Thanks to all those who sent lovely messages, crossed various body parts and said a prayer to the deity of the choice, it has warmed the little cockles of my heart. Whilst I had hoped to respond individually, I've been a little overwhelmed. So instead I'm sending out a big cyber hug to everyone. Consider yourselves well and truly hugged.
To reiterate for those who haven't the foggiest what I'm talking about. A while back I had a MRI and found out that my left jugular vein was a mutant named Jeff and my brain wasn't draining properly (this is known as CCSVI or Chronic Cerebrospinal Venous Insufficiency). I met with a Vascular Interventional Radiologist (The Balloonman) who said he could put a hit out on Jeff, or at lest slap him around a bit, with a balloon angioplasty. This past Friday I underwent balloon angioplasty to try and sort Jeff out.
The whole day was kind of bizarre, and not one I'd jump to repeat. The waiting sucks. The repeating your history and explaining Bob to every doctor and nurse grows old really quickly. The repeated taking of obs not fun. The old guy coughing up a lung behind the curtain not fun. Hospital TV not fun. Though playing with the electric bed whilst giggling like a two-year-old with your husband was fun.
Angioplasty is not for the for the faint of heart, especially if the drugs don't work. As many of you know I was adamant that I would be requesting copious amounts of drugs to make it through. I also told Mr Grumpy that if I forget to mention my desire for pharmaceuticals, he was to tell every nurse and doctor that came within ear shot that I wanted drugs. I may or may not have threatened that he would be singing castrato if he failed in this duty. At my meeting with The Balloonman a couple of weeks before I was assured that I would be drugged up on "Jungle Juice". A magical elixir that would allow them to talk to me throughout but would leave me with no memory of the event.
LIAR! May your pants be forever on fire.
The drugs didn't work. I kept lying there the whole time thinking,
"It's all okay. I wont remember anything. Yes my lady bits are on show in a room full of strangers. But I wont remember a thing. Yes it hurts like hell. But I wont remember. I wont remember."
But dammit I do. Every last second of it.
I remember lying on the table and the nurse lifting up my gown in front of a young male doc and saying, "your groin looks good". Which was then followed by her coming back and exposing me to the same guy again, plus a number of other nursing staff and various doctors, and deciding I needed a shave. All of which has left me looking like I chickened out of a bikini wax half way through. A bikini wax which apparently was done by a blind woman with the DTs. Though I shouldn't complain. A girlfriend who had the same procedure was asked by the male doc if she wanted a star or a love heart when it was decided she needed a further trimming. Go doctor humour. Way to ease the tension. An added bonus is that I have had the usual skin reaction to bandage adhesives and have a super sexy square of red, itchy and welted groin going on at the incision site. Fanbloodytastic.
I remember the sadistic overuse of local anaesthetic in my groin, by stabby man. At that stage I was trying to maintain my ladylike persona and swallowed down my expletives, later on I was not so worried about minding my manners and the odd F-bomb may have been uttered. Despite my issues being up in my neck, they insert the wire and balloon down in the groin at the femoral vein and then thread it all the way up to the jugular. I do think I might suggest to them that the cut could be made either an inch up or down from the crease where your leg joins your torso, as this is where your undies seam sits and rubs the hell out of the incision point. Ow. I most certainly remember the series of directions required to thread the wire up through my body and the weird pressure.
I remember looking up at the machine they place over your neck to scan the vein whilst they play around. I remember staring at the plastic wrapped machine that had the word Siemens written on it, and thinking up a myriad of dirty jokes (classy I know). This was the machine that took x-rays the whole time whilst they shot me up with a contrast dye to map the veins (venograph), and ballooned. I will say thinking up dirty jokes is a good way to distract yourself from reality.
I remember being told to turn my neck in various directions to best position the balloon. Apparently turning it to the left squished it up. Apparently staying still is vital as I was told this numerous times. Might I add excruciating pain is not conducive to staying still and I may have thought about telling them to "bite me", should they say it once more.
I remember the crackling sound as they inflated the balloon. It's rather weird hearing a sound like someone is crumpling up cellophane coming from inside your body.
I definitely remember pain. Whilst doing the part of my jugular which resides in my neck hurt, it was nothing compared to when they went higher up to the jugular bulb. I now know what it must feel like if you were to accidentally stab yourself in the ear with a javelin that had been dipped in lava and glass shards. I'd definitely advise against trying that one at home kiddies. This may have been a time of F-bombs. I was warned that pain was the gauge they use to measure how close they are to tearing your jugular, which I was happy to hear they wanted to avoid. But holy hell. There are no swear words to adequately describe that pain. Unfortunately Jeff was rather tight and resistent to stretching so the biggest they could do was 7mm wide which is still far less than normal size (12mm is about average).
