Spinal Cord Tumor ---Thread started by Yvonne

[Linda51]

Hi Yvonne,

I think this will help you to get some response. You had it under a different category. I hope you didn't mind me copying and pasting it in the main forum. ~Linda



Yvonne
Guest
Spinal cord tumor
« Thread Started on Today at 12:21pm »

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I learned 2 months ago that I have a tumor (probably benign) inside my spinal cord after an MRI was performed. What was a 'spot' 6 years ago has grown. I have been dealing with numerous physical symptoms for 6-7 years (back pain, tingling of hands, numbness at times in various locations, join pain, etc.). Most doctors I have seen thought these symptoms were related to fibromyalgia. My spine/neurological doctor tells me we need to take another mri when my symptoms get worse and see if surgery should be performed to remove the tumor. I know this surgery is very risky and I don't want to have it done unless there is no other alternative. My problem is finding someone that really understands my condition and can talk with me, helping me to understand what pains are related to the tumor, what medications would help (taking Dicloflenac for pain and Xanax for sleep right now), and how I can expect my condition to progress...what is my prognosis?

I live in Charlotte, NC and there are plenty of doctors here. I just don't know if I am seeing the right one. How rare is this condition? Are doctors not wanting to talk to me because they don't know how to help? Can anyone refer me to someone that is very knowledgeable and can point me in the right direction? I am feeling very despressed at the moment. Although I feel fortunate that I am still able to walk, hands work, and can work...how long do I have until I am disabled? Any any information or experiences anyone can offer would help me feel not so alone in my condition. Thanks.

[qhcrazy]

If you are looking for a great neurosurgeon, I had my tumor removed here at MCG (Medical College of Georgia) by Dr. Mark Lee of Augusta, GA. He did a wonderful job and I am walking, moving, etc. I am only 4 mos. post op., so I KNOW what you're about to go through, as do others on here. Try to stay positive. Keep us posted on your progress!!

[tc]

Please go get a second opinion. Duke's brain tumor center is fairly close to Charlotte. They take care of spinal tumor patients in that center too. Have them look at your MRIs. Or you could take a longer drive to see Dr. Jallo (neurosurgeon) at Johns Hopkins in Baltimore. I'm in Norfolk and looked into going to both of these places. I got an appointment with Jallo first and didn't end up going to Duke for another opinion. Since this is such a rare condition, you really need to see a doctor at a large University hospital. Jallo sees spinal cord tumor patients regularly. You might be able to just send your MRIs for him to look at without actually having to go there . . . but I thought it was greatly worth the trip to see him personally. (Jallo told me that I should wait for surgery because my tumor was still small and my symptoms were relatively mild -though they sound like yours!) Make sure you have regular MRIs to keep an eye on that tumor! You are not alone! Where is your tumor located? Mine is cervical.

[paul55]

Hi Yvonne
As suggested above, Dr. Jallo is a good Dr. to get another opinion. He will look at your MRI's ang get back to you either email or phone. His info is on the John Hopkins website or someone on here can readily find it for you.

I had cysts in my cervical area. Whether you have a tumor or cyst(syrinx), as they grow they will cause more symptoms, and damage. Depending on exactly where your tumor is dictates what your symptoms might be. Only MRI's and a good doctor can tell you this.

The "wait and see" approach can be very frustrating and damaging due to the fact that whatever damage is done now, you stand a chance of not getting back what you lost prior to the surgery you may have. I went 6 years as well like you did, before my symptoms of tingling in my right arm increased to lack of hot and cold sensation, to a major uncomfortable burning sensation before I went to do something. I still have it today although Gababentin helps to relieve some of it. Will it ever go away? I don't know. There's hope.

You also need to be your own advocate, especially with regards to your symptoms. I chose to move forward and have the surgery. Had I waited any longer, I can't imagine how much more would have gone wrong with my arm. Maybe lose muscle control? Who knows. But I will also say that my PCP and neurosurgeon did also say that when I start to exibit the symptoms of any loss, it is time to do something. These opinions may vary from doctor to doctor. You just need to find the right one. Dr. Jallo can also probably recommend a surgeon in your area.

Please don't feel that you are alone. You're not. There's plenty of information and help on this forum that might answer some of your questions and make you feel a bit more at ease. We have all gone thru what you are going thru now. Same fears, same questions. Spend some time doing some searches especially on the old forum(we're going back and forth between two of them now temporarily) to get some info. Also read some of the stories in the people section on the main page of the forum. A lot of info there.

Whater you do, keep us posted.

