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RSD, Type 1 Diabetes, C-spine, L-5 Trauma from Accident...Should I even bother with c-spine surgery to protect remaining spinal cord?

Started by shc on 05/21/2010 4:13pm

Hello. I am new to this community, however, after reviewing a few questions and discussion threads, I think this may be a good place for me to start. Short overview: Automobile accident 15 years ago resulted in thoracic outlet syndrome, five upper body nerve entrapments, RSD upper and lower, etc.etc.. I have drop foot now and have been falling. My doc is suggesting I be evaluated as a candidate for c-spine surgery since those are pressing inward toward the cord. He had same surgery to protect his own spinal cord. I do not have expectations of changing my pain levels necessarily. He has helped me with the right combo of meds. However, while preventing further damage or possibly severing the cord is important, after doing some research, and being an insulin dependent diabetic, I am wondering if surgery might make a bad, but manageable level of disability, worse. Any thoughts?

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Hi, 9
I am not a doctor but had minimally invasive c-spine anterior (through the front of the neck) discectomy c3-c4 surgery 10 weeks ago. It was a piece of cake as I was even at Denny's the next day having soft food. The immediate pain relief was well worth it. I am a type 2 diabetic with pretty rotten numbers of course my fault, and have a few other chronic illnesses causing constant chronic pain... don't suffer I too am on lots of pain meds but they cant give you relief if you need surgery.
Chloe

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Thanks C Miller. You are right. I will stay on ny meds, (they work for me ), ane will continue to research my neurogsurgical options. It is always important to me to realize how other diabetics have fared during and after their sujrgery. I have a really good tolerance for pain, and if the night is really bad, God grants me "amnesia: so the memory of that night becomes a little faded in the aftermath the following morning.
God bless and best wishes to you.

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I’m so sorry to hear you also have R.S.D. or now called "Complex regional Pain Syndrome". You are the only other person I know of having this. I developed it when I had a foot surgery go wrong. It is one of the worst, most painful ordeals of all. I had C spine fusion 4/5 and they cut in the front of my throat to get to my spine, less nerve damage this way. I had only 10% use of the whole right side of my body, before surgery.
The damage was on the left side of the spinal cord. The effects were on the right down my arm into my hand, loss of grip, loss of balance, so much pain I can never begin to exsplain. I can never tell anyone what would be correct for them, basic; I was told if I did not have surgery I would not beable to move the whole right side of my body eventually. The Neuro-surgeon did not need to convince me to have surgery. I was in such pain I was not going to be able to move if I did not have it, plus it was such a relief on my pain level. Yes, I continue on medication, but it is mainly for the R.S.D.
I was willing to do anything. I actually worked up to the day before surgery. I managed a business. I would go lay down inbetween customers on a dirty floor because I hurt so bad.
I cried daily on my way home every day. I had a very high paying job and was in the middle of a divorce.
Things seemed there worst. I never lost my faith. I had been shuffled from one Dr. to another. It sounds as if you have a DR. who understands what you are dealing with. What you have with this in a Dr is presicous. Be thankful you have a good Dr. One who understands and has been through it himself. I also have read what others have wrote, and it takes time to heal. Take care of the body
and allow oneself the time to heal. Most replies are people who have just had surgery and have been told it would be a couple weeks and they have a exspectation of being as new. It does take some of us longer to heal. Then I have spoke with some where in a couple weeks they were so much better.
I went to have my Surgery on Oct. 27th. 1995. I shall never forget the date.
I was Thankful to have a Dr. with a steady hand. I will never be the same, it did nerve damage.
I would go through with the surgery again if I had it to do over, my pain is less. I continue to take medication but it is mainly for my R.S.D. which is in the right foot and leg.
I had surgery for a bunion and it did not heal correct, but felt as if it had just been operated on. The pain continued as it was just after surgery.
The foot and leg have muscle wasting from my R.S.D.
I have to be cautious with my spine, I have the most pain in the leg and foot.
If your Dr. suggests surgery, why do you think you should not have it? Mine was pushing on the spineal cord and continued to do damage as long as it was left as it was, once I had surgery it was immediate relief.
It was about a two year recovery for me. Had I given in to surgery sooner I would have had a better out come. Even as it was, I did not end up with out use of the whole right side-which is what would have happened had I not had that damaged area removed. Your Dr. has a PHD. he has the training plus exspierince to go along with it. It sounds to me you are in good hands. I know you may look at it as hopeless, but do not allow it to continue to do damage. I did and the longer it goes
the worse it can become. Get a second or third Dr. to look at things if you are unsure.
I wish the best for you, plus all they can do for your R.S.D.
What area is the R.S.D. in ? Good luck, I wish you all the best.......

