Blister Aneurysm Survivor with wide neck residual under clip

Hi Everyone,
In 2016 Robert Spetzler (Barrow) clipped what he called a very fragile and treacherous left supraclinoid blister aneurysm. I went into surgery believing I had a saccular aneurysm (I am so grateful this did not rupture as most blister aneurysms do), and what was supposed to take 4-5 hours took 7. He reinforced the clip with cotton and muslin, and felt that the aneurysm had been obliterated. Every year, for the last five years, I have had an MRA, CTA or both. All scans have shown no residual flow; albeit there was artifact from the clip. After Spetzler retired, I was not sure if I wanted to stay at Barrow or move to Bernard Bendok, who is the the Chair of Neurological Surgery at Mayo. At my 5 year anniversary I was contacted for a follow up angiogram, and decided to have this procedure done at Mayo on March 5th. Unfortunately, Bendok discovered a 2 mm wide neck residual underneath my clip. As we have no baseline angiogram, he has no way of telling if this has grown. After watching my surgery video, he feels the residual is thin walled and is at likely risk of rupture. He will be showing me a surgical theater rendition of my angiogram on April 8th, and has suggested that the FRED flow diverter would be the optimal treatment. I am wondering if there is anyone else with a blister aneurysm? How were you treated and was it obliterated the first time? Has anyone been treated with the FRED FDS?

Welcome @phoenix33 to our group! And yes, youā€™re very lucky that bugger didnā€™t rupture! Thereā€™s so many different terminology for the same thing. I often wish the experts would speak all the same medical language, big sigh.

I have a 5mm multi-lobed aneurysm (at the LICA bifurcation) which I believe is also called a blister aneurysm. Dr. Quintero-Wolfe at WFBH quit counting at 24 daughter sacs. It ruptured, granting me a 26 day stay in Neuro ICU, and the beginning of my education in cerebral aneurysms. Since the initial rupture which was coiled, a second attempt was coiled, a third attempt coiled with ballon assist and this last go was with a Neuro-form Atlas Stent and of course more coils. With every attempt to get the little bugger under control, thereā€™s the before and after angiogram usually. This last one, she didnā€™t need the before, the MRA showed her all she needed to know! I will have the six month follow up angiogram in June.

We do have many members who have had the FRED used, Iā€™m not one of them as itā€™s due to location. For those not familiar with the FRED, hereā€™s the website FREDā„¢ | Microvention

I hope those that have had the FRED installed chimes in. As for blister or multi-lobed aneurysms, thereā€™s not many of us but for those few who have one, I hope they reply as well.

All the best, and again, welcome!
Moltroub

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Hi there! Thank you for the warm welcome! Do you live in NC? My husband did his fellowship at Bowman Gray/WFBH. He said it is a very good program and he enjoyed his time in NC. He does not know who Dr. Quintero-Wolfe is but he is a rheumatologist, not a surgeon.

This is what the literature states about BBA and is consistent with what Spetzler told us " Blood blister-like aneurysms (BBAs) belong to a well-defined category of intracranial aneurysms, also known as ā€œnon-branching aneurysmsā€, since they do not develop at the junction of two arteries. The most frequent location is the distal internal carotid artery. They are very rare with a frequency reported to vary from 0.3% to 1% of all aneurysms and affect predominantly women." ā€œA prominent characteristic of blister aneurysms is the marked weakness of their wall, a feature that not only reflects the unique pathology of these lesions but also predetermines their high rupture risk, aggressive clinical course, and tendency for rapid growth and progression.ā€

I did not have any daughter blebs, and it was tinyā€¦2 mm. My understanding is that blister aneurysms are always tiny, and that they are a thin layer of adventitia which is what makes them so treacherous.

I cannot imagine having 24 blebs/daughter sacs. How incredibly unnerving. I am guessing you learned about your aneurysm because it ruptured? I hear stories like yours and it makes me feel so lucky. We just need to get this FDS in so it stays that way!

