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Posted 6/3/2014 8:42 PM (GMT 0)
Hello again,
I just got back from my appointment. He is a very good guy. As I mentioned previously, he will be leaving this teaching hospital.

He said that in order to make SURE that ALL of my pain was coming from this failed fusion site, he wanted me to have one more round of Steroid/anesthesia injected at those points in my spine. If I get considerable relief, he strongly recommends the surgery.

If not, he said "we'd talk then" (of course, he has made my follow-up with a trusted colleague...) I really don't want to get more injections done, but this one is for a good cause, and I really really really don't want to get this back surgery if it isn't gonna help.

He said I can count on about 10 times the pain compared to the ACDF surgeries, and a longer recovery time for sure. Hmm. Not a great spot, but it could always be worse. At least he validates that my pain is real...

I told him all about my experience yesterday with the "pain management" doc at the previous ortho practice that did my original 2 fusions. He laughed when I told him that "she" had said that the reason for the discrepancy in treatments between the two practices was that "they" were CONSERVATIVE and this "teaching hospital practice" is NOT CONSERVATIVE. He really laughed! :)

The initial practice is one of those that is in it for the money... kinda known around here, but that's where my insurance 10 years ago made me go, so that's why I have had to deal with them again. At least there's hope. Of something. Thanks for listening to me. I really appreciate it! :)
Posted 6/4/2014 1:48 AM (GMT 0)
Glad to read your appt went well with this dr. I know you are happy with the drs at this teaching hospital & that is all good. However, I urge you to get a 2nd opinion with a good board certified neurosurgeon. Considering this is your back I cannot stress how important it is to get 2nd & even 3 rd opinion. The reason I suggest a neurosurgeon is they have far more experience dealing with the nerves than an orthopedic. Pretty much everyone around here feels when it comes to the spine & the nerves involved a neurosurgeon is one of the very best choices if surgery is involved. An orthopedic deals mainly with the boney structure. It is always best to be safe than sorry.

Good luck.
Posted 6/4/2014 6:56 AM (GMT 0)
Without the slightest big of hesitancy, I agree with what Susie wrote.

I consulted with two board certified neurosurgeons before finding one who could/would take me on because my spine was so riddled with such damage and complexities. I found an excellent doctor who, among other things, specialized in traumatic spinal surgery.

Me, personally, I wouldn't let an orthopedic spine surgeon touch me.....I would go the route of the neurosurgeon, and as was recommended, get backup opinions. Your spine is not something to be taken lightly!! (<-- Emphasis there!) Please be safe.







M.
Posted 6/4/2014 3:22 PM (GMT 0)
Thank you all. I will go ahead and get the ESI and then when I follow up with the orthopedic surgeon, I will ask to be referred on to a neurosurgeon for an opinion. I agree wholeheartedly. I am really afraid of ANY additional surgery, but I am more afraid of this pain. I guess I will have to make the choice at some point.
Posted 6/4/2014 3:37 PM (GMT 0)
I'm glad that for now you have a dr who "validates that your pain is real". That is worth a lot!

I'm curious about why he says the pain from this surgery would be 10 times harder than ACDF. Is it because a re-do is always harder or does it have to be done from the posterior? Reading here has certainly validated my own slow recovery from posterior neck surgery. Thanks for sharing this info.
Posted 6/4/2014 3:47 PM (GMT 0)
Hi Abilene,
He told me that going in posteriorly, (which he will have to do in my case, because of scar tissue anteriorly from two prior ACDFs) is much more painful because he will actually have to CUT through muscles around the spinal column, vs. just pushing them aside and holding them with a retractor when they go in from the anterior approach.

He said that the recovery for posterior is usually 6-12 months, which is certainly longer than I was told prior to my anterior fusions. He also said that since I have been suffering with this for so long, it might even take longer to get to some "normalcy".

I am just scared that I may have to live with this pain forever. Do you feel like your level of pain is a lot less than it was prior to your posterior surgery? Thanks so much! It is good to get answers from real people. Hope you are feeling good! :)
Posted 6/4/2014 4:02 PM (GMT 0)
That bumpy road pain was gone at 2 weeks. All other pain was much worse after surgery than before until near the 4 month mark. Now at nearly 6 months, especially the past 2 weeks, I'm feeling like I really may recover from this! When I have PT this week I will ask how my range of motion before surgery compares to now. Then next week on Friday the 13th I have my 6 month follow-up. I'm making a list of questions for that visit.

Yes, getting answers from real people, even if they are online, has helped me greatly!Thank you!
Posted 6/4/2014 4:23 PM (GMT 0)
Wow Abilene, that's encouraging! In fact, this is the most encouraging thing I have seen as far as dealing with a posterior fusion surgery. I know 4 months is a long time, but I can deal with that, or even longer, if I know the payoff is going to be a much lower level of pain.

