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Post by 1214 on Mar 31, 2009 11:05:29 GMT -6
Thanks Julie, I do have so many questions but I just don't know where to start. I guess I my main concern is that I want to make the right decision if the that decision is one that I need to make for myself. Do I wait for this thing to get worse and cause damage or do I take the risk of surgery and possible damage.. lol it seems a catch 22.
Tmasgio.. thank you for the suggestion.I just did check out the stories. How awesome that they are there to view. Sounds like everyone has been through their share. It is very comforting seeing that there are people that are going through or have gone through the same situations. I am grateful for all the information...
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Post by betty on Mar 31, 2009 15:12:52 GMT -6
Dawn, I forgot to ask if you had an MRI using the dye? It is usually what they do after the first MRI that shows a tumor. Stay clear of Dr's who have little experience in this area. As others have said you have time to investigate and get the best help possible. I have heard good things about Jallo also. Betty
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Post by 1214 on Mar 31, 2009 17:25:50 GMT -6
Hi Betty,
The first scan I had I do believe used dye that was 2 years ago. At the time the radiologist noted it as a hemosiderin deposit with no mention at all about cavernoma. Both the neurosurgeon that read the report and neurologist dismissed it as a blood spot with no other issues. So on I went struggling with pain and no answers.
This recent mri of my cervical spine was done to check my discs this was with no dye. The radiologist mentioned the spot and said probable cavernoma and noted that a grandient echo would be helpful. My neurologist still dismissed it. I am the one who has now told him I want a better look at it and am going to a place that has a 3 tesla machine to get a good picture of it. I also have an Arnold Chiari malformation and need to get that checked too. LOL yes I am falling apart with not one but 2 issues to deal with. Oh well, anyway i am going on Tuesday for the MRI and hoping to be able to take with the radiologist before and after the test to tell him what to look for. I have also read that with a spinal cavernoma most times comes cavernomas in the brain. I have had a couple of brain mri's and no one has noted anything on them so I would like to mention this to the radiologist to make sure he looks closely for one. I am hoping to get some answers soon. My leg has been bothering me more that usual and it makes me a bit nervous.
Is there any other tests i might need. It seems I have had so many already. Thank you for your suggestion about the dye and yes that is why I am trying so hard to find someone that has had experiance with these to give me some direction. I don't want to get caught with an emergency situation and no where to go as i live in a small town and to be honest our little hospital here stinks..
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Post by tc on Mar 31, 2009 18:23:58 GMT -6
Dear Dawn, First off, I'm so sorry that you are going through this. It is so hard to go for months (years) without answers. You are doing the right thing having Dr. Jallo look at your MRIs. Keep seeking and asking (assertively) until you get some answers or a plan of action. Doctors told me that they won't know exactly what kind of tumor I have until I have surgery and the growth is biopsied. I was curious how they seem to know exactly what you have when you haven't had surgery yet.
It is too bad that they didn't use contrast for your last MRI. The pictures with dye would have given more information. You are smart to get a 3 tesla machine for the next MRI. They give better pictures and are quicker.
I have a minor Chiari malformation also. Dr. Jallo pointed that out to me. No one had mentioned it before. I sympathize with your leg problems. My leg bugs me too. I keep a symptom diary, so I remember when new symptoms start or worsen. (You might want to keep a diary, too.) I review my notes before my neurology appointments, where I sound like a hypochondriac - but I know from reading this website that I'm not the only one with these strange and painful sensations going on in my body.
I hope that Dr. Jallo will give you some guidance. I also hope you can find someone closer than Baltimore to follow your case. In my opinion, if you have something rare, you really need to go to a big university hospital. If surgery is recommended, then travel to see the best doctor you can find. Get second and third opinions, if necessary. Please keep us posted. Teresa
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Post by 1214 on Mar 31, 2009 18:44:50 GMT -6
Hi Teresa,
You hit the nail on the head when you said you sound like a hypocondriac lol. I feel the same exact way. I am sometimes reluctant to mention things because I sound like a lunatic. My Primary Physician already told me a couple of times that I am an anxious person and he wants me on antidepressants. Everytime I complain about something they never find anything wrong and now that this has been found my primary is clueless since he is just a family doc. he has no idea what it is and still thinks I am anxious LOL..
A diary is great idea. I started that once and for some reason I never followed through with it but I think my new resolution will be to type something every night to keep track of things. I am always trying to remember when some new pain popped up.
