spring my clusters got worse. What a jerk he was. I learned my lesson and told no-one ever again after that.........! I have a small tank, I hide in a knapsack and sneak into the bathroom, if that doesn't work I am usually puking and then they just think I'm sick...........needless to say, even with all of that, I am now unemployed and searching for a part-time job because I can not control or predict the clusters for a 40 hour job. My doc says I could apply for disability, but I can not survive off of a $500.00/month income..........so I try and try again!! I wish you all the best with this, I hope it works for you. With any surgery or any of this cluster treatment there are a ton of risks and precautions but if you are willing to take them then I say Good Luck, God Bless and and I pray it all works out. DizzyD |
||
|
Title: Re: I need to vent...more medical gripes Post by Nathan on Apr 1st, 2003, 1:56pm hey dizzy, nice idea about the knapsack for the o2 tank! i have the small tanks myself with a halfway decient looking bag to carry it around in (wheeling the big tank around in a cart was just something i was NOT ready to do) but bieng a guy i dont think it would look good taking a bag into the bathroom with me, i would probably be accused of drug use! i havent been put on sansert yet, what are the side effects? im currently on neurontin 1800 mg a day. its not working so far, but i just started so im keeping my fingers crossed. have they tried you on it yet? ----- hoping for a magick pill, Nathan |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Apr 1st, 2003, 4:27pm Mr. Happy: You say the sweetest things...! No I'm not a whacko, but and after wading through the dregs of my posts, you can guess this isn't a choice I would make lightly, I really have tried everything. Nathan: It is the size of a mouse, only flatter, lightweight. The implants themselves have been around for more than 10 years, but used for other treatments. One day a Doc placed some of the paddles higher up on a patient and their head pain was relieved. Much like how we got a lot of medications for treatment of clusters, by accident. (note sarcasm) I will do my best on an explanantion. In men, they place the implant under the skin in the chest. In women, by the shoulder blade. It does not show in most clothing. Leads are attached and run up and beside the spinal column (subdermal) to attach to identified nerves in neck and near the skull. The leads send a constant tingling sensation, like white noise. The nerves can only send so much information at one time, so if they are sending pleasant sensation, they can't send pain signals. Patient can control the level of stimulation with a device kept at home to program the unit. There is a web site under Medtronic. If it works for the guinea pigs, I bet they eventually re-market the device as a treatment for head pain and make tons of money. I have had three nerve blocks before, and there, was NO risk of paralysis with any of those. This block they want has to be done in the hospital in the presence of a flouroscope(sp?) under sedation. Requires some skill on the Doctor side, rather than a jab. Have yet to find the magic pill. Don't think it exists. DizzyD: Thanks, sounds like you understand very well. I haven't been able to find Sansert. Thought it was discon.? Be glad you didn't have that surgery, that sounded awful. At least no one has ever had to say they would have to stich my eyelid open (Eeek!) In the meantime, I'm being very nice about it, but I will admit I cried when things fell through at the last appointment. I like the idea of the knapsack, that's a great idea for anyone who keeps it quiet at work. You ought to post that on the main board. Thanks all, I appreciate it. |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on Apr 1st, 2003, 8:05pm Hi Vanessa, I wish you luck with this and please let us know if you work things out and if this device works... it sounds like it might be a good solution for chronic sufferers who have tried everything else. It might be an option for me too but my current doc is so so conservative that there will have to be some excellent results before she will consider giving me a referral for this. As it stands my health is always in an uproar over the clusters or the side effects from the meds and this leaves me rarely healthy enough for her to consider anything. However she is always willing to listen, open to all ideas and this website where I constantly bring her things to talk about and consider. So please stay in touch with us and let us know how it all goes. Hi Nathan, I would hope that you can get to the men's room with a knapsack without people presuming anything negative, you could have anything in there, toothbrush, toothpaste, mouthwash, a book who knows..........it bugs me that people especially at work are so damn nosey!! I understand though how you feel though, I did feel wierd doing it myself sometimes but never once did I even offer an explanation, if they are suspicious then they are going to have ask outright and then I will provide them with a medical note (which I already have prepared in my wallet) stating quite simply that "I have medical condition which requires oxygen" The only problem is that the tank is so small it only holds about 20 minutes of oxygen so you