Intramedullary Hemangioblastomas

[Janelopi]

Hi there:

Thank you so much for posting this. I'm glad to see that you are so optimistic from being through this. I just found out 9 days that I have a hemangioblastoma in the same place. It's 1 cm x 8 mm. I am being operated on the day after tomorrow and am hopeful after reading your post.

I too am an active person and I hope that I will be able to recover as well as you.

The neurosurgeon mentioned that I will have some issue with my feet as they have to cut through some receptors which feet into my brain. I am wondering if you had the same issue or concern and if you were able to get through it effectively.

Any information that you provide is useful.

Thanks again!

[grials]

Janelopi,

I hope you are recovering well as you read this reply. It is interesting to me how your neurosurgeon (NS) could know preop that receptors will be cut. The risks were explained to me, but my NS said that he would not know until he actually started the MRI guided micro-surgery. Where was your surgery performed?

Regarding foot issues, I have minimal numbness beneath the metatarsal heads of my left foot. Some of the numbness results from a completely unrelated condition called predislocation syndrome. Twenty percent of the population have a second toe that is longer than their big toe. The metatarsal head of the long toe supports the majority of the load and can get particularly aggrevated during intense physical activity. I love to cycle, and I have modified the intensity as a result.

I do have some intermittent numbness around the incision that wraps around to the left side of my chest. It occurs mostly during physical activity or long, stressful days at work. I pray that you are doing well and look forward to hearing about how you are progressing. Absent significant deficits, the recovery is not too bad.

[peaceandlove]

To anne08

Even i have a Spinal cord tumor, i just discover a tumor in my brain, at brainstem.Doctor say you need only to observe or we can make a endoscopic CSF diversion.What does that mean i didnt understand.It can be resected with no deficits?i dont know?Am i going to be blind or deaf in futur if tumor grow i dont know?i keep it to god.After i have suffer from SCT now i have loose all hope.I surrender.Any feedback about brain @ tectum midbrain will be appreciated.Thanks

[xtineg]

Hello all, I am so glad I found this site. I had a hemangioblastoma removed on 11/06/12, from where my brain meets spinal cord. My recovery is ongoing. I have had many, many mixed emotions. I realize how lucky I am to be alive and walking. I would like to know, has anyone had their tumor regrow? How long did it take? I was told I would need an MRI every 6 months for a number of years. I was also wondering, did you all go back to work? If you did, what type of job? Is anyone on permanent disability? Thank you for any support and advice you have. I wish you well.

[susan]

I just saw your post.
I had a hemangioblastoma just below my brain at C2. I had MRIs every 6 months for 2 years, then once a year for 3 more. At this point I have been told there is virtually no chance of recurrence.
I went back to work in about 2 months, but couldn't work full days until many months later. I worked 4-6 hours/day. I do sedentary work, computer, phone, meeting with patients.
I am absolutely not on disability, I go the gym, take care of my home. I do have limitations, I am not as able as I was, but I do pretty well.

[tennan66]

Hi Everyone,

I'm really glad I found this group. I have a pea sized tumor with large cyst from C4-C5 being removed october 8th. I've been told I may have some issues at first with my foot placement but have absolutely no idea what else to expect. It sounds like everyone has had some loss of sensation post op that they didn't have before that is slowly coming back to normalcy. I'm curious if anyone is back to work full-time, part-time and how far out from surgery you could do it. My Dr. has told me i'll be up and walking the next day and expects my recovery time to be a month - does that sound realistic to you guys? Also, how was your immediate recovery, like what kind of support should I have in place at home? Any other advice? So sorry to hear everyone's experience and hope you have more good days that bad ones.

