Possible surgery in my future - have some questions

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Red_34
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Date Joined Apr 2004
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   Posted 2/16/2009 1:47 PM (GMT -7)   
Last year I found that I have 2 bulging discs in my neck.  One, according to the neurologist, looked to be slightly herniated.  I went thru a series of 3 epidural injections.  They worked really well and I was pain free for a little while....until about 2 weeks ago.  I had some sort of neuropathy nerve pain flare up.  My left hand felt like it was on fire, it was tingly and sort of numb.  That lasted about an hour.  Then last week, I woke up with first burning on my inner arms - that went away, then I had burning on my inner thighs - that went away and then my left hand started to burn again, that lasted maybe an hour but then I took a shower and both my hands started to burn intensely where I had to go to the ER just for pain control.  My primary thinks that my neck is inflammed again and the burning in my hands magnified due to my Raynauds.
 
I go tomorrow for my second round of 3 (series) epidurals.  I am probably going to have another MRI soon. If these epidurals don't work or if they only work for a short time, I may be facing surgery to repair the discs in my neck. If I am experiencing peripheral neuropathy, there is NO WAY I want this nerve damage to become permanent. But now my question(s):
 
1) What is the success rate for these types of surgeries?
 
2) Has anyone had this type of surgery and if so, can you please tell me about your experience?


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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fatherjohn
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   Posted 2/16/2009 10:57 PM (GMT -7)   
As you already know, every person's experience is different but it is wise to look for advise from others who faced similar diagnosis. I waited 10 years after my injury to have surgery, multilevel fusion, because the surgeons at that time gave me what I felt was odds that I was not willing to face. Another surgeon told me that I should wait until I could take it no longer and then bite the bullet. I was on pain meds for those 10 years. I am now 13 months out of surgery and I am worse off than before, or at least that is the way I feel. The surgery went well but there was too much nerve damage and now I struggle with constant pain and so far little hope for relief. They have still not found a mix of meds that will relieve the pain. My PCP told me that all he could do at this point was to increase my meds and decrease my IQ. I am hoping to get into another Pain Management Specialist in another month or two. Due to the fact that my work comp is from another state, I can not find a PMS to see me. We have a new one moving in, about 35 miles away, that is considering my case. I am sorry to drag this on, but if I had it to do over again, I am not sure I would change anything. If I would have had the original surgery, my surgeon said that I would have probably ended up with having multiple surgeries. Because the surgery did not relieve the pain, I question, what if I had submitted to the surgery 10 years ago? No easy answers to the questions, no Dr. could give me the answers either. I found out that surgery was not the answer but trying to live without it got to be too much as well. I refuse to give up and I don't want to give in.    

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 2/16/2009 11:44 PM (GMT -7)   
Hi, Red,
i have to echo what fatherjohn said, but you already know some of this - the part about us all being different. I know about waiting and nerve injury. I had a double lumbar fusion late in 2007 which didn't help anything, and only added new symptoms. It SEEMS when I read here cervical fusions have better success rates, but I think it's always important to remember the people who have successful outcomes probably aren't posting here.

I did a lot of research on medscape.com (which also links to medine.com - where you can access medical research, and mostly it's free). I printed out lots of articles about various surgical procedures and outcomes, and even though I didn't understand everything I read I learned a lot. I had two opinions; the first doctor was older and told me he wouldn't recomend surgery; the doctor at the large medical center I went to gave me a high % of success. Guess who was right? There is no easy answer to this.

I wonder because you have so many different symptoms if I were in your shoes I'd want to know as precisely as possible what's causing various symptoms, because it sounds like cervical surgery may only address some of your symptoms. But I also think hard about whether I regret my surgery, and probably at my age things were worsening anyway, and I would have always wondered if surgery would have helped. My surgeon would like to do another, more extensive surgery to remove the scar tissue but I've said no. Multiple surgeries don't seem to have good outcomes; more scar tissue just forms.

This probably isn't helping much, but learn a lot and ask a lot of questions of your doctors about what surgery would and wouldn't help.

PaLady
BTW, would RF be a possbility for you?