I remember chest pain throughout most of the procedure (and for about three days after). Luckily the lava and glass covered javelin stuck in my ear took my mind off my chest pain.
I remember being shown the scans post-ballooning. Loads of scans. Unfortunately the nature of Jeff meant that they were unable to do as much as they wanted. The risk of tearing the vein was too great and part of it was compressed by my carotid. It is opened up more, just not as far as they had hoped. Turns out the blood was trying to force it's way unsuccessfully out collateral veins that had grown around the stenosis and out my vertebral plexis. The Balloonman was not overly hopeful that they had achieved much.
Not being able to get up to pee for 2 hours after was a challenge thanks to my acron sized baldder. The nurse told me that I could get up and pee at 5pm and I counted down every last minute. At 4.50pm I begged the nurse to let me go, and after a quick set of obs I was allowed the blessed pee. It was bliss I tell you, pure bliss.
To top off my fun day as I was leaving my right arm vasospasmed and turned black the whole length. I've had dark pooling before but nothing like that. Luckily it cleared up after about half an hour, but not before The Balloonman had been called back over, though he did pay for our parking, bonus! Oh, and he also checked the file and said I had enough drugs pumped into me there's no way I should remember, so really I guess I'm just lucky.
So whilst the smiting of Jeff was not 100% successful, I like to think he is at least living life as a eunich. What that means long term I don't know. Whether he'll come back I don't know, but it is a risk.
It's been a week now and I can say I have felt some improvements, though I am busily running around touching wood (the tree variety for those with a dirty mind, which means you Mr Grumpy). So far the changes I've noticed are:
- I haven't had nausea (well except for when I ate jam, which is rather dumb when you have issues with fructose, but it looked so good) or vomited since before the procedure. This is rather huge as this has been one of my worst symptoms and has been resistant to every drug and dietary change I have made. I haven't had a day free of nausea since I first became ill. So one week nausea-free is a bit like winning the lottery.
- I haven't had a migraine since. Normally I eat pain killers for migraines and headaches. Especially, getting the boys bug should have sent me into migraine hell. Even my headaches have been minimal.
- I can read 12 font without my glasses. I haven't been able to do that since.....well I can't remember when. Overall my vision seems crisper.
- I stood up in the shower and washed my hair today. This is huge. I've had a shower chair for quite a while now and before that I would sit on the floor of my manky shower. In particular, raising my arms above my head is difficult at the best of times as they go numb pretty much immediately and it seems to set off my other symptoms.
- I've been sharper mentally, well at least that's what the rug rats and Mr Grumpy tell me. I'm not sure myself, though I was able to talk on the phone for about half an hour and remain coherent. I usually have heaps of trouble following a conversation on the phone and find it quite exhausting.
I never saw de-Jeffing as a cure for Bob, but I am happy with the changes I have seen. For me it's been more an issue of alleviating any excess disability. Given how I have been feeling since, it seems Jeff has been exacerbating my symptoms. A week before my ballooning I saw my physio and had an assessment, completed fatigue scales and an autonomic symptom scale. Next Monday I see her again to see if there has been any quantifiable change. By then I should be over this bug and the affects of the procedure itself (pain and fatigue) so I should have a clearer idea.
Most of the literature surrounding CCSVI is related to MS, but just today I saw a Youtube video of a guy with Lyme disease who had been diagnosed with CCSVI and had the angioplasty. Interestingly a lot of the symptom relief he talked about I have also had. Apparently there are about 5 Lyme patients who have had this done now. There are currently studies being conducted to determine if CCSVI exists in patient groups other than MS, and the results of angioplasty in these groups. So far I'm the only person I know of with Bob to have it done, which is kind of exciting and kind of scary. I'm not suggesting that others go out and get tested for this, for me it only became an option after I was out of all other options, but I will say for me it seems to have helped some of symptoms. Only time will tell how permanent the changes are, but until then I will be madly touching wood at every opportunity and marveling at the dust gathering on my puke bags.
So just for Jeff, I give you the Honeymoon Is Over, Tex Perkins and The Cruel Sea.
Wow... I cannot believe you had to feel all of that! I am the same way with medicines that keep you awake during procedures. I usually need 3-4 times the normal dose and I still remember! F bombs are the best revenge for this lol.ReplyDelete
I'm glad some of the symptoms are passing! Those are a lot of the same big ones with me. Nausea, arm raising... I think it's awesome you got to stand in the shower!!!!! I'm a shower chair girl obviously too lol.
I notice that when I get sick with something, it either makes my pots symptoms way worse, or almost masks them a little, so hopefully you'll find more benefits from it once that dreaded virus is out of your system. Sorry to hear they couldn't get to the 12 mm though, but if it helps, then I suppose it will still be worth it! Glad to see you back :)
whoooo hoooo!!!! good bye to nausea (touch wood, touch wood, touch wood!)ReplyDelete
that's crap that you remember the surgery. wow this sounds very promising. do you know any other bob patients that are going to have this done/testing for it?
i'm very happy that there is some symptom relief for you!
