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Old 12-31-2012, 04:20 PM   #1
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Unhappy Additional surgery?

Hi
This is my first posting. I am glad to be with a group of people who understand what it is like to have chronic back and neck pain. My question currently is that I had my scoliosis repaired 5 years ago. They performed 2 surgeries and I am now fixated from L1 To L4. Had previous severe R groin pain and right front of thigh pain. Since removal of old hardware (the rods were too close to the surface) I have felt fantastic. Now for the last month I have increasing pain on my lower right side of my back,lower than my previous surgery. Also have front right leg pain to knee. Increasinly getting worse,had to increase breakthru pain med. I await MRI now. Was told I could have a herniation at the level below my fixation, or the hardware could be a problem (screws,and cages). Does anyone have any thoughts on this matter,any experience similiar? So tired of surgery,this will be my 13th one. I keep herniating at levels surrounding my old herniated disc sites. I am 49,and on full disability....every day is a challenge. Would love to hear from any members willing to chat. My belief is that there are many other people in worse conditions than I, and I am grateful for all my surgeons have done for me. I try to stay upbeat and positive and I am bringing my outlook to this group. (first surgery was 1996) Want to help others in any way I can. Thanks for listening. RetiredOSA

 
Old 12-31-2012, 10:45 PM   #2
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Re: Additional surgery?

Retired:

Welcome to the board.

First of all here is my story:

----- 1988: traction for 2 weeks for bulging discs lumbar spine;
----- 1994: lumbar surgery for herniated discs;
----- 1995: cervical surgery for foramenal stenosis;
----- 1997: lumbar surgery; flatback sydrome; harrington rods from L2 down;
----- 2000: cervical surgery; kyphosis; harrington rods from C3 to T4; surgery was a 2 part surgery do to severity of problem; 12 hour surgery total;
----- 2003: surgery left leg for blood clot;
----- 2006: Implanted Spinal Cord Stimulator;
----- 2007: surgery for pancreatic cancer;
----- 2011" Removal of Spinal Cord Stimulator;
----- 2012: Procedure for "trial" Intrathecal Pain Pump;
----- 2013: SCHEDULED: Permanent Intrathecal Paim Plum to be done 1/11/13

Other medical conditions:

----- Diabetic
----- Absent left kidney; congenital
----- Kidney disease left kidey

In addition; an EMG showed severe nerve damage of the cervical & lumbar areas; severe perispheral neuropathy from both the spine and diabetic; severe arthritis

I had an MRI of the cervical spine and thoracic spine showing "Myelomalacia of the cervical spine and Focal Cord atrophy" Loss of disc height - severe - At C6-7; foraminal stenosis at 2 levels I believe. Bone spurs; Thoracic region also showed several disc protrusions and bulges.

I am curious as to what the MRI that you had done shows. It is possible that with hardware that over time there may be problems either above or below the levels where the hardware was done.

The doctor that did my surgery in NY for flatback and put in the Harrington Rods indicated that this MAY have been the case with me.

I am at the point that they are afraid to do surgery on me. My cervical area is giving me issues in that I am complaining of weakness in my arms; radiating pain to the shoulder area; sometimes a tingling weak feeling in the fingers;

I also have severe neuropathy in both legs. Loss of balance issues; pin and needles at times in the toes. Feeling like I am walking on pebbles at times. The pain goes from moderate to severe at times. Nighttime is usually the worst time for me.

I have been on tons of meds over the years from Neurontin; Fentynyl patches; Oxycodone; Hydrocodone - currently - Baclofen; Tizandine, muscle relaxant. I did mention the Spinal Cord Stimulator which really do that much for me so thats why it was removed.

In the Trial part of the Intrathecal Pain Pump done 12/10/12 to 12/13/12 I found a great deal of relief. The catheter was placed at T10 and was directed at the midback/low back. It did wonders for the pain. The pump for whatever reason is NOT used for the ENTIRE spine. Not sure why.

Once the permanent implant is done and I get some relief. We will target on how to handle the thoracic and cervical issues. Not sure what the answer is.

My neurosurgeron is afraid to touch me surgically on the neck for the Myelomalacia and the focal cord atrophy for several reasons. Partially because of all the surgeries already done. But also since I am diabetic and in kidney failure that adds complications to my have more surgery.

At this juncture I dont have an answer as to where I am headed. I have been on Social Security Disability Income since 2003.

At times I am frustrated; but other times I deal with what life has dealt me. I am optimistic about the Intrathecal Pain Pump. Nothing worked for me like the trial pump did.

