It is good to hear from you. Do give yourself time for the nerve to calm down. I am now 3 months out, and still have some slight numbness to my check. Sure beats the pain.
Laura Oregon said:
Hi all,
I had my surgery on Monday and was released yesterday. For those of you unfamiliar with the Portland/OHSU area, the hospital is up on a hill. My bigger worry yesterday was getting off the hill before it started to snow much - Portland pretty much closes down because of snow.
Currently my right side face is completely numb. I know that this is common and will dissipate over the next couple weeks, although it may never go away completely. I had no compression on the nerve at all. Hopefully the nerve combing will disrupt the pain signals. That's the plan at least.
The first 36 hours were really rough. After that it was like a switch flipped and the pain decreased (didn't go away but much less) and the nausea stopped. As I told one of my friends, although I don't feel great under normal circumstances, considering that I had brain surgery 4 days ago I feel very well. I'm keeping up on my pain pills, sleeping a lot and basically just hanging around..
I can write more later if anyone is interested but I'm about ready to go lie back down. I'm taking it very, very easy.
I had my internal neurolyis done at OHSU as well. This was my fourth surgery in 4 1/2 years. In my case, the surgeon took a good look to make sure I did not have another compression, before he did the internal neurolyis. There wasn't a compression this time. I have a deformity of the skull that results in me having CSF leaks out of my nose when my skull is drilled into. This resulted in me being placed on a lumbar drain for five days. I could not get out of bed except to go to the bathroom. It took a couple of weeks for the numbness to my cheek to calm down. I also did not know if the headaches I was having was due to the surgery or the lumbar drain. Thing is it calmed down after 3 days. The worst thing for me is OHSU has great food, and you can get it as often as you want it, and I ete a lot due to total boredom, and gained ten pounds.
I just want to put this out there, I had the FIESTA MRI(3D), which is considered TN protocol, and it showed a blood vessel wrapped around the left TN nerve...when the Neurosurgeon got it there during the MVD she found 2 blood vessels wrapped around and a large artery severely compressing the nerve at the root base entry. I am with RED on this one, no matter how clear the 3D image was, an MRI CANNOT rule out a compression. I wish you the best, and hope you can find relief in whichever direction you choose to go. I just wanted to make sure you new this possibility. :)
Thanks for the nod, Mom... MRI does have a place in confirming that there is something for MVD to "decompress". But the best neurosurgeons will still attempt MVD without a positive indication in MRI, when the patient has displayed symptoms of classic (Type 1) TN. And as we've seen in other postings, "nerve combing" seems to offer an option for cases where no discrete nerve compression is found during exploration, and in Type 2 (Atypical) cases.
It's been one week sinceI had my internal neurolyis. I'm still keeping up on my pain meds and doing almost nothing at all. I'd love to go outside and get some fresh air but with the ice and snow I''m not going to risk falling...man, that makes me feel like an old person.
As I mentioned earlier, the first 36 hours or so after surgery were pretty rough. Lots of pain and very bad nausea and vomiting. I had the additional complication of not being able to pass urine. Consequently I would have to have a straight cath put in periodically to drain my bladder. That little issue didn't resolve until Wednesday. After that life got considerably easier.
I had very bad nystagmus after I woke up. I still notice that my vision isn't normal but at least my eyes aren't jerking back and forth of their own accord.
During surgery prep they "washed" my hair with a shower cap thing that had some sort of chemical/shampoo stuff in it. Whatever that particular stuff was it was evil. It made my hair stiff, as though I had just dumped a big bottle of gel on my head and left it. I was very anxious to get that crud out. Luckily, I was given permission to gently wash my hair just a day or so after I got home. I was told not to use any product in it or get fancy but I didn't care, I just wanted the goop gone.
I've uploaded a file of my wound. I'm not sure it will come through but I figured I'd give it a shot.
When I was being discharged last Thursday my surgeon's PA spent some time telling me what to expect. One thing she stressed, more than once, was that there would very likely be a spike in pain about a week after the surgery. She absolutely was NOT kidding. My pain was very manageable until about mid day Monday. Since then, I've had some crazy severe headaches. This is not TN pain. This is "somebody drilled a hole in your skull and poked metal instruments into a typically no medical instrument zone" pain. There's not much they can do. My medications have been changed to every 3 hours instead of every 4 and I was told to add 1 regular Advil between doses. (telling someone to take an Advil for brain surgery pain sounds like giving a band aid to help with an amputation)
Yesterday was two weeks since my surgery. My face is still numb and my ear is really clogged. The pain spike has calmed down but I'm still very much having good days and bad days. The past couple days I haven't felt particularly well but everything's been manageable. I go in for my post op appointment on Thursday.
What about you Dee? Are they closer to figuring out your gastro situation? I hope they're making some progress so you can move on with your TN issues.
I have been thinking about going to OHSU for my Trigeminal. I have had one MVD and am scheduled for my second Gamma Knife in Seattle, but I have a friend that lives in Portland and after reading some of the posts here it sounds like it would be worth my while to go to OHSU. I am on Medicare and don't know if they will let me go to Portland. Only reason they paid for Gamma Knife in Seattle is because my Neurosurgeon in Spokane that did the MVD told me he couldn't help me any further and to go to University of Seattle, but I ended up going to Swedish Hospital cause I like the doctors there. I am an Idaho resident so I don't know if Oregon would help me with the bill? Guess I should call OHSU and ask them. Hope everyone is doing okay. My pain is so so right now. Meds are working. Have had this for 13 years. Pretty depressing. Especially when no treatments or surgery has worked.