@phoenix33, yes maā€™am I do live in NC, about an hour or so west of Winston-Salem. I grew up in CA, joined the USN and when I received my discharge in the mid 80ā€™s, my Dad encouraged me to move to NC as the unemployment rate was incredibly low back in the mid ā€˜80ā€™s. And yes, WFBH is where Bowman Gray Medical School is located. They used to call the hospital, just by ā€œBaptistā€, now theyā€™re calling it Wake Forest Baptist. I took another member of the church I used to attend to Baptist for a shunt replacement back in the ā€˜90ā€™s and the amount the hospital has grown between then and now is phenomenal! I can honestly tell you the doctors I have now, are mostly graduates of Bowman Gray and they are some of the best I have been privileged to be under care.

I would imagine your husband would probably not have met Dr. Stacey Quintero-Wolfe when he was in his Fellowship program, unless he was in during 2013 and after. She had just come from Tripler Army Hospital in HA a month or two prior to my rupture. I was actually born at Tripler which is amazing to me. They have it named as Tripler Army Medical Center now.

The first time I recall meeting her, she had come into the Neuro ICU unit and I was struggling to get out of bed hollering ā€œAttention on deckā€ I didnā€™t know she was an officer in the USN, but apparently I could feel the difference and energy when she entered on the other side. When she came into my room, she simply told me ā€œAt easeā€ and the RN was relieved as I responded immediately. We had a great laugh about it.

Thank you so much for educating me on the literature! I truly appreciate it. I recall an author who wrote something like ā€œknowledge is the only thing that canā€™t be taken awayā€ or something close. And yes, I did rupture with a Fischer Level III bleed which is >1mm blood in the subarachnoid space. I also had vasospasms for 21 of the 26 days whilst in Neuro ICU. So, for me, the author was incorrect. Iā€™ve had to relearn many things as my brain just wasnā€™t connecting. The one thing I didnā€™t have to relearn was my love of learning. I had never known about cerebral aneurysms, luckily, I did have a good understanding of the brain having been a student at Chico State in No. CA in their Psych program. I told Dr. Wolfe one time when she was teaching us about the Circle of Willis, that he was my ā€œhappy, little dancing manā€ and began reciting the arteries as if I was still in Bio Psych class. It had been over 40 years since I was a student. All she said was she had never heard it called that before. LOL. Dr. Wolfe and her staff are a great team for me, they love teaching, I love learning and they never balk at the strange questions, statements or theories I come up with. Dr. Wolfe had hired a new NP Ryann McGough who actually read my medical record! At our first appointment with her, she was asking about my future goals I think, I told her I hoped I developed Alzheimerā€™s prior to brain cancer (I canā€™t count the number of CTā€™s for my brain on both feet and hands). She straight faced corrected me and said, no itā€™ll be dementia, not Alzheimerā€™s. I finally got it when we got back to the car and we laughed all the way back home. The risk for both increases exponentially when someone ruptures. Ms. Ryann always keeps her promises to me, in fact she came up to me at my last procedure so I would see that she was there before John gave me the happy drugs. The PA that used to work with Dr. Wolfe, Mr. William was always there, but the NP that replaced him was never there for angiogram or procedure. It was a relief to see Ms. Ryann come up and say hello to me. Iā€™ve always had the same support staff in the procedure room under Dr. Quintero-Wolfe but they were all new to me, even Ms. Helen, the scheduler, wasnā€™t there (she retired). Thereā€™s a certain feeling of comfort when I know the people in the room who are going to work to continue to save my life, I cannot explain it well.

So once again I have rambled too much and probably shared too much information. It is a byproduct of my brain damage, or so it seems. If I ever move to AZ and your husband is still working, I would transfer from my wonderful Rheumatologist to him, most definitely!

