Problems with Neurostimulator

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volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 1/11/2008 7:18 PM (GMT -6)   
Ive had the permanent implant since before Thanksgiving now. During the trial one of the three leads slipped to a level below the other two. I had to have another procedure during the implant to have the lead put back in place and all three leads re-secured. My stimulation patterns have changed again and my fears were confirmed yesterday that a lead has migrated again. There are only two logical courses of action now. One is to have a surgical paddle lead put in by a neurosurgeon the other is to have the thing removed and go back on Morphine. I will probably have to travel to have the paddle lead put in since there aren't many neurosurgeons experienced with the procedure. But once put in the chances of slipping again are greatly reduced. As I understand it the surgeon will shave a trough in the vertebrae to secure the paddle lead. I don't know if it will be cemented in place or secured with tie wire. Has anyone else experienced this?

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1116
   Posted 1/11/2008 9:42 PM (GMT -6)   
I have decided not to have the stimulator implanted for just the reasons that you are having trouble with. I have read over and over that this happens more than the scs companies want to admit.
I'm sorry that you are having to deal with that. My understanding was that with the paddle leads they have to do a laminectomy to place the paddle leads and secure them properly.
Whatever you decide to do, I wish you a lot of good luck and skilled hands doing the procedure if you decide to go through with it.
Do you get enough relief to justify going through with that type of surgery to keep the stimulator?
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 1/12/2008 1:44 AM (GMT -6)   
I have had a SCS implant for several years now.  My first question to you would be how much pain relief did you realize prior to the leads migrating.  If you experienced a greater than 50% reduction in your pain level when the SCS was operating properly = than you might want to investigate paddle leads.  If you did not experience significant reductions in pain, I would probably consider removal.  The other thing to keep in mind is whether you ever consider yourself a potional pain pump person.  I have a pain pump and SCS.  The SCS unit discharge really bothers my pain pump at times.  I notice that I use my SCS unit at lower levels then most people because of the way the SCS make the pain pump feel.  I would have  the doctor or rep let you talk with someone that had paddle leads and get them opinion.  Usually the doctor or rep are more than willing to hool you up with someone.



Stella Marie

Dx:  Rare progressive neurodegenerative disease called Multiple System Atrophy (brain rot, autonomic system failure, neuropathic pain and a whole lot more).  Added improvements:  Intrathecal pump and a spinal cord stimulator and a new brand new power wheelchair with shiney horn,.

 Medications: Sinemet, Requip, Klonopin, Baclofen, Provigil, Lyrica, Fentanyl patches, Lidoderm patches, Dilaudid, Fentora and Zofran


volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 1/16/2008 4:06 PM (GMT -6)   
Thank You Sandi and Stella. Both are good responses which raise good questions. I'm not sure about the percentage of coverage since it seems the leads start the migration very soon. The coverage when they turn it on while I am still on the operating table is good but it starts dissipating soon there after. I stay as active as I possibly can in the pool and in the gym which is probably the reason for migration. So, I really don't know if I have given this thing a fair trial yet. Talking to someone who has the paddle is an excellent idea. The way my stimulator changes in intensity when I change positions drives me nuts but the paddle lead may help that. I didn't know they would do a partial laminectomy to put this thing in. I wonder what else I don't know? My pain doc thought the pain pump would be a better choice for me but I wanted to get off pain meds so badly so he agreed to the stim trial. Do pain meds administered via pain pump affect you the same way as taken orally IE do they affect you mentally? Back to my stim unit, I have to run it at a fairly high voltage to get any relief at all. some settings as high as 8 or 9 volts. Is that an indication of anything? Thanks again for your responses.
Have a Blessed Day!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1116
   Posted 1/16/2008 8:18 PM (GMT -6)   
My understanding with the pain pump is that the meds are directly put into the spinal fluid therefore eliminating the brain fog that comes with oral meds, but you do have to work through the adjustments in dosages to find the right dose and combination of meds to be delivered through the pump.
It is also my understanding that a laminectomy is done to put the paddle leads in.
If you have had leads migrate twice already, I would be concerned about them moving again. It seems to happen more often than the manufacturer's tell you it does.
I'm sorry that you are dealing with this.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 1/22/2008 9:54 AM (GMT -6)   
I am new to group and have not had a neurostimlator implanted yet. My doctor wants to place one. My background is 5 back surgeries ti include 2 fusions. My hips and left leg are as bad as they have ever been and I have been on every non narcotic pain medication as well as several narcotic pain medications looking for any relief. My doctor told me that the stimulator only works about 70 percent of the time in the trials. After the number of procedures I have had, the amount of time I have been in pain, I am a little concerned. What is next if this does not work. Is there anything left?
 
