boop48
Junior Member
Posts: 14
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Post by boop48 on Jun 25, 2015 19:53:29 GMT -6
Well, yesterday was my 5 week anniversary for removal of my meningioma. It was at the T2 level and laminectomies of T1-3 were necessary and they put the bones back on with screws and some kind of plates or fasteners. Anyway, I was supposed to go back to work on Monday but there was no way I would make it through my 9 hour work day at a desk. Prior to surgery my only symptom was pain in my back ribs after sleeping (regardless of position) after about 6 hours. No motor deficits at all or other pain. After 30 minutes out of bed all pain was gone until the next morning. Now my back muscles feel so tight and sore and I need Advil (800 mgs in morning) and Norco (5mgs) 2x a day to cope with pain and still I need rest time on my bed a few times a day. I am now supposed to go back to work on July 6th which will put me at almost 7 weeks post op. I'm wondering how I will do it. I am feeling now that the surgery was a mistake. I had one doctor propose a "wait and watch" approach but he wanted me to get a second opinion. I did at UCLA and the second neurosurgeon said the tumor should come out ASAP because he noticed some "hyper reflex" thing with my left foot I didn't even know I had. Now I wish I had just monitored it with MRI's and at least maybe had a few good years left of my life. I am 48 and going to be a grandma soon. I just read a post here where one person said it is very rare that anyone has this surgery and is ever without pain again. I can't imagine a life in pain like this and it's hard to stay positive when this condition is so rare and I cannot find anything about anyone who fully recovered. I am better than the earlier weeks but it is improving at a snail's pace and the possibility of never being myself again is really hitting home and depressing me. I live over an hour away from where my doctor is and at my 2 week post op it was kind of like "See you in a year, your tumor was benign" and no other recommended follow up. I had to see my primary doctor for a renewal of my pain meds and although he is sympathetic I don't think he knows a lot about this surgery. Sorry for the rambling but I guess my question is does anyone here know of or has heard of anyone in a situation similar to mine eventually without pain? I don't think nerve pain is the issue, it's like deep muscle pain in my upper back and a lot of stiffness, like a lot. It's not the incision that hurts it's those darn muscles. Any encouragement would be much appreciated.
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Post by reneemoss on Jun 25, 2015 23:54:12 GMT -6
Hi Boop48....My laminectomy was Oct. 2006 T4-5. (Meningioma/benign). I am without pain & fully functional! It was not easy or quick. I had to use a walker, then a cane & went thru every pain pill in the pharmacy, tried hot & cold packs, Tens Unit, Lidocane patches, numbing creams, together w/physical therapy. I can relate as my pain doc kept telling me it was deep muscle pain, but I think once the spinal cord is messed with nerves are touched & nerve pain is more difficult. It took a couple of years until I was able to wean myself off all the pain meds. I rarely have pain now, & it resolves with Tylenol & a rest in the recliner, sometimes w/ice pack. I wish you strength & determination, time is the best healer, Cymbalta helped with the feelings of depression & the pain ask your Dr. If he thinks you should try it? Congratulation on becoming a Grandma! I am going to be a Great Grandma any day now.! I count my blessings every day as I was told if I hadn't had the surgery I would be in A wheelchair, paralyzed from T4 down!!!!!!!!!
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mcguyverdan
Junior Member
L5 and S1 laminectomy 5/19/2015 removing 99% of pecan sized intradural schwannoma.
Posts: 9
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Post by mcguyverdan on Jun 26, 2015 7:47:04 GMT -6
Hoop, while I do not pretend to know all that you are going through, hopefully I can offer a word of encouragement. My 5 week post-op date was Tuesday. I had a different tumor in a different location and they just superglued the bones back in, so I have no hardware. I was lamenting the unknown of having an incomplete resection and the possibility of re-growth and another surgery yesterday with a friend. I am 50 and was focusing on the dark clouds on the horizon that may or may not ever come my way. My friend's best friend had his spinal cord severed in an accident and is permanently paralyzed. When I was worrying out loud about the prospect of ending up in diapers to get a complete resection, he reminded me that I can walk and his friend would give anything to get to do at just that.
You know a few things for sure... Your tumor was not going to get smaller it was only going to do more damage with time. Nerves don't recover very quickly and sometimes not at all. You same surgery at 55 or 60 would have a MUCH more difficult and long recovery. This was MAJOR surgery, recovery will be slow, and even though I get frustrated by all the things I can't do right now, it helps to be thankful for all the things I still CAN do. You are stronger than you know, and you WILL get better, 5 weeks isn't very much time for the trauma of that major of surgery, give it time. You are in my prayers.
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boop48
Junior Member
Posts: 14
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Post by boop48 on Jun 26, 2015 14:13:53 GMT -6
Thank you both for the kind words and encouragement. I am trying to stay positive and take things day by day. Realizing that recovery will probably take months to years is both comforting and depressing, but at least I know what is up ahead. God bless.
