Is there a Doctor that can help me?

[tkh10145]

I have a spinal hemangioma at T2 & T3. I have been told by many doctors that doing surgery could paralize me. I am only 27 years old and I am already disabled. I desperatly need to be better for myself and my children. I need to know if there is a Doctor anywhere that can help me. I am willing to travel as far as I need to.  I am very scared that my life will be cut short because of this. My doctors tell me that it is very aggresive (aggressive) and I have had serveral procedures to correct this and the mass only gets worse. I want it removed all together if possible. I know there is someone who can help me. I have just not found them yet so please if anyone reading this knows of anyone who may be able to help please let me know. Thank you, Tina

[CCF-Neuro-M.D.-PW]

I cannot give you accurate information on your specific case, but the Spine Institute at the Cleveland Clinic could give you an accurate assessment of what can be done.

In my presonal experience, vertebral body hemangiomas are fairly benign and usually an incidental finding on MRI, but if the hemangioma is truly on the spinal cord itself it is more complicated. Finding a surgeon who has experience in dealing with this kind of vascular surgery is the most important thing.

Good luck

[mike1105]

tina, before the neurologist can respond, it would be my advice to gather all of your test results and reports, along with any other records you have, and call either the Cleveland Clinic (in Cleveland) or he Mayo Clinic (in Minnesota). I know with the Mayo you can go there as a "walk in"  ( I did) and basically wait for a cancellation or an opening with an internist who will get the ball rolling. From there, all appropriate tests and referrals to specialists will take place, and all of the doctors are in the same building. You are actually given a schedule. It works very very well and efficiently. You may be there for a while (weeks perhaps-- as I understand it they have become a bit more research oriented since I was there 2 1/2 years ago and therefore there are less patient appts available) before you are fully worked up and have answers but you can stay in a hotel across the street. If I were you I'd call both clinics and inquire. You'll get nowhere slowly with referrals around town (wherever you live) as you are probably figuring out. You need to be in a clinic like Mayo or Cleveland.   Best of luck.

[arpowers]

In my opinion the best way to find doctors who will treat these types of problems is by looking at who is doing the research.  Go to www.pubmed.org and search for your particular problem (i.e. Hemangioma) and you will see many research articles.  The doctors conducting these studies are typically the world foremost experts on the subject and they will be the best suited to help you with your problem.

Here is an example...

[Kyphoplasty for the treatment of painful vertebral hemangioma]
Noez S, Collignon L, Bex V, Sacre F, Crielaard JM.
Rev Med Liege. 2006 Feb;61(2):91-6. French.
PMID: 16566116 [PubMed - indexed for MEDLINE]

[lucy lou]

Is there such a condition as a straight thoracic? I can't seem to find anything on it? (Only curved thoracics). I am 32 and have a very straight back. It is giving me alot of pain and muscle inbalances and general bad stability. I am seeing a chiroptractor, but he has never seen such a sunken thoracic and finds it difficult to free, because there is nothing to hold on to. I have slight scolosis and my neck and thoracic are very straight. I over-use my muscles and my shoulder blades which cause much pain. I have had this problem since a teenageer but the last few years are getting worse. My mum also has a straight back. I also have pain running down my arms and a very slow digestion & bowel problem, which last year nearly cost me my life and very bad circulation, blood pooling in legs and rushing noises behind my head. I would like to get help to try to free my spine to see if this will stop all my other problems? Thank you. Lucy (UK)

[Barb1957]

I have pain in my entire upper torso. The pain includes, burning so bad I cannot stand my clothes on me, tingling with the burning like a million needles sticking me, numbness ( I know that sounds strange with all the pain, but it is there) and a banding feeling that is the same as a huge blood pressure cuff, so bad that it tkes my breath away at times. This pain is 24/7 and is over one year old. I am out of my mind with it. The Dr. has ran several tests, the last being and MRI with Dye. It showed at T1, T3, T7 and T8..Quoting the report "There are multiple regions of increased signal involving..the areas I mentioned, and are thought to be related to the Hemangiomas found in these areas. MRI appears to be normal" Plese help me, I cannot take this pain any longer. What are these hemangiomas and could they cause this pain. Dr. says MRI is normal. I think he read the Impression: area that is the comment of the Radiologist. I need an answer SO bad. This pain is taking my life away as it continues to get worse. I am already spending most of my days in bed and that is just not like me. It is also causing my Blood Pressure to be high even on my medications. I have been DX with: Secondary Fibromyalgia, Failed back Surgery Syndrome (L4 to S1 fusion), Myfasical pain syndrome, OsteoArthritis, Restless Leg Syndrome, Hypertension, IBS and most recently,chronic migranes. 6 Months ago I had a laminetomy w/fusion, bone graft and hardware at the C6-C7 level. It was a huge herniated disc. The other DX's were made years ago. I am on a mulitude of medications, none of them touch this pain. My Dr. wants to keep trying me on various meds but I hate taking Anti Seizure medications if I do not have to. He says these meds are the ones to help with this pain. I want an answer as to why the pain is there, not more durgs!! I have had, MRI's, 3 prior to the last one with dye. The Dr. says the same, all are okay. What is wrong with me and are these Hemangiomas to blame at all?? I know the pain is real and I know it is taking my life away at a very fast rate. I just do not see my Dr. showing the concern that I feel. I cannot afford a second opinion as I am on Medicare and they do not want to pay for one.Thank you so much!!

[nasty88]

A related discussion, artery was started.