johnk

volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 1/22/2008 10:25 PM (GMT -6)   
Hi JohnK and welcome to the group. Has your doc mentioned the intrathecal catheter or pain pump. If the stim unit doesn't work for you the pain pump may be the next choice. If you read my first post my stim unit is giving me fits. I am considering the pain pump for myself now. Many people have both which has been mentioned to me. I would be willing to try most anything to get off opioid pain medications. That is why I opted to try the stim unit first. The pain pump is still putting narcotics into the system but without many of the side affects associated with taking them orally. Any way I am still waiting for pain docs and workers comp to make a decision. I am soooo tired of living in pain and everything that goes along with it. Keep us posted on how you are doing and if you have the stim unit or not. Are you being taken care of by a pain clinic?
Have a Blessed Day!

crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted 1/24/2008 1:38 AM (GMT -6)   

  Hello Everyone,

Just thought I would chime in on the scs debate...........

I had one put in 7 months ago, the surgery is tough and the leads have to be kinda perfect. 4 and a half hours later I was done with my first so called trial and as soon as I was in the recovery room they tried the unit out and all the wires had shifted and the scs unit was zapping my ass big time where we had to shut it off. I lived without using it for the next friday there was another 4 and a half hour sergury all over again. They put 4 wires up my back, and put 8 wires down my back and to make a long story short, none of the socalled programs worked well enough were you would say I'll use that one . Very uncomfortable unit after a while. I could'nt get it removed fast enough. I only got rid of it 2 months ago and it's a real relief its out.

I am only one person with my own opinion, this definatly should not make anyone not at least look into this procedure. I'm sure there are many positive cases as well.

                                         Best of luck everyone

                                                        mike


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11318
   Posted 1/24/2008 4:10 AM (GMT -6)   

Volfan,

I had a Medtronic Intrathecal Pain Pump implanted June of 05. Its the best thing that could have happened to me. I do not tolerate oral medication well at all, thats all drugs, not just pain meds. It went something like this for me, the ones that helped I had to take to many to get the pain level down, then if we found something else either I would have a full blown reaction or the side effects would get me. I tried morphine, oxycotin, oxycodone, fentanyl patches and it was just useless. Thats just naming a few I was tried on. Another problem was I had so much pain in so many different parts of my body, that my dr said no way meds could touch all that pain.

My dear dr totally forget I don't tolerate morphine, so what does he put in my pump, morphine. So, out came that. I am on a what I call a drug cocktail in my pump. I am on Dilaudid 15 mg/ml concentration level, Clonidine 150mcg/ml, Sufentanil 15mcg/ml and Bupivcaine 15mg/ml. The drugs are infused 24/7 and my doseage in 24 hrs is 3.645mg. Oh, I still have some pain, but its very tolerable and when it kicks up its with my back, I am able to get it right again with my muscle relaxers. I tend to overdo alot and get in trouble with my back. I have found my muscle relaxers are far effective with the pain than my 2mg Dilaudin pills I have for BT pain. By the way, Dilaudid is a very old pain drug and has less side effects than most pain relievers.

I am on way less medication than what I took a day orally. And I mean way less medication, my pain told me I would be and at the time I really was not sure. He made a believer out of me. One of my big problems is I have a very high pain tolerance and it always got me in trouble. I hated taking pills and by the time I would give in and take one alot of times it was too late to give me relief.

I do not walk around in a fog or goofy or out of my mind. What I love is no clock watching, no high and no lows its an even keel. I drive a car just fine. I play with my 2 1/2 yr old grand son and its great that I can do that, w/o the pump I would not being alot with him.. You don't sit around and nod off everytime you turn around.  

