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Masha
05-19-2015, 11:08 PM
I have a moderate lumbar C curve with a large twist, it's only 38 degrees. I started having back pain a few years ago, I've been through treatment with several orthos and PTs, but the pain continues to increase. My latest ortho believes I am suffering from spinal stenosis, as most of you are. I refused an MRI because I don't see a point unless I want to apply for disability, which I'm sure I won't get since I'm so young. I have major sciatic pain in one leg and no feeling on part of my thigh. I'm on Gabapentin for the pain, it helps immensely but I hate the side effects. Still, I refuse to revert back to the nerve pain so I deal with it.

I live in Montana, there are no certified/recommended doctors anywhere near me.

I don't know what to do anymore. I'm 32, female. I used to be extremely active, hiking, backpacking, skiing, shoveling snow. I lived for it. I can't do any of it anymore. I can swim, but gym memberships are expensive and I don't find swimming enjoyable. Back and forth. Cross country skiing is actually relatively pain free for me, so I find summer brings depression. Quite the opposite from my mountain climbing days.

I know no one has the answer, but does anyone have advice as to how to continue to live with this? Are long term pain/depression medicines helpful? Cortisone shots? Anything else that my doctors haven't thought of? Any books or other information that anyone recommends?

leahdragonfly
05-20-2015, 09:12 AM
Hi Masha,

I was in a somewhat similar situation as yours prior to surgery, with a 35 degree lumbar curve at age 40 and severe spinal stenosis in the middle of it. I was having progressive back and especially leg pain/sciatica. I did all the conservative treatments for several years, then my curve jumped up to 47 degrees in 2 years time. I have kids and an active job, and was not willing to just live like that. I had a successful surgery which relieved all my leg pain and spinal stenosis symptoms, and stabilized my lumbar curve.

I worry that you have so much leg and nerve pain without a definitive treatment. An MRI would provide answers to guide treatment and help you have all the information needed to decide if you need surgery. Surgery is sometimes the only answer to prevent permanent nerve damage from spinal stenosis. You are much too young to just live like this. Is it possible for you to travel to see a scoliosis specialist in a lager city? Local spine specialists that do not specialize in adult scoliosis surgery will not be of much help, as you already know.

Please consider traveling to get an opinion (with MRI and x-rays in hand) from a reputable scoliosis specialist before deciding to live with debilitating pain and a lifetime of pain meds. Many here have had successful surgeries and gone on to lead active, comfortable lives.

Masha
06-14-2015, 09:06 AM
Thanks for the reply. Per your suggestion, I did go ahead with the MRI at least with the intention of using the results for a disability claim and it came back very different. They found a neoplasia in my pelvis (tumor). Still running tests, but I wanted to say thanks for encouraging me to look into this further.

green m&m
06-14-2015, 01:09 PM
I hope you get an answer on what the finding is quick. Keep us posted.

titaniumed
06-14-2015, 01:11 PM
Pain is an indicator that something is wrong, and this is a perfect example of why we need to see our specialists before charting a course of action. Great post by Gail.

Hold your head up through all of this, its not the end of the world....many of us here have hung in there through all of our issues and have done ok. And if Clint Eastwood can make all those great western’s being allergic to horses, “I reckon” you can do this.(smiley face)

Be sure to let us know how this all turns out, and you can still ski and hike if you do eventually end up getting fused at some point. I have threads here on this matter.

I would recommend David Wolpert’s book, and posting here.

Hang in there

Ed

susancook
06-14-2015, 04:52 PM
Hi! You did not mention exactly where the pelvic tumor is or what the recommendation was for follow up. As you are probably aware of, pelvic masses can be a cause of back pain....or in the case of benign uterine myomas, they may not be of any significance.

To answer the original question that you posed: ice (especially) and heat greatly decreased pain for me; NSAIDs were
So helpful for pain.

There are 2 ways of figuring out the best course of action:
1) have an exact twin sister with the same exact scoliosis/back problem and she does one treatment and you do another.
2) have a crystal ball and be able to see into the future

So, now that you are either laughing or thinking that I am crazy....and there may be some truth to the latter. The future of your back/scoliosis can either: Get better, stay the same, or get worse.

I totally support so many of the suggestions above from some of the wise and sage folks on the forum. In general, I suggest: do EVERYTHING that you can do on the conservative/non-surgical side before considering surgery (like PT, acupuncture, injections, other intervention treatments not surgical like radiofrequency ablation, etc); get all of the information needed to consider all of the options; get a few opinions from adult spinal surgeons with a lot of experience at a university hospital; keep a notebook with all the information that you gather.

Keep a running list of questions to ask each spinal surgeon. One question to ask is: what would the surgeon estimate would happen if you wait to have surgery or never have surgery. Many surgeons will probably start out that " they cannot predict the future"....ok, but what is their best guess? One surgeon said that the longer someone has sciatic pain from stenosis, the less likely that the pain can be alleviated with surgery (I could look up what she said exactly, but I think that it had something to do with pain pathways being established).

****Remember, if you ask a SURGEON for an opinion, the opinion is usually for surgical intervention. Most good surgeons make sure that the person has tried conservative treatments first.