have to have some other meds that will help you control it as there is not enough oxygen unless you have way to refill everyday. I use this small tank for absolute emergencies only when if I do not use it I will be so so sick that I can not function anymore, you know Kip 9/10!! I have not tried neurontin, 1800 mgs sounds like a high dosage and I have had a very hard time with high dosages of anything. Body cannot seem to tolerate alot of meds especially ones that need a high dosage (i.e., verapmil, lithium, etc.) I hope that given time the neurontin works for you. It just plain sucks when you have to go round and round on meds to find something -- anything-- that works. In regards to the Sansert, you are right they are discontinued in the US. I get my script through Myprescription.com, a Canadian pharmacy. Costs $78.00 (no insurance coverage/cash/credit only) for 100 pills but takes 30 days to get the script so you have to order very early. So far I have not heard for sure that they are discontinuing in Canada, some rumor but nothing concrete yet so I am stockpiling with the help of my doc. Another alternative that I just read from some current postings is a possible substitute for Sansert called "methergine". Both Brewcrew and Seiji are taking it with really good results so far, with few side effects, and they say it is a very good replacement for Sansert, especially for those who get results from taking it. I intend to talk with my doc about it also. Could be a $$-saver, a time saver, and eliminate some of the long-term and dangerous side effects of Sansert. Take care all and hope that you get to enjoy some of this Spring weather without dealing with the pain. I try to enjoy every simple moment that I can because I never know when I am going to feel good enough to enjoy it again!! DizzyD |
||
|
Title: Re: I need to vent...more medical gripes Post by Nathan on Apr 1st, 2003, 9:16pm hi dizzy, you actually go WITHOUT med at times? i think id rather eat a bullet. i can remember when i first got chs and hadnt been put on meds yet and i cant imagine how i survived the attacks with no help at all. i guess i just got spoiled on my o2. i know what your talking about now, the little tanks. the VERY little ones! lol! the smallest i use is the k(?) or L tanks. they are good for 2 uses at 7 liters for 15 min. thosr are the ones i have the bag for, and i think they would be a little too big for a knapsack. my chs comes so often that the smaller tanks wouldnt do any good. i would have to carry at least 2 with me at all times when i was away from home. at home i have the huge M tank which lasts about 3 weeks. as far as going round and round with meds, i cant totally relate. my med sheet is probably longer than this post! LOL! the 1800mg of neurontin seems like alot to me too, but i trust my neuro. it does seem to have some side effects i have been higher than a kite all day long but the plus side is my visual disturbances (which no one on the board seems to know what the hell im talking about) are completely gone and they were just as annoying and disruptive to my life as chs. also, no attack so far today, totally pain free! maybe this stuff will help others on the board, anything is better than nothing right? hoping everyone is pain free one day (or at least FOR one day) ---Nathan |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on Apr 2nd, 2003, 8:50am Hi Nathan, Just to clarify, I always have my oxygen.....always, always, always--- I have 4 (L ?? travel size) tanks, 1 mini tank (knapsack size) and a huge M cylinder at home and I never ever leave the house without one of these tanks or if I do it is for short trips not far from home. I go through alot of oxygen, I get deliveries about every 10 days!! As far as going off my meds, I have to go off every 6 months for the 30 day Sansert holiday. Most of the time when I do this my cluster cylce has calmed down and I am only getting hit 1-2 a night with a kip 3/4 which I can control with oxygen and excedrin migraine (there is caffiene in the excedrin migrain which works well for me for a low-level cluster). I try to stay off of the Sansert for as long as possible to give my body a break but it is never more that 4 months. My last go-around, I substituted with Topamax. For some reason I had a tough time with Topamax and I had not only severe clusters Kip 10 but I had every other kind of headache all day long.......so back on the Sansert again. Anyway this has been going on for 22 years, Ihave yet to find anything that will put my clusters into remission so I just stick with my routine, it gives me the feeling of having just a small amount of control over an uncontrollable, unpredictable illness. Hoepfully someday there will be a way to permanently control clusters without all the meds..........a miracle!! Anyway, good luck with the neurontin hope it stays working for you. Take Care. DizzyD |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on May 9th, 2003, 9:46am Well, here's an update... Due to lack of information, mixed information, and no information at all, I nixed the C2 mediated nerve root block. Through all of this, I have tried to do my homework, ask questions if something didn't add up. I have found that if you keep hitting brick walls, there is a reason why. While cancelling this set us back