Post by Charity R. on Aug 18, 2008 12:40:51 GMT -6
I've found that very few people on the board have Schannoma tumors. In fact if I remember correctly I have only come across two.
My name is Charity, I live in Utah and on August 13, 2004 I was diagnosed with a nerve sheath Schannoma spinal cord tumor.
Once diagnosed I could track the symptoms back to fall of 1999 when I became pregnant.
When I was diagnosed I had just a few days to prepare for surgery because of how compressed my spinal cord had become. The NS was shocked I was still walking. In that few days I learned a lot about this type of tumor.
Schwannoma tumors are rarely cancerous. Only about 2% are. They develop from wacked out cells surrounding the nerves. In my case I was told that the tumor started on a nerve running alond one of my ribs right by the spine. I also learned that they are very slow growing.
I would love to meet other people who have been diagnosed with this same type of tumor.
Like you I have a Schwannoma (named him Fred easier than giving the techincal name) I have had 2 resections the last being about 1 1/2 years ago. Mine is in the L4 / L5 region Though they say these things are slow growing mine went from undetectable a year after the first cut to being rushed into OR 6 months later. Fred has presented challenges from relationship issues while dating to a tough road with my kids not understanding dear old Dad's limitations. But here I am 2 years after surgury #2 over all feeling good (though the damp weather today has me feeling it), engaged and my boys (12 and 16) living a happy life what more could a guy want
Post by sophieruth on Sept 9, 2008 19:44:56 GMT -6
I also had an intramodullar schwannoma in T5-T7 region of my spine. It was melatonin variety - that as I was told is extremely rare. Dr Borges performed the surgery in MGH in Boston in September 2008. Supposedly 99% percent of the tumor was removed and 2 consecutive MRIs did not show any regrowth. I had very easy recovery and until now very mild side effects: unsteady gait, somewhat stiff and heavy legs, some numb areas in my torso, but practically no pain. It all changed about a month ago when I started experiencing pain that is steadily getting worse. I am going through the motion with my primary care doctor of eliminating other possible causes (so far several blood tests and tomorrow I'll have ultrasound to check my liver and gallbladder) but I am convinced that the pain is caused by the damage done by the tumor and surgery. I am at a loss what to do about it and who to consult: my surgeon, the neurologist who diagnosed the tumor, the pain specialist? I would appreciate any advice. Sophie
Diagnosed September 2007. Surgery on 9/26/07 performed in MGH in Boston by Dr Lawrence Borges. Intramodular schwannoma melatonin variety T5-T7, 99% removed. Very good recovery, some pain started a year later and persists till now.
Post by deirdre612 on Sept 30, 2008 17:49:49 GMT -6
Hi guys, nice to see someone posting in this department! My first surgery was 10th July 1998, they had no idea what kind of tumor they were dealing with until it was analysed during surgery and found to be an 'ancient schwannoma'. Apparently that means it could have been slowly growing since I was born - I was 24 when diagnosed. The second surgery was 29th January 2002, when I was 28. Both were in the same area, T7 - L2. My cord was also tethered at T2-T4, this was all fixed up with the second surgery. Nobody is sure why I had a regrowth, its possible it was there all along, but because my NS did no follow up MRIs whatsoever there is no way to know. The main thing is that after my second surgery I am left with virtually no residual symptoms - I have full movement, no pain, and only a slight loss of feeling in patches on my legs. I have a large area on my left side that has zero feeling due to them needing to cut 4 nerves to remove the tumors, a fairly small price to pay and it doesn't impact on my movements or anything. Great spot for a tattoo, I didn't feel a thing!
My full story is on the people page, just look for Deirdre and you'll find it. Its a little out of date as I have since had another baby (who is now FIVE!), so if anyone wants to know anything please feel free to send me an email - firstname.lastname@example.org.
Schwannoma surgery T9-L2 July 1998, schwannoma recurrence T7-T12 Jan 2002, cord detethered at T2-T4 Jan 2002. Running, jumping and making the most of every single day!
