Thought I had a pinched nerve in my neck

[dolphintale]

I'm new to all this. A 3 cm tumor in my c4 region extending up to c2 and down to c5 is the last thing I expected to hear after my primary physician (bless her) ordered an MRI. I thought I just had a pinched nerve in my neck. Since this January I have had 3 MRIs and will have another in a couple of weeks. I have been referred to and gone to a neurosurgeon in Pittsburgh. He has said that surgery is probably out of the question since the tumor is pushing against the vertebral artery. He has suggested trying radiation therapy which I'm sure is what we will discuss when I return to him in a couple of weeks. I'm not sure what type of tumor it is. Is the only way to tell by biopsy? He hasn't mentioned a biopsy.

My symptoms seem to get progressively worse in a short time period. Numbess in right arm, three fingers on my right hand stay numb or tingling. Big toe on right foot is numb. A patch (the only way I can explain it) on the inside of my leg from the knee upwards and downwards midway feels funny....not really numb but not normal. My jaws get numb or tingly and my tongue seems to at times. My ears ring or buzz (mainly late in the afternoon) and I break out into clammy sweats. Then last evening I seemed to have lost sensation in my vaginal area (all very private and something I would never post) but am confused, bewildered but trying to stay very positive.

Does all this sound normal....if I am put in a "wait and see" mode which seems kind of common, does it warrant a second opinion?

My job keeps me very active....I work with at risk youth and I am getting to a very busy time of year. If radiation therapy is the path chosen will I be able to keep up with a very busy schedule?

Thanks for any advice.....

[ace]

I do not know about the radiation part but I can say the other symptoms you are having are normal. You tumor is high and will affect your whole body unfortunately. I believe a second opinion is always warranted, doctors are people, they are not gods and could have different opinions. I am sorry you are in this position it is not one any person should have to find themselves in, but the people here are very supportive and can be a great asset to you. There is a FB page many of us are on, you should check it out and join, you will probably get faster answers on there; Spinal Cord Tumor Association SCTA. Good luck to you, take deep breaths and try to stay positive, I am sending loving healing positive energy your way.>>>>>>>>>>>>>>

[Linda51]

Hello there, welcome to the group but sorry you have this as well. As Ace have said, what you are experiecing is normal in that area. I would get more opinions as well. No one should have radiation first, unless they can't get the tumor out.

Not sure where you are located, but the best advice we can give you here or on SCTA FB is get in contact with Dr George Jallo at Johns Hopkins in Baltimore, MD. Dr Jallo will look at your MRI for free and either call you or email you with his opinion. If he thinks you need surgery sooner than later and you can't go to him he will tell you someone closer to you if he feels like you will be in good hands with that Neurosurgeon.

For most NS these days they are telling the patients to take the wait and see approach. They don't want to operate until your worst. We usually say on here the way you go into surgery is the way you come out. This can be true for some and not so for others. I have been around here for a long time and have heard all kind of stories. You need a NS with experience and also uses Evoked Potential monitoring during surgery. This will let the surgeon know if he getting close to the nerves. If he/she is it will let them know and they can stop the surgery and then start back.

There is some good outcomes as well as not so good. Every case is different. Technology is better than what it was 5 or 10 years ago. We are here for you and you will be in my thoughts and prayers. Hope this will help.


Mailing address:
George Jallo, MD
Division of Pediatric Neurosurgery
Johns Hopkins Hospital
600 North Wolfe Street, Harvey 811
Baltimore, MD 21287

email address - [e-mail]



~Linda

[Todd]

Listen to a doctor who says it's inoperable. This is code for he is uncomfortable with treating you. You need to find a good doc who has a lot of experience if surgery is going to be your route. also, don't let a doc just "biopsy" you. That's a tricky surgical procedure to just find out that you may need a second procedure to remove it. If removing is the path you need to run, then have it removed or debulked and then they biopsy what they took out. If I am reading your post correctly, it sounds like your symptoms are getting progressively worse? or are they stable? let this kind of indicate whether or not you should watch and wait or have surgery. If the tumor is growing, you will most likely be advised to have it removed. Think 4x before radiating your spine. Just because it's not a surgical procedure doesn't mean it's not going to cause a lot damage.

none of this is pleasant. I am first of all sorry you had to find us but rest assured, we are here for you. we've been where you are. we can help. take care of yourself and make sure you get sleep. your symptoms can be or seem worse when you are not getting enough rest.

[dolphintale]

Thank you all for the very helpful information. I have sent an email to Dr. Jallo to see about a second opinion. I live in West Virginia so Baltimore is not far. I'm really happy I came across this site....it's nice to know the much needed support is there.

[funnywalk]

Hi dolphintale - I agree with other posts that a second opinion would be helpful to you. Surgery could help in three ways - one, to remove or debulk some of the tumour, two, if it can't be removed, biopsies will tell you some useful facts about your tumour - what type it is, what grade it is, and if it has a cyst - and three, a laminectomy [removal of small portions of vertebrae] will relieve the pressure on your spinal cord. At the moment the tumour is being stretched and squeezed by your backbone.
It sounds to me as if your first consultant has not had enough experience of spinal cord tumours. Go where the expertise is greatest. Very best of luck with your prognosis. Please let us know how you get on.

[dolphintale]

Thank you funnywalk. I have already heard back from Dr. Jallo and he is willing to look at my next MRI (April 15th). Finding this site has been wonderful.....truly appreciate all the information and support. I hope I can return it all someday

[waterlady711]

So sorry you are having to go through all of this. I am so glad that Linda provided Dr. Jallo's info and that you contacted him. He will be able to give you an "educated" guess as to what type of tumor it is without having to do a biopsy. I am currently a "watch and wait" patient of his, and believe he will give you the best advice possible. I would suggest not letting any doctor talk you into any type of invasive procedure until you have heard Dr. Jallo's opinion of your April MRI.

Praying for a positive outcome for you.

[von]

I am one of those at current is told that my tumor is not operable. Surgeon went in to remove it if he felt it could be, was not able, so he did remove enough to biopsy at the time. T10-L2.
I go to Barrows here in Phoenix and they are known for their skill in the field of neurosurgery. The Barrows board of neurosurgeons met together to discuss my cause and did suggest radiation in my case. I went through radiation in June/July 12.

I do have to say radiation was 100 times more brutal than spinal surgery has been. It seems that it's harder on people who have larger masses or tumors that can't be removed. The swelling post radiation is bad, so it is likely to increase symtoms.
I'm going for follow up on my MRI in mid-May. Going to talk to doc about symtoms persistence and whether my cyst has returned from radiation.

I can say radiation has dramatically altered my life. My recover was slow and at this point work isn't an option. So it did change everything for me. That's probably what made me angriest. Surgeon was open about the recover time (2 years) but oncologist kept on and on about how he didn't think I'd have side effects.

Sorry I don't have more to share. I'll compile the info as I get it in.

[dolphintale]

Thank you Von for your input. All of this is so overwhelming; however, all the shared experiences on this forum have been wonderful and very helpful. Radiation sounds like such a "simple" path to take until you learn of the experiences of others. I guess none of this is really "simple" though, is it? I hope you have positive results from your mid-May MRI.