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I have a Major Dicision to Make

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Old 09-10-2005, 06:26 PM   #1
Join Date: Dec 2003
Posts: 72
NicoleMiller999 HB User
Lightbulb I have a Major Dicision to Make

Hello I posted here before when I went to the Orthopedic and the PA told me I had Sciatica. The pain got so bad that I went back way before my scheduled appt and spoke with a Dr who then ordered an MRI. The MRI found that I had a Herniated Disc in the L5-S1 region. He then said I needed to see the Neurosurgeon to discuss my options. I saw him and he had me try to do some excercises in the office to examine me. I couldn't stand on my right leg at all and it basically is knumb in that region. He said that he thought I was way past the point of any physical therapy helping or the Epidural shots and that it was time to consider surgery. I don't know how many Centimeters the disc is herniated at. All I know is he said it was a large one. I have read alot of different stories and I am soooo scared of surgery. My friends mother had a herniated disc and she had the same symptoms I did but she opted to get the shots and has been pain free for more than 16 yrs. She says that since I am young I shouldn't have the surgery. Something about once they open up your back for one back problem here comes more. Another woman I know suffered for a year and she said it just went away the pain. I guess what I would like to know is if this "herniated disc" heals on its own and will the nerves stop being inflamed on their own? Should I wait it out or should I have the surgery? I hear having those shots doesn't mean I will be pain free. And actually I hear that the surgery itself doesn't mean my nerve damage won't be permanet. I am sooo confused any any advise given would really help. I trust the people on the board cause you are all in the same boat I am in and not trying to make a dollar like most Dr's are when they are quick to say "Surgery" Thank you so much

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Old 09-10-2005, 07:09 PM   #2
Join Date: Dec 2004
Posts: 1,291
Quietcook HB UserQuietcook HB User
Re: I have a Major Dicision to Make


It's okay to not want surgery, but don't let an abnormal fear of fixing something that needs repair keep you on track for continuing problems.

First, as you know, both ortho and Neuro surgeons work on backs, but may a veteran of 8 spine surgeries who has dealt with temporary paralysis and is now walking and doing with 10 levels of spine fused, I want to offer some recommendations for your consideration before you jump in any direction. I have an old post on the board, you can find by using the advance search feature, entitled "how to find a spine specialist in your local area". A spine specialist can be either ortho or neuro, but is far more specialized and experienced in the spine than a general ortho or neuro.

After I was paralyzed, I learned the difference, and searched my states database for those ortho's and neuro's who had completed spine fellowships of 1-2 years, and who had listed their state licenses as spine specialists. Using our state's database and other doctor finding type sites I was able to find out if they actually practiced full time on just the spine or were "general" ortho and neuros who just listed spines as a speciality. I also asked when I phone their offices if that particular doc took patients for anything other than spines.

It took me several weeks to find the right one, and I actually saw about 10-12 doc's in that time, so I felt like I was making the rounds, but who knows, if I had been lucky I would have found the right doc on the first visit and cancelled the others.

The reason I encourage you to find yourself a good spine specialist who meets your criteria, such as whether you want one who treats the patients for pain even after surgery or do they refer patients off to pain management doc's. Other things to consider, do they read the films you carry or do they just take the radiologists reports, do they mind answering all the questions you have and especially are they offering you the latest options such as artifical disc replacement or Dyneses, do they spend more than 3 minutes with patients, etc. Address those things that you want in a doctor. But, research options available so you can be your own best advocate.

It wasn't until I found a spine specialist that I learned that had my last herniation been repaired within 6 months of severely compressed nerves, full recovery was an excellent chance, but it dropped to 75 percent at 9 months and I was past that, but it would drop to 50 percent chance of full recovery at a year. My general ortho and neuro's had not told me that, and while I didn't want surgery, I would have consider that information had I known it increased my chance of not ever getting rid of the pain and/or the numbness. I was lucky and left only with the numb toes, but we need FULL information to make good choices.

General ortho's and neuros usually offer us the PT, the injections, maybe discectomy or the rf burning (can't think of the correct name) and finally fusion, but typically cannot offer the artifical disc replacement to let us have the chance of retaining full flexibility and retaining natural spacing, etc so that we might not have more herniations and increase the liklihood of fusions.

