What to do now

I have been having extreme pain in my shoulder for the last 2 months I have seen my orthopedic surgeon and had my MRI come back with the following:

At C5-6 there is a right paracentral disc herniation. There is mass effect on the ventral surface of the cervical cord in the right exiting nerve root. There is a mild left neural foraminal narrowing secondary to uncovertebral osteophyte formation.

At C6-7 there is a broad based disc bulge.

I was referred to a very good neurosurgeon who definitely thinks I should have fusion surgery. I went on a course of steroid treatment it took the pain away but after my 6 days of steroids I was in pain again within 2 days. This neurosurgeon I now find out is not in my network and I cannot see him because I will not be reimbursed so I have to find another neurosurgeon. In the meantime I am on Percocet 5mg/325 up to 6 times a day for pain. The pain I have is referred to the shoulder and I am in much pain most of the day and in agony at night. My orthopedic surgeon has balked at giving me a stronger level of Percocet I am eating many  pills. I tolerate the Percocet well and it really helps me I have been taking them for the last month. What would you suggest I do? See a pain management professional? Is this common for you to be in pain have the recommendation for surgery but have the physicians balk at giving you anything stronger? I almost have to beg this orthopedic surgeon it is getting embarassing.

[sandee1818]

I am not sure what your feelings are on having the surgery or how long it will take to set it up if you are thinking about doing that but in the mean time you need pain management.
The medication your taking is NOT for long term as your ingesting TOO much Tylenol.You need to be on a medication that does not have that much tylenol if any.
Ask for a referral to PM doctor. You may not need one check with your insurance to see.
You need to decide what your going to do as you can't be forced to have the surgery and if your not interested then you need a PM doctor immediately.

[tata616]

Thanks I will follow this up with the orthopedic surgeon I would rather just deal with him because otherwise he is a great doctor its just that when I ask him for something stronger he just gives me more 5mg Percocet I am told 6 of those a day should be max and I am at that maximum with minimal relief right now. Have a beautiful Easter.

[tata616]

And yes I want the surgery but I need another neurosurgeon because the one who is treating me is not in my network and I have to PAY out of pocket for this initial visit. This doctor is great too. So the dilemma is pain control and then find another doctor to do the fusion procedure.

[Mollyrae]

Hello tata and welcome to the Pain Forum:

I agree with Sandee on seeing a Pain Specialist. They can assess our level of pain and treat accordingly You really are in need of a long acting pain medication. If the Percocet works well then I would suggest something along the line of Oxycontin. This does not have the Tylenol in it and will control the pain for a longer period of time. You may also need a breakthrough pain med and I would recommend just plain Oxycodone. It is Percocet without the Tylenol.

I hope you seek out a new surgeon as I really think you need the surgery. I had problems similar to yours and I did have a fusion. It really made things better. Please take care and good luck,
Molly

[MontanaGurl]

So sorry to hear about what is going on.  It is not fun living with pain.  The pain meds that you are on now do contain alot of tylenol - especially over the long haul, when you are taking 6 a day.  And as you already know, the tylenol will reak havok on your stomach after awhile.  Maybe tell the neurosurgeon about what is going on - as far as him not being in your network of providers and than talk to either him or your regular doc about being referred to a pain management person.  When you have pain - especially all the time.  When you have to deal with your level of pain, as well as your initial injury - staying up at nite with pain is not healthy for you at all.  It can add to your stress level which starts the pain cycle all over again - pain, stres, pain, stress.  I would suggest that you to your regular doctor about the pain management.   keep posting and keep us updated on what is going on.   dont give up, keep positive!!!

[tata616]

Thanks  I actually have a referral now to a PMP I will bring him my MRI and reports and bottles of meds etc and see what he suggests. Yes the Tylenol or acetaminophen has been wreaking havoc on my poor stomach I had to back away from them. I really am having trepidations about the surgery but the neurosurgeon said that the cortisone pills and even the very invasive injections in the spine will only temporarily mask the pain and not do anything about the condition. I am in physical therapy and even they are treading lightly now that they have seen the report but have been very helpful. Thanks again I will keep you all updated.

[RunningMom]

Good luck with the PMP.  They should be able to help you control your pain.  I wanted to go through the steroid injections and nerve blocks before they did the surgery.  I wanted to make sure I was doing the right thing.  I had an ACDF 5 weeks ago on my C5-C6, now I wish I would of had the surgery sooner then I did.  I waited 6 months before having the surgery and it was 6 months of my spinal cord being compressed.  The neurosurgeon is right.  The steroid shots and pills are only to ease the pain.  They will not cure the condition.