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Thank you Complex Regional...for your kind supportive words. RSD can be overwhelming that is for sure. I am being evaluated by a neurosurgeon because my neurologist feels I could be at risk for severing the cord. I fall more than most people. He is concerned that upon impact, let's say in a bathroom, my head will bounce back and the c's will further dig in and hit the cord.
Purely preventative. He has no expectations that this will change any of my pain complex, especially since RSD is secondary in my upper body, primary in my lower extremities, and since it took nearly ten months to differentiate RSD from normal diabetic neuropathy, the RSD became intractable.
So as I read comments from patients who are on the recovering end of this procedure, (like you from the front of the neck) and hear statistics like 50% of the vertebrae above or below will "fail" at some time following the surgery, or that mechanical devices or bolts do not always bond, it give me pause.
I am diabetic and even the doc said to count on four months of solid recovery, ending with reduced range of motion.

So, I will visit the neurosurgeon and then I will have to take some time to weigh the advantages and disadvantages.

By the way, if you are having great difficulty with the stabbing, burning, tingling, or deep muscle pain that RSD brings, consider this. For fourteen years I have done the step by step pain med dance.
Starting with neurontin, topomax, oxycondone, oxycontin, etc. until I found an article out of the University of West Virginia. The researching doctor, a neuropathy specialist, said no one kind of medicine will ever change this kind of chronic pain. The key is a cocktail of sorts. My doc agreed, and while it does not take the pain away, it keeps it at an arms length for a good part of the day,
We combine a narcotic, (like oxycontin 10) with a muscle relaxant, (in my case zanaflex), a seratonin uptake to alleviate the passing of the pain signal from synapse to synapse, (paxil, etc.) and finally an antiseizure drug, (kepra in my case), again to help stop the pain signal from staying stuck.

I also have restless limb syndrome so I used requip, etc.

Do I still hurt? You bet. But I have a life now. And, honestly, while in the beginning in your mind you are always saying ouch!, after so many years, the ouch chorus is somewhat like background noise in my head. Sure, as soon as I stop moving, sit down or lay down, the autonomic nervous system hits me with a bang, but throughout the day I can cope pretty well. If you have not discussed this approach with your doc, you might want to. I take the minimum dosage of everything, even though I have the prescribed options of taking more and for the past four or five years, coping has been easier.
Thanks again for your input. I may seek it again after speaking with the neurosurgeon. In the meantime I wish you painless days, and sound sleeping nights!

