My aneurysm plan has become quite complicated. I have recently been diagnosed with Complex Regional Pain Syndrome in my right foot and ankle. It is basically a debilitating pain syndrome which can spread through the body from a minor injury, including surgery. Since there is no cure and no standard treatment for CRPS I am that much more afraid of having the coiling procedure. Has anyone on this forum had CRPS and had the coiling procedure done?
Do you have Type 1 or type 2 CRPS? In any event response to treatment is usually pretty good. Controlling the Annie may actually help. Failing to control the annie could have far worse consequences than limb pain from CRPS
Tj1, I am not sure, no one has mentioned stages to me. I have been suffering since last July, 2014, after an injury to my feet. My X-rays show bone demineralization in my right foot and my bone scan shows a large white area on my right foot and ankle. I am going for a foot CT this week. I have yet to receive any pain treatment. I just started taking neurontin at a therapeutic dose. I can not walk unassisted. My right foot is excruciatingly painful, I cannot weight bear on it and it turns bright red when I stand or sit. It used to be hot, now it gets cold and clammy. I use a stool to keep the weight of the covers off both feet.
I would be more confident to move forward with the surgery if I had the CRPS under control and I would be even more confident if the new “web” device was used, instead of coiling with a stent.
I am curious why do you think “controlling the Annie” would help?
I was injured at work in July 2014. Both feet, right foot had a huge black bruise covering the top of my foot. It hurt, but not off the charts. I did not seek immediate medical care.
I had a severe /violent headache in Oct, went to ER in Boston, stuck in a corridor for hours. No tests. Horrible treatment.
In Mar 2015 I had a severe reaction to antibiotics used to treat h pylori. My husband took me to ER in another town. The attending asked why we did not go to Boston, when we told him about my negative experience there, he asked a lot of questions and then sent me for a CT, which revealed the aneurysm. I was ambulanced to Boston, where I had another horrible ER experience.
Campanile...
I am so curious...were your CRPS symptoms/treatment before your headache or be4 your aneurysm was diagnosed?
Some of us post-treatment have some of the symptoms listed on the NINDS site...I was referred for testing for Sjogren's syndrome...and, one neurologist noted carpal tunnel... Sjogren's is one of the unknown-cause diseases...so similar to CRPS ??
NINDS: "most common triggers: fractures, sprains/strains, soft tissue injury (as burns, cuts, bruises) limb immobilization (a cast) or surgical or medical procedures (such as needlesticks)...
Needlesticks: IV cannula stylets (is that same as a catheter w/a guidewire or microcatheter..?.)
You may want to ask your doctor(s) more questions...re: triggers...what may possibly advance triggering your current CRPS status...
My CRPS symptoms began almost immediately after the accident in July, before the violent headache in Oct. I had horrendous days of burning pain in my feet. My feet were so excessively tender I asked one doctor if I could possibly have gout! I slept with a stool in my bed to keep the weight of the covers off my feet.
I am glad you mentioned the triggers. When I was seen at the ER in March the ER nurse jabbed an iv port in my arm. It was huge and caused me massive pain, worse it was never used. Not once. I went to the ER for pain relief, haha, they would not let me drink anything so I became severely dehydrated from the lack of fluids and constantly evacuating my bowels. It was like a nightmarish Lucille Ball comedy show. I could not walk from the CRPS pain, I had to drag myself to a port-a-potty with a port in my left arm which I could not bend. I was in panic from fear that I would fall. Every hour it seemed a new group of people from neurology would come into see me-I looked and felt insane surrounded by the stench in the porta-potty. One female neurologist told me to try medical marijauna for the pain, but did not tell me how to get it.
I am supposed to have a colonoscopy and endoscopy. I have written to the doctor asking him how triggers, esp. camera and needle size, can be minimized during these procedures. No answer.
CRPS is an orphan disease. Very little is known or understood about it. Anything can trigger it. Once it “settles in” a limb, it is there. It can go into remission, or it can jump to the opposite limb or it can spread throughout your body, including to internal organs. For all I know, my recent stomach problems could be from CRPS.
