An Update After my Hysterectomy and 5th Ketamine Infusion
 

Hi Everyone!

I thought I'd let you all know how I'm going. :)

Just to back up a little for those that are playing along at home :winky:- I needed a hysterectomy because of having post tubal ligation syndrome for the past two years since Hannah was born. I'm 30, have four kids and my rsd went crazy whenever I had my period, which was for about 3 weeks out of every 4. :mad: They'd tried doing other smaller procedures but they didn't help, so that coupled with my mum's uterine cancer and the fact that I was done having kids, made us decide to take the darn uterus out and get it all done with! We organised to start a ketamine infusion (7 day awake treatment) when I was in recovery, to limit rsd complications.

So I had my hysterectomy at the end of July- keeping ovaries, done vaginally to limit nerve flareups etc that would come with an abdominal cut. They tried to do it with just a spinal block, but it was unsuccessful (they tried four times, giving me 8 holes in my back! :eek: They could get the needles in but couldn't get the thread all the way in ) so I was knocked out for the operation instead.

Because the ketamine was started at the top level, rather than working up to that over a couple of days, I was very out of it for the first couple of days- especially as I also had some effect from the spinal (what DID get in) and the morphine I was on.

The first couple of weeks was very tough, made worse by a fall. My right leg gave out from under me and I fell sideways, hitting my head on the bathroom vanity and landing with my left hand bent underneath me to break my fall- causing it to be damaged. X-Rays showed no break (thank god) but it had to be splinted for a few weeks. It was more painful than my right rsd arm!

But in a way that was good for my brain, as my bad arm had to be my good arm and do everything! There are two possible reasons for the fall: one is due to anemia. I'd lost a lot of blood during the operation etc. The other is something my pain specialist mentioned the other day: in that my system was so over the top in pain messages that it cut out one thing to cope with the rest, so it cut the circulation to my good leg. Seems weird, but apparently its quite likely that's what happened. Either way it hurt!

But I started back on the vitamin c i took before the op, taking 1000mg a day, plus calcium and magnesium tablets, and I really think they helped with the healing process of my injured wrist. I still get a lot of pain there, very similar to my rsd pains, but I'll wait that out a bit longer before I think too much about that. I have all the movement back, which was something I was worried would take a long time. I'll just have to wait and see what happens with the pain.

As for the ketamine- it was great while it was running, I was able to give ZERO pain scores (gotta love that!) and by day 4 I was up and walking around, I could sit up on my own, shower myself sitting down, etc. But as they dropped the dose down so I could go home, the pain levels starting rising again, when they turned it off the pain levels were back to how they were before the op - very high.

Otherwise the recovery has been good. It's been frustrating and tedious and painful, but i expected it to be like after my c/section, so I was glad it wasn't that bad.

I'm 5 weeks post op now and am doing well. Energy levels are pathetic, rsd is higher than ever, pelvic pain is a regular thing coming and going all day, but otherwise I'm feeling great.

I'm SO glad I did it, I feel like that whole chapter of my life is over and am very positive about what's to come. I feel relief and excitement at the same time! If only I could get rid of my RSD with an operation! lol :o

I was disappointed the ketamine relief didn't linger on, but just getting the relief while I was in hospital was a bonus. My pain specialist is amazing, I'm back on gabapentin now and its working fairly well. We're also doing pain psych things and trying to do a physio/pacing program to increase my physical ability.

I'm sorry to admit I'm not a regular in here anymore so if any of you want to see how I'm going you're welcome to check my blog-- www.thesixofus.wordpress.com

x Kate

I'm very happy to hear that things have gone so well for you! You had the hysterectomy because the pain from the ptls was so bad, right? It's the first time I've seen anyone else write that who I "know". I have ptls too. Been dealing with it since my last was born 14 1/2 years ago. She was number 4 for me. I didn't know what I was dealing with all these years even had a name, until a year or 2 ago. What other symptoms have you dealt with?

If a hysterectomy would take care of my symptoms, I'd do it in a heartbeat. The one sticking point, unfortunately, is lack of money or insurance to even have it done if a doc agreed it'd be a good thing to have done. I know I'm way past sick and tired of being sick and tired! LOL

Hugs,

Karen

Dear Kate -

As on of the slightly older hand who misses all the folk who don't come aroung here that often, it is wonderful to see not only your posting but your well done blog as well. Cheers!

I'm also happy to hear that your hysterectomy went well even though the ketamine is not as effective as it once was. Sadly, that appears to be the way of the world.

For me, I'm pushing to get into a round of ECT treatments (electroconvulsive therapy) using ketamine as the general anesthetic, where brain PET scans show almost identicle changes in regional cerebral blood flow - specificailly to areas of the brain that control "sympathetic tone" in blood vessels - so that the ketamine could be expected to have a catalytic affect on the ECT process, but I found out on Friday morning that that university hospital where it was going to be done regards the proceedure as sufficiently "non-standard" that it will have to be submitted to their "Institutional Review Board" (IRB) something that I understand can take over a year. :( So it goes, right? (Can't have fun all the time.)

Still, my two kids (15 and 10) are doing well, even of the eldist is really stressed about his new school term. And man do they pitch it fast!

be well,
Mike

Kate,
So good to hear from you & to know you are doing better. Sorry about that fall. Doesn't sound like it was much fun................;) Those are never much fun. The last 2 months have been better for me as far as pain is concerned but not sure why. Maybe the heat, maybe because I am a bit more relaxed. Trying not to worry too much about the future has helped & also I finished filling out the recertification forms for Long Term Disability. I do always hate those things. I don't know why they have me fill them out anyway. I sure as heck don't think they read them. I reread the other two I filled out & sent in & they said almost the same thing & they sure didn't make any difference. They go by what the doctor says anyway not what I say. I tell them I fall asleep whether sitting straight up or lying down or anywhere in between so no way can I do a job. In 7 yrs I will loose that money anyway once I hit retirement age & I was sweating what would happen to us then but decided to stop doing that. Alot can happen in the next 7 yrs.

Hope you continue to do well after your surgery & sure hope your RSD pai goes down too. I had a hysterectomy in my early 30's due to cancer, but have remained cancer free ever since. They caught it early as I was having PID (pelvic inflammatory disease) & when it would hit they would do a PAP smear. One month it was dysplasia (cells not cancerous but could turn that way) & 3 months later full blown cancer. I kept my ovaries from 1986 to 1993 then had one blow up & almost bled to death, but having had 2 previous abdominal surgeries saved my life. The internal scar tissue that forms from having surgery walled my lower abdomen off & when that filled with blood from the ovarian artery it turned into a blood clot (the size of a babies head). Cause it was almost 36 hours from the time it happened till the time they did surgery. They thought I had one of those crazy tumors women get that grow really huge really quickly. Boy they were in for a surpise when they opened me up. If not for the adhesions I would have died in my bed sometime after I went to bed on Sunday night (btw the ovary blew on Mother's Day 1986. Did it hurt?? Hell yah!! But I had also been having ovarian cysts burst every couple of months & that is exactly what happened when my ovary blew up. A huge cyst had burst it open. I did have a gigantic tolerance to pain back then due to having Fibromyalgia my whole life. I thought everyone hurt day in & day out when I was DX'ed with that in 1989. Much to my surprise I found out that not everyone hurt like I did on a daily basis. I have had a difficult life of pain my whole life. I should write a book maybe huh??? How It Is to Hurt Your Whole Damn Life *LOL*

Take care kiddo,
DebbyV

DebbyV