My wife has had 4 brainstem bleeds since Sept 2012 as a result of Cavernous Malformation bleeds, she has 2 of them. The last one on 3/23/17 was the most damaging and subsequently had one of them removed surgically on 5/9/17. We have been dealing with the aftermath ever since. She has been diagnosed with HOD (Hypertrophic Olivary Degeneration) which we have found is very rare and difficult to find some that is knowledgeable with HOD. If anyone ahs any information or knows of someone to contact we would greatly appreciate it. Thank you. Bill
I’m afraid that HOD is remarkably rare and I think your wife is the first person I’ve seen on here with that condition, not least because surgery near the brainstem is avoided where possible. There are some articles accessible by Googling. Have you been told anything about the condition by your doctors?
Thank you so much for responding. We have been all over the internet trying to find any information on HOD and yes it is very rare. Depending on who you see or talk to the response can be quite different. We have been told that it could take years and years to recover if she does, but no one knows to what extent as we are dealing with cranial nerve damage. This is her 4th bleed since 2012 that lead to surgery on 5/9/17. She recovered virtually 100% from the 3 previous bleeds, but not this time. We were always told they could not do surgery as it was too dangerous, but it was done to save her life… I have even emailed some researchers in France that had an article on HOD, but have never heard back.
Thank you again for your time and I wish you all the best.
I’m assuming she just has a tremor of her palate and/or of her eyes but doesn’t have a wider ataxia (= loss of coordination)? Is she on any drugs to try to reduce the tremor?
She does have palatial tremor, Nystamus, Dyplopia and ataxia. She tried a very low dose of gabapentin but could not tolerate the side effects and felt it made her ataxia worse. She was prescribed Mematine by a movement specialist at the University of Maryland. If you are not aware, Mematine is approved for people who have moderate to severe Alzheimer’s but they have found that it is sometimes helpful for symptoms like hers. However she has not tried it. She had a botox injection at Johns Hopkins, we live in the area, for the diplopia which seemed to have help to some degree. She still have double vision and the Nystagmus. At some point they are going to try botox for the Nystamus.
Finally got her on Zoloft to help her emotionally. Besides that she does not have any other comorbidities or take any other medications.
Sounds like you know a bit about ataxia, etc. Any information you can share would be so greatly appreciated.
I can’t say I know anything. I was just reading up on articles I could find. The main article I read correlated the oculo/palatal tremors with a bleed and that a wider ataxia was more often associated with things other than a bleed but it sounds like the damage she has suffered is a bit more extensive than just the oculopalatal effects.
I read the same article rather quickly the other day when replying to you (and thought I read that the wider ataxia abates but on re-reading today, I think I mis-read that and the other commoner conditions that lead to the ataxia are not what your wife has (by my reading) so I’m not convinced there is anything to help you with there, unfortunately.
I might re-read it again, though).
I’m no doctor – I’m an IT man – but by virtue of being an IT man (and software being a very structured language in the same way that legal text is or medical terms are) I feel I can read some medical and legal texts more easily than some, so I’m often enthused enough to try.
The two drugs cited in the article I read were gabapentin and memantine. Baclofen was also mentioned but cited as not effective. Botox is definitely interesting!
So I know nothing but don’t mind trying to read some articles if there is any prospect of helping, especially for something so rare that you struggle to find people with common experience.
That is very kind of you. I am a pharmaceutical guy and know enough about medical stuff to make me dangerous.
We just keep plugging away, try and do the best we can and hope for the best. It has been a long and challenging two years. Thank you again for your time.
I should have known when you used the term “comorbidities” that you were comfortable with this stuff! But I’ve been drawn into learning a bit more about cavernous malformations and the inferior olive and the Guillain-Mollaret pathway than I’d ever expect to know, so it has been an interesting dip into an area for me. I do think if were able to have my time again, neurology would be a subject I could get really interested in.
My final thought today was that nystagmus is a more widely experienced effect from AVMs, surgery, etc. so if there is any common ground that you might find with others, that might be one.
If there is any way we can reasonably help, I’m one to try.
especially for something so rare that you struggle to find people with common experience.