Hi we do have a member here that had one and surgery for it as well...I will notify her to contact u.
welcome to our chiari family! it's only my opinion, but i would take all your old films and reports with you. in my own personal experience, which is limited, i find the drs are much more interested in the film, then the reports. if you have a dr. that wants only to review the reports, you are not with the right dr. and def. not with a specialist!!!
Thank you, Selma! I have been on a scavernger hunt to get as many of my records as possible from when all of this really got bad. (It was just after an auto accident, btw.) Now, that is not saying (knowing what I know NOW) that this was the onset of symptoms... just when they got really bad.
The hemangiomas are something I am just reading about. They're just another one of the things listed that I was never told about. And armed with the understanding and support of all of you here, I trust your judgments much more than I trust any of the doctor's judgements... at least the ones I have had so far.
Going back to a previous doc tomorrow to see if he will order the MRIs Dr. Batzdorf has requested. Keep your fingers crossed for me! (And keep it in your prayers that God would lead this!)
Thanks and Blessings!
U r welcome...I will see if I can get teh member to contact u tonight.
Good luck tomorrow
Thank you! I agree... but all that is available now are the reports. They are from 1999. I am in the process of trying to get a local doc to order the MRIs that Dr. Batzdorf (at UCLA) needs to evaluate whether or not he will take me as a pt. (In fact, I have spoken to several chiari specialists... all who want the same. So no matter what, in order to move forward with a specialist, I have to have these new MRIs.) Dr. B only requested MRIs of the brain, cervico-cranial junction and the cervical spine. I may even go ahead and try to get them to do a CINE MRI as well.... but if there is resistance, I won't press my luck! ;-)
lol! boy! you've really done your research! good for you!!! best of luck to you and keep us posted on your progress. you'll be in my thought and prayers...
Hi the member will be on later tonight...hope u r still on.
Selma contacted me and asked me to post to you...
First let me start by saying that we are a rare breed.. Having cavernomas and a chiari are very unlikely and extremely rare.
I had a cavernoma inside of my spinal cord which I had removed in May. It was a very risky surgery cutting into the cord but I have come out with not too many deficits. Most importantly I can walk and have bowel and bladder contol. Mine was located at T1 t2 level. From what I am reading here it looks like you have 3 of them. It doesn't seem as though they are inside the spinal cord but possibley 2 of them in the dura. I would need more info on what the report says to say for sure.
a cavernoma is a blood filled raspberry. As it bleeds it causes damage to various parts of the nerves. When they bleed they reattach and get bigger. If it is inside the cord it does permanant damage as it damages the spinal cord.
Have you had an MRI on the brain? If not you will need one as cavernomas are typically in the brain. There is a website that I would highly recommend for you. I am a member and it is full of informtion on spinal cord tumors.. It is called Spinal Cord Tumor Association.
My advice to you is to get all your information together. Talk with the neuro about the cavernomas and do not let him ignore you. Mine was ignored for 4 years after it was noticed and it caused me many problems. I didn't look to see if you had previous posts or not and I will do that when I am finished but I would need more information on your symptoms. Chiari can cause many symptoms and the cavernoma can as well. Sometimes they are hard to distinguish. I have had extensive testing on the chiari and have been told by 4 doctors that mine is a non issue although there are times I wonder.
I see you noted that you had mris and would like to suggest that you tell the dr. that you want an MRI on a 3 tesla machine to get better pictures and there is a dr. at Johns Hopkins University in MD that will review your disks for free. He is top notch and will email or call you with his suggestions. His name is George Jallo. Many people have travelled to have him do the surgery on the tumors. Don't let just anyone try to remove these. They must have the proper equipment to monitor your nerves while they work.
You can post here or you can Private message me. i would also be happy to share my phone number with you if you would like to chat..
