Intramedullary Hemangioblastomas

[tguzik]

Hey Group!

It's been a long time since I have been on the forums! The group sure has grown. Kinda sad though cuz that means more folks have had to deal with or are dealing with a spinal cord tumor. But then again, the very existence of this site provides for great hope and valuable resource's to help those deal with the issues and challenges of having a SCT.

I'll try to login to the boards more frequently. They always were and always will be a place to go for information and sometimes, just talking or venting, whatever's needed.

Be healthy!!

Tom,

[janos]

Hi all,
I've a Hemangioblastoma, and have been told that they are slow growing. Does anyone know exactly what that means? From my MRIs, it doesn't look slow enough to me . It has increased in size by about 25 percent in 10 months. Does anyone know what the expected growth rate is, or can you let me know your growth rate? As last year after my surgury, i got the impression that i wouldn't need another surgury for many years, if at all. And now, 10 months later, it seems different.
I'm seeing my consultant next month for the first time since January, and i will ask him these questions, but he usually doesn't supply concrete answers, he keeps it vague, and assures me that everyone is different.
Tnks,
Jan

[gcgurl2008]

Hello. I haven't been on in a long time, but when I saw a hemangio, I had to respond. They are so few and far between on here. I had mine removed in 2003. Hemangioblastoma,T6 and T7 with cyst above and below and laminectomy. I just got my latest yearly MRI and it is unchanged, so now I only have to get one every other as long as my deficits don't change. I have topical numbness from my left breast to my toes...toes being the worst. I also have numb butt, of course, tingling, "zaps"...the usual on my left side. Right side is okay, so far. I only have one toe that is a tiny bit painful. Left leg is weaker. But all in all, I'm hanging in there, and feel pretty fortunate.

I had my surgery at Allegheny General in Pittsburgh, Pa. I had a spinal fluid leak afterward in which I had to be hospitalized again for 5 days. Then, I lost the ability to sleep, probably from swelling in my brain stem. Another two hospitalizations. It was quite a ride. It took a couple years to feel somewhat "normal" again.

I understand they are slow growing. I was fortunate that they got all of mine. It was a 5.5 hour surgery, and as you see, somewhat complicated of a recovery. I have no idea what the future holds. I just take it one day at a time.

I hope things work out well for those of you that have had this tumor. All of these tumors. They affect your life, for sure.

Lisa

[susan]

I too had a hemangioblastoma. Mine was at C2. Very small, at 9mm, but with one huge cyst and one small cyst. The large one was compressing my spinal cord to about 10% of the size it should have been occupying. I had cord edema to T1-2.
The MRI pictures were truly frightening. I couldn't believe that was inside of me and I was walking and functioning the way I was.
The symptom that drove me to ask for diagnostic tests was numbness of my right thumb and index finger that started in 2006. In 2007, it was spreading to my other fingers and I was dropping things I was holding in my right hand.
Looking back now, I had more symptoms, but they were such that I never put things together to see them as pointing to the same cause. I had right sided neck pain for about a year (thought it was stress). I had low back pain for about 2 years (thought it was my car seat). I occasionally had L'Hermitte's sign for at least 10-15 years. This is an electric jolt down your spine when your neck is flexed. (I was no explanation for for this one, I just ignored it).
I had surgery at a medical center that has one of the busiest neurosurgery clinics in North America. I was the only hemangioblastoma of the spine for the past academic year.
I am doing very well post-op. Most of my pain, numbness and weakness is contained to my the right side of my head, neck, chest, back, arm and hand. I also have mild balance issues and some change in bladder sensation.
I think my symptoms are getting better, although it is slow. I continue to do exercises to maintain range of motion and build my muscles back up.
I am very grateful that I found my tumor before it caused devastating damage, which is where it was headed. I am also grateful to my wonderful surgeon, Dr David Okonkwo.
All in all, things are good. I get down at times, but I keep trying to focus on the positive.

[Lauraine]

I had a my tumor removed 2 months after having my daughter in november of 2004. It went undiagnosed for 9 months because of my pregnancy. My symptoms were numbness and extreme pain extending from my neck to my back. By the time I had my surgery, I was numb dowm ny torso. My tumor was located at c6 and the cystic component reached from c4 down to t4.
It was a five hour surgery, but I was so happy to have a diagnosis-and a cure. I went for many follow up MRI's and while my spinal cord is permanantly expanded resulting in permanant nerve damage, there was no regrowth. Despite the pain of recovery, I feel very lucky. I found the right surgeon-dr. Mark Mclaughlin. I am grateful. Good luck to everyone. It's not the end of the world, although it may feel that way. There is hope!

[jtsky7]

I just found this board. So few posts but another from Pittsburgh. I wanted to share my story. I had a hemangioblastoma in 1993. I was 27 at the time. Mine went from T-2 to C-2. So it was around 8 inches with another 2 inch tumor attached to that. I was told I did not have much time to live if they didn't catch it then. Even after they removed it, I was told I may not walk again. It was getting very close to snapping some nerves in my brain.

I remember having some symptoms starting around when I was 12-13 or so. Even when I went to the Dr.s for a couple symptoms, the prior 2 years before they actually found the cause, they kept writing it off to pulled muscle of something relating to my lifting weights. Even the night I was rushed to the hospital, I was going to be sent home, they figured it was maybe a kidney stone becuase I had trauma right after peeing. It was 2:30 am and my mother woudn't let them send me home. I really thought I was going to die at that time and when my brother called 911.

