new to forum....any feedback appreciated!

[TwinsMommma]

i'm soo glad i came upon this website...it never crossed my mine to join a patient forum UNTIL several months ago my father diagnosed cancer and i was gladly put in charge of the research end of the caretaking process...in addition to educating myself and reporting back i found it very helpful to read patient forums and let mom/dad know what others who been thru it tips..etc..   ANYWAYS...so here i am...
my surgeon told me that the collapsed L5-S1 disk has developed way too much arthritis for art. disk replacement..BUT your L4-L5 may could handle art disk...he says i'm too young for a double fusion and he can not go in and fuse L5 without fuse or disk replace L4 b/c it is 50% collapsed..therefore, he suggests rigging it up for a couple years by doing a rhizatomy(sp?)...which basically deadens the nerves causing pain....i have one more round of facet joint inj to do then rhizatawhatever....BUT, BUT for now i am on meds waiting better insurance and going to new surgeon...so who knows when that process will begin...ANYWAYS...what are your thoughts of fusion...and your thoughts of my situation....i'm open for suggestions....SMILE....aren't we all...heehee...desperation at times
just turned 37....i play a lot of tennis and golf but haven't played in a year...i would love to re-join my tennis team BUT MORE IMPORTANTLY i would like to be more active with my 2 yr old twins!!!!  i really need to consider the fusion sooner rather than later...i don't understand the too young theory being that these are the years my kids are young and prime years for competetive tennis....i think part of the hold up it not too young for single fusion but a double fusion...and like i mentioned before the docs can't fix one without fixing the other...i need to get more info on the rhisatowhatever and see if this needs to be skipped and just basically be pain med managed in the mean time.
do u have more details of why rhizatomy is painful etc...or direct me to anyone who had it done??? also can u respond any info from your knowledge/experience of double fusion (what i wrote above basically) AND (sorry for many ?'s...thanks in advance) AND what type of meds do u think is best...mine is working ok..could be better...DEFINATLEY has been under treated more in past....i take 4 norco a day and just started 1 (50mg) lyrica at night two days ago...??
thanks again

[Tuckamore]

Hello,

Welcome to the Pain Mangement Forum. I am so glad that you found us and posted.

I agree that you are young for a fusion, let alone a double fusion but I am far from an expert. I hope that you have sought a second opinion. I beleive that is always advisable.

If you haven't already seen it, Dr. Jim Humpries B.S. D.V.D. just posted his recent experience and an informational link on the Rhizotomy Procedure. If interested please follow the address below:

http://www.medhelp.org/posts/Pain-Management/Anyone-Have-Good-Results-with-RF-Rhizotomy/show/1197220

I don't beleive a rhizotomy is a very painful experience for most ppl, at least from what I have read and noted on this forum. However we are all different and respond differently to procedures. It may be a good alternative to a fusion at this time. It may ease your discomfort for three to nine months....and for others it has been effective even longer.

You are on a fairly low dose of narcotics so I wouldn't be overly concerned about that aspect.  You may very well be managed with opiates and a rhizotomy for some time. The less non-invasive procedures you can avoid the better in my opinion.

Following a fusion(s) it is not uncommon that the disc above and below the fusion(s) develop problems. It can become a painful cycle. It sounds like your surgeon knows what he is talking about. It should be comforting to know that he is not jumping right into surgical repair.

We will look forward to your active participation in our community as well as hearing how you are doing. We all learn form one another. Please keep in touch.

Best of luck to you.

Take Care,
~Tuck

[carjockey71]

I'm 38, and am a 'double' fusion patient that failed, not because of the Dr, or anything it just did. I started this journy at 24, 6 surgeries later, bunch of complications, huge intake of pain medication, I would get a 2nd or 3 'opinon. I wound up having a BAK fusion, grafts from my right & left hips, facet screws, futhur' stabilization surgeries, then every injection set know to man, facet, triggers, epi's, - literally hundreds of them over 14 years, as well as every kind of Physical Theraphy known - experimental stuff (like joining the marine corps)- boot camp style, aqua, message, etc All to wind up with 'failed' pretty much behind everything. When I was having all this done the artifical disc was just coming out and my surgeon & F/U opinions told me that I needed to 'stablize' my spine with the removal of L5/L4, then let the artificial disc be used for awhile and go from there. Good advice, but one you build a caging system and support it with screws, pins, rods, bone, you develope scar tissue from every surgery, athritis (sp) and sue to a very inattive nursing staff, a wonderful thing called INTERCYSTIAL CYSTITUS (sp). If your in a place where you cab live with the pain through medication and PT, I would avoid surgeries, it's a catch 22. Once you go down that road you don't get to turn around. I'm 38 and the topic of removing the caging came into my life recently and while I live at a 4+ on the pain scale WITH medication, can rate without it, I would have ZERO quality of life, a 4 stinks compared to a 0, but then again I lived at 7 for awhile so a 4 is heaven.