[tata616]

Thanks for the reply RunningMom hope you continue your recovery quickly and get back on the road running. My only trepidation about seeing this PMP is that he is associated with a Spine Center and I have been reading that these centers are interested in only solving your pain with injections and other treatments that are not pain medication based. I may go with epidural steroid shots etc but I want to decide when and not be pushed into it and in the meantime need pain meds. We shall see I am due to see them soon.

All the best!

[tata616]

Hello everyone. I was right and I hate to be right sometimes. The place I went to was a rehab mill specializing in epidural injections. Right away the vibe was "we can fix you without drugs" the MEDTRONIC sales guy really hit it big at this place. I asked about the success rate with epidurals and they were WAY encouraging but the stay away from all drugs so pervaded the meeting with the doctor that I did not bring it up. I need another plan.

[MontanaGurl]

I am so sorry to hear that that happened to you.  Well, my suggestion is, go back to the regular doc that referred you to the pain clinic and tell him or her what had happened and ask to be referred to another clinic and / or in the meantime, ask if he can please help you with your pain management until you can get into see another pain doctor.  It is up to you how you wish to deal / treat your pain issues, it makes me just mad when doctor's won't listen to you.  You are the one who has been living with the pain and who will have to live with it for the rest of your life.  And they talk to you for 5 minutes and automatically assume that they have the cure all stuff in some wacky form.  I appriciate your frustration and sometimes, my mom says she feels like a witch because she gets that instinct like you had.
I do wish you all the luck and hope your doctor helps you soon.  Keep posting.
til later - MG

[Red931]

I am sorry I didn't see your post when it went up on April 9. I have a similar situation with my shoulders except the problem doesn't relate to my spine. However, pain is pain and needs to be treated accordingly.

My Orthopedist was prescribing me Vicodin and I had to take one every 4 hours to get relief. I later found that my liver enzymes were elevated from the large amount of Tylenol I was taking everyday, even though I was taking my pain medication as prescribed. I asked my Orthopedist to change the medication and he changed it to Percocet. Percocet also has Tylenol in it although not as much. I didn't want to take anymore Tylenol until my enzymes were back on track.

Rather than argue with my Ortho I went to my PCP and he prescribed Oxycontin to me. It is the same drug as Percocet without the Tylenol and 1 pill will give you about 8 hours of pain control.

If you do not want surgery and are still looking for another Neurosugeon you need a drug like Oxycontin for longterm releif. Maybe you could go back to your Primary and talk with him about this.

I hope this helps you.

[tata616]

Hi All,

Since I first posted this a couple of months ago a few things have changed. I now have opinions from 3 neursurgeons. The last NS says I definitely need the surgery and can try an ESI. The surgery can be on my timeline in that it is not and immediate need but necessary if the ESI does not work.

I have a pain management doctor now and he did my first ESI which was not successful and I am on pain medication for the interim. I want to see if I can delay surgery til the beginning of next year so I can put my co-pay aside ($4500) with money in a fund that is not taxed. I also want to see what life is like on medication versus rushing to surgery and so far it is tolerable with minimal amounts of medication. Right now I am on short term opioids (Oxy IR 5mg and LYRICA) I can function well as I work from home.

Just thought I would post up what has been going on for me personally. I do hope all is well for you all and wish you a speedy recovery or a pain free interim period.

All the best TATA

[sandee1818]

I would not be rushed into surgery. This is your body so it is your decision. if you feel like you want to try the medications verses surgery then by all means you do what you think is best. Most surgeons will tell you that surgery is your only option but I urge you to research other cases and see what the outcome was. You have to be your own advocate and do not let anyone push you into anything you have any doubts about. You have the authority to decide what is right for you and if you feel your doing okay on the medication regime then put surgery off a bit until you decide for sure thats what you really want at this point:)

[Tuckamore]

Hi Tata,

I apologize that I am tardy to your thread. I was out for personal reasons when you first posted.

I agree with Sandee. I would not rush into a surgery either. Sometime the problem can be repaired but it does not always take care of the pain. An educated decision is the best decision as Sandee indicated. Read all you can about the procedure and research it on the internet. Also talk to other patients, hopefully ones that have had the same procedure done by the same surgeon. Check his record and be cautious. If after all your research you determine that surgery is the best solution for you than absolutely schedule it.    

Thank you for keeping us updated. We will look forward to hearing from you again. Best of luck with whatever you decide. Remember we are here for you and take care.

