Anyone considering pain pumps please read

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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted Yesterday 3:41 AM (GMT -7)   
Hi Everyone,
 
I went to my pain mgt dr last Monday only to be informed he is leaving pain mgt and going back into anesthesiology. Talk about a blow, I just broke down and cried on the spot. I have had great success with this dr and actually trusted him, so its been really a bad week for me.
 
Now about the pumps, if you have a pump implanted and your dr leaves or moves on or whatever, be sure your dr finds a new dr that is willing to take you on as a patient. I have someone who is taking me on as a new patient. According to my dr its next to impossible to find another dr willing to take an existing pump patient on. They only want patients that they have had the pump implanted for. He did not go into any details but I have some ideas of my own. I know Medtronic supposedly has a list of pump drs but I just learned that their list is so old and outdated most of the drs are gone. I know of someone on another forum that is trying to find a new pump dr and is being told no on every call. Its scarey but its something to think about too.
 
Hope everyone had a good t-day. Susie


crps
Regular Member


Date Joined Oct 2006
Total Posts : 174
   Posted Yesterday 4:12 AM (GMT -7)   

HI straydog,

Incredable post!!!! These are rhe kind of things that have so much importance to anyone(which is alot i believe) that has been staring at the cieling all night contemplating the pumps advantages vs the disadvantages. Thank you so much for the upfront honesty. I'm sure that has alot of people asking about this possibility when they consider the pump.

 

                                 Hope Everyone Has A Pain Free day!!!

                                                        Kind Regards,

                                                             Mike shocked

 


 


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted Yesterday 9:19 AM (GMT -7)   

Straydog, I am so glad I read your post today as I am going to my pain management dr and I WAS considering the pain pump. now I am going to have a serious conversation with myself idea , that is asomething to think about...thanks

Patty


 
 Degernative Joint disease, Depression,severe Hypertension, Ulcers, Nerve damage,OA, stroke & blindness in left eye
  Prozac 80 mgs, Synthroid, Ultram, Metroprolol, Lipitor, Norvasc, Vicadin, Benadryl (for sleep)__Vitamin D&K
  Bilaterla hip replacements, Bilateral knee replacements, Titanium Spine Fusion (L4-5)(4 spine surgeries)Oblation for SVT(supra ventricular tachycardia) Biopsy of left Optic Nerve, left shoulder surgery, revision of left hip
The hardest lesson in life to learn...Is which Bridge to cross and which ones to Burn.
 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted Yesterday 12:21 PM (GMT -7)   
Susie Que ...
Oh, thank you.
I am sorry for the way
things turned out for
you.
You will go on and
maybe things will get
even better in a time.
It is scary.
Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted Yesterday 7:52 PM (GMT -7)   
yeah  I have some questions about pain pumps...First of all, when you go from taking pain meds for years to a pain pump do you go through withdrawls?  I know it might seem like a frivolous ??? but that worries me.  I don't want to go through the withdrawls if I switch.
 
Also, how do they actually work?
 
Me. smhair nono

 
 
spinal stenosis,degenerative disc disease,bilateral neuropothy.
lamenectomy L3,L4..spinal fusion L4-S1
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted Yesterday 9:00 PM (GMT -7)   
Hi Me, no, thats a very good question. I did not go thru any withdrawals when my pump was implanted. The meds that go in the pumps are much more stronger than orals meds to begin with, the catheter is placed in the intrathecal space where the pain receptors are located that sends the pain signals to the brain. The medication basically drips in this space. I am on much less pain meds w/my pump and it also bypasses the liver. Try thinking of it in terms of being given IV pain meds instead of orals meds but w/o any drowsiness or feeling goofy. Now, we did a couple of people who posted here that they went thru w/d, but those people were on really high doses of orals meds too. At least thats what they posted. I just really can't fathom a dr voluntarily putting his patient at risk. I was also given BT meds and still receive them in addition to my pump. I suggest that you ask your pain dr about the withdrawl thing and if he gives BT meds with the pump. Some drs do not give BT meds with the pump. Also, ask your dr if he decided or something happened that he was not going to be seeing his patients, does he have a backup dr that will take care of his patients. 
 