I find myself sometimes in disbelief about the level of pain I deal with daily. It doesn't matter what I'm doing, where I am, who I am with, or anything. I HURT. Sure, I can make it worse by doing housework, sitting at the COMPUTER!!, walking, gardening, cooking, painting, or driving or riding in a car. But I refuse to stop my life..... until I am forced to do so! :)

I am certainly learning a lot about patience, and this is a good thing. I DO have a pretty strong faith, and that helps too. Having gone through 4 childbirths, and dealing with endometriosis and kidney stones has also helped me deal with real pain. Even though this back/fusion/non-fusion issue has been going on for over 10 years, it is just one more hurdle...at least until the next one! :)
Posted 6/4/2014 4:58 PM (GMT 0)
Poplar, not sure if you have read any of WhiteBeard's posts here or not. He had a posterior cervical surgery a little over a year ago I believe. He has several posts about this surgery you may want to read. His first fusion was an ACF many years ago. He has had I want to say something like 3 cervical surgeries, he is well versed in that area.
Posted 6/4/2014 6:03 PM (GMT 0)
Thank you Susie, I will certainly check them out when I get the chance. I surely do thank you all for the help, support and just plain talk.
Posted 6/4/2014 6:04 PM (GMT 0)
Poplargrove, I'm glad you are encouraged. Since I had not had any spinal surgery before I assume that made my surgery and recovery easier. I did give up all the things you mentioned, except riding in a car, for the sake of recovery. That kept my pain level low enough that my recliner and ice pack took care of it. At times I've wondered if I should push myself harder but my husband does not think so and since I don't have a job or children in the house, I just take it very easy. Actually I've gotten very good at that!
Posted 6/4/2014 8:21 PM (GMT 0)
Hi populargrove, As Susie has told you I have had three fusions done in my neck, the first two were ACDF's , with the first one done in 1985 at C6/7 and the second one done in 2009 at C5/6 my last one done on my cervical spine was posteriorly, and it was the fusion of  the articular joints at C3/4, they put rods and pins in on both sides to hold it all together! That by far was the most painful of them all and took the longest to heal and recover from, at least four months before I was feeling human again and it took quite a bit of Physical therapy too after that. It did what it was suppose to do, but the neurosurgeon warned me that the surgery was relatively easy for him but it would be a long and painful recovery for me, and he was right!

 For me I think I had 47 staples right down the center of the back of my neck, from the base of my skull down to the beginning of my shoulders!  What added to my misery was I have sleep apnea, and I could not wear my mask and use my PAP machine because I could not tolerate the mask straps on the back of my neck! After I finally got my staples out ( they were in for just over two weeks) I made a plastic brace thing that would cover the back of my neck so I could tolerate the straps, of my sleep apnea mask.  When you have a need you will find a way to accomidate it one way or the other! For me using the PAP machine for sleeping is a must as I also have oxygen bled into it to keep my O2 level up while sleeping.  Anyway for the first few months I definitely had my doubts about whether I did the right thing about having the surgery, but in the end it did what it was suppose to do and I am glad I had it done! For me the concern is now that I have C3/4 fused and I have C5-7 fused, all the stress in on C4/5, I just hope it can take it, and will last! I was told by my neurosurgeon that ususally the disc above or below a fusion will go bad usually within ten years of the fusion you had! I got close to 25 years before I had to have my second fusion. (Knock on wood!!! LOL)

Just be gentle with yourself ans above all don't over due it or do anything to strain your neck after your surgery! Your surgeon is right about having the injections, my neurosurgeon insisted that I have those, they are more of a diagnostic tool for them than anything else! Even if you only get a few days relief, it indicated to them that, that is where the problem actually is!

I wish you well and hope this all works out for the best for you! Please keep us all informed of your progress, remember when your here at this forum you are part of our chronic pain family!  We do care about each other, I know, the fine folks here, were all here for me during some really trying times!  Not just for my surgeries either!  They were my family so to speak! Heck I posted on this forum while I was still in the hospital right after my surgeries! It is a good bunch of really caring and compassionate folks that we have here on this forum!

Good Luck to YOU!

White Beard

Posted 6/4/2014 8:40 PM (GMT 0)
Thank you White Beard! I really like your name... Sounds friendly, distinguished, and experienced! All traits that I am sure come in handy on this forum. Do you agree that going with a neurosurgeon is better than going with an orthopedic surgeon? I wonder if the two are usually in agreement as to which treatment path to take?? Would like your take on this... Thanks!
Posted 6/4/2014 8:57 PM (GMT 0)
Personally I would rather have this type of surgery done by a neurosurgeon, the only reason I say this, is and orthopedic surgeon is a surgeon of the bones and joints, but, your spine is not just a bunch of interlocking joints, they protect your spinal cord and the nerve roots coming off the spinal cord come out of the spine and out the openings in the joints of the spine. A neurosurgeon is a surgeon of the nervous system including the brain. They are familiar with all the "ins and outs" of the nervous system! Being the fact that all these nerve roots are right there and the impingement of these nerve root are usually the cause of allot of a persons pain,........well I personally would want to have at least a second oppinion from a neurosurgeon, if not having the surgery done by them. A second or even a third oppinion can not hurt any thing, and in the end might prove beneficial!

