Marc's HSCT Blog
I may just upload WordPress as it makes it more convenient because it is "more geared" towards a blog (although you can make an entire website from that too) plus it would allow people to comment on posts. The basic problem with that is threefold...
- I'm not as well versed in WordPress
- I would have to upload WP into the back end of this site (there isn't as much available in the free version)
- I have actually started to go on with my life (I know this sounds crude, but being as honest as I can be here...) I didn't have HSCT so that I could start a life to help others get through HSCT. I did it so that I could go on with my own life (which happens a lot in the HSCT world)
With that being said, Thank You Pat for reminding me that this is helping others and it does make a difference to whether someone decides to get this done or not. With that, I'll blog a little more about what has been happening lately...
I'm not a typical HSCT patient. I had HSCT, and everything had been good for about the first three years after I got home from it.
Almost all of my previous symptoms have been reversed. All that remains to this day are:
- I get very fatigued after a shorter time than a normal person does
- I still have balance issues (I think due to another medical issue that I was unaware of until after HSCT)
Recently I started using a walker because, frankly, where I live, it was too dangerous NOT to use one... very rough ground around the house etc.
My balance issues are because of one of two reasons. Either the MS had got to the nerves in my ear (basically the MS munched on the sheath around the nerve that helps to control the balance and my body didn't repair that nerve) and that symptom can't be reversed on it's own, or the Meniere's Disease is causing the balance problem, which can be corrected, but it's a pretty drastic surgery.
I don't know if I said this before or not, but I'm not going to "sugar coat" anything on this. It's not all sunshine and rainbows, and I don't want it to be. I don't want people to say that they read this, had HSCT and thought that it was all done after that. HSCT is not easy to go through, and it's pretty difficult afterward too. You have to get into physical therapy as soon as you are able to after HSCT... I can't stress that enough.
Right now, I'm at a crossroad. I'm scheduled to have surgery in about 6 weeks and being honest I'm not afraid to have this surgery, but I don't know if having it will do any good or not.
I have already tried a few different meds for the balance problems, and there is no difference. I'm about 50% - 60% deaf in my left ear. I have a BAHA (Bone Anchored Hearing Aid) and that pretty much takes care of the hearing problem.
This surgery basically removes a lot of the internal stuff in my left ear, including the eardrum. Which leaves me deaf in that ear, but could POSSIBLY restore my balance.
In other words, when this surgery is done, I may or may not have my balance restored, but I will be deaf, permanently in my ear.
Let me repeat, this may work as wanted, or I could wake up and the only difference is that I'm deaf in one ear. Still walking around like I'm intoxicated, still having to use a walker (probably permanently at 48 years old) PLUS being deaf in one ear.
Talk about being under some stress!
I have discovered that there may be something else that is causing all of this... my triglycerides in my blood are 836... normal is 35 - 175. What does this have to do with balance problems? There could be a blood flow restriction to the brain which may be causing the constant balance problems. This could also explain why the Doctor says that I'm not a "typical" Meniere's Disease patient. Most Meniere's patients have attacks... they get vertigo for a few hours/days and then they go back to normal. I have constant vertigo... some days it's not too bad, but it's still there, and other days, I can't hardly get out of bed.
I have an appointment in two days that will answer this, if nothing is found, then my only other choice is removing most if the innards from my left ear and hope for the best.
I'll post more after my appointment in a few days... until then...