They are almost sure it is a cavernoma because there is a hemosiderin deposit around it which means that is has bled. I suppose there aren't many tumors that bleed.from what I understand a cavernoma is a raspberry shaped tumor each raspberry is filled with blood. When it bleeds it causes damage and then somehow it grows. Each bleed does more damage. I have spoken to a woman in the UK that had one almost in the same spot as mine. She had a major bleed last year and lost all use of her leg, bowel and bladder. It is such a struggle for her everyday. She said if she had it to do over again she would have had it removed years ago when it was 1st found. That is why I am trying to gather information about the pros and cons of leaving it or taking the chance of surgery.
Are you near Dr. Jallo? What is an ependymoma and is there a chance that it will grow? Can you tell me what sort of symptoms you have? Dr. Jallo wanted to see my disks to check to see if the chiari or cavernoma are causinig my symptoms. I have had quite a few tests for the chiari and am being told it should not be causing my symptoms but then again this is from the same neuro who acted like the cavernoma wasn't a big deal. The chiari surgery is no fun either although I don't think it is as risky as the cavernoma surgery would be, but still I really don't want anyone cutting into my head. Have you had testing for your chiari? My chiari showed up on an MRI 5 years ago but it was missed. Funny thing all these things are being diagnosed in a short amount of time. Less than a year ago was when the chiari was found and I had a bunch of tests done, I was hoping everyone was done poking at me for awhile and now this. LOL.. Life is funny, I have an 8 year old son and I am so very concerned about him. Strange things go through your mind when you have a child to care for. I am always not feeling good and I feel bad for him seeing me like this all the time. Ok I am done rambling, thanks so much for your reply. Dawn
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Post by hairchik on Mar 31, 2009 19:17:20 GMT -6
Dawn, Well I totally know how you are feeling. Feb 2007 I finally got my diagnosis of a cervical cavernoma. I had trouble for over 10 years but was told it was a pinched nerve. After finding this wonderful site i learned more about what I had then our local doctors knew about them. I then sent my films to Dr.Jallo and set up surgery for June 2007. He was so wonderful and he calmed my worries about the surgery. I would not hesitate at all going back to see him. It was an 8 hour trip there but so worth it. If you would like to ask anything just e-mail me. I will be more then happy to tell you what I can. hair_stylin@yahoo.com
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Post by 1214 on Apr 1, 2009 13:32:27 GMT -6
I emailed you last night, and hope to hear from you soon.
I sent my disk to Dr. Jallo and am hoping to hear from him in the next few days. A guy I met on another site just let me know that he spoke to him last night and told him he could remove the cavernoma from his spine and is confident that there will be no additional problems from surgery. He is so very happy since he has been searching for some good news. Everyone he saw told him to live with it and his legs are very numb and itchy. I am very happy for him and am hopeful he will have good news for me.
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Post by betty on Apr 1, 2009 15:07:29 GMT -6
Dawn, Im so happy you are getting such good feedback. I guess if I were you I wouldn't return to the neuro you have been seeing. Maybe Dr Jallo could refer you to someone that could follow up with you. My tumor also is normally found in the brain and quite rare in the spine. We know our bodies better than the Dr. and we are the ones who have the symptoms. We will be anxious to hear what Dr Jallo says. Betty
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Post by 1214 on Apr 1, 2009 15:47:49 GMT -6
Thanks Betty,
Yes I am hopeful and will definitly let you know if I hear from Dr. Jallo. I am interested in the new procedure that all of you are talking about. I wonder if something like that would work on a cavernoma. I imagine a cavernoma is a bit delicate as you don't want to pop anything and make it bleed when they remove it but still sounds like this new procedure is the way of the future to avoid damaging anything more than is needed.
Is there someone here that can explain to me about the procedure that is usually used. I have been reading some things about making sure you are hooked up to something to monitor nerves while they are working on you. Can someone please explain all that to me so I know what questions to ask.
Thanks Dawn
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Post by 8338 on Apr 1, 2009 19:43:34 GMT -6
1214,
OMG, Susan told me that you were from the Buffalo area and I had to jump on. Welcome to our board (but not under the circumstances). I live in West Seneca and had been passed from one dr. to another and then I was sent to Dr. Suddaby(sp?) on California Rd., Orchard Park. He knew right away that I had some kind of tumor just from my symptoms. He operated on me but didnt have much experience with sct's and didn't get any of the tumor out so I had a second surgery with Dr. Jallo. He got out 98%, which was inside the spinal cord. Even though I am left with some deficits, I am still working, walking, and living.
Please email me at bmkeller@roadrunner.com and maybe we can talk.
Barb
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