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Thank YOU SHC!
I’m on a drug coctail like you mentioned. I have been on all the same medications you mention. I have a bad colan to top it all off after so many years with all the medications going through my body it has burned my insides up. The bowels completley stopped in the year 2000. I have hudge bottles of Miralax I take so they will function. I also take medication for severe gastritis. My breathing stopped and was in a coma for days. It was because of the medications I was on, this was back in the beginning. I was on 14 different types of drugs at once and my weight was 90 lbs and I’m 5’6”. The Dr’s were trying to get my R.S.D. under control. My foot and lower leg turned black.
I always tell people to LEARN all they can about their illness. I almost died, actually they got my heart started and then it would stop. I have to believe it just wasn’t my time. I awakened in I.C.U. and the ER Doctor was so angry with my Dr. he had called him and yelled at him telling him he almost killed me with drugs. It was a mess, Dr’s fighting over a patient. There I was laying on a breathing machine and could not exsplain to the ER Dr. I had R.S.D. and the other Dr. was trying his best to get me out of pain. I was eventually refered to another Dr.
Spent around a year in a wheel chair. I understand falling, I do even now. I pass out and they can not figure out why. They did all sort of test. It isnt my heart. Then, I awakened one morning and my right hand would not work. It was drawn up, as if I had a stroke, I was 43 yrs. old when this happened, I’m now 50. I did thearpy on my hand, after two months it began to work again. I was never told if it was a stroke or what. Some things the Dr’s. just can not do, nor have all the answers to.
If they go in your C-spine and have the bolts and brackets would that not protect your C-spine?
I had the bone strut. It was from bone bank, I had not developed R.S.D. at the time of my neck surgery. When I developed R.S.D. it was in the foot and now I suspect it is in my whole body. I have read up on it. Actually there is a book you can order { it cost about $30.00 } concerning what the newest procedures are for R.S.D.
This is the name so you can look it up on the net. if you are interested in buying it.
Medifocus Guidebook on; Reflex Sympathetic Dystrophy
Updated Jan. 29, 2010
136 pages, names of specialist in all the States.
It exsplains about the three stages of R.S.D. My Dr. and I actually study it, I make copies and high light different areas and take it with me to my Dr’s. and we work together and change my medications.
This same company also has other material out for other illness for any other patients who may want to learn about the health problems they are facing. The company has books on all illnesses, with the latest studies and updates on drugs, procedures on R.S.D. or what ever illness you buy a book about.
What ever the illness they have a book you can buy and it will cover it. Their e-mail address,
digest @ medifocus.com It contains answers to critical health questions including latest treatments, clinical trials, and exspert research.
High quality Professional level information you can understand and trust. It is new for the patients and their Dr’s to help both Dr and patient to help each other. In the beginning I did not know/understand - nothing and this guide book is /was made for the patients and Dr’s so we could work with them and be a part in our own recovery. I went through such terrible things in the beginning as I stated at the start I ended up in ICU and that happened a total of 3 times before I started going and buying every book on medication and books on each and every disability I have. I now am an informed patient.
I found out it is very rare. I understand now there are three different stages to this illness. I started out in the 1st stage and it was BAD!
I threw up from pain daily. I waisted away, as I stated they had me on so many medications. I was taking OXY at one time along with many other medications, eventually I was able to walk again.
Now when I’m sitting or laying down still, my body jerks— it is like someone jab’s me while I’m laying still not looking and makes me jump—I have those type of nerve jerks in my whole body.
It is odd this illness, it now has my foot stiff and growing in a strange deformed position.
This is the 3rd stage. Winter is the worst of times for me.
DISKS—C/spine
I have other disks bulging that will have to be replaced because of the neck putting pressure on the lower disks. It is my understanding they do it with the screws and plates to help stable the neck so it doesnt put as much weight and if they use bone sometimes the bone will reject and then surgery has to be done all over, so with the plates and screws it eleminates this problem. I worse a brace and it was terrible, but it kept my neck stable if I fell or anything. I was not in one at the beginning after my surgery. Then Two weeks after my surgery I was thrust forward in my auto and the bone they put in my neck moved forward out of place.
I was lucky it did not go back wards into the cord or I would have had to undergo the surgery again, this my Dr. told me. It went front ward so now I only have about 1/2 of the bone they put in holding my neck together. This is why I had to wear the Philidelpha brace. It isnt like the soft neck brace. It is one that holds the head and neck in place so if you fall you are safe and the bone graft would not move. It took 6 months { graft of bone } grew together. It was at this time I was able to take the brace off. I understand your concern after reading your letter. I pray you do well and hope the information concerning the book will be of help to you, concerning R.S.D.
If you can get the book it will give you great insight into understanding your illness. They do use Botulinum Toxin Treatment on R.S.D. Now..
It numbs up the nerve signals so you are not in as much pain. I had it DONE and it helped a great deal. I also tried the spinal cord stimulator—to many risks in that for me, I had it removed. The electrodes moved around on my spine.
It was inplanted in my body and I had a hand control to turn it up or down to send electro shocks down the nerves. When the electrods moved off the spine and i turned my head it would send jabs of stimulation. It was not intended to work in that manor.
You mention the limited mobil part of turning your head. I have limited amount, it isnt enough to really make a difference. Instead of being able to turn your head it is about the same—just a minumal amount of difference. If you can live with the pain, then do not have surgery, if the risk is so high. I was in so much pain I was willing to take the risk. I had no choice.
It sounds as if you are getting by, I understand why the Dr’s want a person to wait.
It is risky and anything can go wrong. Take your time, read, study and when the time comes —if it comes you are in so much pain you can not stand it anymore then you will know in your heart it is time. That is where I had to get, in a place I could not withstand the pain anymore.
I pray for you, and please if you wish to ask any questions feel free to ask. I have endured a long road, if for nothing else but to help others as we help one another on here so be it.
I do hope the book will help you even more on R.S.D. Best wishs always.....