Regards
Paul

[Gundestrup]

Hi sorry to hear that you have had to join the ranks of having a tumour! I to have been told to wait. I have a tumour T2 to T5 and the risks of surgery apparently outweigh the deficits I have now which is constant pain in the back and neck, arm and altered sensation in my foot and painful/burning arm. I have been monitored since I found out in February 2006. I have sought the advice of three surgeons, one of them Dr Jallo even though I live in Britain. Although they differed on type of tumour ie ependymoma or astrocytoma they did say that surgery would cause more deficits than I had at this stage and it was preferable to wait. It has been hinted (they don't like to commit themselves these doctors) that probably another two years I will need the operation as the tumour is growing slowly but obviously deficits are occuring. I have researched these tumours and it does seem to come up quite alot that its roughly about 40 months that the duration of tumour defecits occur before finally sorting out the tumour. I also have read lots of stories where it seems to me that people have had surgery when their deficits have been minor and they have ended up worse off after surgery. My advice to you is of course get another opinion - ten if it helps (and you can afford it!). From my own experience I am thankful for the time I have and the things I can do on the flip side I am angry that there are things I| can't do any more that I used to be able to do. I am angry that I have to take pain killers and am angry that I have been left to deal with the mental hardship of waiting for that impending surgery and watching my every move and function and wondering "it this is - will I need that op now?". I can only sympathise with your predicament and if you ever want to spout off to me then feel free - I will totally understand. Good luck!

[tc]

Dear "Gundestrup" - I agree with you about the "mental hardship of waiting for that impending surgery". I try not to obsess about it, but when I've been told to monitor my symptoms, it is hard to not think about the tumor a lot each day. How often does the UK let you get MRIs?

[clarissa]

My heart goes out to you, Yvonne! I've got a very, very rare but aggressive, benign tumor in my cervical (C1-C2) that's intramedullary called a melanocytoma. And guess what?!!...this is my 2nd "rodeo"! I was diagnosed 3 years ago w/mjy first "glioma" that they said was "massive" from C1-C3, displacing 90% of my cord (my doctors couldn't believe that I was walking but my only symptom was a very numb, painful right arm that I couldn't feel hot/cold in anymore). I ended up having it removed by Dr. Curtis Dickman at Barrow Neurological Institute at St Joseph's Hospital in Phoenix, AZ. He's a brilliant neurosurgeon and a great doctor. During my first surgery, the sensors gauging neural activity (evoked potentials) went down on my legs and entire left side. Dr Dickman actually called my husband 3 hours into the surgery and said that I'd be paralyzed in those areas to some degree. Well, hours later while they were sewing me up, the sensors came back on. I woke up numb from the shoulders down but NO paralysis. They estimated that I'd need at least 8 weeks of inpatient rehab but I learned to walk and use my hands again well enough to leave in 4 weeks. It took another 6-8 months to regain normal use of my hands. Needless to say, I felt very blessed. I did much of my OT back on the job (software developer) and was working full time again w/in 6 months of the surgery. I'm on a slew of drugs including oxycontin and neurontin (gabapentin) and it ain't all been roses but I'm grateful. Admittedly, I've had a tough time dealing w/the knowledge that "it's baaaaaaaaaaaack" and I KNOW you're depressed and scared...I've sure been. It passes. I haven't decided when or if I'm going through w/a 2nd surgery - mainly because he says that he can remove the tumor but "can't promise me a cure" and they don't think I'll be so fortunate this time. However I know that I can handle whatever the future holds for me (with a little help from God!). Dr Dickman will definitely be doing my 2nd "cervical laminectomy" for me if I choose to go through w/another surgery. I'm more than happy to help you in any way possible and you'll be in my prayers. Hang in there, Yvonne! Btw, remember these neuro guys are brilliant but they don't know everything - esp. what the surgery's outcome will be.

[clarissa]

darn it - my docs name is Dickman! My typing is bad but I definitely didn't repeatedly write "thingyman"!!! Dickman. And he resected the tumor...not my arm! And I just started taking Sonata for sleep and it works like song! I'm in Nashville and my neuro here recommended Dickman in Phoenix. Dickman.

[clarissa]

how is it that users can reference their doctors by name, like jallo, but i can't? ok - profanity filter - how's this curtis d!ckman @ barrows.

[clarissa]

oh - and Gundestrup...i wake up each morning checking for movement in all my limbs too. dr d!ckman wanted me to have surgery in jan but considering he was telling me this right before christmas, i declined. i'm risking everything when i go under that knife and i needed more time to adjust to the idea of having to do this all again. i've run the gamut of emotions in the past 2 months! i probably will have the surgery either mid-march or when it becomes essential but i am at peace now - not resigned...never that! - but at peace. i hope you find yours too.