You are started out on a low dose of pain meds when the pump is initially implanted. Alot of drs will see the patient every two weeks and slowly increase the doseage. Ask your dr what his schedule is regarding increases in the pump. This has to be done slowly to make sure you are going to tolerate the meds ok. My system does not tolerate medications well at all. I am not speaking of pain meds either, its any medication. I either had allergic reactions or terrible side effects and we ran out of pills to pick from. My pain was also in so many different parts of my body that one pill could not handle it all. This is why I have the pump for chronic back pain. I have Dilaudid, Sufentanyl, Clonidine & Bupivacaine combo in my pump. My meds come pre-packaged in one large syringe from a pharmacy to my dr. I highly suggest this form of getting your pump meds too. I do not like the idea of a dr playing pharmacist with different vials of medication to mix in his office for the pump. He can program your pump in any manner needed to release certain meds at whatever rate. I take Dilaudid for BT meds.
 
The pump has been very good choice for me. I am much more mobil and functioning at a much better level than previously and in alot less pain. Oh yes, I still have pain, always will, but it at a level I can tolerate. If I have a bad day its usually from overdoing it. I am my own worst enemy in this situation. The pumps are not for everyone to say the least. For some like me it can be a life saver. I will say that if a person has ran the gambit of drugs, procedures and failed surgeries and no surical people & still no relief and they have no quality of life, then the pump may work for that person and in my opinion its very much worth trying, you have nothing to lose and maybe alot to gain. I am the type of person that will try anything reasonable if it will give me the possibility of having a better quality of life. I do not limit this to just chronic pain, I have many other health issues. Alot of people are afraid of the pumps and those people do not need to have one. My pump is on recall simply because of the model number, my pump works just fine and I have no intention of having it taken out and replaced. If it ain't broke don't try to fix it and my dr agreed. A good pump dr knows what to look for in a pump that my be starting to malfunction. There are alot of uneducated pump drs that are using the wrong medications in these pumps and causing many problems for the patients including granulomas at the tips. This is from using too high of a dose or the wrong medication. Not just any drug can be used in a pump.
 
If you have anymore questions please post them. If I can help out in any way I will. Susie


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted Yesterday 9:54 PM (GMT -7)   
Susie, i just had a conversation a few days ago about having the pain pump put in next month! i actually called a nurse friend of mine to ask the very question about withdrawls earlier this evening! unfortunatly, she has only dealt with one patient with a pain pump.... but how happy am i that i logged on to see this very topic! i am currently on oxycontin 80's, dilaudid 8mg, zanaflex 4mg & phenergan. (you can see all my meds but those are the hard core ones) my dr was explaining that since i am allergic to sulfa, it rules out almost all the fast acting medications... we then talked about the pain pump & he said it would open up a different world of medication for me. i have had dilaudid IV before & i have to admit i was a little high from it. my pills don't give me that feeling, in fact i don't think they are strong enough. anyhow, my dr said they do a week trial & if all goes well, then they install it. i have done a lot of online research- i mean i take it as a very big deal. but i also like the thought of "less" meds & easier bathroom issues. (thats what my dr said- it helps with the constipation issue) he also said that since i am so young & will be on meds the rest of my life its a good idea. can you tell me more about it? what was the procedure like? have you had the same meds since installed? do you get that high feeling? how about sleep? do you have a port? anything you can tell me would be great! (and no chances of my drs quitting, there are about 8 in 3 locations here with their own pharmacy) thanks!
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/3/2008 5:44 AM (GMT -7)   
Kttn I can only say if you have a good dr and he knows his medications then you should not go thru any withdrawals at all. No, I do not feel high, fuzzy headed none of that. I am able to drive a car and do anything I want with a clear head. I babysit my 3 yr old grandson alot and sometimes I go pick him up to save Mom some time. If for one moment I thought my senses were off the slightest there is no way I would drive him anywhere and I would not keep him for the day. If I am real tired, I make his Mom come after him or hubby will drive him home. Also if I am needing BT meds or muscle relaxers I do not keep him on those days either. He requires alot of energy and attention and I really have to be on my toes to keep him. I would never for a moment keep this little angel if I did not have all my faculties about me for the day. I am truly much more clear headed with the pump than while on orals. If the meds in the pump make you feel high or whatever, then you are getting too much medication.
 