That day I had neurosurgeon come in and he pushed my head back and I screamed, he then sent me out for MRI. I was then moved to Mercy Hospital, and had surgery 3 days later.

Because it was completely filling my spinal cavity, with all of the tests before my surgery they didn't realize the extent of the tumor bcause it wouldn't show up in the scans. Had it removed at Mercy Hospital in Pittsburgh. Dr. Altschuler was the surgeon. Because my tumor was so rare, my surgery was video taped and used to train others. The surgery was over 10 hours.

I am so blessed to get the recovery I have. When other Dr.'s were shaking my hand telling me it was a miracle I was able to recover as I had, I know the Good Lord truely blessed me.

As a result of the surgery, I suffered paralysis from my chest down. Thankfully regained most of my mobility back. But to this day still deal with horrible nerve pains and spasticity, and lack of sensation from chest down and loss of proprieception. Haven't found any meds which provide much support or that don't cause terrible side effects. So I am not currently on anything. I am hoping at some point with all of the discoveries out there that I can get relief.

This week I went to my neurosurgeon because I was experiencing some different things, but thankfully nothing has reoccured tumor wise. I asked him how many people he has seen with this type of tumor and he said maybe 3 or 4 in his 20 years. So I started doing more research on my type of tumor and that is how I found this board. Glad that this site is not heavily populated.

[dj]

Hi there

Am I the first posting from the United Kingdom? I was diagnosed with a suspected 3cm hemangioblastoma between C3 and C5 in early October 2011 and had it removed last week. Today I had the results of the biopsy confirmed.

Symptoms began at the end of last year with pain in my left elbow radiating down my forearm. This soon led to painful tingling and then loss of sensation in my left hand, focussed on the left thumb and index finger. I consulted my doctor and was initially treated for carpal tunnel syndrome but symptoms began spreading across the other fingers and I also began to notice a pulsating sensation down my entire left side after exercise. I returned to my doctor as the symptoms and pain in my arm were getting worse and so she referred me for a MRI scan which located the tumour.

Two months later I am free of the tumour and am recovering. Immediately post surgery I experienced loss of sensation in my whole left side from the chest down with increased pain in my left elbow and fingers, but the sensation is beginning to return slowly and the pain is also slowly subsiding. I got up to walk the day after surgery and can now walk almost normally although my left leg still feels a bit weak I am told that this will recover. I have also noticed that motor function is returning to my fingers although my left thumb still feels pretty tight at the moment. Losing my hand was a disaster as I am a musician but I am determined to get it back.

Thank you for your stories. This site has been a great source of comfort to me while awaiting treatment and helped me put intelligent questions to my wonderful neuro-surgeon, Dr Babak Arvin of Queens Hospital, Romford, England. He said it was the first he had seen in 5 years and that he had only seen 4 previous ones in his whole career.

[kansasmom]

Hi dj, it sounds like you are doing really well. I hope you get everything back in terms of sensation and strength. There are others from the UK on here. Most post in the General forum - that is where you'll get the most responses.

[anne08]

hi-. I recently had a hemangioblastoma at my brainstem in my spinal chord removed I had a cyst-pretty big with a pea sized tumor attached, the doctor removed all. Had a csf leak and had lumbar drain. After removed sent home only to return 2 days later and had another surgery to repair my csf leaks. This had traumatized me not only because of what happened but because of the treatment I received that was very unprofessional, my husband is also traumatized. Now. I have been home for 3 1/2 weeks and I noticed yesterday that when I get up sometimes I feel a pressure/throbbing for a few seconds, not always, just took a walk with no problem. I am riddled with anxiety due to all of this so it may be that. Has anyone had this occur. I am a middle aged woman.

[grials]

I had what appears to be a successful intramedullary hemangioblastoma resection from my C7 spine on August 23, 2012. Dr. Sujit Prabhu at the MD Anderson Cancer Hospital Brain and Spinal Center in Houston, Texas lead the surgery. I posted his information on this forum.

I was on my feet the next day and discharged from the hospital within six days. Currently, I have some topical numbness on the left side of my body that I hope will dissipate in time; it extends from my chest to my toes. However, it does not impact my mobility.

How did I find it? Well, I am a cyclist and noticed a vibration in my knee when I rotated my neck down to retrieve my water bottle from the bottom tube of my bike. I had an MRI within 3 weeks and my wonderful doctor ordered it with contrast; otherwise the 6mm lesion would not have been discovered.
I immediately began research and was alarmed and scared about this extremely rare disorder. I chose MD Anderson in Houston Texas after consulting with the neurosurgery team and the Brain and Spinal Center.

I am now on the slow road to recovery. I have found that getting up each day and completing my minor physical therapy exercises while allowing the wound to heal is beneficial. The muscles are tight but improving. I have also been completely off of pain medications for over 48 hours. My goal is to know where the pain comes from and to manage it with stretching and muscle relaxers. Otherwise, it will be hard for me to determine whether the topical numbness is improving. Those narcotics just make me too loopy. Don't get me wrong, they belong in a regimen immediately post op.

I hope this helps, and good luck to each of you. I will update as the journey continues.