Please let us know what the results of the MRI are. Good luck

 
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Old 01-01-2013, 01:38 PM   #3
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Re: Additional surgery?

Thank you so much for making me feel so welcome with my first post. Your extensive history was extremely interesting to me. I too had 2 spinal stimulators placed,no pain relief whatsoever despite separate trials. You sound very positive about your future and surely your never give up personality carries you along, as it does me. VERY interested in hearing about your intrathecal pain pump,as I have been exploring this idea for a very long time. Exactly what drug is dispensed thrpugh the pump? Did u get good pain relief using the Fantanyl patches,Oxycodone,and Tizanidine combo? This triple whammy has been my savior for a very long time. I hate having to take breakthru meds, going thru withdrawal before I am due for new patches, the SEVERE GI upset and constipation including bowel obstructions that I suffer with due to these meds. Have heard so many pros and cons about the pump,but I cant help but wonder if it would improve my quality of life. So happy that it is helping you.

I am awaiting my MRI with and without contrast and x-rays on my lower back in a few weeks. I return to my neurosurgeon in Feb. They too are very hesitatnt to perform more surgeries since every level fused causes more destruction beneath it. I agree,but after the procedures the pain relief is instant and buys me more time for the future relatively pain free. If another level has collapsed I really see no choice. I am an extremely small framed person (5"1,and 110 lbs.) and that leaves very little tissue for them to stretch over and close incisions with even more hardware. They removed 2 of my lower rods because they were poing through my skin and rubbing on all my clothing. I was so proud of the beautiful tattoos I had done on my back,so I pose an interesting challenge for the P.A. when he does my top level of closure after surgery. So far he has managed to match up all the parts of my flower tattoo so it looks as good as when it was done,he loves to kid me about it. (LOL) From my previous history I am inclined to agree with my surgeon that since my current pain is well below my belt level,that a lower level has herniated. I already had a small herniation at S1 that they have been watching. At this point in my life I just keep looking forward, always grateful that God has allowed the Doctors to improve my condition. I watched my Mom suffer from the ravages of diabetes,and how it attacks so many parts of the body,and I pray that I can avoid that. Since you too are retired,how has your outlook on the future changed? I spent almost 30 years of my life taking care of patients,that it is so hard to be on the other side. It also makes me extremely critical of heath care workers that I come in to contact with,knowing that I never treated my patients the way I have been treated. Does any one feel compassion any more,or do you have to experience being on the other side before you treat patients appropriately? I would hope not.
I return for my bi-monthly mammogram this month to follow my breast cancer,and I pray for good results. Unfortunately a very uninformed Dr put me on oral hormone replacement, and then inserted a Mirena IUD for HR replacement for my menopause for several months. I found out from my breast cancer Dr that every day I took those hormones put me another day closer to an even worse reoccurence,with even more of a vengeance. I make sure I pass on all my breast cancer history to my friends and others in the hopes they can avoid complications of breast cancer. Makes you see how amazingly resilient the human spirit really is.
I thank you again for sharing your med history,it really is a help being welcomed in to this group as I know of no one else who can truly relate to these issues.I think people hesitate to talk to me because they dont know how to relate to all I've been through. I Look forward to hearing more about your insertion of the pain pump,which I pray will be a huge success for you. I too will let u know about my MRI.
Wishing you a very Happy New Year today and prayers for your continued improvement.

 
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Old 01-01-2013, 01:51 PM   #4
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Unhappy Re:Additional surgery vs better pain control

As I await my MRI, I was wondering if there is anyone else out there who has gone through spinal stimulators with no success and are now looking in to or already have a pain pump? I am concerned about the long term effects of my pain meds,especially the GI issues. I have lost over 30 lbs during the past year due to the side effects of the narcotics.How does anyone else cope with these problems.I am so tired of dealing with all the Bowel obstructions,constipation,diarrhea,loss of appetite,as they are never ending,and now facing more surgery I am curious as to a way to achieve better pain control.Thanks.Perhaps if I had less pain,then my chances for more surgery would not occur.

 
Old 01-03-2013, 08:23 PM   #5
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Re: Additional surgery?

[FONT="Verdana"][COLOR="Purple"]Retired, welcome to the boards!