A pain pump opens up a whole new world of better choices of meds for pain control. We were so limited with oral meds for me and we were getting down to the fine line of running out of different ones to take. I just have this goofy body that does not like medication period. Yes, I was on many different heavy duty oral meds before having the pump put in. One thing I want to bring to your attention because this is something I did not understand. Your pump does not take care of all pain. What I mean by that is actually 2 things, 1. you will never be pain free and will always have some pain but you will be able to tolerate it and function much better; 2. I had to have 2 root canals done recently, and had to take my BT meds for the pain. Of course this was done with my pain drs permission. I declined meds from the dentist because he does not understand medication like my pain dr and I needed someone who knew what would work with the meds in my pump. Thats why before having the dental work done I discussed it with my pain dr. As it turned out my pain dr said my BT meds should work fine. I hope I have explained this well enough w/o confusing you.
 
Now about the surgery. It took me about three months to fully recover. Keep in mind I have crohns disease and some of my medications for it has lowered my immune system something awful. Last year my PCP had a lady in the office with the flu and she had the lady leave her office before she would let me come out of my room to leave, plus she the girl wipe down the counter where you check out. I basically have no immune system. I do Remicade infusions for the crohns and this interferes really bad with the healing process. I think with most people its about a 6 week recovery. I will not lie on this one, I did have post surgical pain-no the pump does not take care of that pain so you will need your BT meds. But, I was able to manage with the BT meds. Do not wear anything tight fitting in the waist at all. So, stay out of your blue jeans until you are healed. You are not allowed to shower until you see the dr for the 1st post op visit, he will tell you then when you may shower. My husband says the scar on my back is about 6 inches long, its on my low back, that was where the catheter was placed. The scar on my stomach is absolutely the ugliest scar I have on my entire body. I had a terrible surgeon in my opinion. He certainly had no experience with cosmetic stitching,lol. I have about the same size scar on my stomach. My pump is above the waist line kind of on the side, they use to implant them lower, but people were wearing tight clothing in the waist and it caused alot of the pumps to flip, so they started implanting them higher up. Now, I have read recently on another forum the pump people had binding they wore until they were healed from the surgery and I can believe that would be of great benefit. The pressure of the binding helps keep everything in place and there is less worry of anything slipping. Plus the pressure of the binding really feels good, it does not hurt. It like having a pillow to put against your stomach after surgery when trying to cough or get up. Until healed keep a low activity level.
 
I hope I have helped, anything else please post it and I will check back. Oh, you may have 3 clinics but will any of the drs in those clinics see another pain docs pump patient-thats a real problem with the drs. Check with your dr please. The other 2 drs in the clinic where I go will not see each others patients. Take care, Susie


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 12/3/2008 9:18 AM (GMT -7)   

Susie, I am so thankful I saw this post. I am going to a new pain management Dr on the 18th and I wanted to discuss the pump. You have answered so many questions for me, so I can have time to think about this BEFORE I talk to her. Thank you for the detailed information. this has been a great help.

I go in monday for the lap band gastric weight loss surgery in hopes the weight will take some relief off my joints and maybe that can help with the pain also. I have not posted on here for awhile as I had shoulder surgery and then have been so depressed from pain.

so again Susie ......Thanks Patty


 
 Degernative Joint disease, Depression,severe Hypertension, Ulcers, Nerve damage,OA, stroke & blindness in left eye
  Prozac 80 mgs, Synthroid, Ultram, Metroprolol, Lipitor, Norvasc, Vicadin, Benadryl (for sleep)__Vitamin D&K
  Bilaterla hip replacements, Bilateral knee replacements, Titanium Spine Fusion (L4-5)(4 spine surgeries)Oblation for SVT(supra ventricular tachycardia) Biopsy of left Optic Nerve, left shoulder surgery, revision of left hip
The hardest lesson in life to learn...Is which Bridge to cross and which ones to Burn.
 