Post Edited (PAlady) : 2/16/2009 11:47:53 PM (GMT-7)


Scarred_for_life
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Date Joined Jul 2008
Total Posts : 1559
   Posted 2/17/2009 2:45 AM (GMT -7)   
I agree with both John and PA on this. It is so hard to tell you what to do or even give you good advice. You will find that the surgeries that have been done on this site were failures mostly leaving broken patients living lives of wishes and pain and trying to grasp what little reality we have left that maybe someday there is hope out there for some relief whether it be through medications...or some device. Myself, it was a lumbar fusion that left me like this S1-L3 in fact are all fused leaving me with very little range of motion and horrible pain. But....there is several cases that I have seen and know of where patients that have had cervical fusions with great success. They of course still have some mild pain and will have the rest of their lives (no surgeon can boast that they will completely take your pain away and if they do RUN!) and the reason I say that is because you cannot open a person up...place titanium rods, screws and plates inside....fiddle around in there and then close them up without expecting some scar tissue and damage over the long haul. My doctor told me I will always have back pain but that it would be minimal. What the surgery set out to accomplish was to take away the sciatic pain that was coursing down my legs. When that failed I was back to square one.

Now...having said all that. Like I said I have seen several of my friends go through cervical fusion with great results. Minimal pain and they are back to work. But there are those cases where everything turns bad and you must be aware of these. So my question to you is have you had a second opinion? I would ask many many questions and make sure you know the risks that you are about ready to go through before you go through them.

Hope this helped.

Scarred
What doesn't kill us only makes us fight back harder! :P


Red_34
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Date Joined Apr 2004
Total Posts : 23413
   Posted 2/17/2009 6:28 AM (GMT -7)   
Thank you for your honest replies - that is why I like HW so much, you are guaranteed hard honest answers with no beating around the bush! :)

I know that everyone is different and you're right, I didn't take into consideration that who we see on here are worse off then before or why else would they be on a support forum eh? :0) I haven't consulted anyone yet about surgery. But, one neurologist mentioned that they are going to try to keep me off the operating table as long as possible. However, I got a glimpse of true nerve pain last week and there is absolutely no way I can live with that sort of pain! It was so excruciatingly painful. I have an extremely high pain tolerance but even this pain dropped me to my knees. So that was the main reason for my post, to see if there were any successful stories about cervical surgeries that prevented nerve damage. Of course, one never knows if their nerve related pain will intensify or not because we can't read into the future.

Palady, what is RF?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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edt
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Date Joined Dec 2008
Total Posts : 773
   Posted 2/17/2009 6:54 AM (GMT -7)   

Hi Red,

I agree with all that has been said.  I myself had cervical fusion C567 in 2000.  I had no choice as the discs had ruptured.  I was left with nerve damage.  Before the surgery I tried to get Prolotherapy treatments but was told if I didn't have the surgery I would be paralyzed.  The surgery did fix the severe pain from the ruptures.  Research Prolotherapy, I went for these treatments 5 mos after the fusion surgery and they did help to control the pain, spasm and tingling.   Unfortunately, the job I was doing was ergonomically incorrect, so all the treatments I was having were being undone by the repetitive motion.  When I left my job 3 yrs after the surgery, the lower back was involved and nerve damage extended to the legs.  I would run back for more Prolo treatments except Medicare does not cover them.

Educate yourself and research all of your options before you go the surgical route.  In the end, you have to do whats best for your situation!

Good luck!

edt 


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 2/17/2009 8:39 AM (GMT -7)   
All the specialists I've been to in the past 7 1/2 years have cautioned me against
surgery.They have said that if I'm not able to control my functions or if I am unable
to walk that will be the time for surgery.
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.


Tirzah
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Date Joined Jul 2008
Total Posts : 2279
   Posted 2/17/2009 9:40 AM (GMT -7)   
Red,
I'm not sure what kind of surgery you would have, but if it is fusion surgery I maybe have a suggestion. One thing that helped me make a decision was getting hard brace. Mine was for low back pain, but they do make hard braces for necks as well. Fusion surgery is basically just turning your body into a hard brace so that would maybe give you a good idea of how it could help your pain as well as how it will affect your range of motion.

I do understand what you're saying when you say you can't go on like this, but like my neurologist always reminds me -- you think you're in pain now, but would you be able to handle it if you were in even more pain? The timing is always really tough -- they tell us young ones that we should wait as long as possible so we don't have to keep repeating the surgeries for the rest of our lives, then they tell the older ones that they are too old & don't qualify. So I think it's really a "catch 22" about when to do it. See if there isn't some way to understand what the surgery will actually do for you & then just make the decision and don't look back.

I had complications myself from my Chiari surgery (crainiotomy & C1 laminectomy). Chiari is a degenerative condition that progresses to blindness, muteness and paralysis & I was getting more and worse neuro symptoms each year. That surgery does not reverse symptoms that already exist, it just halts progress and keeps new symptoms from coming so there is a benefit to having the surgery young. The scar tissue from the procedure grew around my nerves & caused severe pain in my neck, right arm & the base of my skull. I was in horrible pain, and eventually got a Spinal Cord Stimulator implanted to deal with that, but I don't regret my surgery at all. Given a choice between nightmarish pain & severe motor impairment affecting speech, vision & coordination, I would choose the pain every time. Please don't think I would expect others to choose the same. There were a lot of days where I would just grip my head & cry. I am right-handed & had to learn to write at least a little bit with my left hand b/c the resulting nerve problems affected function of my arm & hand. It has not been easy, but they are working on getting my pain under control and I don't regret choosing the surgery at all.