The discomfort from constipation is no fun. It is also something that health care professionals fail to mention when you start on long term pain meds. I found out about this "wonderful thing" thru a post on this board. I take Miralax every morning to make sure that I keep everything as it should be, so to speak. If you are interested, there have been a couple posts in time gone by that address different ways of helping to control the constipation. There are a few homemade recipes that help with it and some other suggestions. If you do a search on constipation, you should get a hit.

I have also found that fiber one bars and dates have helped me in the past to keep things moving. (Isn't it amazing the things we find that we need to discuss? ).

I had surgery to replace my lower three discs and to correct a 17 degree curvature in my lower back. Well, they went in and the 3-5 hour surgery turned into 8.5 hours. Got rods, pins, screws, cages, you name it. It was a miserable 360 go according to my surgeon.

The next day when they got me up to walk, as I started to stand up I felt something pop, like when you blow up a lunch bag and pop it. I told them something broke, but they told me I had had a long difficult surgery and everyone feels that way. My surgeon was out of town and saw no partner, just the PAs for the week. They got me up twice a day to walk and then to sit in a chair. They kept asking me on a scale of one to ten what my pain was, and I kept telling them 14. My hubby sat with me and the kitchen timer so I could regulate the pain pump. I get bolla injections every hour to help with the pain.

My surgeon came back after a week long conference making jokes about how he couldn't leave me alone. I told him that thought I was losing my mind because of the pain and that my left leg was dragging and I couldn't stand without support. He turned the same shade as the walls. One x-ray coming up. He sits down in my room and told me that he had good news and bad news. The good news was that I was justified all the pain I was having. The bad news was that my back was broken and I needed more surgery. Back in we went. I am now fused from T9-sacrum.

I spent a month in a nursing home learning to walk again. The day that they discharged me from the nursing home we found that I had a blood clot that went from my lower calf to the top of my groin and I was throwing clots into both lungs. There went another week in the hospital as I laid still and flat with my new best friend Katherine Heparin (sorry) by my side. I left home on Feb 8th and was wheeled back in the door the 8th of April....and no body dusted or threw out the junk mail....

As my mother used to tell me, it will either kill you or make you stronger. Guess I was too mean to give in. I now live in some degree of pain and will have it for the rest of my life.

I have a wonderful Pain Management doc that chastises me when I wait too long to call him, keeps me honest on my meds-which I dislike taking. His comment to me is that he has some people who constantly ask for more and more meds..and then there is me, who he can't get to take meds.He is available by email and by phone on the weekends (shock!). He LISTENS
to what I tell him and works with me to make sure that my pain is controlled to the best of his ability. He planned my meds and how I would travel when we went to japan a few years ago to see our son. And he will do the same when we head to Italy to see same son this next year(Navy). I have been truly blessed to have him and his nurse who is my guardian angel..

As far as compassion goes. The problem with chronic pain is that there is nothing truly visible that people can see that would generate compassion and kindness. We don't have a missing limb for most part, we aren't disfigured(the majority of us). We suffer inside that isn't visible and as a result we are taken to be malingerers or fakes. Chronic pain is difficult not only to have, but to treat. I don't know about you, but it isn't something that I would want to have or to wish on anyone. And so life goes on.

Please keep posting, and I hope you find relief...either long term or fleeting. We take what we can. [/COLOR][/FONT]

 
Old 01-03-2013, 08:53 PM   #6
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Re: Additional surgery?

retired:

Just briefly in response to your post.

The medication that will be used in the pump is a combination of Dilaudid (form of morphine) and Bipuvacaine which is nerve block; epidural type of medication.

The few days that I had the trial implant I found great relief. More then I could have wished for. I know once the permanent implant is in I may have some up and down days. Even if in the long term I get a 50% relief I will be happy.

I was walking more then I had in years while the temprary implant was in. It was amazing.

As to the relief I did get from the Hydrocodone and tizanidine I had varied results from taking the medication. I found on the days where I was taking more of the medication I felt messed up. Days I spent in bed because I was tired I couldn't get enough sleep. Sometimes the relief was better then others.

The fentanyl patches I tried years ago but had problems with the patches I was getting lightheaded; and breaking out into cold sweats from what I remember. I couldn't tolerate the medication for a long period of time so stopped using it.

With the pump the good thing is that the medication is delivered directly to the spine and doesnt have to go thru your system. Thus you take a very small dose via the pump compared to the oral medicatons. I cant remember the dose I was of the pump but it was like 0.1% compared to 7.5-750 mg of the hydrocodoen/acetamenophine. Big difference.

Will try to respond to the rest of the posts its getting late and I'm beat at the moment

 
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