Intramedullary Hemangioblastomas

[Trublue]

My Operation
I finally got up the nerve to watch.
this. Example of the procedure that I had October 2013. Some parts are Graphic.
Not for the faint of heart.
The back part of my vertebrae was removed to access my spinal cord and not returned.
posterior spinal resection of
intramedullary cervical tumor c-2 c-3. Hemangioblastoma WHO grade I.mn


Spinal tumors occur with an incidence of 1.1 case per 100,000 persons.

Intramedullary spinal tumors comprise approximately 2-4% of all CNS neoplasms.

The most common kinds of intramedullary tumors are ependymomas, astrocytomas, and hemangioblastomas.




youtu.be/HoWWRQfWYTo



Because they are infiltrative tumors, complete surgical removal without damage to functional tissue is usually not possible.

Exceptions to this general rule may include some pilocytic astrocytomas of the spinal cord (WHO grade I) that are more common in children.

However, this approach carries the risk of the development of neurological deficits that are likely not recoverable and the uncertainty that comes with undetermined diagnosis.

Severity of preoperative neurologic deficit

Neurologic morbidity is associated with preoperative functional status. Individuals with mild-to-moderate deficits may improve following surgical removal, while those with advanced neurologic compromise generally have no worthwhile improvement. This emphasizes the need for early intervention and close follow-up.[

[tennan66]

Hi Everyone,

Trublue - thank you for posting and sharing all the info. I don't know when I will get the nerve to watch it, it must have been horrifying for you to watch it though. I hope you are doing well.

I haven't had surgery yet. The surgeons think it's better for me to wait until I am more neurologically deficit. They feel they can't make me better than I am fictionally now. I appreciate this forum so much. I haven't found anywhere else to speak to other patients. I will continue to update and check in. Thank you all for sharing your experiences, I hope you all continue to recover.

[Trublue]

I believe the sooner the better as far as surgery. My lesion actually grew during the months they looked for a primary tumor. Since I was a smoker for 20 years. They had to check me for every cancer they could think of. By the time I went in for surgery, I was on 30 pills a day and could not dress. If I knew then what I know now!
Also, try to get at least 30 days of 24 hour-rehab. I believe if I would have had the help immediately after discharge I would of been much better off.
3 days post op nurse wrote.
Current Mobility:10/26/13
Rolling: moderate assist x 2
Gait: deferred due to pain
Key: Min = <25%; Mod = 25-50%; Max = 50-75%; Dep = >75% therapist assistance
Balance:-

Back to Prior level of function: no.
Discharge Recommendations: skilled nursing facility vs. Acute rehab
Equipment Recommendations: defer
Additional Recommendations: 24 Hour Care
Teaching /Education: Role of physical therapy, safety, mobility
Mode of transportation at current level of function: gurney van
3 days later the pencil pushers in Adminastration released me to go home with 1 visit from an occupational therapist and 2 in home PT visits.
The PT vacuumed for me because after 5 minutes I could not endure any more therapy for that visit.


Patients are often diagnosed only after the development of neurologic signs and symptoms that may occur later in the course of the disease. Early diagnosis is important, however, because surgical removal for most tumors is curative, and surgical results are optimized when tumors are smaller. Also, neurological deficits resulting from intramedullary spinal cord tumors are seldom reversible. As such, functional outcomes after surgery are closely tied to the patient's preoperative neurologic condition.

[JG]

I was diagnosed a year ago with a cystic HB on my cerebellum also squashing myou brainstem. It took me 4 years to convince GP I was ill. I lost feeling/pins and needles in left flank then hand and finally leg. Tumour was removed and i started to recover but I contracted Bacterial Meningitis and Osteomyelitis. Had to have 2 further surgery to remove infected bone flap and wash out. Since then progress is slow and painful. Vertigo and dizziness /balance problems. Still painful left hand and weaker left side. I'm devastated at what's happened to me. I expected to be better but am less able than before although tumour has gone (i hope)

[krolay]

Hey everyone,

I hope it's not a problem that I post my story.
Well, firstly, I don't live in the USA or the UK, I am Hungarian 19-year-old boy.

In Hungary, we attend high school or secondary grammar school for four years, the seniors leave school at the beginning of May. We take written matura exams in May, oral exams in June. Well, it actually does not matter, but due to my age, I wanted to mention.

When I was senior in high school, and at the end of March, I tilted my neck on a lesson, and got scared because I felt a strange sensation in my right sole. I thought I was tired because I was preparing to my matura exams and hoped that it would cease after I get a nice sleep. Well, it didn't. Later, when I tilted my neck, I started to feel it in my lower abdomen. I was frightened and wondered what could that be, and I felt devastated that this sensation might be a symptom of MS. But I kept hoping that this sensation is due to stress, because I wanted to attend a medical university, and I decided it later than others.

After the matura exams, I got accepted by a med school and I was euphoric but I kept feeling that symptom. I informed my GP about that, she was trying to calm me that this sensation could be caused by stress but sent me to a neurologist. He wasn't sure what the reason might have been, he was almost sure that it wasn't MS but I was permormed an MRI scan. Well, 3 hemangioblastomas were found in my spinal cord. C0, C6 and Th4.

In September, I had a surgery. They removed the hemangioblastoma near the 4th thoracic vertebra. After I woke up, I felt miserable. Below the heights of my armpits, I lost the sensation. I couldn't feel anything. I couldn't coordinate my legs properly. When I touched my legs, it was like they weren't my legs! I felt miserable and devastated and terribly scared. I stayed in hospital for 11 days, but the sensation RETURNED in about 5 days! I was so happy. On my first post-operation day, the doctor said I would walk differently. Thank God, I don't!

On Valentine's day, unlike others, I wasn't in a romantic situation. I had a second surgery, they removed the hemangioblastoma in the craniocervical transition. I woke up in the ICU (when I was first operated, I wasn't observed in the ICU), but I felt actually great despite the pain. No sensation was lost, I could move every limb. Obviously, I couldn't get up on the first post-op day due to the loss of the cerebrospinal fluid, but on the second day, I got up, walked perfectly and the urinary catheter was removed. I spent the weekend in the hospital, and I could return home later.

But I still have a hemangioblastioma in my neck. The doctor said the removal isn't necessary if it won't grow. I'm terribly hopeful. I don't want another surgery. I want to live my life peacefully and start the university in September. I would like to have a long, healthy life without concerns.

What do you think? Is it possible?

(I hope it's not a problem that I posted into this thread despite the fact that I'm Hungarian. I couldn't find Hungarian patients on the Internet. What is actually strange to me that some acquaintances of mine and my parents had hemangioblastomas despite the fact that it is said to be rarely. A retired woman who lives next door has a daughter I don't know and never met, I think she lives abroad, she had a hemangioblastoma in her brain. The daughter of my father's colleague had also one in her brain. I had a classmate in high school whose cousin that lives abroad had three hemangioblastomas in his cerebellum. He travelled to Hungary, and his neurosurgeon removed only one two years ago. So, he has two hemangioblastomas in his cerebellum and they haven't grown so far. Also, I know a doctor who told me that she has a colleague that had a hemangioblastoma-removal surgery more than 10 years ago and the doctors couldn't remove all of it from her neck, and she lives her life happily today.)

[susan]

Have they tested you for Von Hippel Lindau?