You do a trial on the pump. You will know during the trial if the pump will work for you or not. You have to go thru the physch testing for the pump, Remember in the very beginning they start everyone out in a lose and increase it as needed till the pain is under better control. For me its been a life saver. Susie 

 



Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 1/24/2008 9:49 PM (GMT -6)   
Thanks for the input guys. Stangeley enough, knowing that someone else is having as bad a time as I am somehow makes me feel better. Sounds sadistic I know. But I do appreciate you guys. My present "pain clinic" doctor immediately defferred to the neurostimulator when I asked about a pain pump. Truly, I am willing to try anything but I don't want to be limited to just the stimulator if the quality of life is not there. Mine original injury was also workers comp. They have been pretty good about things over the years. Complaining about them would not be right. I don't want to retire yet some I would like to find someting that allows me to remain clear minded. It is extremely important since I perform interrogations regularly. The best to you all, and I will let you guys know where I end up with the stimulator
 

volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 1/25/2008 6:16 PM (GMT -6)   
Hi Guys,
My records have been sent to a doctor in Augusta, Georgia and another doctor in Omaha, Nebraska. The doctor in Georgia is a personal friend of my pain doc so he may be willing to see me sooner. I discussed the possibility of getting the pain pump with my doc today. He feels that if the length of time until I can see one of the out of state docs is too long then a pain pump trial may be in order. I do have a problem however with going to a pain pump to get off oral medications, just doesn't make sense. Still pain killers in the system! Has anyone tried yoga or pilates to help with back pain? I did get to learn a little bit about meditation and self hypnosis at my pain clinic but only enough to be stupid about it. I do find both to be very interesting and would love to learn more.
John the stimulator is a royal pain in the a**, I mean literally. I had mine put in just before Thanksgiving and it still hurts when I lay on it, my belt rides on it, and really hurts when I hit it on something hard. Also having the leads slip down twice is worse than just aggravating. But, the surgical paddle may be just the ticket. Is your doc talking about the three lead Medtronics unit? That is what I have.
Good happenings to all and have a Blessed Day!

Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 2/7/2008 11:21 PM (GMT -6)   
With all the back problems described, does anyone experience pain in their legs and feet from water running over them or am I just strange. I have had different levels and types of pain over the years in different areas of my back down through both feet, but this is the first time I have ever felt pain from running water. I considered the possibility that some additional neurological condition may have set in but have not had a chance to discuss it with my PM doctor. It's only been happening for about a month. Anyone have any ideas? 

volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 2/9/2008 5:45 PM (GMT -6)   
Johnk,
Sounds similar to what I have experienced in the past in the leg where I have the nerve damage. My leg became hypersensitive in areas where it wasn't numb. It even bothered me if something rubbed my leg hairs. The condition has since subsided but will occasionally reappear.

Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 2/10/2008 1:31 PM (GMT -6)   
Thanks Volfan,
I know what yu mean. Some times I have to keep that particular leg out from under any covers at night. Dr.'s jsut say I have a lot of nerve damage, they don't say how this could affect you.
I do know that stuff like lyrica don't treat it very well. At least in my case anyways.

volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 2/10/2008 2:17 PM (GMT -6)   
Johnk,
Do you experience the stabbing, jolting type neuropathic pain associated with nerve damage? I do and neurontin or gabapentin helps with that. I'm on 800mg x3 and I can easily tell when it's time to take the next dose. The only drawback for me is how it negatively affects my memory. Bothers my wife more than it does me though.
Have a Blessed Day!

Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 2/10/2008 10:47 PM (GMT -6)   
Yes, I am afraid so. I am alot more familiar with that type of pain though. I've been doing this for about 15 years and I hate it. I did take nurontin for quite a while in conjunction with the lyrica. It seemed to do OK in at the start but unfortunately, I have a scar tissue problem which gets worse with time. I am hoping that the neurostimulator will somehow help with all this. If that does not work, maybe they can try the infusion pump.

volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 2/11/2008 10:16 AM (GMT -6)   
Sounds like we are in much the same boat without the paddle! I'm hoping the stimulator works for me too but I'm not as optimistic as I once was. I've learned of a few people who have both the stim unit and the pump. In fact there is a preacher not too far from me who has both and functions fine. Keep in touch and have a Blessed Day!

Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 3/5/2008 11:33 AM (GMT -6)   

Good morning all,

This is a report of a scs trial completion as of today.

I am on the last hours of the trial and this is what I have to report to all that are concerned.

I began my trial and for the first 24 to 36 hours, I completely observed all of the pm docs recs. and found that the scs did reduce pain levels about 30% to 40%. The drawbacks at this point are severe muscle spasms in my mid back and migraine headaches which I consevatively medicate. This was while lying in bed, resting and sitting in a lounger. Since this behavior is less likely to be conducive to actually "living", I chose to get up and do some light moving around. You know, going to the grocery store and walking around. The scs did assist and still does assist in mobility. It alone has extended my standing and walking time 3 fold. After about the 36 hours mark, I began to notice areas as high as my rib cage were being stimulated whereas the areas of pain in my low back and hips, the back of my left leg all the way to my foot and the back of my right leg to my knee were being were not being adequately addressed. Coughing and sneezing bring anohter issue. In my particular case, I was extremely fortunate to be holding on to a shopping basket when a small series of dry coughs hit. People looked at me as if I were falling down drunk. Hell, I don't even drink. Point is, I nearly fell several times because my legs became over stimulated and I could not control them. Lying flat also increases stimulation for whatever reason. On top of that, I am a long time migraine sufferer with migraine frequency one to two times a month "maybe". I have had two migraine headaches this week

The Advanced Bionics representative who calls me daily states that the migraines will eventually stop as I become acclaimated and that the leads have obviously migrated. But that the fix for that is the paddle leads which I found out requires a laminectomy to place and are only less likely to migrate.
My concerns are simply this:
I have a previously diagnosed scar tissue problem. Scar tissue from 2 laminectomies and 3 fusion surgeries have obvioulsy left some unwanted results. Does it make any since at all to have yet another laminectomy that will mosy likely scar and cause additional problems.
I am not sure if the issues I have faced in this trial are contraindications of scs use or normal growing pains in utilizing something new.
I am not an anxious person by any means, but I do find myself with anxiety over future pain management. Additionally the rep advised that with the permanenet implant it may take 12 to 14 weeks to ensure no additional lead migration takes place and for the body to become completely acclaimated to scs therapy.
Is it just me or does this sound like I have been speaking to a car salesman?
 

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1116
   Posted 3/5/2008 12:05 PM (GMT -6)   

It does sound like you have been discussing it with a salesman. I went for a consult for scs and asked the rep some very pointed questions about the frequency of lead migration, about the change in stimulation patterns from trial to permanent implant and why that seems to occur frequently, about other problems that I have read from others in regard to scs, and she either blamed the patient for "not following directions" as to why the leads migrate, or improper measurement by the implanting surgeon ( although she claimed that was the least likely reason). In regard to the change in stimulation patterns , she also blamed that on the patients and their moving, rather than it being an issue with the device or the leads.....having another surgery sounds rather simple to place paddle leads, but it's not their bodies that are being cut open again and you have to fight with the doctor for months to get that to occur, assuming that you have a compassionate doctor. Many scs implant doctors seem to feel that once you have one, the need for medication is no longer, which seems to be furthest from the truth from what I have read and seen posted by others.

My best recommendation is to do your own research. For John, have you ever been diagnosed with arachnoiditis? From your description of the water running down your legs /feet , I was just wondering?Anyway, good luck with whatever you decide to do.....I'm sorry that you have to deal with this to begin with.

Sandi


PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 3/5/2008 5:19 PM (GMT -6)   
Thanks Sandi,
 