Post by psdirector on Jan 23, 2009 11:03:25 GMT -6
I've had several Schwannomas. I had two large ones removed from my spinal cord in 2001 (T10 and L1 - L3) and I had another removed from an intercostal nerve near my lung in 2003. I had symptoms for a long time which were all attributed to being peri-menopausal. When I was finally diagnosed, I could hardly move without agonizing pain in my back and down both legs. Fortunately, my only long term effects are numbness in my right hand (but not much of my arm) and numbness in my entire right leg (but not my foot). About two years ago I was having a lot of lower back pain and my neurosurgeon pointed out that losing the 35 pounds I had packed on after the surgery would probably help the back pain considerably - so I lost the wait and darn it - he was right. My back rarely bothers me now unless I really strain it. When I'm exercising and working on my abs, I'm virtually pain free. If I let the exercise slide, it bothers me again. My story is on the people page under "Pat". About a year ago I was also diagnosed with Chronic Lymphocytic Leukemia which, fortunately, has been pretty indolent so far and I will probably go a long time before I need treatment. I haven't been on this board for a long time because it's taken me a while to get my head around the CLL. I just keep thinking of Gilda Radner's character Rosanne Rosannadanna - "It's always something!" I'm so grateful to be feeling good and I love every day and I try not to think about the negative stuff because all any of us can do is live one day at a time.... and for today, I'm doing great!
It's been several years since I've checked in with this forum. Looks like things have changed a bit, new website and all. Nice.
I used to be relatively active on the old website, after my surgery in '97. Life got busy with two kids and I really hadn't felt the need to check back in. Well, that's not entirely true, I suppose what drove me off was that the old website had become more of an emotional support group, rather than a nuts & bolts physiological/neurological/operative procedure info clearinghouse type of website. Not that the emotional support isn't important. It's just that the touchy feely personal stuff is.........well, personal. It just wasn't my style and I wasn't getting a great deal from a lot of it. When folks started talking about getting Oprah involved (true), I threw up my hands. Still, if that's your cup, have at it.
Something, that's given me lots of problems, after the schwannoma surgery, is adhesive arachnoiditis (AA). I'm sure plenty of you know what it is. It's just funny when you get a new nurse at the doctor's office that thinks it has something to do with spiders.
I hadn't really thought about how comparatively bad it was, until a loaded seven foot server cabinet fell off of a truck and crushed my right knee. Yeah, a computer server cabinet. The 19" rack format variety. When the docs asked how it happened, I told them I had a data processing accident. My server crashed on me. You would have had to have been there.
Anyway, from the way it felt, I thought at first that it wasn't too bad, except for that bothersome POP sound. Looked ugly, but didn't hurt bad so my "gentle bride" drove me down to emergency room. The docs looked me over and figured I just had some bruising. All this time, I was telling them it really doesn't hurt much, but there's still that POP. They shot some xrays and came back with a completely different diagnosis. Apparently, the knee and bones below it were pretty badly shattered. Pulverized actually, in places. Fortunately, the ligaments and cartilage were in comparatively better shape. All I needed was an immobilizer, crutches and time to heal it all up.
What's significant, about this seemingly unrelated accident, is that the pain I experienced was much less than the AA pain I dealt with every day. When the ER doctor marveled at my tolerance for such a gruesome injury, I lectured him (forgivable as I used to do it for a living). I pointed out that folks with AA weren't too terribly uncommon, and when one showed up at the hospital complaining of pain he maybe oughta' treat them with a little respect. Folks with advanced AA are experts at this pain stuff and he ought to prick his ears up a little in the future. Didn't need to take any other pain meds after the accident, but then I'd kind of gotten used to pain so it wasn't anything new. Well, that point's beaten to death, but you catch my drift.
Anyway, I have a real aversion to all things opiate. After the AA got progressively worse I started using more and more Neurontin, then Lyrica and then Cymbalta to sleep. Lots of that stuff, because I really wasn't interested in going the oral opiate, or (shudder) infusion pump route. Might use that later if I really, really have to. I put off the decision long enough that technology of the spinal stimulator improved significantly. I had the permanent one put in four months ago. It has really helped and I've weaned myself off of all the meds as of four weeks ago. Titrating off of Cymbalta was far worse, in my opinion, than the implant. CRANKY!!, but much better now, thank you.
