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Post by hattenn on Apr 5, 2011 18:45:21 GMT -6
Hello everyone,
I'm 20 years old and since two years I've been experiencing some loss of sensation on my right leg, and they found a syrinx in the thoracic part of my spine. For two years, it was thought that my problems were caused by the syrinx, but the last time I went to see my neurosurgeon, he asked me to get a cervical MRI. After that, he diagnosed me with spinal cavernoma at C5-6 and he said that I should get a surgery. But he also said that he never did this surgery before in his life. So, I've found the best doctor that I could find in my city, who was also one of the best neurosurgeons in my country, and saw him today. I live in Turkey. This is something serious, and I want to find the best doctor that I can find. Can anyone suggest me some doctors for my situation anywhere around the world? And also I'd appreciate if people who had a spinal cavernoma can share his/her experiences with me. Thank you in advance.
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Post by Lucky on Apr 24, 2011 0:51:01 GMT -6
hattenn,
I suggest looking at UCSF in San Francisco, California USA. Dr. Lawton is the surgeon you want to see. Sept 2010 he remove a Cav malformation from c6-t1 I found earlier in the year. He has great experience in this area. My surgery was a success. However, side effects are still with me months later like numb feet. It gets better each month. I can now jog, cycle, ect which was not the case 60 days after surgery.
Dr. Lawton and UCSF medical center team is one the best from everything i researched.
Good luck!
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Post by hattenn on May 3, 2011 16:56:17 GMT -6
Hello Lucky, thanks for your reply. I've found a good doctor close to my city in Turkey and I'll get the surgery two days later. I'd be really happy if we could talk about post operation, how you felt after the operation, what you could do and what you couldn't, what to do and such things. If you have time I'd be grateful to hear your experiences on such things.
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Post by rozmet on Jul 20, 2011 10:37:36 GMT -6
Dr. Robert Spetzler, Barrow Neurological Institute Phoenix Arizona. Operated on my cavernous malformation between C2 and C3. He's the best. Ask any neurosurgeon.
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Niki
New Member
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Post by Niki on Jul 31, 2011 13:04:27 GMT -6
Hello Hattenn,
Nasýlsýnýz? Hope the operation was branded a success and you've recovered with good health.
I've diagnosed the cavermous malformation (angioma) at C2/C3 5 years ago and no action taking until the recent diagnosed again that the angioma had increased of sized. I had too much of on pain killer or injection these 2 weeks. Its hard to find neurosurgeon who experience surgical at Cervical spine. My doctor who was also one of the best neurosurgeons in my country but he is good in brain surgical. Does this matter? I'd appreciate if you or people who had a spinal cavernoma can share his/her experiences with me. Thanks in advance.
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Post by Lady of Faith on Oct 8, 2011 10:13:12 GMT -6
I am sorry you are having to go through this but glad that you found us.
Yes there is a huge difference between a brain surgeon and a spinal cord surgeon. PLEASE keep looking until you find a neurosurgeon who specializes in spinal cord surgery. Also, post in the general forum and your questions and concerns will be seen by many more people.
Keep your chin up!
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Post by lindaflower on Oct 25, 2011 20:01:28 GMT -6
I am sorry you are having to go through this but glad that you found us. Yes there is a huge difference between a brain surgeon and a spinal cord surgeon. PLEASE keep looking until you find a neurosurgeon who specializes in spinal cord surgery. Also, post in the general forum and your questions and concerns will be seen by many more people. Keep your chin up! Hi, I am very new to this oard having spent the last 34 years with MS I was told, in fact with debilitating, worsening MS which had taken me out of employment etc. Finally the MS Clinic I attended had an MRI done which revealed a spinal tumor and no other lesions. They had long known of the one lesion but did not know that it was a cavernous hemangioma at C2-3 which is the only "lesion"......hence I don't have MS. Argh thanks for opening up this new venue to me. I look forward to writing for more info from new patients. Lindaflower |
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Post by Suna on Jan 15, 2012 23:15:51 GMT -6
Hey everyone!
It all began on June 29th 2011...I had a sore neck for 2 days with increasing pain as time went by. I woke up in the middle of the night to go to the washroom and found my coordination was "off". My husband, my 4 year old twins and I went to the hospital, which is an hour away to the closest town. As I waited to be seen by a doctor, I became completetly paralized all four limbs within 5 hours. Then I went into respitory distress. Following an MRI, I was diagnosed with a cavernoma at the C3-C4 level.
We all understand too well the rarity of cervical cavernomas. But in my case, another rarity is added to the equation-rupture of the cavernoma thus putting immediate pressure on the spinal cord. Four days later, surgery finally took place, once the swelling went down with the Methylprednisolone, and complete removal of the cavernoma was successful.
I have been in a rehabilitation center since July 25th 2011 and still ongoing. I have regained almost full function of my left arm and gross motor function in my left leg. I am now working on muscle strengthening in my right leg, which is still pretty weak. The most affected is my right arm.
I have regained good lung function and trunk control. However, I am left with repercussions of a neurogenic bladder and bowel.
Overall, I have regained alot, as I am pretty independant in my daily activities of living. I believe I owe it all to my neurosurgeon Dr. Micheal Tymianski specializing in the treatment of patients with cerebrovascular disorders including cavernous malformations, at the Toronto Western Hospital (located inToronto, Canada).
I wish everyone the best in your ongoing care and/or upcoming surgeries.
Suna
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Post by Suna on Jan 15, 2012 23:21:23 GMT -6
I forgot to mention I'm 33 years old...
Suna ;D
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Post by dadof2 on Jan 24, 2012 4:05:04 GMT -6
Wow Suna that is a crazy story....I hope things get better for you, along with a complete recovery eventually. I was diagnosed with a cavernous hemangioma and I am so worried that something similar what happened to you will happen to me...I am only 29 and have two kids also....Stay strong I will pray for you. Did you have any pain/symptoms before this happened?
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