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/3/2008 10:19 AM (GMT -7)   
Susie, thank you so much for all of the fantastic info. I was looking on medtronics website yesterday & it says there is a pump with almost a remote control looking device so you can get "extra" shots of pre-loaded meds for BT pain. I had expected some pill for the BT meds, a lot of online articles suggested that most people still recieve them. But I was very happy to see the new device with the remote. When we (the dr & I) talked about how much better it would be on me physically (the constipation, the liver, etc) I was so happy. I feel like a freak of nature that I have such a high tolerance to pain meds..... it is embarassing when I have to go someplace (like er, or gyn) that treat me like I am a drug addict due to the meds I am on. I know most people can relate- its just so embarrasing! And as far as scars.... who cares! I have some from a gallbladder surgery anyhow. As long is there is some pain relief I would go through almost anything. I was also very glad about the non-fuzzy felling. Thats fantastic! And I also expected some amount of pain, the dr in the beginning had said there was nothing that would ever take it away 100%. I think pain is normal when you have something wrong, its your body telling you something. Not saying I enjoy it.... no way huh-uh. And the drs at my office will see any patient that is there, not a big deal at all. They have a large staff & nurse practioners as well. So is not unusual to get a different dr when they are busy. I just prefer the same one. Hes close to my age (early to mid 30s) and also suffers from chronic back pain. So its nice to have a dr who actually GETS IT!! Thanks for all the great advice & info. I really appreciate it. And can I ask what all is in your pain pump & what the meds are for? Is it just for pain or can they put muscle relaxers in there as well? I know when dr & I talked about it, he began to throw out all these meds I had never heard of. And also, did it help with constipation? Thanks a million & I am so HAPPY you can handle your grandbaby. I want children someday & since I could never possibly carry I would like the option to adopt. Its just seemed so impossible with all the pain & pills I go through. Thanks again & I can't wait to hear back from you. You have been a ray of sunshine today! (and I live in FL- that says something!!!) :)
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/3/2008 11:32 AM (GMT -7)   
Moondancer, yes I do remember you from before and I am so sorry to hear you had to have shoulder surgery. Gosh, I have heard its one of the most painful surgeries a person can have and thats putting it up there with back surgery. Kuddos to you on the lap band surgery, my hubbie is in desparate need of this surgery and we cannot get the ins co to approve it. His cardiologist has even written letters to the idiots and its always the same answer. My hubbie is terribly overweight, diabetic, has heart fibrilation (?) spelling of that one. His dr said most of this would improve with weight loss. He is beyond diet programs, the only thing that took weight off of him was Phen Phen.
 
Did your previous dr recommend the pump for you? I know there has been some negative things said on here about the pump. But for me its been a life saver. My own pain dr that recommended the pump to me is leaving pain medicine and I will be seeing a new dr. She is a neurosurgeon and does pain medicine as her secondary. I do not know this dr personally but I do know of her and know that her patients were always very loyal to her and just loved her, so at least I feel this is in my favor. I am 56 now and I do not handle changes well at all,lol. Please make a list of questions to ask your new dr so you don't forget something. If there is any other questions that I can possibly answer please feel free to post them. Hugs, Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/3/2008 12:32 PM (GMT -7)   
Kttn, yes there is a pump that is designed to let you give yourself a bolus. I have had my pump since June of 05 and at that time there was a new pump out that the dr could program to say at a certain time every day I would receive a bolus. Lets say I had terrible pain every day at 6:00. He could program the pump to give me a bolus every day at 6:00. But, for reasons unknown my ins would not pay for that model. I imagine it was the cost of the pump, they are always going to pay for the cheaper model. But to be truthful I really did not need that feature. If I had severe pain I could call my dr and go in and get a bolus. He could program my pump to release extra medication and set the rate slow enough for me to be able to drive back home before it hit. It was a 60 mile round trip for me. But, with the rate being slow enough the severe pain just sort of melted away and I never got goofy feeling or anything like that. Thats why I love the pump, no high, no lows, no fog, no fuzzy feeling or balloon head none of that crap like I did on oral meds. Best of all no clock watching.
 