The doc asked what level of pain I had after things healed up a bit. I had to tell him zero. I mean, there's still plenty of neural "deadness", odd sensations etc. from the waist down. But pain like I used to have, no. Not braggin' just sayin'.
So if things aren't working out well with your current treatment, keep asking around. Treatments get better. Just keep going back to the waterhole and your liable to be able to take advantage of improved (or new) technology. You're not always stuck with the answers that were available after your first surgery. My pain doc said the stimulator technology wasn't so hot even five years ago (which is just about the last time I'd asked about it).
With the forgoing in mind, I'm a little uneasy with this "survivor" terminology (seems like it's new since I went away). I mean, we all cheat death for our whole lives, until the day we.......don't. There are more than a few of us that have had tumors that weren't, or are not, life threatening. I don't really feel like I qualify for the title of "survivor". It's not like it came close to killing me (but that's just my tumor). I realize there are plenty of others that can and will do you in rather quickly.
My point is, there are plenty of different tumors and locations, with plenty of different outcomes. Some leave you permanently dinged up, but you get up, drink your coffee, take your meds and "mount up" every morning. You do this for as long as God and your doctors can keep you going. I think that's true for all of us. Anyway, I'm sure I've hacked some folks off, which wasn't my intent, but the seemingly universal reference to the "survivor" terminology, I always felt was a bit broad.
Unless your variety of spinal tumor is REALLY bad, most of us have a lot better probability of getting wiped out by diabetes, cardiac problems, strokes, inactivity, or just wearing out. The final outcome is the same, so I think the emphasis on life, family, and the general human experience (albeit a disability prone version) is a good deal more proactive than that looming survivor moniker.
Now if you still want to talk survivor stuff, let me tell you about raising my kids!!!
Habib, So happy to hear of the great success you've had with the new and improved spinal stimulator. Thanks for coming back here to tell us about it. That's fantastic that you are off all prescription pain meds and are doing so well. I enjoyed your website, too. Teresa
Tumor @ C-6/7 (Probably an ependymoma per Dr. Jallo) Tumor 1st discovered June 2007. No surgeries yet (Dr. Jallo said to wait.) Annual MRIs. Neuropathy, neck & shoulder pain, & lots of weired sensations!
Well, I hadn't checked in on the (old) site in a while...over a year, only to find this new one!
Add me to your list of Schwannoma "survivors". (I don't like that term either, Habib.)
I was diagnosed in July/August of 2004. Had the removal in November of 2004.
Recovery was slow but good. It's been a little over 4 years out now and the only lingering effects I seem to have is a numb left side of my skull. (Ha! now I really am a numbskull!) Anyhow, I still have twinges in my left arm and hand/fingers. I get extreme throbbing headaches about once/twice a month, comming from the numb left side.
I have my next (last) follow up in Nov. of 2009 which will be the 5yr mark. Praying for a clear MRI. I consider my surgery and recovery extremely successful.
My main 3 pieces of advice to anyone diagnosed with a SCT: 1) Get a 2nd opinion!!! 2) Find a doctor that has experience with your type of tumor and SCT's in general. 3) If you don't get a good feelng from your surgeon, TRUST THAT FEELING! Find someone who makes you comfortable.
Blessings to all!
Dawn in FW,TX. C2-3 Schwannoma. Surg. 11/2004, Dr. Howard Morgan, UTSWMC-Zale-Lipshy University Hospital, Dallas, TX.
I have had 2 intradural extramedullary schwannoma's. This last surgery they removed my S-1 root nerve which left me with much damage. I have terrible shooter pains in the areas that are dead. No one can seem to find help for me with this. I sleep 1 hour at a time at most. Does anyone know of some kind of help with this? I would GREATLY appreciate any info on this. email@example.com Thank you!
Sorry to hear of your pain and lack of sleep. How long ago was your surgery?
I think if you read about the input of others here, especially in some of the other catagories you may find some helpful suggestions. I would think your NS or neurologist would be able to guide you to some kind of therapy that's specifically aimed at your type of pain. Please let us know of any progress. linda c.
Aug, 2004: Intradural Extramedullary Meningioma / Schwannoma Tumor @t-12. Laminectomies T-11 & T-12. Syrinx. Numbness in both feet, leg and back pain.