All the best,
Moltroub

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Wow, what an incredible story! I enjoyed reading it, and you did not ramble at all! I understand the comfort you feel from having a consistent support team. Your ā€œAttention on deckā€ comment made me LOL!! Why does it seem that the ICU staff is so hit or miss? I did read one of the Barrow blogs, and I would agree with others that the ICU nurses at Barrow are mediocre at best. I called in the night manager at one point and said she needed to find me a different nurse. This is one of the reasons I moved over to Mayo. Another reason, and I hope this does not come across wrong, but I did not want a resident doing my angiogram. Even though it was just a diagnostic. I met the chief resident who assisted Spetzler prior to my surgery, and I said ā€œplease do not take this wrong way, but I must request that Spetzler does the actual clipping.ā€ Thank goodness, because I ended up having that blister aneurysm.

I am so glad that you are doing well and that you are in good hands and trust the folks at Wake Forest. I did not know there was a correlate with rupture and Alzheimerā€™s/brain tumors. You know what is so interesting to me? Everyone I know with an aneurysm has either more than one or they have something else going on with their brain. If you read my profile, you will see the laundry list of whatā€™s wrong with mine (almost all is pretty benign, but I do wonder what my mother did to me in uteroā€¦kidding!). My maternal great grandmother died from a rupture and so did my maternal great aunt. My mom refuses to get scanned. She believes it is in Godā€™s hands. I say God would want her to get scanned!

We meet with Bendok on Thursday and I will keep you posted. I am excited to see this 3D surgical theater animation. I am going to try to video record it.

Kim

@phoenix33 How exciting to see a 3D image! Medical inventions are astonishing and astronomical arenā€™t they?

I have been blessed by the Universe by having excellent RNs. In ICU there was just a CNA whom my BH went off on a few times and then I was findable to verbalize she wasnā€™t allowed any where near me. The uneducated woman kept using some strong perfume smelling shampoo that I was highly allergic to. Despite the allergy attacks and our requests to stop using it, she thought she knew better. I went anaphylactic the last time she was allowed in my room. My favorite RNs were Ms. Kenna who struggled to keep the Triple H therapy at the correct dosage for my BP and Mrs Flora Shaw who gave me a proper bath, took her breaks with me so I could see the sun and even negotiated with me for a real meal if Iā€™d allow them to put the C-line in and the atrial line in. Not to mention Ms Maria and Ms Eden, my wonderful night RNā€™s from the Philippians. I could go on and on with the fantastic RNs, Med Students, and MDs. There was one nitwit of a doctor who mustā€™ve been a Prof who I absolutely couldnā€™t stand. He thought his feces had no smell, was extremely hard on the female staff from RNs to MDs. He once screamed at 2 of my favorites, EB and Dr Walker right outside my curtain. He wasnā€™t allowed to come back in my room until he learned proper respect or so I told him LOL. He kept trying to stop me cold turkey with the Triple H drugs and I was getting precariously close to dying each time. Ms Kenna would have to increase it back up with another Drā€™s orders. EB, Dr Walker and I discussed it, with me suggesting they wean me off it. They apparently discussed it with Dr Wolfe who agreed. The next day Dr Nitwit said it was his idea. The 3 of us just rolled our eyes at each other LOL

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Hi Kim - Welcome to a place where everyone likely wishes they didnā€™t need to be. I had a blister aneurysm located on my carotid artery behind my right eye rupture in 2018. At the time, I was the sixth patient to have presented at Massachusetts General Hospital with such a case. My surgeon told me that prior to operating he had discussions with experts all over the world in a similar ā€œsurgical theaterā€ before deciding how to proceed. I guess that tells you both the rare nature of the type and location of the aneurysm as well as how many people survive following the rupture. I was treated with what was told to me to be a pipeline embolism flow diverter. It was described, or I think of it as, a mesh patch - like a patch you put on your screen to keep bugs out - that was laid over the top of the aneurysm. The result is that the blood flows through the diverter to prevent feeding the aneurysm. I just had my 2.5 year angiogram and I am happy to say that the aneurysm has all but disappeared. My surgeon was very pleased to report that everything looks great. That said, while there is no evidence of aneurysm I am experiencing tinnitus in both ears that is very annoying. My surgeon is certain that there is nothing in or around my brain to cause this, but it was not a problem that I remember having before the aneurysm. I say ā€œthat I rememberā€ because I have some short term memory problems that are the result of the rupture.