Now, the only thing I know they put in pumps for spasticity is Balcofen. I do know many people with MS has pumps and they put Balcofen in the pump for them. But to say to use Balcofen as a muscle relaxer I cannot say. I too use Zanaflex as a muscle relaxer and I am on the 4mg too. My dr says you can go up to 36 mg a day on Zanaflex. When I had taken a bad fall once I was taking them every two hours. Now I use them every 4 hrs when needed. I use way more Zanaflex than Dialudid for BT pain. I find I have a big problems with muscle spasms and get rid of the spasm and I get rid of the pain. These are the 1st muscle relaxers to ever help me. I have a very high pain tolerance therefore, along with that and being my own worst enemy, thats how I get into trouble with overdoing it. By the time I take something the pain is so escalated and that its a little difficult to get the pain down. My pain dr says that the trouble with people that have a high pain tolerance.  Our pain scale is so much different than a normal persons.
 
Here is what I have in my pump; Dilaudid concentration level of 25mg/ml, Sufentanil 25mcg/ml which is an opioid analgesic, Clonidine 150 mcg/ml which kind of like an anti-anxiety med I think, I will look it up, & Bupivacaine 15mg/ml and its like Marcaine or Novacaine the dentist uses. Check out my doseage per hour and day and this will blow you away. The pump releases 0.182 ml an hour and a total of 4.379 mg in 24 hrs. Now you know why the liver loves the pump,lol. Keep in mind these are compound drugs and the syringe comes prepackaged and loaded for each refill. My dr never mixed my meds himself and I don't think they should, they are not pharmacist. In the pumps you are receiving pure drugs, not something that has been diluted down thats why we don't need large doses. Plus the drug is delivered straight to your pain receptors in your spine that sends the pain signal to the brain. Think about it, if we were given the IV doseage they give in ER's we could not function, we would be laying down most of the time and we would build up a tolerance I think very quickly. These medication work so much differently than pill form. I started out with a concentration level of 10mg of Dilaudid in my pump and over time its been increased. My attitude with my pump was for me to get myself pretty much off of all oral pain meds and let the pump handle what it could. Initially, my dr put Morphine in my pump and I could not tolerate it, so we changed it out. Dilaudid is an old drug but its very effective for pain and great in pumps with few or no side effects. Add the other drugs to the mix and I have a good cocktail,lol. Susie


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/3/2008 6:52 PM (GMT -7)   
Susie, I can not tell you how much I appreciate this! I was going back and forth... I saw a little old lady one day in the drs office screaming about withdrawls, and she was on the pump. I could not for the life of me figure that out. I didn't think there was a way to "cheat" the meds? Unless she just didn't keep her apt? I donno. I know the dr through out baclofen & I think the bupivacaine sounds familar too. I'm glad you get the whole high tolerance to pain meds..... I feel like a weirdo. Its like nothing works & if it does no longer than a week or two. I like the zanaflex too, it works wonders with the spasms. And it helps me sleep at night. Great drug, much better than soma. And, I have to see a neurologist, my dr thinks I may have MS. As if this isn't enough..... ugggh. Well I will cross that bridge when I get there. Thanks again for all the info. And I am glad it works well for you!
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/3/2008 9:23 PM (GMT -7)   
Even with the new bolus pump it has to be programmed by your dr because a bolus throws off your refill date unless the pump is programmed correctly. The bolus really is not a large amt released, these pumps are about the size of a hockey puck. The pump is not designed so a patient can just sit and give themself a bolus whenever they want it. The little ole lady must have missed her refill appt-wow, the only way I will miss mine is if I am dead and I won't need it then,lol. Every time I had a bolus given or an increase in my pump it affected my refill date.

