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Thread: Trying to decide

  1. #16
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    Here is another Dr Tennant vid....and Neuroinflammation. (and some Jazz music....)
    https://www.youtube.com/watch?v=cdQvuO6J6_I

    Arachnoditis Handbook for relief and recovery
    http://foresttennant.com/foresttenna....pdf?v=Nov2016

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  2. #17
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    Thanks Ed for the information. The one video really explains the unusual side effects. The one about sweating explains the very different experience I was having. If I am down on my hands and knees I will sweat. When I stand up it goes away. It is so strange but now I know the possible cause.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  3. #18
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    Dr Burton refers to the subarachnoid space as the most precious and fragile enviornment in the human body. His statement that most of us have arachnoiditis, especially after spine surgery is a bit of a wake up call ....There is something to be said about "doing nothing"....its not as crazy as it sounds, but then many of us have no choice. We do have to take risks sometimes, as scoliosis patients its something we have to do. (smug face)

    I wonder how many doctors are trained to spot arachnoditis? I also wonder how many of us have it and don't know we have it......

    I hope Dr Tennent's handbook helps....it seems that keeping the spinal fluid moving is important. I don't know if you have had any stretching instructions....I think that this is important. Pay attention to Dr Beak. (smiley face)

    Interesting how he likes to use magnets....

    You hang in there Jackie, try to post when you can.....

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #19
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    Ed I don't think many doctors are trained to spot this. It has taken me a long time to go from spinal surgery to diagnosed. I am not even sure my spine surgeon believes it. I started noticing the neurological problems. They would show on exam and on Emg. He could not explain them. So he sent me to a neurosurgeon. The first one did a myelogram but wasn't interested in finding the problem. So through the neurologist I got another referral tu a neurosurgeon that is spine specific. He is at a large University Hospital in Chicago. He is a little younger and the hospital is known as progressive.
    I saw him in January. On the same myelogram he showed me the arachnoiditis.He did say there isn't any test that proves it. He said you use the images and history of the patient.
    This could explain why some patients have a harder time. Who knows.
    After reading some of the information that you shared, it helps me understand the strange things. I get extreme ringing in the ears, but can correct it by laying down. Stuff like that and the weird sweats.
    However here is where I am. The doctor team at Rush University truly believes it. So a spinal cord stimulator should be the treatment. We can not do that because they can't get through the fusion. It would require removing part of it and the surgeon doesn't want to take a chance.
    So they put in a intrathecal pump to deliver pain meds and another med for the neuro problem . That was done on Wed. It is a little early to say how much it will help. I will post more as I know.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  5. #20
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    After a lot of trial and error here is the update of the pump. It was placed on July 27. I formed a large seroma which I guess is common. The problem was it was huge and the Dr didn't want to drain it so it surrounded the pump and pushed it into my ribs. And as people with scoliosis know there isn't a lot of room between the hip and ribs. By September 5 th i knew it had to be redone. So on October 17th it was moved lower in the abdomen and is much more comfortable. It wasn't working well before but seems better now.
    Then at the 2 week check up, on Halloween the pump was scheduled to be refilled. That was done and medication was adjusted to deliver more.
    Then the problems started, it gave me a complete epidural on my right leg. I could not move it or walk on it --- so back down to the Rush hospital in Chicago so the medication could be adjusted down. It is better again.
    I do have a small hand held machine that I can use to give a bolus if I am in pain. When I did, on Sunday the numbness started again. I got up and moving when it started and it didn't totally knock out my leg.
    This specialist totally believes the arachnoiditis is the problem. The nerves don't act right. Things like this-- no explanation as to why the medication only had an effect on one leg. Considering the medication is pumped into the spinal cord equally.
    I will say the arachnoiditis is difficult to manage and a challenge for Dr and patient.
    Last edited by jackieg412; 11-08-2017 at 11:09 PM.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  6. #21
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    Jackie, What was that surgery like? or both of them?

    Sounds like things are better now with the pain. Are you walking ok?

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  7. #22
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    Hi Ed,
    The surgery takes 2 hours. There is about a 5 in incision on my left lower abdomen where the Dr forms a pocket to hold the pump. The pump is about the size of a hockey puck.It is able to be felt through the skin. There is also about a 4 inch incision on my lower back about an inch off of the spine. There he places the catheter in the spinal cord. He must have passed it through me by a laparoscopy surgery. Maybe that is why I swelled up so much. Now the interesting part is because of my extreme reaction to narcotics, no narcotics where used during the surgery. I was put in twightlight and local anesthetic. Both times. I was told down at Rush it was the first time they took a patient through this surgery without narcotics. So you are awake during surgery but don't remember it. I guess it is harder on the anesthesiologist but we made it. But I was aware before I was moved off of the operating table. Because of no pain relief then I was very aware of the new incision.But I made it.
    Recovery is like a c section.
    It does seem to help. We just haven't gotten it adjusted so I am out of pain in my legs at night. When he upped the medicine it caused and epidural on my right leg. I don't know why it wasn't both but I will ask next time. He had to adjust it down because it was too numb to walk on it.
    We are using clonidine and bupivicaine. I reacted to micrograms of narcotics with severe nausea. To the point of hospitalization. So no narcotics.
    The neurological defects are also an issue. I have read the stuff you have me and shared it with the 2 doctors. I need to discuss it further with them.I'll keep you updated.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  8. #23
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    Jackie

    I sure hope this helps with the pain. I have read its as bad as terminal cancer pain.....I feel for you.

    Through the years, I have had diagnostics done that were not necessary....

    Iohexol CT scan (2002) Spinal Tap used to determine location of lumbar herniation's without the intention of operating.....(Non-scoliosis surgeon) and in a severe, degenerated 70 degree scoliosis lumbar curve. (I had 4) Later, with my current surgeon, I decided that the pain epidurals didn't make any sense. I'm no doctor, but with 40 things wrong, do you give me 40 shots? Iohexol and various dye's do clump up and create problems. Once again, not FDA approved and Off label.

    My CT for my gall stones was "offered", I did that with visiplaque, and my vascular surgeon knew what was wrong. Once again, not necessary.

    My MRI's for my cervical herniation's were once again "offered" with a choice, again, not necessary. (Huge co-pay in 2013) I was warned about the co-pay. Only after I found out it was $1800. I will never forget to ask before laying on any table.

    And the pile of x-rays done by my Chiros over several decades....not necessary. Not quite a Fukushima meltdown, but you get the idea. Chiro will not improve cobbs on a permanent basis. I used it for pain control.

    However, my scoliosis surgeries were necessary.....

    There is no way of knowing our exact paths. It seems that the specialists always "offered" extra diagnostics, other than the standard coronal and sagittal x-rays. Benders only done after committing to scoliosis surgery.

    Now, I wonder how many of us have arachnoditis? I have read 10-15%

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #24
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    Ed that is an interesting statistic. I am sure it goes undiagnosed a lot. While I don't know the reason I am diagnosed with it the neurosurgeon seemed to focus on the fact that during the long surgery the dura layer had to be repaired 5 times. I guess that increases the chance of blood in the spinal cord. It also can come from a trapped nerve. There is also the adhesive arachnoditis. I think that is what has happened. It is also interesting that it wasn't right away but seemed to come on a few years later. Ones of the strange symptoms is ringing in the ears. When it gets bothersome I lay down and it gets better. It seems to allow the spinal fluid to flow better.
    I am going to ask my Dr how common they find this in their practice. It is a major hospital in Chicago that is known to be at the forefront of medicine. It. Is also a major teaching hospital. I would this k a lot of strange things are sent there.
    Just think, one of the medications they tried was priault. It is made from the venom of sea snails. It is supposedly one of the strongest pain relievers. The side effects are horrible.I'll take the pain.
    It is hard to get info on this disorder.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  10. #25
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    Jackie, talking about snail venom, as a diver I have the complete set of Cousteau videos, and in one of them Philippe brushed his hand on a type of coral and couldn't feel his hand for 3 months...... I wont touch anything when I dive, and some areas have no glove rules.

    I sometimes get the ringing in the ears, and the dizzies, and laying down is my first choice. I always eat something before laying down. With my neck herniation's its hard to figure out whats going on. It seems that we really have to do all sorts of trial end error in our lives as scoliosis patients, there never is a simple answer....I am feeling quite a bit of fatigue lately. Sometimes, I am tired when I wake up after 8 hours of sleep.

    I didn't realize you had multiple dura mishaps. Did these happen during your revision surgeries?

    6-21% on Spinal fusions....3rd article down on left
    http://www.sciencedirect.com/topics/.../arachnoiditis

    I hope you aren't having the heavy duty alarming pain. Sometimes all we can do is try to get comfortable for whatever time we can get.

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  11. #26
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    It was the original surgery that had the most major problems. That is the t 10- pelvis fusion. It has the complications of the dura mishaps. They were recognized and repaired during surgery. But I guess the damage was done. I have questioned the now treating doctors and they say my scans confirmed the diagnosis. I really don't want to believe it. The information you sent make it seem that it isn't that rare of a diagnosis but when I ask about it everyone says what is that!
    I am ok. I have times it flares and absolutely hate the imbalance and Neuro symptoms. But it does explain the coming and going of feeling of no feeling.
    I hope your neck feels better. It can be extremely painful.
    We scoliosis patients do go through alot.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  12. #27
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    I see....a lot of time has passed since then. 8-9 years now. I am having trouble remembering since I am not as active here as I used to be.

    Jackie, If you have an attack, sit down or get down on the ground so you don't have a fall. Falls are no good. We have to remember these things....

    Dr Tennant's webpage has links and some very interesting material for your situation, and intractable pain patients. His material and work has answered some of my questions about what happened in my recovery regarding medications and diet and so forth. I know this will help others here on this forum.
    http://foresttennant.com/?page_id=27

    He has been called the #1 drug authority in the world....
    https://en.wikipedia.org/wiki/Forest_Tennant

    Intractable pain patients guide to low pain days...
    http://foresttennant.com/foresttenna...free-hours.pdf

    Arachnoditis handbook for relief and recovery
    http://foresttennant.com/foresttenna....pdf?v=Nov2016

    I know its a lot. It the kind of thing you just keep re-reading and remembering things like the breathing. I just remember Nurse Ratchet from One flew over the cuckoo's nest. That was a memorable scene.....(smiley face)

    Many of us are hit by freight trains in surgery, then become biochemical experiments in our recoveries. It would be nice if there was a general scoliosis surgery patients handbook that covers more than what is available now.....A daily schedule, diet instructions, walking instructions, breathing instructions, etc by the hour. I don't know if there is anything that has been written...

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  13. #28
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    Yes you are right Ed-- you just can't fight somethings like numbness and Neuro deficits. That is were you need to be careful. Like sometimes I can walk the steps by stepping one foot after the other and other times it is using the same leg all the way. There isn't any pattern that I can pick up yet. I just adjust to what presents at the time. It does seem if the ear ringing is aggravated then the everything gets worse. I trully believe it is the flow of the spinal fluid. I think the clumping it the nerve roots change the pattern of the spinal fluid. I'm just living with this but I am not a neurologist.
    I thank you for all that you have shared. I have printed the handbook and gave a copy to the Dr of physical medicine to review. I spoke a little bit to the pain management Dr about it and I do want their take on the information. The pain management Dr is really a young man. He is an assistant professor at Rush university and is very open to a lot of questions and new technology. Rush is a big medical center in Chicago. I think their scoliosis specialist is Dr. DeWalt. I've not see him but I did see an unbelievable kind neurosurgeon that brought the diagnosis and treatment plan.
    I think the medical field is still learning about this. Rush is progressive -- just think they tried the sea snail venom. It is 4,000 dollars a dose. I won't let them use it-- I didn't get the major side effects in the 2 days I was on it- but I couldn't walk or control my bladder. Major side effects are dementia and hallucinations. I'm not ready to hasten that.
    Since I keep being told i have funky nerves and I don't like calling it arachnoiditis I am trying to give a name to my spinal nerves. Please share any clever ideas .It's like giving it a name tells me the name of my beast that I am fighting.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

  14. #29
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    Jackie, it is a beast....Its hard to come up with a name or friendly name...almost like clumped up spaghetti, your nerves are shorting out electrically. If they are connected by scar tissue and if that't what it is, how does a neurologist separate them without making things worse? There are never any easy answers with the unknown....The search for answers becomes desperate.....Its desperation with the researchers, doctors, and of course patients. You now have a spinal cord injury. Same as Susan.....and she is a rock you know. (so is Walid)

    You know I'm not skiing anymore.....I guess I could go up there and pound out a few more runs, but I have accepted this change. I just cant absorb anymore crashes. I don't want to gloat, but I was one of the best skiers on the planet. Some brought it up unexpectedly last night at dinner....I am forgetting these things now....

    And we get used to these changes, a thing that does become easier as we age especially living with scoliosis. I say easier since it truly is easier to dive with the rip currents rather than against them. These advanced dive techniques save lives through staying calm under water. Divers are not allowed to panic, and good instructors teach this. Well, its the same thing with us medically speaking. Go with the flow....

    Notice that Dr Tennent stresses the importance of bracing especially when leaving the house. In the car, at the mall, at the grocery store. Danger zones....I don't know if you have ever had a public extreme pain event, what happens is that it can attract attention with concern, and if alone, hard to have to explain these sorts of things when your being crushed. It might be a good idea t get a hold of some of the topical rubs. (Lidocaine gel etc) Talk to your doctor about having some sort of defense against a pain attack. If you have to lay down on the ground, do it right away. I had a major public pain event, and the person with me did all the explaining so I didn't have to talk. I couldn't talk at all.

    Chet is ok. Tough battle, but he is ok....

    And you know what my fortune cookie said last night? "Chinese girlfriend waiting for me at home" (Chinese restaurant humor)

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  15. #30
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    illinois
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    The neurosurgeon did explain that trying to separate the nerves was proven to be adding to the problem. It would only create more scar tissue and any benefit would only be temporary. I believe that is the consensus of the medical field about this. This Dr at Rush( neurosurgeon) is an amazing person. When I first saw him and he started speaking you new you were in the presence of a brilliant person. He was so concerned about my treatment he kept in touch constantly with the Dr he sent me to. That Dr is a very young pain management dr. Already a professor but he looks about 18. This Dr calls my nerves funky. That is true but I am looking for a better word.
    Yes I did read that about the brace. I do try to stay out of situations that can cause problems. The car is always a nightmare. I keep most of my trips short. I also self protect, like choosing where to sit or stand away from home. I am always very concerned if people are behind me. If I can't be in the back of a room or against a wall i will leave the place. I know this form of a problem isn't as recocgnized by the general population so I just protect myself.
    It is a shame about your skiing. But falling could be a disaster. I can't stand to be cold and I live near Chicago. So I don't miss the snow because of the cold. You are still diving aren't you?
    Hopefully your Chinese friend can come along on your next dive. Was she there waiting?
    I just saw a name of a board game called a Yeti in my spaghetti. Maybe I can call my nerves that.
    T10-pelvis fusion 12/08
    Fractured t-9 six days out of surgery
    C5,6,7 fusion 9/10
    PJK at t-9
    T2--T10 fusion 2/11
    Removal of left side t6-t10. 8/14
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16

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