Another new member

[tyler1212]

Hi everyone, my name is Tyler. I had surgery in December of 2007 at University of Minnesota for a Intramedullary sct that turned out to be a subependymoma. I had actual tumor that ran from C5 to T3 and a syrnix to C3. My surgeon, Dr. H.Dennis Mollman, was able to remove about 90 percent of it, with residual tumor at C5 and T3. According to my surgeon he thinks that the left in tumor will stay, as he put it, static. I think that means he doesn't think that it will continue to grow, of course I will be having MRI'S for quite sometime, to keep an eye on it. I can walk unaided but my legs feel heavy and weak. I also have lots of numbness in various areas of my body, a nasty burning sensation in my left elbow, and last and especially not least, severe hypersensitivity in my right arm from my elbow through my hand. I'm on neurontin at 3300mg's a day, that does help a little. Anyway, I'm very glad to have found this forum, it really does help to feel not quite so alone in this situation. Just a side note if I may, Tracy 2001 I was very sorry to read, in a previous post, that your subependymoma is growing. If you don't mind, can I ask why they couldn't remove the center section of your tumor? and how soon after your surgery did it start growing again?

[tc]

Hi, Tyler. Welcome to the group. I'm glad that you finally found us . . . though, of course, I'm sorry that you qualify to "join the club." I haven't had surgery yet, so I'm not sure how qualified I am to give any advice. However, I read that you have "a nasty burning sensation in left elbow." I was prescribed Lidoderm (lidocaine) patches to apply to burning areas. The patches were invented for pain from shingles, but they work for other causes of nerve pain too. The patches are big rectangles that you can cut to any size. I wrap strips around my big toes and the lidocaine helps there. I was told to put them on my neck and shoulders for pain, but they don't seem to have much of an effect in that area (like putting a bandaide on a broken bone). I'd like to put them on my fingers, but the patches aren't waterproof. Anyway, the patches might take the edge off some of the elbow pain, if any of it is caused by sensitivity to touch or pressure.
Again, welcome to the group and we look forward to your posts. Don't forget to submit your story to the People Page when you get a chance. I always find it interesting to read the details of peoples' stories.
Teresa

[tyler1212]

Hi Teresa, thanks for the advice. I will be seeing my GP this next week and I will ask him about the patches. The neurontin works pretty good at helping me with the elbow burn but does very little with the hypersensitivity in my right arm and hand. I would love it if the patches would help there, but I guess it would look pretty goofy wearing those patches all over my fingers. I'm sorry to hear that they didn't help with your neck pain. I guess that we are all a bunch of test subjects and we just have to keep trying things till we find something that works. Take care and thanks for the welcome. Tyler

[tracy2001]

tyler1212 said:

can I ask why they couldn't remove the center section of your tumor? and how soon after your surgery did it start growing again?

Tyler,

During my surgery the monitoring equipment started setting things off. My tumor had been in there for at least 20 years. I have sections of my cord that are completely filled with tumor between the nerve fibers. In the MRI t2 sequences where tumor shows white and nerve fibers black, those areas look like white clouds -- it's hard to see where the nerve fibers are.



It's hard to say when they started, or if they stopped growing after surgery. Normally with 6 month interval MRI's I can't see the change. You can tell between yearly intervals a little easier. If I look at post surgery vs today (7 years in Oct), you can see a large difference. The biggest change happened fall of 2006, with 3mm length and 3mm width growth in one section in just 6 months. I have no reason why it started the fast growth then or why it slowed down again. I have 3 tumor sections that the MRI shows clearly, but they tell me it's all linked together by the cloudy images in the scan. They expanded my dura when they patched me back up, it averages about 16-17 mm diameter -- not a true circle. My biggest tumor cross-section with defined edges is 12mm by 16mm oval shape pushed against one side of the dura, it's about 15 mm long.

Luckily subependymoma's grow slowly, unluckily that means chemo and radiation are not able to affect the tumor -- yet. MRI's are not exact in the cellular scale; they are more like paintings that need to be interpreted when you are talking about the difference between nerve cells and tumor cells. Also there's a difference in MRI machines, angle of scan planes, positioning of the head etc - so it's hard to take measurements that mean anything. It takes mm's of change for a doctor to call it evidence of a change in size.

That's probably more detail than you wanted, but there's no easy answer for your questions. I've asked them many times myself. I think the MRI's aren't so important to me any more, it's just the effects of the tumor that matter. It's very frustrating to have symptom changes without any visible changes on the MRI and the doctors look at you like it's in your head.

