New Member Facing Possible Surgery (Spinal Fusion)

[Jan P]

Hi, My name is Jan, living in Arizona with my husband. Just found your group and hopeful to learn more and get some feed back relating to my problem.

My pain is mostly in the right leg, inside knee, calf, toes, thigh and sometimes lower back.

I had been treated in Tucson by two different pain docs for "spinal stenosis". After the three epidurals, facet injection with little relief I went to a new pain doc who performed this RF treatment in April 2010. I have been worse ever since. This doc basically said, "I did a good job, you must not have SS and need to see a neurologist". While in California this summer I decided to seek help and maybe find a real reason for my pain, so got into the UCSF Spine Center. Met with a wonderful doc who said I do have SS, but there is something else causing my leg pain. He ordered the MRN (apparently al ot of doc's don't even know what this is - or you can not find one in your area).

The findings were:
L5-S1 right lateral disk osteophyte complex contacts the extra foraminal right L5 nerve root with mild edema of the right L5 nerve root extending 2 cm distally along the right lumbosacral trunk.

L4-L5 there is apparent worsening broad based disk bulge which in combination with extensive bilateral facet arthropathy and ligamentum flavum buckling and congenital spinal canal narrowing caused at least moderate to severe spinal canal stenosis.

The neurosurgeon I saw at UCSF wanted me to have the CT guided Selective Nerve Root Block (performed 8/11/10) to make certain that the L5/S1 nerves were the problem. Then the only way to fix this is "very invasive surgery thru the belly". The first two weeks post Nerve Block my pain level dropped from 8-10 to maybe a 0 to 2 or 3. But now it's the 4th week and my pain is at 6-7 or worse.

The UCSF doc referred me to a surgeon in Phoenix (Barrow Neurological Inst.) who basically said "NO". Not sure what No meant, so I sent my records to another surgeon there and waiting for his review. I would rather have surgery in AZ as it would be easier for recovery, etc.

Sorry for going on and on. Has anyone had this sort of diagnosis and what was done to help you? Do you have any suggestions for me or know of good doc's in Tucson or Phoenix. Please don't get me wrong, I am not doctor shopping, but this seems really hugh and I want to know that if I need surgery, I have the best doc to do it.

Thank you for help
Jan

[KBear]

Jan,
Funny you mention doctor shopping, that fear of being labeled that kept me with a bad doctor for longer than I should have stayed. When it comes to spine surgery, you can't get too many doctor opinions. I think most of us start out at these offices where they write our medication, give us injections, do our pt, etc.- one stop shopping. In those offices, they usually frown on you seeking a second opinion, hurts their egos. What I ended up doing (and a lot of other spine patients do) is find a good pain management doctor, who will treat you regardless if you have surgery, or not, with them or with someone else, they are in charge of all medication, even post surgery. Then, make it clear to them that you are getting surgical opinions from others, but that you are not accepting medication from anyone but them (I won't even accept medication from my dentist if I have a root canal, as I do not want to do anything to jeopardize my spine care). When I had surgery it was out of state and my pain management doctor knew this, the surgeon out of state wrote my meds for the time I was in his state, and for a few days after I would be home. I then immediately saw my pm dr. and told him what the other dr. had given me post- op, how much I had left and he then wrote for me then on out. Good communication is key in the pain management doctor/ patient relationship.

I would definitely get multiple opinions from surgeons, even from out of state/ out of country, even if you have no intention of having surgery there, you can get valuable input that way. I have no personal experience with your condition, so am no help there. Good Luck and ask any questions you may have.
Kathy

[Jan P]

Kathy,
Thank you for your reply. I hadn't thought much about my pain doc (the last one), but your right, I need to have someone who I can talk to and have prescribe my meds. I am currently taking 1800mg Gabapentin, Vicodin and or Tramadol for addtional pain. Since we returned to AZ from CA, I haven't seen my pain doc and I am sure he does not know of this new diagnosis. Since the neurosurgeon at UCSF is the only one who said I need this surgery, I really want one or two other doctors to agree.

Thanks
Jan

[Wishful Runner]

Welcome, Jan!

I'm not a big fan of pain medications because in some instances, masking the pain causes you to do things and move in ways you shouldn't and you wind up hurting yourself even worse. That is the way it was for me, anyway. I know now that when I do take pain meds to always keep in mind to moved properly so that doesn't happen again. It's just something to be careful of. I am currently taking Darvocet for post-op pain.

What kind of surgery is the surgeon in CA suggesting for you? Sounds like an ALIF maybe?

[Cindylou]

Welcome Jan, Kathy and Wishful have such valid points to consider. And I agree completely on getting several other opinions, for 2nd and 3rd review of your condition. It does sound like it could be an ALIF the California doctor is considering. Is that correct? Do you mind me asking, who is prescribing your pain meds then, if your pain management doc doesn't know about your new diagnosis? Best to find a good pain management doctor as you wade your way through all this, and keep your meds consistent. Keep asking away and researching...and I wish you only the best, Cindylou

[Gilbert P]

Hi Jan

You have some great advise.Look Listen and Learn.

Gil

[Jan P]

Wishful and CindyLou

Thank you both for your replies. I do not know what ALIF is and the only thing the doc in California said regarding the surgery was "a very invasive surgery thru the belly". He never gave the procedure a name or explained more. I can only think that he wanted to see how the Selective Nerve Root Block worked before giving me more details. I am actually due to call his office (should have called a few days ago) but was holding off until I heard from this other doc in Phoenix. I should here from his office today hopefully. I feel my only choices in CA are, try another nerve block or surgery. So, I really need at least another doc or two to agree.

Regarding my pain meds. My doc in Tucson is still my "pain management" doc, even though I haven't seen him in several months. I have enough of all my med's that I don't really need to see him. However, I agree the I need to have contact with him and let him know what is going on with me, so that he can keep monitoring my meds. I was just so angry with him during our last meeting when he told me "he did a good job", he doesn't know what's wrong with me", "your a mystery". I guess it hurt his feelings that the RF treatment did not work.

So what is ALIF?

Thank you for your concerns.
Jan

[Gilbert P]

HI JAN

ALIF Anterior Lumbar Interbody Fusion
PLIF Posterior Lumbar Interbody Fusion

There are many Abbreviations we will help

Have you tried to see Dr Yeung in Phoenix he does MISS

Gil

[Gilbert P]

Hi Jan

MISS= Minimally Invasive Spine Surgery

Gik

[Jan P]

Gilbert,
Thanks for explaining the initials. What is MISS? I will check out Dr. Yeung.

Jan