Oh and when you do the trial as a rule including me, I thought I had died & gone to heaven. Its been so long since I have been pain free like that. Do not expect it to be that way when you first get your pump. They will titrate your dose till you are at a reasonable response. It took a year to get me at a decent level because of my breathing difficulties the meds can suppress the respiratory system, had to go slow & be careful. For a long tme I was only getting half the amt of a normal increase. Yes, I got disgusted and wondered if I made the right decision. I think at one point we all go thru that. Then finally I told my dr maybe I made a mistake and he started giving me full increases under close supervision. Have you done your physch eval yet? Keep us posted. Susie


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 12/4/2008 5:33 PM (GMT -7)   

Susie, Thanks for answering back to me. I have taken your advice and started a list of questions to ask the pain management Dr. when I see her and one of the first is what to do if she leaves! I do not know yet if I am a candidate for the pump.

I am excited about the lap band surgery and I have medicare, as I am on SS disability.(I am 57) They approved it right away as they figure they have spent so much money on my joint surgeries and the fact that my dr. can not get my blood pressure down. I am amazed that your husbands insurance will not pay for this, as they are now using this very surgery as a cure for diabetes, and heart problems. Don't give up, keep appealing it. I had to show 6 months of weighing in at the drs office, and tell them about ALL the diets I have tried, over the years that did not work...good luck to hubby. Monday I have the lap band implanted, I will let you know how it goes after I get home from the hospital.    I guess I will have to send all my M&M's to PAlady now devil    

Patty

 


 
 Degernative Joint disease, Depression,severe Hypertension, Ulcers, Nerve damage,OA, stroke & blindness in left eye
  Prozac 80 mgs, Synthroid, Ultram, Metroprolol, Lipitor, Norvasc, Vicadin, Benadryl (for sleep)__Vitamin D&K
  Bilaterla hip replacements, Bilateral knee replacements, Titanium Spine Fusion (L4-5)(4 spine surgeries)Oblation for SVT(supra ventricular tachycardia) Biopsy of left Optic Nerve, left shoulder surgery, revision of left hip
The hardest lesson in life to learn...Is which Bridge to cross and which ones to Burn.
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/4/2008 6:57 PM (GMT -7)   
Patty, I sure will be thinking about you come Monday. I am so glad you were able to get your surgery approved. I will also say some extra prayers for you. I look at the long & short of the lap band surgery, if a person has illnesses that it can help, it would cheaper in the long run to pay for the surgery than paying for medication over an extended period of time. Not only that but developing other health problems, its just so disgusting these days what ins com can & do to people.
 
I know when my husband retired, his employer said we would have the same benefits as we had as an active employee. Boy, did they lie, we lost our vision & dental right off the top, lost our MHMR benefits, our monthly premiums are outrageous, our coverage stinks, paying 4 times the copay for a specialist, doubled the cost for a PCP, $200 yrly deductible, $1200 out of pocket before they pay 100%. We had none of this when he was working. They really put the screws to the retirees. With a script card that has gone out of sight on the cost of a script, I am spending almost $600 a month for my medications. My crohns meds and  respiratory meds no generic available. I ended up eliminating some of my medications and still pay all that out a month. Jeez.
 
Oh, I thought of this also, ask the dr when titrating your meds in a pump if she does it at 2 week intervals. This allows enough time to go by to see what kind of improvement is made with your pain and to see if you have any side effects from the meds.With Dilaudid being the pain med in my pump I started out with a 10mg doseage, then increased it to 15mg and in Oct he raised my concentration level to 25mg and that really did help.
 
Is your medication not covering your pain? Or are you like me, I had so much pain in so many different areas of my body that my dr said no way could a pill handle all of that. I am beginning to calm down a little over this change in drs I am going thru. It just threw me for a loop. I talked to the lady that handles the insurance in his office and she said everyone at the clinic is just devastated, as none of them knew of his plans to leave either. I am 56 yrs old and I am just too old for surprises like that one,lol.
 
