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Still Hopeful..In search of help! Struggle provides strength<3

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Old 01-07-2012, 09:31 PM   #1
Join Date: Jan 2012
Location: Murray, Kentucky
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77hopegirl HB User
Question Still Hopeful..In search of help! Struggle provides strength<3

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I am not really sure how I ended up here, but after reading so many posts tonight it has given me some hope and comfort knowing that I am not alone. My story is long and at times even unbelievable to me and I lived it. So my intention is not to bore anyone but to hopefully grab someones attention that could help me!! It all really started in 2003 when I was involved in a motor vehicle accident. From this I had a spinal cord injury that resulted in numerous back surgeries, all unsuccessful until 2007. This is when I had a spinal fusion with somewhat good results. Unfortunately in 2009 I had ANOTHER MVA, fortunately I did not injure my hardware (2 rods, 30+ screws, cage, 3 plates) but did have a significant knee injury. I had tore my ACL, MCL, this required several surgeries (7) to fix..Which almost leads me to where and why I am here today seeking help. On August 25, 2012 I had another ACL surgery because I continue to keep tearing it, as I have been told after an initial ACL tear you run a high risk of continuing to tear it, which of course I have!! I was feeling GREAT after this at was at PT in Sept (11) and the therapist put weights on my (L) ankle to strengthen my quads, I was on about 4 reps has I felt alot of pressure and pain in my lower back. I honestly didnt think it was anything so I continued on and that is when I heard a pop and had intense pain run through my back into my (L) leg. Of course we stopped at that time and I was hoping the pain would ease, to my dismay it increased. I went to the ER where they did some scans and said that I had bulging discs. Which were not present and a new injury from prior scans in 2009 (MVA scans) So at this time they gave me a referral to a spine center, because my neurosurgeon that did my back surgeries was in REHAB for substance abuse!!! HOW SCARY IS THAT??? So I apologize for the length in this post, but in hopes that someone can help I want to make sure I provide all details. When I went to see the Dr. at the spine center, he stated that I would need surgery to fix the bulging discs but he would have to go through and take out my hardware to fix them. He stated a 8-10 surgery with only a 30% chance I would ever walk again At that time I asked him if there was anything that I could do to avoid that? He then recommended injections/spinal block. At that point I didnt think the pain could get any worse....oh I was incredibly wrong!! I completed injections and a spinal block both without any relief. The Pain specialist recommended a 2nd opinion but she herself thought surgery would be the only answer for relief. This is where I feel such a disconnect. I went for 2nd opinion and during that process the pain in my back was intolerable, I have nausea with and without vomiting leg pain, numbness and weakness. This has all resulted in me not being able to barely walk. So they admitted me into the hospital at that time and did an MRI which I have. They 2nd opinion Dr stated nothing he could do surgically. Didnt really explain anything to me at all. I instantly felt anxiety that I would just be like this forever!! While my 7 day trip in the hospital my b/p's are running entirely too high at one point 220/168! Which they are saying pain induced! They sent me home, with home health, pain meds, home PT!!!! This has caused me so much sadness but I am a true fighter. After two traumatic accidents, even the loss of my mother through this, I continue to FIGHT. I do not want to just give up! I dont want to just take pain meds everyday. I have to find someone to help me understand, find a plan, a new Dr. give me any advice. I find it very hard to open up to my friends and family regarding this because I dont want them to worry, but they have seen a huge change in me and my outlook. In addition to all of this the MRI states that I have a sacral tarlov cyst present at s2 measuring 2cm. When I got home and googled this, it amazed me that all of my symptoms pointed to that being the cause. I just dont get it. There are several things showing on my MRI, another key point in the MRI was:Posterior interbody hardware from L4 through S1 generates susceptibility artifact limiting local detail evaluation. Does this mean that because of my hardware they cannot really see anything??? It shows multiple perineural root sleeve cycts bilaterally at several levels. Spondylotic bulging at L3-4 with mild facet hypertrophy resulting in mild to moderate central/lateral stenosis and minimal foraminal narrowing. I am really hoping that someone/anyone can understand this. They want me to go to a new pain specialist, inquire about a pain pump! doesnt this sound like something that can be fixed surgically? I am not sure if its a good idea to just start back where I started at the spine center..I am currently a single mom and my husband and I have been apart for the past 3 years. So I am very much alone on this one! Like I stated I lost my mom (2009) and she was my biggest support system and always knew what I needed to do! I do have lots of friends and people I can talk to, but for some reason finally releasing this in this post made me feel better. I pray tonight that someone reading this has or is going through something similar and can help me! Thank you so much for taking your time out to read this! I really look forward to getting some feedback!