as far as the implant goes, I would rather deal with a Doctor who can deal straight. I called my primary, asked for a referral to another Doctor for a second opinion. We got one, and even better, he's local. He agrees with the cluster diagnosis, but after that said what is more important is day to day life and the effect of that pain on your life (I could have kissed him) He said labels can classify your pain, but don't always do a good job of telling what life is like as a sufferer. How many times have you been introduced as a "cluster patient", rather than by name, to another Doctor at an appointment? He does the spinal chord implants, thinks I'm a candidate, and doesn't require the wierd C2 thing to be done. He also listened, really listened, then explained what he would like to do. He wants to do a few diagnostic procedures (nothing with the phrase "risk of paralysis in them) to see if he can identify where he would put the leads if he did the surgery. He feels there are two factors to the pain, cluster headache and neck pain, which both have very different courses of treatment. He doesn't prescribe to the "chicken and the egg" theory, that either the head is causing the neck pain, or the neck pain is causing the head pain (been told both in 6 years). He thinks they are independent, but both a result of the air bag deployment in 1997. We have had the first two procedures done, spaced a week apart. Both outpatient. The first was for the head, and it did help for about 48 hours. The last one was an epidural in the neck. It made my neck feel better, but my head is again killin me today. I'm really hoping that we are finally making some progress. If we make it to the trial implant procedure, I will keep you posted. V |
||
|
Title: Re: I need to vent...more medical gripes Post by Tom on May 9th, 2003, 6:56pm C2 block, a pretty sophisticated procedure, indeed: http://www.pain-manage.org.tw/ex/ex10.htm A Case of Intractable Occipital Neuralgia Successfully Treated by C2 Ganglion Block ...CT-guided C2 ganglion block was scheduled on January 17, 1998. The procedure was carried out from a posterior approach according to Bogduk’s method modified by Yuda. The patient was placed prone on the CT table without sedation. The level of the C2 vertebra was identified using a scanogram(scout view). Then the optimum access to the intervertebral foramen, rather the space between the vertebral arch of C1 and C2 was chosen with the aid of sequential slices, avoiding the vertebral artery. A 23G spinal needle was inserted perpendicularly and about 2 cm from the midline and advanced 5 cm deep until the tip is about 5 mm behind the groove for the vertebral artery. Extreme care was taken to keep clear of the vertebral artery. Additional scans of adjacent levels were obtained to exclude a loop of the artery. As the needle tip hit the target, a paresthesia was elicited. After injection of 2% xylocaine 1.5 ml mixed with triamcinolone 0.5 ml, the pain completely subsided and the patient reported an area of numbness that corresponded with the distribution of the C2 dermatome. Scalp paresthesia also disappeared completely 3 days later. After the procedure the patient was free of pain for more than 2 months. |
||
|
Title: Re: I need to vent...more medical gripes Post by subluxationskill on May 16th, 2003, 8:54pm I think you are all on to something. You are looking at the nerve system and its relation to your ch probems. I have been on this site off and on and have been quite unwelcome because I am an upper cervical chiropractor. I guess a lot of people still are in the dark about what upper cervical care can do for many health problems. I have recently had a patient in the office with chronic ch for 18 years. Between clusters she would have a continious headache also but of the tension variety. I have read many posting on this site and have seen many clippings of research associated with the c-2 nerve root. It is interesting to me because in the office I have notice a correlation between all types of headaches and the c-2 vertebrael misalignment. The most recent ch patinet of mine had a large anterior left misalignent articularly of 4 mm. This is one of the largest misalign,ments i have ever seen. She has progressed nicely and has been free of a cluster for the last month. She was a frequent user of imitrex and has gotten off of the injections and her liver is applauding! I am sure I will be blasted for a presenting a "casual" testimony on here but for those of you that are open to alternatives there are things out there that may help. I am sure if any of you wanted i could get you in touch with this patient and if anyof you were open to trying this type of care I am sure I could find a doc in your neck of the woods. I hope each one of you finds a solution to your ch regardless of where that answer lies. Talking with the few patinets I have about their ordeal with ch makes me thanful I have not had to experience it! Take care. Drew |
||
|
Title: Re: I need to vent...more medical gripes Post by Ted on May 16th, 2003, 9:37pm on 05/16/03 at 20:54:54, subluxationskill wrote:
Good. I'm glad you braced yourself for it, you field-promoting, self-promoting, fucking douchebag quack. Figured now that there's new "meat" here you'd take another shot at sales? |
||
|