Hope you have a low pain evening. Susie
 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/4/2008 7:52 PM (GMT -7)   
Patty,
We'll all be thinking about you Monday and sending good, healing thoughts. I hope everything goes smoothly. about those M&M's....I think I need to find someone else to feed them to as I'm putting on pounds myself - pounds that I worked so hard several years ago to get off. I know it's the lack of activity and lethargy from the meds and back issues, and now I'm using food for comfort. We'll find saomeone to eat those M&M's, I'm sure! rolleyes

Susie - to put the little faces (emoticons) in your posts, click the post reply button rather than just filling in the box at the bottom of the page. I hope that makes sense!

I don't blame you for being anxious about switching doctors; even if you have a bad one, at least he/she's a known quantity. Starting all over with an unknown for those of us who need a lot of medical management IS scary. smhair

PaLady

kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/4/2008 8:10 PM (GMT -7)   
Moondancer- congrats on the lapband surgery! I had seriously contemplated it once under reccomendation from my PCP. I went to 2 different "state mandatory" presentations & I am very glad I did. The first dr made it sound like a walk in the park, whereas the second gave all the gory details. I just decided it wasn't for me. I too have flipped on and off meds (and before the injury) had a physical trainer..... I have been struggling, more like yo-yoing all over the chart for about 8 years. I have done a diet before through a dr called the Zone, it was also provided with phentermine suppliment, a cocktail of vitamins to help keep you full, and other things as well. It was a weekly ordeal but the weight was falling off with no exercise. I actually lost about an average of 10 lbs a week. Unfortunatly at the time I was on duragesic patch & some anti-depressants & had a very bad reaction.... even though the dr assured me I would be ok. I was bummed cause I was learning to eat correctly, weigh portions, lean meats, etc & it worked. There was some foods I missed (pasta) but eventually you can bring it back. My pain clinic has actually opened a weight loss center as well & it is very similar to the zone but with pre-packaged meals (I see the ads while I am waiting & the food looks good) so once I get settled in I hope to get back on it. I just thought I would throw this diet out as it isn't hard really if anyone wants to look into it. Of course, get a dr to help. But, I am very happy you are on your way to feeling better at least in one area. I hate being overweight its the one thing that really bothers me. I hate the looks & not being able to buy clothes that are cute. I wish you the best of luck & I have had a few friends who have done it & have done fantastically. My only question is how will you be able to work out? Or is that not an issue with your pain? I usually use the pool but its even too cool down here in FL to get in right now. Good luck & keep us posted!
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 12/5/2008 12:45 AM (GMT -7)   

Thanks Everyone for the kind words....

PAlady, I know the feeling of comfort eating, I have been doing that for years and just couldn't shake it. I have tried everything. I know I will never wear a bikini again nono   but I just want to be able to walk without so much pain on all these bionic parts. You just keep enough M&M's for medicinal purposes. I know the feeling of not being able to excersise as well. Gee, I can barely walk, and not without my cane. I hope this helps..thank you again for the encouragement I really need that as I am scared.

Susie, with this recession coming on us. those of us who are poor or middle income are only going to get poorer and the rich richer. unfortunetly our Health Insurance is not anyones TOP priority and that is so sad. there are so many people that need healthcare and can't get it...BUT to work and retire, and get screwed on the insurance is really PATHETIC. I wish you luck. I am lucky to have SS Disability or I don't know where I would be. I too have about $750 in prescriptions a month but my medicare pays all but $2.25 for generic right now. In Jan it will go up to $10 each. My husband does not have insurance at all ( he is considered self employed). I wonder how they expect us to live on a fixed income of $1,000 a month after working since I was 15 years old???