I wish you the best of luck....Dawn
I had surgery 3 years ago on my right frontal lobe for Cavernous Angioma which sounds a lot like what your talking about! It is blood vessels that formed into what looks like a raspberry. Over time mine had gotten large and there was old and new blood in the brain. They operated to avoid further risk of damage to the surrounding area.
They told me that I could have these else where in my body, like the spine, but would not go looking for them until I showed symptoms.
This was found for headaches and other symptoms...problem was they did the surgery and the issues never went away.
That is because I have the Chiari. I go for my first spinal mri on the 9th and will be interested to see what my lower spine shows! If it will show something related to the Chiari or if it's another angioma.
Best of luck to you!!
Thank you so much for your quick comments! I can't tell you how much I appreciate my new "understanding family"!
I am going to a doctor tomorrow and I am going to take this all with me. I will talk to him about the various symptoms I have and as they relate to each thing (I have several lists some with basic symptoms and some more extensive lists.) I will try to encourage him to request all, and then pray that he at least does some. I know if I can get to Dr. B, he will likely look into the rest.
I have a very wide array of symptoms (which is probably why the docs who don't know chiari think I'm a hypochondriac!) some of which are: Severe HAs, pressure in my head, coughing/sneezing often makes HAs worse and causes pins and needles feeling in my chest, bright light really bothers me, feeling "all out of sorts" and not able to remember things well a lot of times, neck/shoulder/arm/thoracic/ lumbar pain and tension, neck/trapezius/shoulder/arm burning/tingling, feeling like my head is to heavy (thus I carry it forward and have TMJD), carpal tunnel, cubital tunnel, eye disturbances, icey sensations (especially finger tip size spots on face), crawlie feeling on scalp/back/legs (?RLS), sciatica, degenerative disc disease, heart palpitations, dificulty swallowing (not all the time), positional vertigo, hip and leg pain/weakness, ringing in my ears (that I have always called my "white noise" because I have never known a time without it) with heartbeat too and I can't stand loud places/noises, urinary stress incontinence, constant sleep disturbances due to pain, clumsiness (I can trip over the pattern in the linoleum!), hiccups/burp-ups, IBS,... ok, that is a lot, and there are more..., but you get the point. (I also have scoliosis, kyphosis and osteoarthritis (spine and otherwise.)
I had Physical Therapy to try and relieve the neck/trapezius/shoulder problems and after about 5 days, it more or less "seized up" my entire back and made me feel as if my head was collapsing into my shoulders.
I have had surgeries to: suspend my bladder, carpal tunnel release, anterior discectomy w/fusion C5-6, shoulder repair... VERY little relief... only with C5-6 surgery. It relieved the CONSTANT burnging/tingling in my arm, but it still comes and goes with almost any usage.
I have been on a variety of different meds, but if they don't work after 30 days, I won't keep taking them as I don't want all of this **** in my body. The only SOMEWHAT effective things I've been taking are: Vicodin, Zanaflex, and Visteril (for the HAs).
I have had 30+ trigger point injections with no effect (except I felt like I was caught by a swarm of bees!). I have had about 24 spine injections done by a pain specialist (anesthesiologist) (these were done some as diagnostic procedures and some for hope of relief.)
Ok, this is a lot of information on Lori! LOL! I hope this tells you more.
Let me know if you need more 411!
Thanks and Blessings!
I forgot to mention one other thing that could be important. About 8 years ago, I had approximately 25-30 tumors removed from my lower back/buttocks area. I have them also in my thighs, calves and arms... and even after surgery, still in my lower back and buttocks.
These were described to me as being fibroid encapsulated fatty tumors, benign, that had blood vessels (which was why they were becoming inflamed and what makes them hurt so much - like bad bruises deep in the tissue at their best).
No one knows why I have them or what causes them to become inflamed... the only thing that was really said was by the surgeon. He said that he could continue to remove them, but they were probably just going to come back anyway... and he was right. They did. And that was the most painful surgery I have ever been through, as he made four incisions and tunneled all through my glutes!