Title: Re: I need to vent...more medical gripes Post by subluxationskill on May 16th, 2003, 11:25pm unbelievable ted! |
||
|
Title: Re: I need to vent...more medical gripes Post by Ted on May 16th, 2003, 11:37pm It shouldn't be unbelievable. You're a 21st century door-to-door salesman that thinks because there are more cars in the driveway you should knock on the door again after already being told your worthless wares are useless to us. No Tresspassing, Subluxations Kill. |
||
|
Title: Re: I need to vent...more medical gripes Post by subluxationskill on May 17th, 2003, 9:17pm If you werent so closed minded maybe you would have found a solution to your health issues! Sorry we cant have a conversation without bias and egotism in the way. Good luck Drew |
||
|
Title: Re: I need to vent...more medical gripes Post by Margi on May 17th, 2003, 9:56pm Sublaxative, we've HAD this conversation. Ad nauseum. I hope by your good luck wishes to Ted, that means that you're leaving again. |
||
|
Title: Re: I need to vent...more medical gripes Post by Ueli on May 17th, 2003, 10:08pm Sublux, if you weren't so dimwitted you'd had noticed that nobody here is interested in your close minded, one track approach for every disease known to mankind. If you only would get lost, we didn't need to have a conversation of an kind with you. Fuck off, scam artist! |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on May 19th, 2003, 7:46am Sublaxationskill: Thank you for your concern. I'm not a newbie, and by saying that, I don't mean to imply that those on the board that are newbies are still in the beginning stages of treatments. I know many are not, nor am I. I was one of the people who asked you a direct question about your treatment approach when you first arrived, but got no answer. I assumed you didn't know how to answer. You stated that you suffer from "headaches and other ailments too numerous to list here" MY question was, If you are a Doctor of chiro, and believe in this treatment, why aren't you cured? How can we be expected to go to a Doctor for treatment when he himself is ill and doesn't prescribe to his own therapy? I also stated that in the past six years, I have spent more than $2,000 on chiropractic adjustments, at three different offices. These were good Doctors, not quacks. What is wrong with me cannot be fixed by neck adjustment, and believe me, I know. It's like saying "I see your artery is gushing, and I have these special extra large band-aids guaranteed to cover up that unsightly hole..." It seems laughable to us because you aren't a sufferer, don't know what we feel, yet you found your way here, and spend a lot of time here, obviously. If you ever want to have any credibility here, answer the questions that matter, and please don't say "If you weren't so close minded, you would have found a solution to your health problems" to anyone. It doesn't sound like you have found a solution to you own. IT IS NOT OUR FAULT. We have all spent thousands of dollars on 100's of different treatments each. We aren't close-minded to effective treatment, but we are close minded to spending yet more money on something we already know doesn't work. As previously suggested, put your money where your mouth is and cough up a few free sessions. IF you can cure or effectively reduce the suffereing of one or two of our number, then we'll talk. Best wishes, Vanasa |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on May 19th, 2003, 4:53pm Here here Vanassa!!! Totally agree with your thoughts and reasoning!! I too have been then and tried that. I mean is that really hard to understand, if chiro treatments of any kind "cured" this dreadful disease, then WE ALL would not have to suffer as we do. Anyway, people who do not suffer from cluster headaches for all thier goodwill just do not understand what it is like.......... By the way, Vanasa, how are YOU doing? Have the clusters/pain settle down at all? DizzyD |
||
|
Title: Re: I need to vent...more medical gripes Post by subluxationskill on May 19th, 2003, 11:50pm Vanessa, Thank you for the response. I am really being misunderstood on this site. I am not against any of you. In fact the reason I got on this site was to help. One day was posted a listing about upper cervical care and I was bombarded with a lot of hateful responses. To be honest I was a little shocked. But that is ok as long as I can get through to one person and help them it is worth. Now to answer your questions; I posted a message at one point stating that I suffered with all sorts of symptoms such as headaches, dizziness, muscle pain throughout the body, sleepless nights, fatigue foggy headedness, neck and back pain. I dealt with these problems for 3 years prior to finding upper cervical care. I stated this for the sole reason that I have some understanding of what it is like to hav health issues. I also understand what it is like to search for solutions in many areas and to find no answers. I was trying to empathize with you that suffer. I was trying to offer my experience. I am acutely aware that I did not suffer from ch. With that said this does not mean that if a doctor does not suffer with a specific condition that a patient has, that that doctor cannot help. That is ridiculous. No? Do all the doctors you see have ch? YOu are right I do not know what it is like