[Slip Kid]

I had a solitary hemangioblastoma removed April 17, 2013 from my T12/L1. My symptoms prior to surgery were reduced sensation in my genitals and some difficulty urinating. Post-surgery, I am experiencing moderate pain and weakness in my lower left leg and foot, I have to self-cath, I have to clear my bowels in the shower using my hand, and I have very little sensation in my genitals. Serious pain in my rectal area. I am regaining some small sensations very slowly, but am depressed to the point of feeling suicidal over the idea of not regaining bodily functions. My surgeon has been negative, but other MD's have told me improvement can happen over a few years. I am an athlete, and literally every life goal I have is directly dependent on regaining something close to my normal. I am willing to try anything or any resource that might aid recovery. I am leaking urine and can push out urine until approx 400ml remains in my bladder. I can achieve weak erections and orgasms but have very little sensation. Have not tried male enhancement meds yet. As things are, I don't know how I can return to the professional world or confidently work on my personal life. Very worried and depressed.

[leks]

slip kid, first off get on top of the depression asap!! get your doctor to prescribe some anti depressant, they help in these times.

I can relate to your frustration about the position your in. but things will get better, weather it's by managing your deficits better or recovering to the point where your comfy with your current state.
on a more positive note, you have some sensation coming back!!! and ur feeling some pain in ur rectal area, these could be signs of nerve regeneration, nerves can take years to heal, so give yourself time ;-)

if you ever need to talk or are feeling down, give me a shout, I'd be more than happy to listen.

[samuridude]

Dec 12, 2013 18:33:57 GMT -6 Slip Kid said:

I had a solitary hemangioblastoma removed April 17, 2013 from my T12/L1. My symptoms prior to surgery were reduced sensation in my genitals and some difficulty urinating. Post-surgery, I am experiencing moderate pain and weakness in my lower left leg and foot, I have to self-cath, I have to clear my bowels in the shower using my hand, and I have very little sensation in my genitals. Serious pain in my rectal area. I am regaining some small sensations very slowly, but am depressed to the point of feeling suicidal over the idea of not regaining bodily functions. My surgeon has been negative, but other MD's have told me improvement can happen over a few years. I am an athlete, and literally every life goal I have is directly dependent on regaining something close to my normal. I am willing to try anything or any resource that might aid recovery. I am leaking urine and can push out urine until approx 400ml remains in my bladder. I can achieve weak erections and orgasms but have very little sensation. Have not tried male enhancement meds yet. As things are, I don't know how I can return to the professional world or confidently work on my personal life. Very worried and depressed.

Sorry to hear, we know how you feel. My PT told me that because I "was" a athlete recovery could me more troublesome mentally rather then physically. I needed to get it in my head that I'm not what I was and concentrate on who I am now.
 
I know that is easier said than done by personal experience.  Positive thought will heal you faster, so fight the good fight. 

Good health

[Slip Kid]

Dec 13, 2013 5:04:07 GMT -6 leks said:

slip kid, first off get on top of the depression asap!! get your doctor to prescribe some anti depressant, they help in these times.

I can relate to your frustration about the position your in. but things will get better, weather it's by managing your deficits better or recovering to the point where your comfy with your current state.
on a more positive note, you have some sensation coming back!!! and ur feeling some pain in ur rectal area, these could be signs of nerve regeneration, nerves can take years to heal, so give yourself time ;-)

if you ever need to talk or are feeling down, give me a shout, I'd be more than happy to listen.


Thank You leks!  I am going to seek counseling right after the holidays.  I believe if I can get even one of the issues off my plate, my strength will kick in and I could power through the rest.  Just want so badly to return to a healthy athletic lifestyle and be able to have an intimate personal life.  I've been very displeased with the MD's I've been in front of so far.  None have had anything resembling a positive, "roll up the sleeves" attitude.  I am lucky to have a good PT person.  She just ordered a home E-stim unit to help strengthen my pelvic floor.  Our sessions seem to help a little in that there is at least change.  Last night, my bowels were very active.  I couldn't really feel it, but it seems preferable to have things moving some on their own. 

Thank You for your very kind offer.  As you know, this is all really harsh stuff.  It has really bothered me that my medical "help" and some family has labeled my depression as somehow being unappreciative of life.  It's actually the opposite.  I don't ask for much.  If I can jog next to the creek that runs near my home and have a body that allows me the confidence to work on easing my loneliness, I'm right as rain.  All of us have at least a few things that are non-negotiable needs.  This thing has put all of mine at risk.  I am trying so hard to be patient and hopeful, but know for certain that things have to get a lot better.