You and I suffer from the same things.. Please let me know how your appt went. I had 2 lumps removed from my neck a couple of months ago. Fatty cysts.. LOL how strange.
I will check back with you later... Dawn
My doctor's appointment yesterday went as best as I could have hoped. Dr. H was my pcp 10 years ago. He has MS and had me tested for the same. He is very personably knowledgable of neurpathic pain and other related problems... so when I thought of him, I knew that is where I had to return.
Dr. H has ordered the MRI's that will be important for my getting evaluated by a Chiari doc. I have my brain MRI (sitting, with and without contrast) on Thursday. The cranio-cervical junction, cervical spine and thoracic spine with be done next Wednesday. (Obviously the thoracic spine is being done for the cavernomas and not the Chiari.)
I am really intrigued now that I know someone else is dealing with all of the things I'm dealing with. Maybe there truly is a definite correlation. I will share this fact with my doc. Did they offer up any reason as to why these developed? Mine have been there for a long time, but all of a sudden "flared up" and then seemed to multiply. Does that sound familiar?
i am interested in where you are getting an MRI sitting? There are not many of those machines around and that was my question when my cine (q flow) came back good. how do you know what my flow is like when i am upright. of coarse i got no response.
No one could tell me where the cavernoma came from although I had extensive radiation treatment for hodgkins disease 20 years ago and i have read that it is possible the radiation could have caused it. Other speculation is you are born with it. These things can bleed at anytime. They are like a time bomb waiting to go off. They are so rare in the cord that not a lot of research has been done so no one can say too much about what they will do. I started having problems with my leg and the mri showed it oozing and swelling my spinal cord so there was no other choice but to have it removed. I was in surgery 2 days later. Waiting could have caused me paralysis.
When they bleed they attach and grow. That is the bad part about it. I have had mri's on my spine and brain and they didn't find anymore of the them so I am lucky in that respect. My MRI after surgery looks good and the dr.s are confident they got it all. if 1 small berry is left in there it can multiply too.
Where are you located? I am in upstate ny about an hour and a half outside buffalo.
i don't come on this site too much anymore. I am going to private message you my home email address. If you don't mind chatting with me that way, i will get your message quicker as i check that more frequently.
Did Dr H speak to you at all about where the cavernomas are located and if they are inside the cord or outside? Where they are located makes all the difference. Also how big is your Chiari and what did he have to say about that. you really need to start looking for a surgeon who can take care of these for you. If you need some help I could ask about dr.'s in your area. the SCTA website i mentioned has a lot of very knowledgeable people on it.
I am going to one of the hospitals locally. Out of all of our hospitals and imaging locations, there is only one machine like this! And I live in the Indianapolis, IN area... there are several very large hospitals! Funny thing is that the one that has it is connected to a larger hospital, but itself is relatively small in comparison.
They aren't doing a CINE yet. They are waiting to see what comes back with these. In fact, I may leave the CINE for the specialists....? I guess it depends on how long it takes to get into them.
I don't know if the Cavernomas are inside or outside. Since they were old MRIs and the purpose for our visit was for us to talk about new ones, we really didn't discuss much about the old stuff, except for that I pointed out the Chiari and the Cavernomas. He honestly sat there, made notes, shook his head in agreement, and listened... for an hour and 20 minutes! He did speak some, but usually only when I asked him questions. I don't know why I didn't go back to him a LOOOOOONG time ago!
Tomorrows MRI will answer the question of how big the Chiari is now. In the 1999 MRI they indicated 5-6mm, but that was also lying down...??? (Of course I won't have the report tomorrow, but probably within the week.) As for the Cavernomas, I have that MRI next Wednesday. We'll have to see if they are larger or what. I don't honestly know what to expect from them...?
As far as surgeons go, I have already contact Dr. Batzdorf at UCLA. I know he isn't doing surgery himself anymore, but that he has (at least) two other surgeons who he has trained and who he consults with. I have asked around about several docs and I was most impressed with the feedback about him. All was positive, until just the other day I read someones post that was not positive, but it was also a surgery that took place almost 20 years ago, so....