to have ch. I can empathize but I have not lived it. And I agree with you it is not your fault that you suffer with ch. People do not suffer because they want to suffer. Most people that suffer are honestly trying to find solutions to their problems. And to answer your other comment about the fact that you have been to 3 chiropractors which were not quacks and that you are convinced that your problem is not invloved with your neck, i reply; If you have been to three medical doctors have you written off the medical profession as being a source of help? There are over 250 different procedures within the Chiropractic profession. Is there not a possibility that one form of care can produce a result when another did not? Again I am not against you I am only replying to your response. I would also gladly offer you services in my office to try and help you. I have at times done this to unfortunates and those that are unable to pay. I honor your choices Vanessa. I wish you the best. I have called people closed minded on here because o some of their responses. Many have not chosen to engage in a discussion but rather they encouraged throwing stones without coming to a solution. Arguing for the sake of arguing is non-sensical. I am glad you have opened up a discussion. Good luck and I honestly hope you find a solution. Drew |
||
|
Title: Re: I need to vent...more medical gripes Post by Ueli on May 20th, 2003, 6:14am That's true, Sublux, you are concerned about our health. In the same way a vacuum cleaner sales man is concerned about the cleanliness of our house. |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on May 20th, 2003, 12:21pm DizzyD Still getting hit hard unfortunately. I'm pretty low right now because it seems like everything in the medical world is two steps forward, one step back. The Doctor was great at the initial appt., and after each procedure, a member of the staff callsed a couple of days later to see how I felt, what level of pain relief was received from the procedure, if any, then forwards the report back to the Doc. At the procedures themselves, I was medicated, so I have only really seen him the one time. Based on the staff report, he decides what to do next and the staff calls you again to let you know. I was supposed to have the epidural done first, but for whatever reason, they did a nerve block from c3-c5. When I asked why later, the nurse said it would tell them if I would be a candidate for another procedure, an RFG. Warning bells went off in my mind. I told her I had already had two of those a couple years back, and they were ineffective. She sounded surprised They scheduled the neck epidural the next week. It helped the neck pain, not the head. When they called back to schedule my next appointment last week, I asked what they planned to do, and the staff person said an "epidural". More warning bells. I explained I had just had one done two weeks before. She said "Oh, well let me talk to the nurse and find out" She called back and said that two done in a row could offer more consistent pain relief, to which I replied that the Doctor wanted to do ONE procedure, the epidural as a diagnostic, then based on those results, move ahead with a spinal chord stimulator trial. That I wasn't seeking multiple procedures, just one, the spinal chord stimulator. She said "Oh' again and asked if I wanted to go ahead and schedule the 2nd epidural anyway. I got that sinking feeling yet again that we are caught in a "treatment loop" where your side of the conversation is never conveyed to the Doctor. The staff is so busy running interference for the Doc that the important details slip throught the cracks. It has happened before because no one is on the same page. You can spend 6 months, a year even, in procedure limbo. I don't think it is what the Doc intends, but they have no concept of the passage of time for a CH sufferer. When I told my husband they wanted to do yet another epidural, he said "NO, NO, NO", this isn't what the Doc said originally." I called back and said "No procedure, I need to see the Doctor in person." They still asked if I couldn't see a nurse instead. I said no, it was important I see him personally. I have an appointment scheduled on June 3. I don't want to think that this might be yet another instance where they promise the moon at the first appointment then the staff try to keep you there, getting work done to maximize revenue. We have been this route twice before and found out there are three areas: your file, the doctor and the nurse. Sometimes, they all say something different about your plan for treatment. I am cutting out the middlemen and going straight back to the source this time. I hope I am not walking into another dead end. Still the frustrated guinea pig, V |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on May 20th, 2003, 4:00pm Vanassa, I just read your posting.............unbelievable!!! I just don't understand what happens at these offices once you leave. Everything gets misinterpreted and twisted. Hopefully the doctor will straighten out everything. I hope you let him know how difficult the communication process is with his office!! (and to think I can't get a job at any doctor office/medical office due to "my lack of experience" -- my god!!) I understand that the staff is just trying