I wish you the best with your decision. I'm sure you'll make the right choice for you. :)

take care,
frances

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 2/17/2009 1:34 PM (GMT -7)   
Hi, Red,
RF is Radiofrequency. It's often done by an interventional radiologist, or a neurosurgeon. I investigated it before my surgery. Problem is the neve that's the primary cause of your pain has to be isolated. They do that through nerve blocks and epidurals. Since epidurals helped you, that's why I thought of it.

My doctor at the time explained it to me this way: The nerve is injured using radio waves so that it can no longer transmit pain messages. They used to completely severe the nerve, but that resulted in phantom nerve pain for people, so now I'm told they just injure it. The thing is nerves renegenerate after a couple of years , so it may not be a permanent procedure. A few people here have had it done and can tell you more about it. I'd just throw it into the pot as you consider all options.

Also - ask about having EMG's as well as MRI's. Your neurologist could do the EMG; it's to determine nerve damage.

Ask. Read. Learn. Think. Certainly come back here as you're processing information, but you know the ultimate decision maker is you.

Hope this helps some!

PaLady

Red_34
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Date Joined Apr 2004
Total Posts : 23413
   Posted 2/17/2009 2:06 PM (GMT -7)   
Yep, I'm on the quest for information so I can learn and become better informed about my future. Thank you :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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Tirzah
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Date Joined Jul 2008
Total Posts : 2279
   Posted 2/17/2009 2:18 PM (GMT -7)   
Sherry,
I've been doing some reading about peripheral neuropathies. I actually am diagnosed with that, but don't really know too much about it. I had never heard about the nerve damage becoming permanent. Apparently sometimes that can be the case, but not always so maybe you want to do some more reading about it before doing surgery, esp. if the main reason you're considering surgery is the pain.

I see you are using the Voltaren gel. That really helped me out a lot (plus lots of ice -- I have a special ice pack I bought at Walgreen's that stays cold for 8 hours. I put it on for 20 minutes every hour & it does seem to help my pain quite a lot). If the Voltaren isn't doing it for you, maybe you should try something else. If you're not allergic to Lidocaine, they make Lidoderm patches. Otherwise maybe your doc can write for a compound prescription. I previously was on a compounded gel with ketamine 10%, gabapentin, and a few other ingredients. Maybe a compounded med would help you more than the Voltaren.

straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 2/17/2009 3:16 PM (GMT -7)   

Hi Red,

Well the others as usual have given you some great advice. And like they said they are not the success stories. I can tell you I saw and know many, many people that have had cervical fusions and they did very well. But, here is what I have seen that were successful, the old standard fusion where they either take bone from your hip or a bone bank. The people that had hardware put in their necks did miserable and I would veto that surgery in a New York minute. I stand by my previous statement that our bodies were not designed to accept this hardware. I had a very highly regarded  orthopedic surgeon tell me he would never use hardware on his patients for lumbar surgery. He did not do necks he ref them to a particular neurosurgeon who did awesome surgeries anad he does not use hardware either. Their patients do not end up back in the operating room like so many others do with hardware implanted.

Most people that I saw have cervical fusions had constant pain and numbness in their arm and numbness in a couple of fingers on their hand. Some had neck pain and shoulder pain too. But their biggest complaint was the numbness and tingling in their arms and fingers. I would want a repeat MRI done to compare to the previous MRI if I were you. If there are enough changes seen on the newer MRI and if my symptoms became constant only then would I start my search for the best neurosurgeon out there. If there is alot of nerve involvement sometimes if a person waits too long the damage t the nerve become permanent and no surgery can fix that.

Our bodies work this way, if you have neck problems it affects your upper extremeties. If its your back you will have lower extremety problems such as hip, leg and foot involvement.

We are all going to hope and pray your set of eppies will do the trick for you and get this inflammation settled down and you perhaps you won't need any surgery. The best defense you can have like PA said is knowledge and plenty of it. Just don't overload your brain and scare yourself to death either,lol. Let us know how you are doing. Hugs, Susie 



Tirzah
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Date Joined Jul 2008
Total Posts : 2279
   Posted 2/17/2009 7:17 PM (GMT -7)   
Sherry,
I wanted to note that now surgeons can do a fusion without taking bone from your hips. They can take the piece they remove to get at the disc & use it for the fusion, thus only one cut. Much better, I think, b/c I do know people who complain about pain in their hips. Anytime you put something foreign in your body, there is a risk of rejection so maybe see if you can get them do follow this new standard & use your own vertebral bone.