I just returned from my pm doc. While there the reps initially re-programmed the stim unit and actually it worked better than it did the day they put it in. When the topic came up about the introduction of the paddle lead. the pm doc advised that he does not allow his surgeons to perform the laminectomy which removes a large portion of the lamina. He advised that he has the surgeon only shave the underside f the lamina to allow him to insert the paddle and stitch it to liigaments in the area to keep it in place. In addition with a total implant, he says there is more give in the lead lines for movement. When I advised him that I had no intentions of allowing  a surgeon open yet another 5 to 6 incision for what he is calling a laminotomy. My pm doc laughed and stated the incision was only 1 1/2 to 2 inches in length. My doc asked if I would consider having the implant and make a decission 3 months down the road as to it effectiveness. I told him that I would consider it. My pm docs reasoning was this. Although, I did not get 50% or better on all pain relief, I did improve considerably in functionality. And I will say that even when the trial stim was not working at it's best, it did make it easier to be mobile. My doc also stated that we may have to look at either the addition of a pump if my hips continue hurting or the stim is not effective enough for functional purposes. I was impressed at his concern and willingness to continue trying to give me as much relief as possible. I was also impressed at the reps ability to determine exactly how much one of the trial leads had moved. It became apparent as the leads were being removed and oneof the leads had fallen down exactly the distance his program advised. More importantly, even when the leads were off target, he was able to re-program the unit to actually perform better than originally. So, I think I will try it for a few months. What's a few months compared to the last 15 years anyway? I hope I don't need this, but wish me luck anyway.
 

KatV
New Member


Date Joined Mar 2008
Total Posts : 3
   Posted 3/6/2008 12:51 AM (GMT -6)   
I have been considering the stimulator and/or morphine pump. Everything I read scares me to death. I now have a fentanyl patch and have used for about three years. I get pretty good pain relief but have to take lortab ever so often. I just worry about coming off thepatch. How do they accomplish this switch from patch to one of theothers? I am new to this forum stuff but am thankful I found it.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1116
   Posted 3/6/2008 3:24 AM (GMT -6)   
Good luck John,
I truly hope that you continue to see improvement in function and hopefully can add some real pain relief to that equation.
It is the hardest decision to make, in regard of whether or not to have it implanted, or even to submit to the trial, and reading some of the mishaps with them can really make you question whether or not it is something to consider.
I hope that you are one of the fortunate ones, and I hope that they can get Voltran's problems with it straightened out as well. There are a few people that I have talked to over my time researching them that have had good experiences with pain relief, but that does not seem to be without a lot of problems getting there....
I wish you both the best.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..


volfan
Regular Member


Date Joined Nov 2007
Total Posts : 58
   Posted 3/9/2008 1:50 PM (GMT -6)   
Hi All,
I was scheduled to have the paddle lead put in at Augusta Ga. on the 20th of this month. But, the hospital where the neuro performs this surgery decided they weren't making enough money off implants so they canceled the program. When the doc told them fine and that he would take his business elsewhere they decided to take another look at it. Now if the doc in Nebraska can't work me in it will be at least another 45 days. Isn't it a shame when they make all the decisions by the bottom line and take us the patients out of the equation completely.
I wonder how the accountants would react if they were the ones suffering from chronic pain?

Have a Blessed Day,

Volfan

Johnk
New Member


Date Joined Jan 2008
Total Posts : 10
   Posted 3/10/2008 8:52 PM (GMT -6)   
Hey Volfan,
Glad to hear things are at least moving at some speed and direction. I am also waiting the paddle surgery which should be in the next xouple of weeks. Chronic pain is one of the odities that most people don't understand and truly can't identify with. It's hard for them to believe that the reason chronic pain is so bad is because we endure it for so long. Me for instance; it's not that I feel the worst pain I have ever felt in my life, it's the fact that I have been feeling this pain for such a long time. Good luck my friend and I hope we are both the better for it.
 

kapt
New Member


Date Joined Mar 2008
Total Posts : 2
   Posted 4/3/2008 5:28 PM (GMT -6)   
Hello, My heart goes out to you. My own leads (for occiptilal neuroalgia) have migrated in the past. I have needed several surgical procedures to correct the problem, but they have been worth it to me. Any relief is better than none. My first stimulator was in for two years and had to come out because of an infection. The second stimulator which I have had for about two years had to be repostioned three times. It has two leads and because of my occipital nueroalgia is located on the back of my skull. I hate to be depressing, but I am now having a new problem. Have you ever heard of a stimulator not turning off for hours (8-9) after turning it off with the paddle? Both my pm Dr. and the tech from ANS say they have never heard of this happening. Have any of you heard of this? I still hold out hope because the results when it works are great in combination with my meds. Good luck to all, I know how difficult this can be. MK
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