I am not saying that an good orthopedic surgeon cannot do the surgery, it is just my personal preference! Sometime they have both surgeons there doing this type of surgery. I think you are wise going to a university teaching hospital and seeing the surgeons there, usually and I stress the word "" ususally"" you get better care and more qualified surgeons at a facility such as this!

White Beard

P.S. when I retired from the Air Force I retired my razor, and with age I now have a Santa Beard! Ha
Posted 6/4/2014 11:58 PM (GMT 0)
Many many thanks White Beard! I appreciate the advice so very much.. :)
Posted 6/5/2014 1:11 AM (GMT 0)
If you feel you are not ready for surgery (kinda like what I'm going through) then do not get the surgery done. Ask about Ultra sound therapy with maybe light physical therapy and see how all that goes for you. My Doctor pretty much let me make my decision and I said no I do not want hardware and all the bells and whistles...I'm just not there and ready for it. I also have a high incident of some type of reaction and therefore, that also made they leary of doing any surgery on me. It's a very hard choice your facing and you have to ask yourself if it's the right thing for you at this moment in time and if you can take the time off work for the recovery. Would you even have a job to go back to, as well...like I said you have to look at this from all points of views with your eyes wide open as the surgery on the neck is not easy.

Many well wishes to you and keep us posted as to what you'll do.
Posted 6/5/2014 1:41 AM (GMT 0)
Chartreux, thanks so much. I am in kind of a pickle, because I have osteoporosis already from taking IV steroids for autoimmune disease for years. I am afraid that my spine is going to crumble, and the bad thing is that I have been enduring this pain for 10+ years.

I know there are many who have suffered and continue to suffer much worse pain than me, but at this point, I literally have no life. My hubby has been great, but he is just about at his limit.

I am in bed for the night, with my ipad and wondering how much sleep I will get. This pain is my constant companion and it is getting hard to bear.

I plan on talking very closely and carefully when I see the surgeon for ESI follow up. I am terrified of the surgery, I really am, but the prospect of "living" like this for the rest of my days makes me want to .. Well it makes me really down.

I am a very creative person, i.e., artist...and not being able to create is not a good thing.

I love people, but it is getting harder and harder to fool them, not to let on that I am in so much pain, sorry I got started, but this is the end of the day, and I did more than I should have and I'm paying for it now, thanks so very much for your advice, all of this input is very valuable to me. Soft hugs to all of you....
Posted 6/5/2014 2:05 AM (GMT 0)
Poplar, I am glad that WhiteBeard posted to you. Like I said earlier, he has been there & done that & can offer up excellent info on both types of surgery. He is very straight forward & shoots from the hip so to speak.

Of course you are terrified of surgery, that is the normal reaction any time surgery is an option. If you weren't afraid I would think there is something seriously wrong with you, lol.

Just do your homework & get some opinions & you will make the right decision for you.
Posted 6/5/2014 2:42 AM (GMT 0)
Soft hugs-that reminds me of a very sweet elderly lady at church who loves to hug everyone tightly! She got me once and I cringed enough that she was aware there was a problem. I showed her my scar and told her I can't do such big hugs. She is the only one who has done that but I get nervous about it a lot.

I too was so scared of having the surgery and also of not having it. I knew I was getting worse and could not see a good ending for that. Susie is so right that you will gather information, then make your own right decision. Prayer will be a big part of that, I assume.

It scares me to think that I went to a chiropractor-just imagine what could have happened to my neck. He was smart enough to know he could not help me and sent me to a surgeon AND I took his advice about who to go to since I didn't know anyone else who had been through neck surgery then and had not found this site yet. I was being well cared for even in my ignorance. When we told the surgeon we believed we had been led to him and had asked friends to pray for him during the surgery, he replied that he always prays for his patients while he is washing his hands.
Hope you are resting well tonight!
Posted 6/5/2014 2:13 PM (GMT 0)
I understand the 10+ years of pain, in 3 more years it'll be 20 yrs of pain for me, amazing how a car accident can change your life...
I wish our choices in life were easier, good luck to you and you have my prayers and well wishes, sounds like you know what to expect...Keep us posted as we'll support you with prayers and advise.

I have RA in the added mix and like you very afraid when they go in everything will crumble...If you need to get a second opinion as well. Make sure it's the top Doctor as well...The top Doctor in my area is Dr. Westmark...If your in the Houston Area...
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