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Post by samuridude on Jun 28, 2015 8:09:39 GMT -6
Thank you both for the kind words and encouragement. I am trying to stay positive and take things day by day. Realizing that recovery will probably take months to years is both comforting and depressing, but at least I know what is up ahead. God bless. Your fine boop48,
Many of us including me couldn't walk for 6 months without assistance. I spent nine months sleeping downstairs, because bed was upstairs. Many still can't walk without assistance. Count yourself luck in a very unlucky circumstance. My case was so bad they couldn't put the bone back as many others on this board. If your only taking Norco twice a day your pain level isn't that bad, but that's not to say your pain isn't bad, everyone pain levels are different. I have a friend who stubs his tow and goes into a fit of pain. These doctors tell everyone 6 weeks, except most of us was never.
Good Health
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boop48
Junior Member
Posts: 14
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Post by boop48 on Jun 28, 2015 11:26:31 GMT -6
Hi Samuridude, Thanks for your response. I know I am very blessed that I have full mobility and no pain or numbness in my extremities. I do have numbness in my upper back to touch but I do not care about that. The reason I can get by with Advil and 2 Norco is because I also lay down and rest for long periods during the day. If not the pain level even with meds would be too much to handle. That is where my depression comes in. I have a great job but unfortunately I am expected to return to work in one week. It is a desk job but it's a 9/80 schedule meaning I work 9 hours sitting (1 hour lunch break) and every other Friday off. I am probably 50 percent healed at this point but unable to be up the entire day without going back to bed to rest several times a day. This is my dilemma. If I didn't have the pressure of needing to return to work I probably could accept that this is my life for a few years and although not happily I could deal with it. And then there is that haunting thought that the tumor may not have grown for years or maybe not at all and I maybe did this to myself for nothing. But no one has a crystal ball and all the regret in the world won't change what is done. I had one surgeon say lets monitor it and another surgeon at a prestigious spine center say get it out and I went with his opinion, for better or worse. I know some people will think I'm a baby for complaining when I can move and walk normally and they cannot. I feel like a baby for complaining. But living in pain when before you only had it briefly in the morning before getting out of bed is a hard pill to swallow. I am happy to have found a place where at least I can vent about it. Regards, Boop
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Post by reneemoss on Jul 2, 2015 3:52:52 GMT -6
Hi Boop, I was in a LOT of pain pre-surgery so watch & wait was not an option. Also symptoms like numbness, banding, tingling etc were progressing from under the breasts downward. I was scared of losing bowel & urinary control, which was a certainty if no surgery. Also from my research I learned that you most probably come out with the deficits you enter surgery with, so if you wait too long you would be left with lashing deficits. Pre surgery I had no difficulty walking, & my body was functioning fine. I wasn't concerned with the banding, numbness or tingling until all of a sudden intense pain started. I had shots in my back because it was thought I had arthritis. But pain got so bad I was crying. Tumour didn't show up through x ray or CAT Scan until MRI. I think you did the right thing not to wait. As I posted previously it took many months until I was back to pre surgery function & at least I wasn't left with any lasting deficits& eventually I learned how to manage the pain that is always left from Spinal Cord Surgery. You will always have pain but it will be manageable. FYI I was 72 yrs. young when I had surgery (now 81) I was very active & in good physical shape I think that really helped in my full recovery. Stay strong & be positive. By the way, our Great Granddaughter arrived June 29. 8lbs 13 ozs & just beautiful. Good Luck with your Grandbaby- We have 7 "Grands" and are now onto the next generation. I am thankful every for life's blessings. I wish you the very best, you will get through this!
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Post by reneemoss on Jul 2, 2015 3:58:09 GMT -6
Almost forgot I too have numbness in my back, upper right quadrant- My Meningioma was t4-t5. Nothing else so I feel very lucky as that is really nothing to complain about.
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boop48
Junior Member
Posts: 14
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Post by boop48 on Jul 2, 2015 17:46:18 GMT -6
Thank you Reneemoss for responding. Congratulations on the newest member of your family!! Mine is coming early October and I can't wait to be a grandma! I believe what you say that it is probably better to remove the tumor sooner rather than later. I guess I'm just still upset/depressed that I ever had to get a tumor in the first place. Your comment "You will always have pain but it will be manageable" is so sad for me to hear. I'm glad it will be manageable but sad because I've lived life for so long with no pain. And since my surgery 6 weeks ago it's been nothing but pain with improvement in tiny increments. Improvement so slow sometimes it doesn't feel like it's happening at all but then I have to remember that now I can shower and dress myself and 5 weeks ago I could not. At least I can escape the pain by taking a pill and laying down. I know there are some people out there who hurt no matter what. I need to count my blessings. I return to work Monday but only for 4 hours a day. My doctor was going to put me off work the whole summer but I told him my mornings are pretty good pain wise and I am becoming more and more depressed and work will be good for my mind. Wish me luck and congrats again on your great-grand!
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Post by reneemoss on Jul 4, 2015 8:24:40 GMT -6
Wishing you the very best of luck & good outcomes on your journey thru. Grand babies are the best things in life, wishing you healthy Grandbaby & easy birth.
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