The wound looks like my wound after MVD. My head has been numb for 4 years. Then had GK in 2012 and have had headaches since, but TN pain left for 11 months. Back now. Not sure what I'm going to do.
Laura Oregon said:
It's been one week sinceI had my internal neurolyis. I'm still keeping up on my pain meds and doing almost nothing at all. I'd love to go outside and get some fresh air but with the ice and snow I''m not going to risk falling...man, that makes me feel like an old person.
As I mentioned earlier, the first 36 hours or so after surgery were pretty rough. Lots of pain and very bad nausea and vomiting. I had the additional complication of not being able to pass urine. Consequently I would have to have a straight cath put in periodically to drain my bladder. That little issue didn't resolve until Wednesday. After that life got considerably easier.
I had very bad nystagmus after I woke up. I still notice that my vision isn't normal but at least my eyes aren't jerking back and forth of their own accord.
During surgery prep they "washed" my hair with a shower cap thing that had some sort of chemical/shampoo stuff in it. Whatever that particular stuff was it was evil. It made my hair stiff, as though I had just dumped a big bottle of gel on my head and left it. I was very anxious to get that crud out. Luckily, I was given permission to gently wash my hair just a day or so after I got home. I was told not to use any product in it or get fancy but I didn't care, I just wanted the goop gone.
I've uploaded a file of my wound. I'm not sure it will come through but I figured I'd give it a shot.
it's good to hear that things are getting more manageable for you and that you're progressing.
I gave up waiting on the NHS appointment as, even as an urgent case, it was going to take months. I paid to go to see a gastroenterologist in a private hospital in Belfast. Luckily for me, it turned out that he, coincidently, runs a clinic from the hospital in Antrim where I live so he'll be able to see me through our NHS. I was so relieved as I'm not in a position to pay for private treatment, but I was just so worried about my condition that I just had to get it seen to.
In short, he is baffled & absolutely infuriated that I have been left like this since New Year's day, so he had put in an urgent referral for some tests which will require a general anaesthetic & he "red-flagged" it. He told me if I hadn't had an appointment through in the post within two weeks to ring his personal secretary directly & let him know, I'll be making that call today, so hopefully this current nightmare will be resolved very soon. Sadly this means that I've had to stall all treatment for my TN, but they were very understanding about it & told me to ring back when I was clear to go ahead.
My TN pain levels had eased slightly for a couple of weeks there but has been flaring up again this past week. I'm just hoping that it might settle down again with a raised level of Neurontin to allow me to deal with one crisis at a time. :-)
You take really good care of yourself & hopefully you'll be able to get outside & breathe in some of that fresh air really soon.
I have talked to them before and went to Seattle instead for gamma knife. Thought I would try it once. My sis and I are saving money so we can go to OHSU> Thank you for your response. How are you doing now?
Laura Oregon said:
Jest, give OHSU a call. if they can't accommodate you they might be able to point you in a good direction.
just thought I'd see how you are doing now? Are things any better? I've thinking about you a lot recently, so I hope all is well with you. Take good care of yourself,
I was so relieved to find your post as after seeing my ns yesterday he suggested this nerve combing op to try to help. If and when you feel up to it keep us posted - I am scheduled for the op in 2-3 months. Iām in the UK but have lucky to find a great ns.
Take care and hope your recovery keeps going well.
It's been quite a while since I've posted anything even though I lurk everyday.
It's been nearly 12 weeks since my surgery. In some ways it seems like only yesterday and in others it feels like a lifetime ago.
My incision is completely healed up and only shows about an inch or so below my hair line. Dr. B did a fantastic job of stitching me up so the scar is very small. I did realize that I have a divot behind my ear the other day. You can't see it but if you run your fingers from right behind my ear towards the back of my skull you can certainly feel it. It took me by surprise when I noticed it.
The numbness in my face is pretty much gone. It still feels very weird on the right hand corner of my bottom lip, jaw and tongue. It doesn't hurt, but it just feels odd.
The numbness near the incision and in my scalp has dissipated a bit but it's still quite dead. The up side of that is that I never had any incision pain at all. It also feels very odd.
Also, my hearing came back to normal. The stuffiness took a while to go away and I'd begun to sweat it a little bit. I already wear hearing aids in both ears and was really dreading the thought of being even more impaired. Oddly enough, when it came back I hardly noticed the change. It must have been gradually improving and I didn't notice.
The TN pain has changed but it hasn't gone away. Until yesterday, the pain had been much more dull in quality than before and not as frequent. Yesterday it was sharper than it has been. I'm still hoping that as the nerve heals from the surgery the pain will decrease. I have to look at it that way because it's just too depressing to think that this might now have worked.
Having said that, I'm still glad I had the surgery. It felt good to take some control of the TN. I had a chance to do something that could potentially take care of the pain so I did it. It was empowering.