I wish you success with your surgery and encourage you to move quickly because my understanding is that the nature of the blister is that the wall of the aneurysm is very thin which makes it prone to rupture and if you can avoid the rupture - or even reduce the risk - I strongly recommend that. God bless.

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Hi Brian,
I donā€™t know if you saw my original post, but this aneurysm was treated via open surgery in 2016 by Robert Spetzler (Barrow). He clipped what he called a very fragile and treacherous left supraclinoid blister aneurysm. I went into surgery believing I had a saccular aneurysm, and what was supposed to take 4-5 hours took 7 plus. He reinforced the clip with cotton and muslin, and felt that the aneurysm had been obliterated. Every year, for the last five years, I have had an MRA, CTA or both. All scans have shown no residual flow; albeit there was artifact from the clip. After Spetzler retired, I was not sure if I wanted to stay at Barrow or move to Bernard Bendok, who is the the Chair of Neurological Surgery at Mayo. At my 5 year anniversary I was contacted for a follow up angiogram, and decided to have this procedure done at Mayo on March 5th of this year. Unfortunately, Bendok discovered a 2 mm wide neck residual underneath my clip. As we have no baseline angiogram, he has no way of telling if this has grown. After watching my open surgery video, he feels the residual is thin walled and is at risk of ruptureā€¦

I am so glad you survived! Barrow is one of the largest programs in the country, and they only see 1 or 2 blister aneurysms a year. I do not know of any other survivors, so I am very glad to meet you! If this would have happened in the last couple of years, I probably would not have needed open surgery, because they have made so many advances with flow diversion. The data on blister aneurysms looks very promising. I have a review article I can send you that explains the MOA of flow diversion. It is absolutely fascinating! Are you on antiplatelet therapy? I did not rupture, but I know with those that have there is a fine balancing act with dual or mono antiplatelet therapy.

I have short term memory issues too. I think it might be due to all of the manipulation Spetzler did (drilled the clinoid, cut through the distal dural ring, removed dura that had adhered itself to the aneurysm etc). My biggest issue is remembering movies or shows I have never seen before. I asked my husband 4 or 5 times if we had seen the Black Klansman. I finally remembered that I had asked him, but I do not recall the movie.

Kim

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Hi Kim - Yes I saw your initial post and read most of the subsequent replies. MGH is also an epicenter for aneurysm treatment. In fact the Brain Aneurysm Foundation was created by Doctors and Nurses at MGH, who have since moved on to a neighboring hospital.

Believe me, I know how lucky I am. That alone has a huge impact on the rest of my life. As for my recovery, to look at me, you would never know of my medical history. As I mentioned, I have some memory problems and struggle with noise sensitivity and fatigue. The tinnitus is troublesome, but all are a small price to pay knowing what could have been. When I arrived at the hospital they werenā€™t sure I would get through the night. Then, they thought that I would be in NICU for a month or more, leaving the hospital only to arrive and receive therapy from rehab hospital for several more months. In the end, I went from NICU to Neuro maintenance and discharge home after three weeks in total. I received at home therapy for a months nd then outpatient for eight months. I would say that I am 95%. Only 5% of aneurysm patients arrive to my level of recovery. I am truly blessed.

In case it was not apparent, my surgery was via angiogram as well. I did not have a craniometry. I am not on antiplatelet therapy, though I am now on a baby aspirin for the rest of my life. I will have MRA or angiograms now every few years. But that is it. Thank God!

I had to chuckle when you site the example of the movie and your memory. I am constantly asking if we have seen something already only to hear a resounding ā€œYES!ā€. Oh well.