BionicWitch has a thread at the top of the page about good news for lots of us and it has the web site which is an excellent source for information. You might find it helpful before deciding for sure what path you will take.

It's never easy unless the pain or nerve damage is so severe that we loose our legs or bodily functions, and I admit that in those cases I no longer fought surgery. However, as much as I did not want surgery any of those times, research, finally having a good specialist who took the time to explain things so I could understand the risks of pros and cons and waiting or trying other options based on the current condition, and having a specialist who worked with me, but was also willing this last time to show me the xrays and point out the changes in the two months since the last visit and say that we cannot wait longer, explain why the ADR with fusions would not work (what I had hung on for FDA to approve) in my case, and be honest enough to show me how close I was to severing my cord and becoming permanently paralyzed.

I hope you will seek out a true spine specialist who dedicates 100% of his practice to the spine and is up on the latest and greatest techiniques. If you do need surgery, may you be as blessed as I am. Although it's been only 9 months since the last surgery, which fused 10 levels, I am able and doing, still maintaining my home, yard, and caring for an ill parent. Am I 100% pain free? No, but some days there's no pain, and very manageable pain the other days. For me, I'm so glad that I did not choose to go strictly pain management route and not correct the problem that created the pain.

Whatever you choose to do, best wishes.

Old 09-10-2005, 07:21 PM   #3
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Join Date: Apr 2004
Posts: 136
girl12345 HB User
Re: I have a Major Dicision to Make

I would try everything that you could before you decide to have surgery. Also, get many opinions. I have two herniated disks, but only one is really bad is and thought to be causing me the most pain. I was getting better until a car accident last year. I have not seen any improvements since then. I have tried PT, medications, injections and massage therapy. My doctor thought that I might need surgery. I saw three surgeons and all but one stated that if I am hurting a lot and it is interfering with my life, then get the surgery. The third one stated that because of my age he will not do any surgery and I have to live with the pain. It took me four months to decide that I should get the surgery. I am getting the surgery in a few days. I am getting a laminectomy/discectomy. It is only going to buy me time for a more complex surgery. Eventually I will need a fusion. I do agree that once you get back surgery, then you will eventually have more problems. But, that is true with most surgeries. I broke my ankle a while back and needed two surgeries because the first surgery caused too much scar tissue and needed to be cleaned out.

Please do not decide surgery without trying all of your options and getting multiple decisions. Find the best surgeon that will listen to your concerns and care about their patients. Also, research what they are recommending. Let me know if have any questions.

Old 09-11-2005, 04:34 AM   #4
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Join Date: Apr 2005
Posts: 420
smc612 HB User
Re: I have a Major Dicision to Make

hi everyone----i agree with all. it depends on the situation. i have 3 herniations. shots and therapy put me back to work pain free. now my husband is a different story. he herniated 4 discs(lower lumbar) 2 of which went out to the right an dleft. they are also deteriorated. he spent 18 months with shots and therapy before finally deciding on surgery because of the leg and groin pain,bladder and bowel problems. wish he would've gotten a second opinion. a neuro did the surgery. legs are pain free still has some pain in back. through the surgery they released his spinal fluid too quickly and it blew a hole in his sinuses. very uncommon but since he has weakened sinus walls due to multiple allergies it happend. the surgeon has blown him off ever since his one month check-up after surgery. 6 months later he had very dangerous sinus surgery requiring a lumbar drain to be hooked up for 5 days, a chunk of muscle taken off his belly and a skin graft from behind his ear to patch the hole. when they were moving him from ICU they wanted to give him a shot of a known allergy to him. he was wering a medical allert bracelet, it was in his chart and he told the nurse 3 times that he couldn't have it. she shot him anyway. immediately went into anaphylaxis. thought the surgery was a succes until about 3 weeks ago. his sinuses are leaking again. now he is faced with possible having a craniotomy which he says he will never do. he is wide open to meningitis for the rest of his life. don't know what the second surgeon will want to do if anything. this all resulted from back surgery. for all of you who have had back surgery with no success and more complications my heart goes out to you. to the person who had the multiple fusions you must be a very positive person with a strong belief in God. unless there is no other alternative and you have researched and interviewed a few dr.s i would not advise anyone to have back surgery. there are complications that you would never even think of and no one will tell you. best to all of you with that unbearable pain.

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