to thier jobs but I think that they are overwhelmed and do not take the time to ask questions and/or understand exactly what they are supposed to be doing. I can't tell you how many times I have called for a refill on a script and by the time I get to the drugstore it is the wrong medicine and then I got to call again......they say "sorry" but it can be so totally frustrating. If they only took the time.................... I don't know Vanassa, I truly hope that all this is worth it in the end. What a friggin merry-go-round...........what we do for relief. If we could count all the minutes, hours and days that we spend trying to make the medical profession, our jobs and friends and family understand it would add up to years of so much time and energy. Stay in touch and please let us know what the outcome is with all of this!! DizzyD |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on May 20th, 2003, 4:40pm DizzyD: Nuts isn't it? I think a physician's office would really benefit from someone who had been there, done that and would be in tune to the patient. I re-read this and I even hate how it sounds. I have to ask myself did that really happen? If it was just me, I would seriously be questioning my communication skills right now. Since my husband was there with me, and has been for every appointment, I feel better about it. This has also happened to so many others. My GP is wonderful, and serves as a reminder that there are great Doctors out there who also have an amazing staff. I just have to keep trying! Taking your previous advice, I'm being nice no matter what happens. Kill 'em with kindness. Part of it is I think we go to the Doctor more than most people, so we see more. The other part is money. How many patients can be processed for maximum profit, even if there isn't time or staff to do it effectively. I know that many don't take what they can't "see" seriously. Everyone gets headaches. What is the emergency? I'm getting so cynical. My sister who is an ER nurse has told me that there can be no worse enemy than an annoyed medical professional. Imagine if medical care professionals were paid based on performance... |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Jun 25th, 2003, 1:14pm Well, there's been progress... If anyone is still reading this thread, I have had three successful appointments with the new Doc. I had a fourth appointment today to talk to the resident head shrinker for a psych eval. Took the Mp3 test and he hand-scored it while I waited in the reception area. They have to rule out that I was overly depressed (more than a chronic pain patient would be), anxious, attention-seeking or hearing voices that aren't there. Houston, we have lift off! I have now had my head examined and have been cleared for the "practice" portion of the occipital implant. Supposed to take place within the next two weeks. This is as far as I have made it in this process. Here's hoping the practice trial is effective. I'll post whether it is newsworthy or flops. Vanasa |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on Jun 26th, 2003, 10:43am Hi Vanassa, Just read your posting. Glad to hear you are not "nuts"!! my fingers are crossed that all this works and that you at long last find some relief to the forever pain. Keep me updated through this thread or by my e-mail address!! Take Care, Dawn |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Jul 21st, 2003, 9:01am Moving right along... Practice procedure has been scheduled for July 30th at 2 pm at a hospital in Charlotte (about 45 minutes away). Dr. Ferro is going to stitch a lead under the skin at the base of the head/neck and an external battery (manufactured by ANS) will be worn taped to the skin for 7 days to 2 weeks. Going this week to have blood work done, and have been instructed to arrive 2 hours early. If it helps (reduces pain by 50% or more) then they will schedule the real thing, an occipital implant. Leads will be positioned in the back or my head and neck that can send a current of warm tinglies instead of pain along the same nerves. The battery device (looks like a computer mouse, only smaller) will be implanted under the shoulder blade or under the arm on the chest wall. Each device is supposed to be good for about 5 years, depending on usage, before it must be replaced. Trying not to get wound up about it, because I don't know if the practice procedure will be successful, but I am so hopeful. I'll post the week following the practice, whether it works or not. |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Aug 12th, 2003, 10:14am Well, I'm back. Had the trial implant procedure on July 30th. They stitched one lead under the skin at the base of the skull, and I was awake during the surgery, so that I could tell them where the pain was and what effect was noticed when they moved the stimulation. When they first turned it on, I thought "amazing!", because it felt great! Feels a little like whacking your funny bone, only not quite that unpleasant. Pins and needles, but in a good way. This is the ANS unit that I tested. The effect is hard to explain. The device is operated by an industrial-strength 9-volt battery and the average trial run is a 7 to 10 days of wearing the device. Store bought batteries do NOT work, as we found out. You also have to remove