Peace,
Tuck

[tata616]

Tuck-

Thanks. Research is good advice. Also it is best to be cautious as this is major surgery which really is elective. I can deal with my pain for now but know that unless the pain goes away surgery may just be the solution.

All the best-

TATA

[tata616]

Well the pain has reared its ugly head and this time it feels permanent. 5 days straight intense ripping feeling in my should and lower neck. I am going to see my neurosurgeon next week and get on his surgery calendar. I am relying on pain meds and now that is not working.l hope surgery brings relief.

[Tuckamore]

Thank you for updating us. So many ppl don't and I am often left to wonder how they are doing. I am sorry that the pain has returned with a vengeance. You should do what you think is best for you and if that means surgery than you have my support.

Take the meds as prescribed and rest up for your surgery. Don't be a hero and wait for the pain to get ahead of you, so many of us do that and suffer for hours needlessly.

Keep in touch and best of luck to you.
Tuck

[tata616]

Tuck-

Thanks again for your support. I had cut down on my meds prior to this flare-up. Now I am taking more than originally prescribed. I take 5mg Oxy IR 6 X daily and it has been over that amount consistently for the last week. I see the surgeon next week and I will set surgery for as soon as possible. I asked my PM what quantifies successful outcome of surgery and he said "you have no more pain". I read on this site and others that  many continue to have pain and other complications. I hope for the best.

TATA

[lobak]

It's a crazy, crazy world out there in the medical field!  The easy part is finding what your problem is, the hard part is finding a Dr. that shares your views and is willing to work with you and not treat you as a number. From reading your posts it seems like you have explored the options that are available before surgery.  Remember a neurosurgeon is trained to operate, that is his field and his first instinct.  However, opening the human body and cutting or removing tissue or rearranging any inside parts of the body is ALWAYS the last resort.
You have been very cautious by going with the steriods (which reduce inflammation), epidural injection, cortisone injection, physical therapy and if none of these help then surgery is probably required. Here is the problem; finding a doctor that believes that no person should suffer with pain when there are approved drugs that  can take the pain away. You could go to a doctor group with 8 Doctors and each would have a different answer.  There has been much publicity about the abuse of Oxycontin by a very, very small segment of society but trust me it is a very effective treatment when admisistered the proper way.  Many doctors are afraid to prescribe any schedule II drugs, fearing that they may be questioned by the Food and Drug authorities about their actions, so to be safe they under prescribe all pain Meds. Your mission is to find a Dr. that is confident in himself and practices the theory that pain is not necessary!!  They are out there and be brave enough to interview the Dr. and ask him his beliefs in pain management. Too many people put Drs. on a pedestal and just do as he or she says.  You have every right to interview him or her before you hire them to take care of your body. Question the Dr. about the pain control before surgery, the meds that will be used in the hospital and the pain meds you will be given post op.
I know it sounds like a lot of work on your side but you would do it before buying a car, a major house repair etc., so do it for yourself.  Thats your right.  I will close for now but I will share my story of 9 lumbar surgeries, 2 fusions and taking part of my pelvis and hip to repair my spineat another time. tata616 get to work and God Bless! :) you're doing a good job!

[tata616]

Well I have surgery scheduled for August 19th maybe sooner if they can get me in. As I mentioned I am indeed in pain but the real reason for this move now to surgery is to make the spine more stable so I don't have to worry about paralysis. Also before this happened I was very active on the road bike everyday skiing every weekend. My surgeon says after this surgery I can be back on the bike next spring and skiing by February. We will see and I will keep you all posted all the best to all of you and thanks for your kind advice and support.

TATA

[tata616]

I had my surgery yesterday. C5-7 grafted with a new carbon fiber graft. I was in surgery 2 and 1/2 hours and in the hospital all day and all night and discharged this morning at 7:30. My doctor and hospital were great they made all the difference.

Please note this as a very positive experience as opposed to some of the negatives on this surgery you get on the internet. If you have sustained pain get a good neurosurgeon/pain management professional in your court right away. Get as many as 3 opinions I did. And then get it done. It can be scary because after all this is elective surgery you have to opt-in sign the forms taking the blame but 1 day out I have no pain!

Do it.

TATA

[tata616]

Hello all I am now 7 months post op and I am doing well. I remain off all pain medication and for flare ups (which happen mainly at my desk at the computer) I use Tylenol Arthritis and Ibuprofen. I am back to being active stationary biking an hour everyday and doing hundreds of push ups a day just about everyday. I even went skiing and fell on my head but came through that with only a scare. Just a note to say all is well and thank you for your support.

TATA

[Totie]

I am so happy this worked out for you.....