I think you misunderstand the process. Any of the triggers mentioned can start it or spread it to another area, but those things won’t necessarily worsen the disease once it is entrenched in an area.
Hi all, I have had Type 2 CRPS for 15 years. 4 years ago I had a 13 mm basilar tip coiled and stented. Since that time the pain from CRPS has increased with time, the pain and “bone pressure” has also spread upward to my outer thigh area. While there is absolutely no choice but to have an aneurysm such as mine treated, I do believe that my pain issues have increased substantially due to the hardened coil mass of the aneurysm pressuring my brain stem and other close brain matter. So to answer a previous question, I firmly believe that the repaired aneurysm has increased my pain. I am however alive and that is everything. I will attempt to attach a hyperlink to a recent journal article that supports the possibility of increased pain due to “bendy” basilar tip aneurysms. I believe that the same process can occur with other embolized aneurysms. If the link will not attach, look up Bendy basilar apex aneurysms online.Bendy basilar apex aneurysms
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Hi, I have CRPS in all 4 limbs & learned today after an angiogram that my coiled & stented aneurysm is filling. I will need to have a follow up meeting to discuss options. I am terrified & tired.
I’ll bet your exhausted. Rest, watch a good movie, hang in there!
The aneurysm is stable, but the wide neck is filling & not clotting, so I am scheduled for a procedure in Oct. which will add a second stent to the first. It sounds good, but so did the first stent. I was pretty much assured that with it I would probably not need anything in addition. Now I am wondering if a flow through stent would be better.
That’s a great question to ask your surgeon! Go in with your questions. My neck never closed. I don’t worry about it, I’m here. Don’t know why it didn’t close, except for the daughter sacs.
Thank you for answering me. I feel very iffy about this, because this surgeon communicates through his staff. I imagine he does this to conserve his energy, but it feels like I am in limbo & it is not reassuring. I will call his office today to get more details.
Most times I would use the phone, but then one of the wonderful triage RN’s taught me how to use the patient portal. I usually get the NP answering me, but everyone explained that it’s gone through my surgeon before replies are sent back. Hope it helps…
I was reading your story. I am so sorry for all that you’ve gone through. I do understand. I was thinking you could ask to Skype with you Surgeon. My husband and I just Skype with our surgeon. Write down question before it helps to be face to face even though a distance away. I really hope you get some answers and help with your pain.
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I spoke with the surgeon today. The stent he will place is called an LVIS blue that gives a 28% coverage, this is on top of the existing stent that gives 15%. He believes this combination will stop the persistent refilling of the aneurysm’s neck. I hope he is right, because another surgeon said he would add more coils & a flow diverter, he does not use the LVIS. The latter choice carries more risk, since it is a longer operation. I am in a quandary. I dread the thought of the first choice not being sufficient & then needing a 3rd operation.
I’d be in a quandary too, jeesh! Perhaps you can ask the surgeon why he/she has chosen this method and not another. You are one of the most informed members here Campanile, so it never hurts to question the one who’s going in. As you probably already know, I’ve been coiled 3x, the last with balloon assist. She warned that if the balloon assist wasn’t working, she would do a crainiotomy. The neck still shows open on the MRAs but she did give me a break for two years. Don’t see her until February… A lot of people tell me how I should live my life…I don’t listen to the majority of them. I figure, my life, my choices. Yes I’m a wee bit oppositional…
It is really hard to see others have obliterated aneurysms, knowing yours might never be & to be facing more surgery. You are very brave. I am terrified.
I don’t know about being brave. It’s probably a learned lesson for me having dealt with things that people should never do to their children I guess as a Social Worker. We had to learn to separate those things we could control with the things we could not or one would have to quit. So many years of that lesson has helped tremendously with everything else. I do get mad, I get upset but I don’t let it control me. If that makes sense.
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My husband says the same. Focus on what is possible, otherwise you will go mad.
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