the device when bathing, and the lead could not be immersed in water, so washing hair was a bit of a challenge. No showering, as the incision area was heavily bandaged and could not be washed either. I had about 3-4 stitches, and while they had to shave a bit of hair, there is no scar. A new haircut and not being able to wash my hair every night is a small price to pay. I noticed I could increase stimulation by tilting my head back and to the right. Certain positions provide more stimulation, so they don't recommend turning it on when driving. If you turn your head suddenly and get a jolt, it could be distracting. Unfortunately, the batteirs tend to drain after about a day and a half. I initially thought it wasn't helping, then realized the battery needed to be replaced very frequently. Went through five of them during that time. Levels could be adjusted by two dials on the device (worn hooked to your clothing), turning up when you need it, down when you didn't. I stayed pretty solid at a level 6, in a 2-9 range of stimulation, turning it up a few times to an 8 when things cycled up. A level is very intense, almost painful. Stimulation could be felt on the left occipital region, to a point up over my left ear. Unfortunately, this did not address the eye pain. However, the stimulation was a nice "diversion" so even when it cycled up in the front, at least the back was addressed and I could focus on the stimulation, rather than just the pain. Beats hitting your head. A course of antibiotics is prescribed to insure no infection results. The surgery itself was a breeze. Not too painful, no grogginess afterward. I went home two hours later. Was given a script for Darvocet, but only needed to use two of them. When I returned the device on Friday and had stitches removed, I truly didn't want to give it back. I got used to having that relief and am very conscious of the absence of it. There was a follow-up interview, and it was decided that we could go ahead with the actual procedure. 6 weeks has to be allowed to "heal" from the practice before they will go back in to install leads for the actual device. The Doctor said we could look at adding another lead to stimulate the minor occipital nerve (as well as the major occipital nerve) to see if we could reach more of the pain in the front, but cautioned me to make my decision based on the results already experienced, not any future expected results. As it was, the stimulator offered more relief than any medication, or combo of meds, that I have ever tried in the six years of CH. I am ready and fully comfortable with the decision. Any other chronics out there who would like to check into this, feel free to send a message. The trial procedur is easy, and if it doesn't help, you aren't locked into surgery or impalnts you don't need. |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on Aug 12th, 2003, 2:06pm Hey Vanassa, Sounds like things went very well for you. Congrats on getting relief. Hope this is the answer to your prayers!! I am printing out your message and will relay to my doc to see if this could be a remedy for me. Funny thing, ever since I took the Canadian Sansert I have had fantastic results. Not sure why or how but I have been cluster free for quite some time now. first time in about 15 years. I am savoring this. I am now completely off all meds (even oxygen which is unheard of for me) and feeling great. Still get migraines and headaches but (with fingers crossed) no clusters!! I wish and pray that is all over but common sense tells me it is not and when they start again I am taking all the information I have complied off this site back to the doc again for reevaluation. Also another good note, I finally found a job!! Yahoo!! It is only 20 hours a week but it is a good start with the Mass unemployment rate being at 9% one of the highest in the country. Of course they have no idea about my clusters, didn't dare say a word. Hopefully with just 4 hrs a day I can keep it a good secret........we will see........!! Wishing you the best and please stay in touch and let us all know how the permanent placement goes. DizzyD/Dawn |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Aug 26th, 2003, 8:58am DizzyD: Whoohoo! A job! A job! A job! I knew you were gonna impress someone with your stellar experience and job credentials! So HAPPPY for you! With the job market being that tough, I know it takes awhile. How's it going so far? You are working part time? Whatcha doing? Are you still getting relief from the Canadian Sansert? I'm in the "healing" phase now, that 6 week period where the skin heals up before they can do another procedure, ie, the Real Thing. Two more weeks and counting.... Who knows? These rotten headaches showed up out of the blue, maybe they will disappear just as suddenly. I know none of us would be sad to see them go. How are you doing? What's the latest from the Doctor? Vanasa |
||
|