My sister lives in the LA area and so I would have the family support and a place to stay once I'm released from the hospital. I'm sure there will be fairly extensive follow-up once I'm released, and (God forbid) if there are any complications and follow-up surgeries like I have heard about, I will be right there for him to deal with it. There is only one doc in Indy and he is not a specialist with Chiari, he has just treated it. The closest places to me are in Milwaukee, WI and Cleveland, OH where I don't really have anyone. (I have a cousin closer to Milwaukee, but it just wouldn't work out as good there as being with my sister. Also, I have heard some really negative things about the doc there.... don't need that!)
Thanks again for your support! It's much appreciated!
I am glad you like the dr. and he listens to you. That is very important. When do you see him again?
I wish you luck on the MRI's. I don't understand why they are doing them on 2 different days. The dye will already be injected at least I hope they ordered them with contrast. That would be the only way to see the cavernomas really well. Make sure it is with contrast.
UCLA is a great place. I hear good things about them and hopefully the doctors out there can tell what symptoms are caused from the chiari and what is caused from the cavernoas as a lot of the symptoms are the same. You may end up with surgery for both or maybe just surgery on one. It just depends on the extent of the chiari. If the cavernomas are inside the cord it is important that they be removed as this may be the cause of your problems. There are some really good doctors at the Cleveland Clinic if you feel you need a second opinion.
Please keep me updated and I am glad that you have family support as well.
I will be praying you get some good answers and your testing goes well...
They are doing them on different days because there is no way I could sit for that long. I am not even sure if I can sit - still - long enough for one! My back is really a problem!
They are doing them with AND without contrast, actualy. Dr. Batzdorf asked for his to be without contrast.
I am hoping that they don't put the contrast into the spine! I had a shoulder MRI done and they injected it into my shoulder. I don't want anymore things stuck into my spine!
Well, off I go to get ready! Thank you for the moral support and prayers!
As I sat here and read the threads between you and Dawn I felt relief for the first time in 4 years. I am on the verge of tears reading that I am not alone and that you two people are experiencing or have experienced so MANY of the same things that I have been!
I know this is a super old posting and don't know if the thread will even contact you but I would love to continue this research and see how you are doing today.
I am a Chiari decomp survivor with my 8th "internal"hemangioma just removed and am desperately looking for information to bring to my doctor's who are baffled like myself.
Thank you for sharing this !!!
Hi and welcome to the Chiari forum.
U can contact laratterman by sending her a PM (private message) that will generate a e-mail so she knows someone is trying to make contact....I will also try to reach her too.
Hi and Welcome!
I'm sorry I have been away for so long...
Are your hemangiomas in your brain or on your spine? Mine are on my spine and they won't do surgery on mine... I can't imagine having 8 removed! I have three. I was originally told that (like my Chiari) they were "benign findings that would never cause me any problems". Well, later on, when my Chiari was actually looked into by a Chiari Specialist, he also shared with me that these hemangiomas could actually cause me to become paralyzed should they ever be caused to "rupture". WOW! (Luckily they didn't rupture when I was in the auto accident that was the driving force for all of the MRIs where they discovered both the Chiari and the hemangiomas!)
So, with a long story short... I don't really know what the "symptoms" of these hemangiomas are... or if there are any... or if all of the symptoms I have are related to Chiari and its related disorders. I have chronic back pain, but I know my upper back is related to something else and my extreme lower back pain are due to my L-5 and S-1 vertebra being offset from one another causing the disc to herniate. The hemangiomas that I have are all thoracic. I have only recently been experiencing pain above my waist, but I have kidney issues and I think what I'm dealing with is stones moving... OUCH!
I'm sorry I am not a whole lot of help with regard to these. :( I actually think you could school ME on them with your experiences! LOL!!!
Blessings to you!!!