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To Complex Regional...
Just reading your post hurt my heart. You have truly suffered.
Comparatively, I have been very blessed. I happen to also be of the faith where suffering when used as prayer, can be some of the most effective prayers a person can offer. But I digress...
Thank you for the reference to the book(s).
What part of the country are you living in?
The only comment of value I can give you is the hand clawing so to speak is probably from nerve entrapment(s). It particularly happens when you have slept for a few hours and when you wake your hand has folded into a claw, Sometimes you have to pry it open. Mine is acting up again currently.
I cannot believe all that you have experienced...the coma, the blackening of your foot, .
I am not sure what kind of footwear you are using, but..I have learned from my doc and from experience that whatever happens on the soles of your feet, travels right to the cervical spine and within nanoseconds can feel like electric pain up and down the body. I discovered this once when I accidentally slipped off a curb that was higher than I thought.
So, Knobler recommends Clarks shoes for everything, and double density soles, (usually prescribed for diabetics) to help cushion any impact.
When you say winter is the hardest, I know that can be true. Another litle "trick" is to never let your neck get cold...ever! Use high necks, scarves, whatever it takes. A chill that hits the cervical spine again travels so quickly and can traumatize the remaining nervous system. In the beginning I was so cold from late August to May that we bought a wood stove insert and it burned 24/7. Sometimes in the summer I would run outside just to get warm. Weird, eH?
It is amazing how medicine really is just an educated guess, and the body so far more complex than any one physician or research team could ever comprehend. And, you are right. No matter how qualified, or well intentioned a physician is when giving advice, it is your body, your syndrome, your decisions, therefore, each patient has to remain as knowledgeable about choices as possible.
I have been diabetic since 18, and I am now 55. I knew even then that I needed a doc who would advise me, and hopefully lead me into the correct direction healthwise, but when it comes down to it, a patient is responsible for determining what works, what doesn't ,and what they will endure to accomplish their own personal goals in life..!
I truly hope you will have relief soon and I thank you for sharing so much information with me. You are amazing!

.

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Hello Shc & community,

I live in Arkansas North of the state capitol, Little Rock. Where are you from? I appreciate your imput, I found out upon my last Dr. vist my height has changed. I went from 5’6” to 5’ 3”. I know it is from my spine problems, the c-spine being bad has deteroiated over the years. Us women all have a problem with our spine/bones. My neuro-surgeon ask me when I saw him { prior to surgery } if I smoked. I didn’t and he told me good, had I been a smoker he would not operate on me. The reason being he said "women do not heal well” as far as our bones and especially if we smoke. I was thankful I didn’t, a
a real blessing because prior to seeing him { 9 months before } I had actually stopped smoking.
This was in 1994. I’m Thankful for all the information and comparison we have shared here. It helps me with my own illness and to help others. I wondered why I would fall and I think it is because of my spine injury. I never had problems until then.
I’m really sorry you have had a life of illness. I have heard being diabetic is a terrible illness. The strength in prayer having faith gives our life meaning. I know there is a reason we walk this walk. I try to never allow myself to get in a bad frame of mind. I continue to have faith and know all
things work to the better of those who love the Lord. I attempt to put all my efforts into helping others as much as I can, even in small ways as people on the sights through these threads helping one another have shown,
it shows man-kind is not all bad. There are still good people who care about total stangers out there. Thank You and everyone who takes their time and effort to help and advise one another.
I’m very glad they provide a place we can speak to each other and learn.
It helps me personally. I know many suffer daily, taking just one day at a time is best for me personally.
I hope if you have other problems or questions you ask. I gladly will give my testimony of the walk I personally walked, what I learnt. Thank you and everyone in the discussion.
I hope your disability will improve as Dr’s have study groups and come up with new things all the time. New medical treatments and ways to help.
I do yoga it has helped me to strengthen my body considering my illness. Maybe they will come up with some new ways in surgery. They have since I had mine-had I had plates then when I fell forward it would not have moved the bone. I recall when I was 20 a man had spineal surgery and they went into the back of his neck to do the operation. They did change this way to going in the front, because there are more nerves in the back than in the front. Good luck......

