Been going thru IVIG and Need advice re Surgery
 

Hi all,

I have to have surgery to remove and adenoma on my thyroid gland. The cut will be about 1 inch. The doc is willing to look over any recommendations regarding surgery and RSD. Anyone have an article or research?

I am also going into my 5th month of IVIG. I have been diagnosed with small fiber neuropathy as well. So far no luck with the IVIG. I continue to have severe muscle wasting in my legs, arms and back which is so upsetting

Thanks for any info

Debbie

Dear Debbie -

As to surgery and CRPS, you can find some articles on the RSDSA site here: http://www.rsds.org/researchlibrary.html#Surgery. Unfortunately, there's a big hole in the middle where Scott Reuben, MD used to be, before he pleaded guilty to a single count of fabricating results of studies aimed at showing that pretreatment with COX-2 NSAIDs would improve post-op recoveries. Check out these links, among others: http://www.circare.org/lex/10cr30002_1_20100114.pdf and http://www.medpagetoday.com/PublicHe...y/Ethics/17985 , apparently in return for various gratuities from a couple of major drug manufacturers.

The problem is that while Reuben’s COX-s papers were clearly frauds, he also acknowledged cooking his own results in a number of multi-center studies in which he was only one author, thereby getting a total of 21 articles withdrawn. http://www.medpagetoday.com/Surgery/...esiology/13592 As such, this left a particular gap where a bunch of good articles - in which he happened to be a co-author – had showed that the use of regional blocks at the surgery site (including continuous regional anesthesia) had a dramatic effect in reducing the spread of post-surgical CRPS. So the articles are - essentially - no more, although a Google search of "Reuben surgery CRPS" still brings a lot of them up. Thus far, these studies have not been replicated and reported post-Reuben. My guess is that the grant money just isn’t there.

That said, everything I’ve heard from my pain doc – chief of pain medicine at a large regional medical school – is that people are continuing to follow the practice of blocks for the areas undergoing surgery. The problem, however, is that in order to arrange it, you have to have a pre-surgical consultation the anesthesiologist, something (at least in Los Angeles) that’s only available at a university medical school. Elsewhere, the anesthesiologist is assigned generally the day before surgery and there is no chance to set anything up.

As far as IVIG is concerned, that’s a long story. Please check out the thread New trauma, new fears and my post no. 8 at http://neurotalk.psychcentral.com/sh...d.php?p=694424

At least that’s what I know.

Mike

Hi Debbie,

So sorry to hear you are not feeling well.

I have had many surgeries while having RSD. My pain managment doctor was on staff at the same hosptial as my surgeon. In most hosptial settings from what I can see is the the pain managment dept. is part of the anesthesioloist department, so they have all the easy access to the anesthesioloist(spelling sorry). My PM doctor was very involved with my surgeries and if I remember correctly he was even there just to give help with one. The protocol always involved ketamine as part of the anesthestising(boy I'm reaching with this spelling I apologize,but you get the point). During this nightmare with my right arm my carpel tunnel started to become unbearable in my left, so I had to have surgery to correct it or I would be left not using any of my hands at all. Again they used ketamine, and I remember my surgeon was joking around because a carpel tunnel usually would get done in the same day surgery unit but because of the ketamine being administered I had to be on a full surgical floor, his statement was in his opinion, "it like killing a fly with a sledge hammer", meaning he didn't feel it was necessary but would do what my PM doctor wanted. And I never had a RSD problem with my left arm or my left side at all and through all my surgeries to correct the right arm I did not become worse with RSD.

I truly wish you all the best and please keep us posted.

gabbycakes

I too have had thyroid surgery, I actually had 4 surgery since my rsd started and as long as you have a doctor who knows about rsd. For me what they did I had constantly low dose of ketamine. They then about 30min before the surgery they started to give me iv pain medacine, I use demerol but everyone is different. They then kept giving me the pain meds during the surgery, after the surgery and when I woke up the kept giving me the demerol and my surgery was a great success and I woke up with just low pain like a 4. I have had surgery and they didnt do that and I cried hours afterwards in a big flare, the thyroid surgery though, I didnt cry at all and didnt go into any flares. The surgeon also made sure that I had pain managment all on board and also an anesthesiologist who knew what rsd was and how to keep the right amount of meds. I was actually very lucky with the surgery, my problem all started with a golf ball sized lump on my thyroid. They asperated to see what it could be and to make sure I didnt have cancer and it came back as non canceris but 2 days later it came back but this time it hurt. So they decided to remove it. When I wolk up my doctor came to me and told me that it was a great to push for the surgery as what was not to believe it as cancer before came back possitive for cancer that wasnt detectable before. So I ended up being really lucky that it hadnt spread yet.
I wish you luck!

Samantha

If you have a surgeon that is experienced with performing blocks him/herself, then having them do the block at the beginning of the surgery, is a good option. A former doc of mine was a spine surgeon that became a primary with a focus on pain patients. He did a stellate ganglion block (and had previously done a series of them) at the time of my fourth wrist surgery. His background and skill set was perhaps unusual though...

I found post op recovery pain negligible compared to my regular RSD pain, and with the stellate ganglion block signifigantly decreasing my RSD pain for something like 3 weeks, it made sugery so much less traumatic for me.

All blocks are not created equal. This shouldn't be treated, for example, like an epidural during childbirth, where you receive a small window of pain relief. Do some research on block cocktail options, since this can increase length of results dramatically in my experiene. The experience, skill and patience of the doc are also crucial. With a garden variety diagnostic block, the doc can get their answer without the level of precision you're going to want during this occassion... You should be awake and he/she should use your responses to pinpoint the "sweet spot" for your maximum relief.

Thanks
 

Thanks for your responses. Do you think I need to do this if it such a small surgery- about an inch incision then removal of the parathyroid gland -left lower.


Thanks for your replys

Deb

Hi Deb,
I've been reading along what everyone wrote to you and I think surgery is surgery...whether big or small. No surgery is small. You will be under enough stress with rsd and then to add a surgery. Your frame of mind is the most important. Bring up your concerns with your surgeon before the surgery so you will know ahead of time what is going on and what to expect. I think everyone gave you great suggestions as to what helped them the most. This is such a great board as we have a wealth of knowledge at our disposal! Best of luck to you.
kathy d

Just an IV in my "good" hand two weeks in a row was a traumatic enough incident to cause mirroring. Any surgery is a big deal with RSD, even seemingly routine dental care can be problematic. Better to be over cautious now then to have regrets later.