Seems that from what you said that you need to travel for surgery if that is your choice. Never take the surgical option lightly. It should be the last choice when your life has changed so much that you spend most time dealing with pain and your life has changed in that you are unable to do most of the things that you like to do. Many folks on the forum have traveled and it can be done, but has disadvantages. I traveled 12 hours for my first surgery, mainly because the postop recovery options in staying with my son and his family were so much better than the option of the local surgeon. I went to rehab for 2 weeks after a week in the hospital and stayed with my son and family for 6 weeks (when I had a checkup with the surgeon). My husband put a thick foam mattress in the back of our Toyota and i slept (drugs...) well in the back of the car for the first part of the travel and sat up front for the second day. i am much older than you are, so recovery was longer ;+[. I was very lucky to have 2 options of highly skilled surgeons to choose from for my first surgery.

Best of luck with your journey to wellness and getting back into the mainstream of life.

Susan

LindaRacine
06-15-2015, 12:05 PM
I'm guessing that non-operative care won't be an option now.

susancook
06-15-2015, 12:51 PM
I'm guessing that non-operative care won't be an option now.

Non-operative care is always an option.

When one's quality of life is so compromised by pain or curves compromise lung expansion,the surgical option becomes more appealing. But, not having surgery is aLways an option. Those of us that have had surgery can look back at the surgery as a life saver, not quite as good as we had hoped, or a big mistake. The majority of us look at the former, but some unfortunately retrospectively regret having surgery. I am very pleased with my first surgery....and all of my surgeries, for that matter. While I probably acquired my infection with the first surgery, I was in such pain that I was spending my life on my sofa and limiting social/volunteer/travel activities. My spinal cord injury was one of those rare complications....just the luck of the draw.

I still vividly remember going to X-ray before my first surgery and seeing a very bent over lady about 10-20 years my senior. I thought, "That's me in the future".

My physiatrist said to me last week, "You've got what you've got". I am trying to move (or more accurately "wheel") on and not make second guesses or shoulda, woulda, coulda regrets. That doesn't get me anywhere except mired in my own puddle.

Susan

LindaRacine
06-15-2015, 07:55 PM
Susan...

I think the fact that Masha has a pelvic tumor means that she's probably going to have surgery to remove it and rebuild her pelvis.

--Linda

Masha
06-16-2015, 05:13 PM
Well, the saga continues. The follow up confirmed that I do not have a tumor. I don't know what he saw that he thought was one, I didn't ask. He says I have only mild spinal stenosis and sees no reason why I have pain/sciatic pain. That's it. I felt like a criminal, or a crazy person, making this up. I asked if there was any treatment/medications to help besides the gabapentin, he said no. He said I could keep in mind the cortisone shot as a back up plan if the pain gets worse. But the pain is already so bad I am having trouble going to work. Do I wait until I get fired and can't walk at all to seek treatment? Do the injections really work? He said people my age can have up to a year of relief from one. But he didn't really offer it to me, just said to "keep the idea in my back pocket".

So, besides surgery (don't want it and don't qualify for it), gabapentin (already on it), physical therapy (still doing it, third therapist), what do I do? What do you do when getting through a day of work involves several doses of NSAIDS, gabapentin, and omeprazole to try to save my stomach from all of the NSAIDS? How do you keep doing that everyday, just to make enough money to get through to the next day/week/month/year? It all seems so pointless.

I understand that heat/ice helps, so does the tens unit, but this all takes time. So I sleep, wake up, get ready for work, make lunches, work all day, come home exhausted, make dinner, heat/ice/tens until I fall asleep. Is that life? Why would I get up and do that everyday?

What about books? Are there any books that helped anyone through accepting this? Or psychological therapies?

jackieg412
06-16-2015, 07:17 PM
Marsha can the tumor be causing some pain? Also, sometimes another doctor can see something different and you get another opinion. If your insurance will pay for it you could bring your tests on disc for another doctor to review. Try not to get discouraged. Stay the course and above all speak up. Ask questions and then ask more questions. It took me forever and 4 years to get the an answer to a problem . I think I have it now. Surgery is needed and I am just waiting for the date. Keep looking for an answer.

LindaRacine
06-17-2015, 12:42 AM
Masha...

I'm glad to hear that you don't have a tumor. I know it's probably disappointing to not have something concrete that can explain your pain.

If I were you, I would probably seek a second opinion and/or see a pain specialist. The decision to start narcotics should be difficult. A large percentage of people who start narcotics for back pain end up taking them for years, and many never get off of them. And, one thing that's pretty universal is that narcotics do little or nothing for sciatic pain. You also mention depression. If you're not already working on that, I encourage you to do so. Depression is one of the key factors in pain control.

Best of luck in dealing with everything.

--Linda

springchicken
06-17-2015, 08:48 AM
Hi Masha,

Just checked in on forum and read your post. I'm very sorry you are having so much pain. I agree with Linda about seeking a second opinion so you can find someone who will explore more options with you and take your pain seriously. I've had nerve pain since my surgery. Just saw a neurologist yesterday and we decided I'd try a compounding cream that targets nerve pain. Maybe that's an option for you? I'm on gabapabtin, too, and before I explored other med options I wanted to try a topical solution.

I've also started seeing a neuropsychologist to deal with the mental toll of the pain an am going to begin biofeedback treatments. Maybe another thing for you to explore. Good luck to you with whatever you decide to try!

green m&m
06-17-2015, 09:43 AM
I also agree with others that you should seek the 2nd opinion if you can.

Get a hold of your MRI scan CD and the report itself - I've had scans totally misread and so it'd be good to have another set of eyes look.