Title: Re: I need to vent...more medical gripes Post by dizzyd on Aug 26th, 2003, 2:43pm Hey Vanasa, Actually I am doing really good with the clusters. I can't say what has happened, if it was the Canadian Sansert or what but as I said they have been gone for awhile. I am a little worried now that fall is coming along, that they may come back, but for now I am going to enjoy the pain free days. Actually I am completely off the Sansert and all other meds except execedrin migraine which is the only thign that controls my "other" headaches. So far so good. Wouldn't it be nice if they went away and never ever came back. What a blessing, I swear I would never ask for anything again. I am a realist though and more than likely I will be hit again, but this time I have a stockpile of Sansert that I have been getting from Canada, so as soon as they start I am ready and armed!! As far as my new job. It is not exactly what I wanted but the pay is pretty fair and I am easing back into working which is a good thing. I am an administrative assistant in the Cardiology Unit at the Lahey Medical Center. Basically I answer the phones and log patient information into a database system............blah blah blah, pretty boring. But it is a JOB!! And for that I am very very grateful. Full medical benefits, 30 days time off, (includes holidays and sick time) and I have the opportunity to earn more by working more hours. My eyes will stay open for all other opportunites but for now at least I can have a little bit of money for the holidays. It will be nice not to have to stress over that. Well, I wish you well with the healing process and I hoep in two weeks time when you go for the permanent placement that everything goes smoothly with little discomfort and most importantly that the clusters disappear forever and ever!! Best to you and the family. I hope that this ends your many years of pain and is a new start to a wonderul times with your husband and your son! DizzyD/Dawn |
||
|
Title: Re: I need to vent...more medical gripes Post by laterer on Aug 27th, 2003, 6:13am Hello, I am new to this forum , so glad I came across it. I have had the dreaded block, not the best amusment park ride I've been on . I also have had my implant now since June 13 2001. Anyone who would like to know more can simply ask away, as I am one of those dreaded GUINEA PIGS. |
||
|
Title: Re: I need to vent...more medical gripes Post by Amber-Artie on Aug 28th, 2003, 4:36pm My husband has CH and may soon run out of drugs and drug combinations to try. Could you tell me something about nerve blocks and implants? Thanks!!! |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Aug 28th, 2003, 4:53pm laterer: Thanks for posting! There are so few of us who are working on this, we welcome any new information that is out there. As you are further along in the process than any of the other fellow guinea pigs are, any information you provide would be helpful. I guess my big questions are: did the implant help the cluster pain? Did it help right away, or take awhile for the leads to get settled in? Do you have the Medtronic or the ANS implant? How long did you have CH before the surgery was done? Would you say the surgery was a success? Any complications? Would you do it again? Thanks in advance, V |
||
|
Title: Re: I need to vent...more medical gripes Post by laterer on Aug 28th, 2003, 6:27pm Hi Guys thanx for the warm welcome, I never had ch before a car accident in Jan 19,2000. Started with bad headaches and they said occipital nerve damage, which causes, "headache" that is combo migraine/chronic. So iI stated down the very long road , meds of all kids, nerve blocks and even had a Rhizotomy to sever the nerve. Well no such miracle so, I opted as a last resort to have the implant done. Though it haws changed my life fore the good it has not come without complications. Let's see I had 9 surgeries in 2001 and then lucky me got to skip 2002 and so far this year have had 2. The first few surgeries went well till the implant moved, and this is at the base of my skull (electrode part and then tunneled thru down to my chest to battery) Infection was the next problem, STAFF so bad I was home on IV for 8 weeks. Another downfall is with the battery, I have to have it replaced every 13.25 months, they usually last 2-4 years. They tried a bigger battery and implanted it in my stomach but it had to come out, too bad would have meant less surgeries in the future. I still think even after all those problems I would not EVER give it up. As you all know the simplest amount of time without a headache is the greatest thing. I have the medtronic SYNERGY and I've had the ITrel also by medtronic. I hope this is helpfull to you all. You can private e-mail if you would like. Di |
||
|
Title: Re: I need to vent...more medical gripes Post by hdbngr on Aug 29th, 2003, 10:28am Di: I have tons of questions, I hope you will bear with me....Was it a major car wreck? What meds did they try you on initially? How did you get the process of the implant started? Who was your surgeon? Were all 9 surgeries in 2001 related to the implant? Did they attribute the lead movement to heavy lifting, or did it just happen? Were you on a course of antibiotics following the procedure when the staph infection developed? Did you have to undergo the trial procedure before the actual implant was performed? Do they have an explanation as to why the batteries needed to be replaced so frequently? If you could give us a rough time line, diagnosis, resulting surgeries, etc, that would be helpful. As with all treatments out here, we need to hear the good, the bad, and the ugly. Thanks, Vanasa |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |