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Thread: nearly 2 years post SAH and now I get this??

  1. #11

    Now I have a very different opinion

    The neurosurgeon I saw on the 18th says NOT to do the whole length but believes my leg problem is caused by the tethers at the previous surgical site (C4-5). Has ordered SSEP'S of my right UE and LE to confirm and suggests this is a much more conservative plan, which it is. So the two plans I have are very, very different in scope and plan. Do I visit yet another neurosurgeon at a third medical center here to see if they present a plan that matches one of the other two? How does a patient know what is best to do? I seem to have plateaued symptom-wise and can still walk with a cane. The numbness abates pretty well when I sit also so I can even drive. Maybe I do nothing?
    Jim in Chicago

  2. #12

    July 5th is the date for surgery....

    The man I trust here says I should not delay but move forward before more damage is done. Things have progressed since my last post. We are going to do the tethers at C4-5; the previous surgical site where the 4 AVfistulas bled causing the SAH. Yes, the remaining tethers of the total of 17 may show themselves later but the SSEP's were clear. Someone please tell me how much pain this is going to bring on and how long before I get back to pretty normal. And what are the stats about causing further damage by having the work done? Yep, I am fearful, but this is CLEARLY progressive so I gotta go with it. Your experiences will be helpful to me so please share!!
    Jim in Chicago

  3. #13
    Quote Originally Posted by JimInChicago View Post
    The man I trust here says I should not delay but move forward before more damage is done. Things have progressed since my last post. We are going to do the tethers at C4-5; the previous surgical site where the 4 AVfistulas bled causing the SAH. Yes, the remaining tethers of the total of 17 may show themselves later but the SSEP's were clear. Someone please tell me how much pain this is going to bring on and how long before I get back to pretty normal. And what are the stats about causing further damage by having the work done? Yep, I am fearful, but this is CLEARLY progressive so I gotta go with it. Your experiences will be helpful to me so please share!!
    Sounds like the best plan. You should not do it all in one shot. C4-5 seems to be the best place to start for the following reasons. First, it is a higher level should have the highest priority. Second, cervical laminectomy is easier to do than a thoracic laminectomy. Regarding stats, it varies with the condition and the surgeon. It obviously will be less risky when the surgery is less extensive.

    Wise.

  4. #14

    Thanks!

    Thanks for your taking the time to respond. I do appreciate it. I will post back once the surgery is done. I am sure other patients have the same fears and this forum has been wonderful.
    Jim in Chicago

  5. #15
    Mend quick!
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

  6. #16
    Good luck to you. I know this must be scary for you. Personally, I am very glad you found a more conservative surgeon, who appears to be thoughtful and did a better work-up before embarking on a crazy huge surgery. C4-C5 sounds good for now.

    Let us know how it goes, and if you feel comfortable, where you finally get the surgery done.

    Good luck.

    And afterwards, do everything you can to go to acute rehab at the Rehabilitation Institute of Chicago, on the spinal cord injury floor (7th floor). I recommend that you find a physiatrist while you are in rehab who can follow you long term. You always need someone other then just a surgeon following you.

  7. #17

    100% success! Surgery was July 5th.

    ALL feeling has returned to my right leg. I got home today, Sunday, from ICU. Surgery took 8 hours and ended Thursday night after 8p but my surgeon said I could recover at home!

    Dr. Kenji Muro was the assistant surgeon in 8 of 2010. At that time, he was at Northwestern. During my SAH, Dr. Muro was the only MD able to find the source of the blood (4 AV fistulas). I was in Northwestern for a month before being transferred to the Rehab Institute here, again for a full month. I was put on life support for about 10 days at that time and the family was called 4 times to say their goodbyes.

    And this time he found just what he expected. There was scarring and tethers at the surgical clips at C4. He fixed that and somehow gave my cord more room. I do not need a cane and the leg is just normal. As far as I am concerned, this Dr. really knows his stuff, especially when you consider that the MD at the other huge facility wanted to do ALL tethers down to T11! I am symptom free. Once this post surgical muscle pain is gone, I will be able to do whatever I want.

    Ok, one last thing. I am 66 and have seen my share of MDs. Dr. Muro formed a close relationship with my family back in 2010. He drew pictures and explained things. When we came to him this time for a second opinion, he pulled out his cell phone and showed us a photo he took of me in ICU with my wife. I was on life support. He kept that picture in his phone for nearly two years. Of course, he emailed it to me on the spot.

    THIS go around, we communicated via instant emails about a week ago as he convinced me why NOT to wait til I could not walk. He is a skilled man, a nice man, and a man who totally listens to his patients and values their input and makes them players in the decision. There is NO ego here; patients come first. Having just spent time in the hospital where he now works, I can share that he highly respected by all support staff. They feel respected.

    In summation, I went into surgery with 17 tethers, fears, and limitations. I now, not even fully 3 days out, have a perfect outcome! What more could I ask for?
    Jim in Chicago

  8. #18
    Quote Originally Posted by JimInChicago View Post
    ALL feeling has returned to my right leg. I got home today, Sunday, from ICU. Surgery took 8 hours and ended Thursday night after 8p but my surgeon said I could recover at home!

    Dr. Kenji Muro was the assistant surgeon in 8 of 2010. At that time, he was at Northwestern. During my SAH, Dr. Muro was the only MD able to find the source of the blood (4 AV fistulas). I was in Northwestern for a month before being transferred to the Rehab Institute here, again for a full month. I was put on life support for about 10 days at that time and the family was called 4 times to say their goodbyes.

    And this time he found just what he expected. There was scarring and tethers at the surgical clips at C4. He fixed that and somehow gave my cord more room. I do not need a cane and the leg is just normal. As far as I am concerned, this Dr. really knows his stuff, especially when you consider that the MD at the other huge facility wanted to do ALL tethers down to T11! I am symptom free. Once this post surgical muscle pain is gone, I will be able to do whatever I want.

    Ok, one last thing. I am 66 and have seen my share of MDs. Dr. Muro formed a close relationship with my family back in 2010. He drew pictures and explained things. When we came to him this time for a second opinion, he pulled out his cell phone and showed us a photo he took of me in ICU with my wife. I was on life support. He kept that picture in his phone for nearly two years. Of course, he emailed it to me on the spot.

    THIS go around, we communicated via instant emails about a week ago as he convinced me why NOT to wait til I could not walk. He is a skilled man, a nice man, and a man who totally listens to his patients and values their input and makes them players in the decision. There is NO ego here; patients come first. Having just spent time in the hospital where he now works, I can share that he highly respected by all support staff. They feel respected.

    In summation, I went into surgery with 17 tethers, fears, and limitations. I now, not even fully 3 days out, have a perfect outcome! What more could I ask for?
    Fantastic! I am so glad. Wise.

  9. #19

    Things can change.....

    Just over two weeks post surgery, the numbness began to return, but only when standing/walking. I am approaching 4 weeks out. When I stand with maybe a plan to walk, my left foot and my right leg (knee down) go numb. Repositioning the spine can make it less but if I just stand or begin to walk, the numbness continues and soon will include my right hip. Same thing in a shower. I am hoping this is due to swelling but it might be the tethers pulling on the cord in different ways when I stand vs when I sit.

    I will see my surgeon on August 15 and that should be far enough out to give me an idea of how it is going to be. I am using a cane, but now for safety, where before surgery I had to use it to walk. I was surprised that some of the numbness returned but it is better. It is what it is. And as usual, I am reminded by friends and family that time is what this requires in order to see how my choices will play out. I am very thankful for this forum. It has been a great educational tool for me.
    Jim in Chicago

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