Kttn, Thanks for the words of encouragement...I am actually very scared, but it seems everyone I have talked to says this is the way to go after all else fails..and believe me they have failed. I know it is not for everyone, but at least I have comfort knowing this one is reversible if there are complications. I can not excersise very well. I can barely walk a block with a cane with out crying in pain. It sounds like this Zone idea worked for you, and I hope this other one does to. somehow I keep hoping losing weight will help ease the pain..BUT with so many joints replaced, and scar tissue pushing on my spinal nerves. who knows.

Again thanks for the words and the prayers and I do pray everyday for each of you here that you each get your desire for Christmas and I know it includes at least a few pain free hous....Blessings, Patty


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/5/2008 9:32 AM (GMT -7)   
Patty I am going to start a new thread on dieting for you, I don't want us in trouble for an off topic on the thread. :)
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/7/2008 9:21 PM (GMT -7)   
Patty tomorrow is the big day for you. I will say a prayer for you tonight and I just feel it in my bones that you will be just fine. I was never heavy like I am know untill I started on all of these medications.
 
Another thing they did not tell me was I would put on weight from the meds in my pump. I was talking to the nurse one day about how all of a sudden I am gaining weight and I eat so little because of my crohns disease. I have to be so careful what I eat because of it and I am very limited. By rights if I was not on these meds I would have been losing weight rather than gaining. I have lost a little over 30 lbs since March and my gi is running some tests on me. I think at this point my problems with eating have become more physchological than anything and that can happen. My gi is always asking about my eating habits and I am honest, some days I do not eat. My PCP is worried that I will get sick because I am not eating right and my sleeping is almost non-existant. She knows my crohns meds knock my immune system down to nothing so she is very concerned. When the flu season hits I will hibernate. I always do.
 
Please let us know how you are doing after your surgery when you are feeling better. If possible have a friend at least post and tell us you are ok. Hugs, Susie


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 12/7/2008 9:26 PM (GMT -7)   
This is one of those post subjects that should stays near the top
as it has so much info, sure hope y'all keep us up to date on this pain pump info.
Thanks for starting this..
and lots of soft hugz to everyone considering or needing this surgery.
Prayers and sot hugz......
Wish the Doctors would explain this procedure better to us, Thank you...
Thank You...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********

Post Edited (Chartreux) : 12/7/2008 9:31:32 PM (GMT-7)


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 12/8/2008 12:55 AM (GMT -7)   
I have a pain pump.  about 2 years after the implant, my relationship with that doctor began to break down.  I have heard that it is next to impossible to find another pain doctor willing to care for you - if they did not do the original implantation.  I did not have any problem finding a new doctor.  I interviewed two different pain doctors and selected the one I felt most comfortable.  I do live in an area where there are several hospitals with pain programs. 
 
I feel that as long as you are honest and forthcoming about why you are making the change, things should go smoothly.   I would hate to feel that I was forced to stay with a doctor that I no longer had a good relationship with.
But I am sure some doctors have bias' we can not control. 
 
Stella Maria
 
Lots of problems, lots of medications and lots of mechanical add ons.
 
 

Stella Marie,.


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/8/2008 1:07 AM (GMT -7)   
Hi Stella..... how is the pump working for you vs meds? And where is your chronic pain & does it help? Thanks!
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 12/8/2008 9:40 PM (GMT -7)   
Hi Stella, I am so glad to see you posted. I got concerned because you had stopped posting for quite awhile. I do hope you are doing ok. I sent out a post awhile back asking if anyone had heard from you. You were very fortunate in finding a dr for your pump. My own PM dr that is quitting is the one that told me that its next to impossible to find a pump dr willing to take on an a patient that already has a pump. He did not give me a reason why its this way. I am assuming its liability issues or difference of opinions on whether the patient needs a pump or not. I am very happy that my PM dr has already got a dr willing to take me on. I belong to a pump forum and there a few there thats in the same boat, dr quitting and in many instances the dr did not find a dr to take over. You would not believe what these people are going thru. They keep getting told no over and over and they are terrified. Medtronics list of drs is so outdated that most of the numbers are no good or the dr is not taking patients. Hugs Susie

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