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Post by bluelove10 on Mar 28, 2012 20:19:07 GMT -6
Have your symptoms remained the same for a while, or have they progressed? Mine have gone from the occasional hip/sciatic pain, to fairly constant pain in the last 5 months. This may be directly related to the tumor, or could be the result of 25 years' worth of uneven wear on my hip joint (I walk with one foot at an angle - I guess that is probably tumor related). To your question Kristy - they have been gradually getting worse. I've always had lower back pain, then when I started to run in August 2011, the lower back pain got very severe. Shortly after that, the abdominal pain started, and then continued cyclically for the past 7 months. Along with the abdominal pain, the back, butt, and sciatic pain has gradually been getting more intense. Lately, I'll wake up to severe foot and leg cramps, and to a throbbing tailbone. It's quite difficult also, because I have a desk job, and my bottom and back hurt quite a bit from it. I've got a memory foam cushion, but that doesn't seem to help much... Thanks for sharing that article - I've read a lot of articles but hadn't read that one. The Dr.s only told me from my biopsy that it was a Schwannoma - they didn't specify if it was a Giant Schwannoma. I'm guessing mine isn't large enough (or there are some cellular differences between the two). Do you have any advice as to helping with the pain? My stomach is pretty sensitive and sometimes taking ibuprofen upsets it a bit. But when I've taken things like Vicodin, that seemed to do OK. Good luck next week Kristy! And let us know how it goes. Thanks again! Blue Love |
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Post by bowtruckle on Mar 29, 2012 9:29:05 GMT -6
I stick to tylenol and a heat pad - but I don't think my pain is as severe as yours. Ibuprofen upsets my stomach, and anything with codeine makes me feel hideous. I'm trying to hold off on the big guns (e.g. vicodin) until after surgery. If I limit stair climbing and walking, I manage ok. But I have been teaching, which means I'm on my feet all day. My electric heat pad has been my best friend the last few months! I think a desk job and throbbing tailbone would be an awful combination.  Have you tried sitting on an inflatable donut/ring type cushion? My brother cracked his tail bone, and that's what he had to use at work. He said it did help reduce his discomfort somewhat. |
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Post by bluelove10 on Apr 1, 2012 15:25:10 GMT -6
Kristy- That is a great idea about the inflatable pillow! I just bought a pillow from amazon that is designed to relieve tailbone pressure, so hopefully that will help. I also went to my Dr. on Saturday to get something for the pain. She gave me Tramadol-which she said she gives this to older folks when they are in pain, as it's not a narcotic so it's not addictive, but it also doesn't make you as 'messed up'. So far it's working ok. I wouldn't take it till I got home from work though, as it makes me feel pretty sleepy. She also gave me prescription lydoderm patches to place on my back where it hurts. They can stay there for up to 12 hrs. I'll probably try those out tomorrow when I go to work. We'll see how these work and go from there. I also heard back from Dr. Jallo. Unfortunately, he had the same recommendation as the other NS I saw-my symptoms would have to get worse or it needs to be growing, before I have surgery. He said because of the location, it's much more difficult to get to and there are more risks involved. I'm a little disappointed, as I was hoping for a different answer. But, because now 2 NS said the risks outweigh the benefits right now, it's got me pretty scared about the surgery. He said I could loose bladder & bowel control as well as encounter sexual distinction. Ugh. I just wish this was easier Any advice as to how to stay positive?? This week was a bad week physically and emotionally. I find it easy to be positive when I'm feeling good, but I'm in discomfort 4-5 days a week ( which I know is nothing compared to most of the folks on this forum. It's just more than I'm used to...). I am going to a local NS for another opinion (I think this will be my last one), just to get his thoughts. This Dr. did one of the surgeries for one of the guys on this forum and seemed to have great results. I have a feeling it'll be the same advice, but I feel like I just need to hear it from one more Dr. I'm also due in June for my follow up MRI, so maybe I'll find out something then... Anyway, sorry for the ramble and thanks for listening! Blue Love |
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Post by bowtruckle on Apr 2, 2012 16:55:06 GMT -6
So sorry to hear that you're stuck waiting with the pain. Dr Jallo is one of the leaders in the field, so I imagine he knows what he's talking about. But that doesn't make the news any easier to hear. I know there are people on this board who walked out of surgery in far worse shape than when they entered. If the risks involved in your surgery would outweigh the benefits, then I guess it makes sense to wait. In the mean time, my only suggestion is to see how the new pain meds and patches work for you. If you have to wait for surgery, then managing your pain is the most important thing you can do for yourself right now. Have you thought about going to a pain management clinic? Also, looking after yourself emotionally as well! It's not just the physical aspects of a SCT that you're having to deal with. Have you thought about alternative therapies, like acupuncture? Even getting a message might work wonders. Sending positive vibes and thoughts your way! ~ Kirsty |
