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Post by abruce22 on May 9, 2012 18:15:50 GMT -6
I am looking for people with experience with l5 nerve root damage. I have an l5 schwannoma that is partially imbedded in the nerve root. It requires some degree of nerve damage to totally resect it. The doc has removed it partially twice now and it has come back both times. I am wondering how bad it is to have that nerve root out....  ? |
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Post by millelacskay on May 10, 2012 4:06:29 GMT -6
I also have a schwannoma at L5 that has the nerve going through the center of it. It was partially resected in Feb 2011 and now is bigger than prior to surgery and Mayo is recommending surgery again. Sorry I can't help answer your question but I am obviously very interested in any responses. How long between surgeries was it for you and how were your recoveries? I really don't want to have another surgery - and certainly not so soon after the last one so I can only imagine what you must be going through.
You will get the best results on this board when you post in the General Forum as more people read that. I have found this site to be a great help not only for information but also for moral support - glad you found us!
Kay
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Post by abruce22 on May 10, 2012 5:31:57 GMT -6
It seems to be coming back every two years. It goes from being almost totally out to being 2 x 5 cm. I am trying to determine what is the better option; surgery ever two to 3 years for the rest of my life (im 30), or getting it totally resected and losing some or all function in my l5 nerve root. Talk about two lousy treatment options.
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Post by abruce22 on May 13, 2012 15:51:39 GMT -6
Kay,
What did mayo say to you about the possibility of a total resection? Are they going to make an attempt in your next round of surgery?
My current doc said he might have to just keep picking away at mine every few years. I am wondering if you were told somthing similar.
If my Insurance permits, I am going to see if Dr Jallo can do a complete resection for me.
Alex
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Post by millelacskay on May 13, 2012 16:47:04 GMT -6
My first surgery was not done at Mayo - I only contacted them after my first NS said he would not operate on my tumor again and recommended radiation. I had contacted Dr. Jallo who said absolutely not to the radiation and then I went to Mayo to get a third opinion. They feel that they can get it all out but the NS did say he wouldn't know for sure until he got in there and possibly would not be able to do more than the first NS did, especially now that there is scar tissue involved. Mayo said that schwannomas in the L5 location should almost always be able to be 100% resected without damage to the nerves so I am hoping that mine will be this time around. But he did add that this applies only to the first operation and also not if radiation has been used so that isn't the best of news for either of us. Sure wish I would have known how careful you have to be picking a NS for this type of operation before the first one was done.
Contacting Dr. Jallo is a great idea. I am fortunate that Mayo is only 80 miles away from me, takes my insurance, and they are ranked #2 right behind John Hopkins in neurosurgery so I feel like I am in good hands. I meet with the NS tomorrow and will let you know what I find out.
Kay
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Post by abruce22 on May 13, 2012 17:18:30 GMT -6
Thanks so much for getting back. Its really nice to have some one in the same situation to talk to. I will make sure to update you with any new info I get as well. I am meeting with my current NS in 10 days and then I am going to try to get in with Jallo hopfully this summer. I wish you the best for tommorow.
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Post by millelacskay on May 15, 2012 4:16:10 GMT -6
I am not going to have surgery at this time. Both of my neurosurgeons have been reluctant to do a second surgery because of the risk of bowel and bladder problems so I am surprised that your NS wants to keep going in to "pick away" at it. I am having a lot of night pain right now, so my NS did say if we can't get that under control, I should have the surgery because I will have to have it at some point anyway. He would definitely be trying to get the whole thing out but might not be able to because of scar tissue and the rate of growth is slow enough that he feels it is okay to wait another six months if I can tolerate the pain. When he told me that there was a good chance I would have bowel and bladder problems from the surgery I decided that I wasn't ready for that! He recommended Tramadol for the pain which I tried last night and it helped enough that I was able to sleep. I asked what my options were and got a similar response to yours - either live with the pain or take it out and risk losing control of bowel and bladder, plus some function in the leg. Even he admitted that I don't have any GOOD options. My understanding is that the L5 nerve controls the up and down movement of your foot so I don't think it would be a total loss but I am a heavy duty walker (walking my 5th Grandmas Marathon in June) so I know it would interfere with that. I also have the sacral nerve going through the tumor which is why the bowel and bladder would be affected. Good luck with your appointment next week - and with contacting Dr. Jallo - he has been very helpful in pointing me in the right direction on treatment options.
Kay
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Post by abruce22 on May 16, 2012 17:19:29 GMT -6
Bummer. I know all to well about the sleepless nights from pain. Well hang in there. I meet with my NS in a week and will let you know what he tells me. I am seeing dr jallo in July for a second opinion.
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gr8pub
Junior Member
Intramedulary Schwannoma T12 L1-2 removed 30/8/12 left with CES and CMS.
Posts: 13
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Post by gr8pub on Aug 23, 2012 1:57:19 GMT -6
Hi guys
I in for surgery on 8/30!... At the moment I'm walking around but cannot run t all and up hills kill
My ns has said I have no option other than to remove mine T1-L4-L5!, or run the risk of being paralsed within 6 months
Bummer
I'm a bit scared to be honest and I'm do concerned what the future holds. Maybe I might be fixed, maybe I will be worse off. That's nt a good choice.
I like the blog as it gives me some real insights
I'll keep you posted
Cheers
GT
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Post by Leofwen on Mar 23, 2013 8:06:09 GMT -6
I have recently been diagnosed with L5 schwannoma and my NS wants to wait and see. I am really struggling as I don't know how often I will have a repeat MRI or when he will suggest surgery. My initial and only consultation was rushed and he was not dismissive, but unconcerned. My tumour is at the right exit foramen at l5 and he is reluctant to remove as I will have some deficit. Like most in this forum pain is my constant companion and some days are much better than others. My tumour is only 2.9 cm by 1.7 cm so relatively modest. It is great to be able to share concerns with fellow sufferers and to take advantage of the wealth of knowledge on the site
Se
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