If you can, avoid any surgeries unless it's the last resort, if your pain in managable with medication, then stay there. It's going to get worse with age, sorry to say, and I'm not in a place where I would advocate surgery, but unfortunately for me I have a 'grass is greener' outlook and think were id be withouut the 1st, even second incesion. No matter where I stood  any option looked good, I got 4 opinions on my 3rd surgery, which the Dr were in agreement, but I was already down that path. They wanted to put a 'pain pump' in, I refused even to 'try it' so I'm jaded about the surgical resolve because I wonder if I could have worked it out other ways. I'm not a Dr, just a patient. You should go with your 'gut' instincts, you can research the topic to the end of time and you'll eventually find a valid disputing argument to what you may have considered your salvation. One of the finest PM Dr's I ever had the pleasure of knowing told ne once (after I would tell him I researched this & that, what about thus medication, what about thiat one, etc I exhausted myself mentally and physically looking for answers. If I would had simply stopped when I met with my different Dr's and went with my 'gut' instinct, I think I would be in different shape today, that's a mighty big assumption coming from my world. But all I can say is 'MY gut reactions were good, I should have listened more to my own body and less to science. I was younger then and I would have waited as long as I could before a surgical answer, then gone from there - but I didn't. I was nit forced into anything, my Dr's are all great people (past & present) but they don't know what your body is telling you, maybe you have already taken many moments to listen to it, maybe none - if you haven't listened to your own body and what it says I would seriously suggest putting the brakes on and listen to your gut. Dr's know medicine, their men & women of science, they know how it's suppose to work, what the data says, test results, etc - you know you. Hopefully I have in some small way helped and not hindered . Just a second point, if your insurance isn't that great, then maybe waiting until you have coverage for all the little odds and ends ghat come up ALWAYS you'd be better to wait. Do you qualify for SSDI, because if you do you can get Medicare part B to supplement your insurance, worth checking out or maybe the state you live in has a supplemental program, I've always had GREAT insurance, and hit over a million with everything. My meds are $6700 a month, thank goodness for insurance, I pay $260 of that.  Check out all your options as well as the possiblility of you being out of work for awhile, or forever. I paid $900 per month in COBRA payments until I got married for insurance, a REALLY GOOD DISIBILTY policy might worth consisting, it's the only thing that saved me. I actually had 2, but one company utilized a non exsistant loop and denied my claims after 3 mos, the other company 'IDS' which is AMERICAN EXPRESS is exceptional - I just never kept my policy up to my income - which was a huge mistake, because  syruggling
now. Look at all sides - even the remote ones, and cover yourself from every concievable angle, I wish you the best, God Bleas

[TwinsMommma]

thank you very, very much for this info..i welcome all info good, bad and indiffernt...i prefer for people to just shoot it to me straight...
funny you talked about gut insticts...i totalyt agree and i think i have good intuition (almost to a fault...smile) and i will take your advice and listen to my insticts!!
i'm in no hurry for surgical procedures (scared anyways) or the rhizawhatever...i prefer to be pain med managed while i continue to way out my options and listen to my body, gut etc.. i am currently trying to educate myself and pick people's brain's on what is the best pain med manage route for me...
thanks again!!! i sent u a personal message and if you don't mind i plan to not only refer back to this message (especially the insurance advice) i may ask futher ?'s in near or far future

[sandee1818]

Hi,
   Welcome to to the pain management community! We are so glad to have you here.
I would advise talking to your doctor about an extended release medication. There are several good ones and you will most likely need a breakthrough medication also.
I take oxycontin and then take oxycodone for break thru pain and take ultram also at night. I have been dealing with chronic pain for over twenty years so I have tried alot of different types of medications and this regimen works for me. Everyone is different though and you will need to find what works best for you.
I have heard this from alot of people who have had surgery and they say do everything you can before resorting to surgery. Now there have been successful surgeries also but in my experience from dealing with chronic pain for twenty years and speaking to hundreds of people on the subject I think surgery should be avoided until absolutly necessary.
You do have other options. Medications and things such as bio feedback and many options you can talk to your doctor about.
I hope to hear more and let us know how your doing:)

[namnam46]

This is the first time I have posted. I've been waiting until I hoped that I could help someone. I was diagnosed with DDD and have also had two hip implants ( the SAME hip twice). I was diagnosed with Osteoarthritis when I was 29 years old in my hip. I needed the hip implant then. But because it was a pretty new procedure then (that was 35 years ago, I'm going to be 64 in July) the doctors had me wait as long as I could so they would have time to perfect a better hip implant. I finally had it done 6 years later at the age of 35 and there was NO hip joint left in my body. Putting off the hip implant caused me to have a disk rupture because of the stress on my spine having to walk the way that i did. So the next thing was to have the disk removed which caused the DDD and sever osteoarthritis at the base of my spine and back. I was diagnosed with DDD in 1994 and at that time the doctor diagnosed it as being at a stage 4 out of 5. I used to 5'4" and I am now at 5'1/4". I was granted my SSDI the VERY first time with NO problems at all. I had it granted within the first 3 1/2 months were up. I have had wonderful doctors both in Tennessee and here in Phoenix since I moved here last summer in 2009.
Sorry about the lengthy post but I wanted you to have the background.
I just had the second side ( right side) of my RFA done yesterday. ( The first side, left, was done two weeks ago.) The procedure was not painful at all. And I have had wonderful results. I am on the Fentenyl patch (50) and I take 1/2 to 1 10/325 Oxycodone for break thru pain.
If you qualify for the RFA (radial refractory ablation) please don't hesitate to give it a try so that you can resume as close to normal a regular life for you, your husband and those 2 beautiful babies of yours.
BEST OF LUCK TO YOU!!!! If you have any more questions I would be happy to go into detail for you on the procedure. ...Sherry or as the Grandkids call me NamNam