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Post by bluelove10 on Apr 2, 2012 20:09:58 GMT -6
Thanks Kristy! Yeah it's pretty hard to swallow, but I'm sure they know what they are talking about. I think I'm frustrated too, because i feel that if it were in a different location, maybe the Dr.s might be more apt to take it out now... The pain has just started to get more bothersome, so if it continues to get worse, or the pain meds don't help, then I'll definitely look into pain mgmt programs, acupuncture, etc. I've already started looking into local massage places, as I'm SURE that would help for a bit  and it's nice and relaxing which is good for the mind. Was your apt today or is it tomorrow? I hope it goes well! Please update us when you are feeling up to it! Blue Love |
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Post by bowtruckle on Apr 3, 2012 15:31:19 GMT -6
My appointment with the NS is tomorrow morning. I met with a physician at the Spine Center yesterday, and he said that he thought the lesions weren't schwannomas, but may be meningoceles.  He was going to have a radiologist take a look at my MRIs. I guess I'll just have to wait and see what the NS thinks. They also did x-rays of my right hip, because he felt that the pain was a joint issue, rather than nerve pain. I'll find out more about that tomorrow as well. I'm getting nervous about it all.... |
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Post by bowtruckle on Apr 4, 2012 13:14:46 GMT -6
Update I saw the NS at the Mayo this morning. It appears that 2 different radiologists and the NS in Bahrain all misdiagnosed me. The NS & Radiologists at the Mayo have reviewed my MRIs and believe that what I have are actually sacral perineural cysts - also referred to as Tarlov Cysts. The NS also said that no-one at the Mayo would operate on them (very risky/complicated surgery), but did give me the name of a NS in Washington DC who specializes in these cysts. He did say that I should not even consider surgery until my symptoms are significantly worse as the benefits would not outweigh the risks of surgery. I am now the poster girl for obtaining a second (or third) opinion! The NS I saw in Bahrain was ready & willing to operate on what he thought were Schwannomas. These cysts are filled with CSF. I hate to think what would have happened.  The NS also said that if I ever have abdominal surgery I need to let the surgeon know, as again, accidentally slicing the cyst would release CSF and risk a whole host of complications. I feel as though I have dodged a bullet, but at the same time, if things to get to the point where surgery is advised, it is very risky. For what it's worth BlueLove - he did say that if they were Schwannoma, I would almost definitely end up with neurological deficits after surgery because of their size/location. I don't think he would have been willing to operate unless my symptoms were far worse than they currently are.
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Post by kansasmom on Apr 5, 2012 7:44:15 GMT -6
Congratulations on "dodging the bullet"! Interesting... is the lesion at T1 also a cyst?
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Post by bowtruckle on Apr 5, 2012 16:27:15 GMT -6
Hi Kansasmom, Yes - apparently the lesion at T1 is also a cyst. That one is asymptomatic, so I was never too concerned about it. The NS said that small cysts like that on the spine are very common. The bilateral cysts at S1 are more of an issue - the larger cyst extends into my pelvis, and was more than likely responsible for my abdominal pain. The symptoms and potential issues (loss of bowel & bladder control etc.) haven't really changed with the diagnosis, just my options. So I've dodged one bullet, but I'm not sure that the replacement is any better. I'm still doing my research. Still - in the scheme of things I am so much better off than many people here. I think of all that "C" is going through, at such a young age, and I count my blessings. I think you're doing such a fabulous job - it must be hard on you, but you always seem incredibly upbeat. |
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Post by kansasmom on Apr 5, 2012 20:45:44 GMT -6
Bowtruckle, thanks. The last few weeks have been tough. We had a wait to get approval for more radiotherapy for 'C'. There really wasn't a problem, it turned out, just a VERY poor communication process to get the approval taken care of, which stressed me no end. Now we are moving forward again. He even left for a couple of days to attend a competition 4 hrs drive away this afternoon - 9 days into his radiotherapy - and accompanied by his engineering mentor. I am so proud of him. I had been planning to take him, but it turns out I've been sick for the last few weeks. An overnight in hospital on Tuesday got to the root of it. Now I am taking it easy and on the mend. And 'C' gets this fab experience to teach how independent he really is capable of being!
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Have you tried sitting on an inflatable donut/ring type cushion? My brother cracked his tail bone, and that's what he had to use at work. He said it did help reduce his discomfort somewhat. 
and it's nice and relaxing which is good for the mind.
He was going to have a radiologist take a look at my MRIs. I guess I'll just have to wait and see what the NS thinks. 
The NS also said that if I ever have abdominal surgery I need to let the surgeon know, as again, accidentally slicing the cyst would release CSF and risk a whole host of complications.