Boo and yay. Mostly yay. I mean YAY! You feeling better at all makes me happy. You'll remember it less eventually, right? For now, celebrate with something yummy that won't make you nauseous. *slurp*ReplyDelete
I'm liking the improvements you listed! Good news! As for your Jeff experience, all I can say is: you are my hero!! What an ordeal. But I agree with you that there is nothing like the blissful relief bestowed by a long delayed pee. It really could be classified as one of the joys of life. Ha!ReplyDelete
Yikes. What an entry, woman? I'm so happy your procedure is a)over and b) has had some positive effects so far despite the whole of Australia getting to check out your lady bizness. The thing about docs is, yes, so they see ladies' lying there in the nip every day, their lady special places sitting there for all to gape at, but the thing they forget is, the lady in question does NOT display her delicate flower every day and therefore, they really ought to be more aware that people are embarrassed or uncomfortable in such situations. They're always so 'business as usual' instead of taking some precautions to put you more at ease. PAH!ReplyDelete
So, now you've assassinated Jeff, it's time for Bob. You're quite the killah. :)
Seriously though, I'm so happy you're doing a little bit better. The migraines thing itself is huge, no?
Now you just need to shake that stupid pestilence. Damn coldy flu bug thingies.
Ash - I've had quite a few messages now from other Bobbetts saying they have the same problem with anaesthetics. Something I will remember next time and demand a higher dose. I know you can get that with EDS, but I've never been diagnosed though I have many features as does my youngest rug rat. 8 days no nausea is truly brilliant :)ReplyDelete
Anon - I don't know of anyone else with Bob being tested. It's only a fluke that I have a friend with MS who had it done so I was aware of it. Now that they are finding it in other disorders, with similar symptom relief (fatigue, brain fog, etc) it may be more of an option to look into if you're not getting relief from traditional treatments, which I certainly wasn't. Thank you for all the wood touching :)
Elly Lou - Maybe it's like childbirth and it fades with time so you're suckered into doing it again. I do think Kenneth's comforting presence was the key to stopping me crying in the corner with fear beforehand. I am certainly celebrating the no puking, no jack hammer in my head.ReplyDelete
Xerphile - I know peeing after a delay is bliss. There have actually been studies done that show if you're stopped from peeing your mental skills are poorer. It's a bit like the first post pain killer poo, you can hear the hallelujahs from the loo. TMI?
Veg - The lady bits thing gets me too. The nurse who shaved me announced that she'd been elbow deep in groins all day, so I'm sure mine was just another bit of pasty hairy stretch marked flesh to her. But dammit I want to choose who sees my love petals and when.ReplyDelete
No migraines is worthy of dancing, in fact I may put down some cardboard on the floor and break dance the day away. :)
TMI but still worth a mention for the sake of a good laugh!ReplyDelete
Xerphile - given the amount of shower assessments you've endured is there such a thing as TMI anymore?ReplyDelete
Can't believe you were conscious through all of that. You're one brave soldier! Thanks for keeping us all up to date. Sorry am such a slack commenter but I do read all your posts. Love your new blog header too.ReplyDelete
I'm really sorry you had to endure all of that. Did you tell them during the procedure that you were feeling everything? If so, they should have stopped and gave you more meds. That is just practicing bad medicine and it makes me mad, mad, mad for you. However, I AM very happy for you in that you are starting to see some relief from your 'Bob' symptoms. I am very interested to hear how you continue to progress. I would be extremely elated to get rid of my nausea and vomiting. It is one of the worst symptoms I have.ReplyDelete
Well, take care of YOU and don't push yourself too fast!
I am awestruck by your courage and humor in the face of such an invasive procedure. As a former migraine sufferer (& I say former with fingers crossed), I know how debilitating they alone can be.ReplyDelete
Had to look up "TMI" again. My short-term memory sucks. Since I grew up in Pennsylvania, U.S., TMI always makes me think Three-Mile Island, the nuclear power plant accident way back in 1979 (had to look the date up, too).
Greenwords - thanks for taking the time to comment. I"m not the best commenter either, some days I just can't get my mind to go past "great blog", and I always want to say more than that.ReplyDelete
Teresa - my problem was that I was told they'd be able to talk to me throughout but I wouldn't remember so I kept thinking I wouldn't remember any of it. I did say "what drugs?" one time they asked and they gave me more but it just didn't want to work. The nausea and vomiting thing is huge and I really happy about it as I hadn't even considered that could be helped by this procedure.
Ginny - HA! I hadn't even thought about 'TMI'. I remember reading about the Three Mile Island event but it wasn't the first thing that came to mind. LOL No migraine is a cause for celebration!ReplyDelete