It sounds like you are doing well. It's still very early in your recovery period. The hypersensitivity will get better over time. The brain needs to be calibrated to what is real and what is noise in the nerve signal. Try staring at your arm while you touch it, your brain will believe your eyes. It took about 6 months for me to get less sensitive.

tracy

[katherine]

Hi I too have a subependymoma. My tumor story is very close to Tracy's. I've had it for over 20 years, unable to be removed, unable to show or see anything on the MRI's, etc. I have the burning and hypersensitivity to some spots on my body...mostly my legs and back. Tracy your advice is great. It takes time to retrain your brain to what is real and whats not. I like the wording you used....the static in the nerve system! I am 2 years post op and I think most of my pre op and post op symptoms are setting down. My NS told me it took 18 months to see where your new level of par would be. Though I'm experiencing new symptoms I am always wondering if I'm doing the right thing. I am on neurontin 1500 mg daily, baclofen 50 mg daily, 60 mg cymbalta (though a new study stats that if using for pain relief needs to be 90 mg or higher), and Fentynal patch for the extra pain relief. I swear by the patches. Though it took me a week of being snowed to get used to it...its given me a different outcome with life. Instead of being immobilized by the pain its allowed me to get up and around. Anyways welcome to the site. This group of people are a great support and has helped me throughout the past few years. If you have any other questions about subepenymomas...theres a few of us here!

[tyler1212]

Thanks Tracy and Katherine for the replies. I believe that this thing has been growing in me for about the same length of time as in the two of you. I know my symptoms started about 8 years ago but I'm sure it had been doing it's thing year's earlier. Tracy, I'm going to try the staring at and touching my arm trick that you suggested. It won't be hard to do because at the level of neurontin that I'm on I find myself just starring off into space a lot anyway, Ill just have to try and remember to direct my stare down toward my arm instead.

[tracy2001]

Tyler and Katherine,

I used to take neurontin, started at 600mg a day went up to 2700 mg a day. After taking my dose of neurontin, I would just be in a fog for about an hour. I would have to just sit there and stare. After a couple years of that I went to a pain management clinic, it made a big difference in my quality of life. My PCP was just following what the neurosurgeon started neurontin for tingling, tylenol for aches and oxycontin for pain. We just kept increasing doses of neurontin to try to handle the burning & tingling. The pain clinic was great. The doctor went back to what he called the old standard for nerve pain -- amitryptiline. After weening off neurontin and only taking 25mg of amitryptiline at bedtime, I became a different person. My wife was the one who noticed it, she said I was more with it not as sleeply -- not as depressed. I wasn't zoning out twice a day after taking neurontin. Some people swear by neurontin, but for me it didn't do as much as amitryptiline. Also, the pain specialist told me neurontin is voided by bowel movements as I have retention problems in that area(because of paralysis, I have to use digital stimulation to have a chance at a bowel movement -- I really don't want a colostomy bag); he thought my body was storing too much of it in my system. I would highly suggest a pain management clinic if you're PCP is doing the pain management for you now. It was my PCP who suggested it, so I didn't have too worry about how he felt about someone else making a new drug plan.

I am now on 50mg of amitryptiline, 3x 60 mg of oxycontin (8 hour doses doesn't last 12 with me) and senokot for bowels, Tylenol as needed. I couldn't function without these meds. I don't have side effects from oxycontin or amitryptiline other than it probably adds to bowel complications.

just thought I'd mention amitryptiline.
Tracy

[tyler1212]

Yeah Tracy, I'm definetly not married to the neurontin. It peaks and valleys to much for me. I also agree that a pain specialist is the way to go. I'm going to ask my Doc on Wednesday if he can set me up with one, although I'm not to excited about the weening off the neurontin part but what must be done must be done. Tyler

[Joel]

Welcome Tyler. Please look around on our site and read some posts. There are lots of good things being passed around. Keep us posted on your progress. Are you doing any physical therapy?
Joel

[Ali-Brad]

Hi Tyler,

I find Pregabalin (Lyrica) better than the Neurotin (Gabapentin) for me. It's a personal choice and finding the right balance, but as with all these meds it only takes the edge off things and certainly does not get rid of the problems. I use the Lidocaine patches, particularly for my left hand. I try to save using them for my 'worse than bad days'. They are good, but yes a bit awkward on the hand. I put a small 'surgical' type glove on to keep them dry.

I also use an ENM and find this helps. It was given to me by the pain clinic and is better than a TENS as you don't get that irritating pulsating feeling. There is detail on www.remediuk.com.

All the best
Alison