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 2/17/2009 7:37 PM (GMT -7)   
Frances, I use the Voltaren Gel on occasion on my neck and it makes it feel better but not 100% (jsut takes the edge off). This is when I was feeling horrible. It works really well on my OA though :) A compound gel, does that have any particular name or is this something that is manually mixed? I've never heard of this before so I would be interested if you can give more info on this.

Susie, so far the epidural is working rather fast this time around. I had it done this morning and it is now almost 12 hours later. My constant pressure headache is almost gone and my neck/arm pain is doing better. Now if I can just stop these horrible hot flashes I get from steroids I will be all set!! :) Thanks for the information.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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Tirzah
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Date Joined Jul 2008
Total Posts : 2279
   Posted 2/17/2009 7:56 PM (GMT -7)   
A compound is something that is mixed up by the pharmacist. Not all pharmacies do compounding. Usually the ones that do are either university hospital pharmacies (only for docs on their staff) or the smaller mom-and-pop pharmacies. I've yet to find a chain that compounds.

They start with a base (a regular lotion or gel, I like unscented but some can have fragrance). Then they add other ingredients to it -- liquids or very finely crushed powders. They take the ingredients, pour them into the cream/gel and put them in a mixer like what the paint cans get mixed in. Then they take it & put it into a jar or tube for you. It is not covered by insurance, but usually it is fairly inexpensive to get the mix. I usually paid $85 for a year's supply of the cream. I got a smaller amount at first to try out & then, since I had to drive some distance for the pharmacy, I would get a larger tub so I could make it last for most of the year. All 4 of the pharmacies I've used (they use different creams/gels -- one of them used one scented like Ben-Gay -- yuck!, and another made the gel too runny -- they will fix it but I didn't want to have to keep driving back to get the recipes corrected all the time so my favorite one is out of state, about 2.5 hours from me) were willing to ship the compound to me up to once a month for a year after I dropped off the original script, but I wanted to avoid shipping & handling fees so I filled it all at once. Call ahead to verify they compound & that they have the ingredients. Most will prepare ahead of time if you fax in a copy of the script. Usually it takes 5-7 days to make.

Ketamine is really cheap, but because so many people abuse it & steal it from vets (it typically used as a horse tranquilizer in large doses) many compounding pharmacies don't stock it so be sure to call ahead. You can check with your PM to see if he has a recipe, or you can call a compounding pharmacy to ask for a recommended recipe. If neither of those work out, let me know and I can try to find my old recipe for you. :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 2/17/2009 8:05 PM (GMT -7)   
Yea Red, glad to hear things are kicking in for you and working. Thats great and so glad to hear it too.I do like the sound of what Frances wrote on the new surgery where they don't take bone from the hip. People complain of pain from that more than neck pain. Keep us posted ono how you are coming along. Oh yes, the steroid hot flahes, awful. Hugs, Susie


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23413
   Posted 2/18/2009 5:27 AM (GMT -7)   
Frances, I don't see a PM any longer. I was seeing one but they were sort at ends as to what to do with me. I have many pain med allergies and other health conditions that they sort of threw their hands up. I now see a neurologist and my primary. I have an HMO so I know without a doubt that any compound formulas will not be covered. So I am not worried at that angle especially if it's rather cheap. So I bring this idea up with my primary and see what she has to say? How would I even go about finding this compound? Call up the University hospitals around here and see if they would do it? But it all starts with a script right? What if my primary has no idea what this is?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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modelmaker
Regular Member


Date Joined Feb 2009
Total Posts : 168
   Posted 2/18/2009 1:54 PM (GMT -7)   
With regard to RF, that is a treatment to use RF energy to ablate or burn the nerves in question. The problem is they first have to isolate the target nerve. The whole procedure can be very "uncomfortable" (read: painful) and it doesn't last very long. One to two years max in my experience. An alternative is using chemical injections to kill the pain receptor nerve. I have had much better results with that.

With regard to the question about lumbar vs. cervical fusions, my pain doc explained this to me: The spine at the lower lumbar region carries about 85% of the body weight. It gets less as you go up the spine with the cervical spine carrying the least weight. So as you fuse a joint at the lumbar level all that weight is transfered up to the next level and so on. Once you start the fusion process it can work its way up the spine. Also, a fusion starting at the cervical area has less weight to deal with and therefore fewer complications.

Hope this helps. Keep the faith that it is going to get better!

Modelmaker
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