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im concered about u falling, if ur having problems with upper and lower back, how do u know its ur neck?
i have major neck problems , and lower back stenosis which causes me to lose my balance.

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Hi,
I'm new to this site. I have read so many of your post. I am grateful that there are others who can assist.
My husband and me were in a head on collision with a Semi that ran a red light in 2006. My husband recently passed as a result of all the medications. His doctors were too generous with the medications for him. He was on Ms contin 60mg, neurontin 600mg, Diazepam 10mg, Merinol 5mg, and roboxin, until 2/25/2010 when he passed from the build up of the meds his body was not able to recognize that needed to be expelled. Me on the other hand have been fighting to get doctors to recognize my difficulties, and until my husband passed was not treated as though it was really a pressing issue. They had told me and my husband in the office that I would never be able to work again, but when we got the reports from the doctors it said nothing of the sort. I had pictures of my left hand Black like I had placed it in oil, and my right with the pointer,index,and ring finger, going absolutely white and numb at the tips to the first joint. I was accused of STICKING MY HNAD IN ICE WATER!!!!!!!!!!!! All because there was a lawsuit. I have three bulging discs one is pushing on the neuro-foremen. The neurologist told me I have permanent nerve damage in my left hand, specifically in my left forefinger and thumb. I have had a journey, I was not able to lift my left arm to open the blinds for two years. I have worked hard to get back to where I can do some things but still hurt so bad I scream OWWW! out loud just to push it down again and act as normal as I can. In Dec 2008, after my anterior surgery C-3 Through C-6 fusion, I was at PT and told the girl that I was frustrated that no one had yet looked at my lower back. she had been doing the zapper machine on my neck so she said she would take a look. I should not have let her. She pushed down on a spot near the sacral vertebra and I felt an explosion inside my gut like the sun splintering into a thousand shards of glass. I did not say more that a gasped that's it though. When I next saw her I was really limping and had trouble lifting my left leg to step up 3" into our home. getting up from a seated position was miserable at best. My husband would try to steady me by wrapping his arms around me to walk me to bed in the evening.I was still ignored by the doctors. I have constant burning pain under my armpit and across to my aureola. I even had a trigger point injection into my breast. It did help a little for a short while. This pain also radiates down the inside of my left arm. I just want to know I am not crazy. I know I am not making up this up. I had the Spine stimulator put in for the test run and in did help. My Neurologist told me to tell them no. He said with the number of MRI's I was having they would have to take it out and reinstall it each time. Convinced me. The doctor that was scheduled to do the implant was peaved the I changed my mind saying the could do an MRI with them in. Now I read from one of the post that with just normal wear they move. Thank goodness I listened to my Neurologist. I wound up not using that doctor again he was so RUDE. Getting my meds reduced when I no longer wanted to take 60mg of ms contin was like pulling teeth. I asked for merinol which helped me but THEY wanted me on Ms Contin. I am happy to say I have succeeded in removving them from my life. I csn't say the pain is worse though. I stopped receiving the phantom pains though. YES, it does get worse every time a storm comes in but I cope with the neuontin 600mg. I had severe migraines for 267 days after the accident, and was told that I no longer have a left carotid artery. I am now being told I am suffering seizures for which the neurologist has put me on depekot bad effect, topamax, bad effect, and so many others I don't seem to respond well to. The only thing that seems to minimally help is Fiorocet. But my doctor doesn't like them. I don't want to be like this. I am not one for drugs! I hate this h*** I am now having to endure because of some careless driver. Anybody have any ideas? Anyone gone through the doctors treating you as if you're just a woman and don't really have a problem? It's not just me I have spoken with others in my state (NV) that have received poor care too. Please help if you understand.thank you in advance.
always Mrs.T Foster

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