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Old 01-08-2012, 11:56 AM   #2
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Re: Still Hopeful..In search of help! Struggle provides strength<3

Welcome to the board. I am sorry you have had so many problems, and hope that we will be able to provide some suggestions and some support as you seek to resolve at least some of your issues.

It would be helpful if you could post your radiology report of the lumbar MRI. I would also like to know which levels were fused. Did they go in from the back, or how was the fusion approached? Do you know if you have fused and that there are no problems with the hardware? Are the bulging discs above the fused area or where are they located?

First, just a couple general comments. Back surgeons, the great majority of them, do not like to operate on someone else's patient, particularly if they are not familiar with the first doctor. You will need to seek out a spine surgeon that specializes in spinal reconstructions...and most probably, this will be an orthopedic spine surgeon rather than a neurosurgeon.

Second, it may be necessary to travel outside your immediate area to find someone who will treat you, and will look at your case with a new set of eyes.

Not knowing any details about your case, I don't quite see why you were told such grim things about never walking again. The things you specifically mentioned from the MRI are not severe problems by any means. Any time there is hardware in the spine, it makes it more difficult to clearly visualize the nerves, discs, soft tissue, etc. The artifact is simply the "glare" that is thrown off by the hardware, making it more difficult to see everything clearly. For this reason, most fusion patients always have to have MRIs with contrast, which is just a "dye" that is injected during the MRI to help the images stand out more clearly. The perineural root sleeve cysts (commonly called Tarlov cysts) are fairly common and very often cause no symptoms that the patient is aware of. They usually can be treated without surgical intervention.

[B]Spondylotic bulging at L3-4 with mild facet hypertrophy resulting in mild to moderate central/lateral stenosis and minimal foraminal narrowing.[/B]
The disc between the L3 and L4 vertebrae is bulging. The facet joint at this level shows some signs of mild arthritic changes. These two things are causing some stenosis in the central canal, in the lateral recess and in the adjoining foramina...stenosis is a narrowing, which is located in the three areas where spinal nerves are present. This can result in some irritation or compression of the nerve, which can cause symptoms of pain, often the ones that "radiate" out to the buttock and leg areas.

There are certain words that are used in all American radiology reports when describing the severity of a problem seen in an MRI. Mild and moderate indicate the problem is noticed but it isn't too bad. When you see the word "severe" before the in "severe stenosis" that's when you really sit up and take notice and think that surgery may be the only answer. Mild and moderate mean there is a problem and it is worth mentioning so the doctor will keep track of it if future MRIs are done. Mild and moderate problems are usually able to be treated with conservative methods. (of course, I am speaking in great generalities here -- but usually there isn't any great cause for worry when you see mild or moderate.)

I didn't notice in what part of the country you are located, but I think if I were in your shoes, I would get another opinion from a new place...and as I mentioned above, I would try to find an orthopedic spine surgeon who specializes in reconstruction surgeries.

Old 01-08-2012, 06:36 PM   #3
Join Date: Jan 2012
Location: Murray, Kentucky
Posts: 4
77hopegirl HB User
Re: Still Hopeful..In search of help! Struggle provides strength<3

Thank you so much for your comments and help in understanding this. I am living in KY and have been traveling to Nashville TN and Jackson TN for that fresh set of new eyes you were talking about. The Dr in Jackson said the bulging disc were above my fusion so he would have to go through all of the old hardware and replace with all new hardware. I believe I am fused from L2-S1 I actually do have a hard time remembering things, has I had a (L) cerebral bleed from my first mva and it does have some impact on my long term memory. I simply get confused easily especially when it comes to Dr's and treatments. This is really the first time that I have really had to take control of my medical condition and search for help. I have heard that Dr's do not like to follow another Dr's work. That to me is so incredibly scary. Funny that you mention an orthopedic surgeon, that is what the spinal dr this last hospital stay recommended. I also do have an appt the 17th with a pain specialist to discuss other alternatives. It just seems that the pain is progressively getting worse. Along with all of this my (L) leg is so incredibly weak. Since I already do not have a strong knee its a very scary situation. I have been using a walker and also a wheelchair. Home PT starts tomorrow so I may have some more answers. I guess I just thought it could be fixed and I could get back to some normalcy but it seem like that is the case. Did I answer all of your questions I hope?

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