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This doesnā€™t address your chief question but I did just want to briefly chime in to say Dr Bendok was my neurosurgeon for my aneurysm clipping back in 2014 and Iā€™m incredibly grateful to him. Heā€™s just amazing and has incredible bedside manner and incredibly hardworking. From my experience, I think you will be in very capable hands. My very best to you and your loved ones.

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What an amazing story! I read on another post that someone else had developed tinnitus. I wonder if they truly know there is no correlation? If there at least 2 of youā€¦

The movie thing is odd, but I always tell myself it is not necessary to store that information as there are other things that are much more important to remember. I am really good with remembering numbers for some reason.

I am so glad we found each other on this site. I wonder if there is anyone else with a blister aneurysm. I must say it is absolutely unnerving walking around with a residual. The worst part is the NS does not know if it has grown because we have no baseline angiogram. Do you know of anyone that has ever been told observation was ok with one of these? I cannot imagineā€¦

Thank you for sharing that! I have never met anyone who was treated by him, so this makes me feel so much better. Were you treated at Mayo? If so, what did you think of the ICU nurses? My Barrow nurses were less than fantastic.

I was treated at Northwestern in Chicago while he was still there. He has a commanding presence and everyone respects him so things are done effectively and timely! He also has a very calming presence as well so heā€™s able to simplify all the commotion and complexity and focus on whatā€™s important.

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Yes, I noticed that about him right away. Excellent bedside manner. He first saw me in 2018 after Spetzler retired, and ironically, he wanted me to have an angiogram then. I was the one that pushed back, so we did a CTA of the head and neck and no residual flow was seen but the clip was throwing off artifact. We will never know if this has grown, how quickly, or if it has been hanging around since my craniotomy in 2016. Regardless, I am in good hands!

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Hi Moltroub, Brian, and Beary,
So we had our video conference with Dr. Bendok today, and unfortunately, the aneurysm has grown 2 mm since it was originally clipped in 2016. It was very clearly delineated on angiogram and appeared that approximately 50% is above the clip and 50% below. With this being a thin-walled blister aneurysm we will be moving forward as quickly as possible. I know growth is bad and rapid growth is even worse, so this will be scheduled ASAP. Hoping to hear from Dr. Bendokā€™s nurse tomorrow or Monday. This is so unnerving. I feel a bit numb and have tried to be on the phone with friends until my husband can get home from work. I am grateful we found this out now!

Kim

@phoenix33, I am glad you were able to find it before the bugger ruptured. Let us know when youā€™re scheduled and what we can do for you. I usually get on in the mornings EST, but I will try to come on later today. I hope @Beary @BrianS as well as others will continue to support you. Remember we are here for you Ms. Kim!

All the best,
Moltroub

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Hi Moltroub,
Sitting here on pins and needles waiting for the nurse to message me in the portal with a couple of datesā€¦I have a feeling it will be Monday. Bendok did say to make sure to tell Lauryn (nurse) that I need to be scheduled as the first procedure of the day; even if it means waiting an extra week. The only reason I can think of is that he doesnā€™t want us to have to wait around all day in anticipation. Can you think of any other reasons? I am so overthinking this! Apologiesā€¦just a bit anxious.

Sorry I didnā€™t get back on last night. It became a bad day for me. If you hadnā€™t heard back yesterday, then most likely you will have to wait until Monday. There have been a few times Ms. Ryann RNP, actually sent a message through the portal on the weekend but itā€™s been when she pulled weekend duty. Apparently at WFBH, the doctors and their NPā€™s help cover the weekends. For me itā€™s been a good system, whatever they do.

I can sure understand being anxious! I usually do busy work to keep my mind from dwelling on things too much. I do allow myself permission to think about things but not all day. For me, itā€™s a way of acknowledgement and control. I can control cleaning the house or doing yard work, things like that. Yet, I need to acknowledge what is or has happened to avoid slipping into denial, anger, grief, etc. but I donā€™t want those things controlling me. I hope that makes sense.

As for being the first patient scheduled for the day, I have always been that patient, except once I think it was. There have been a few times when I was pushed back because of an emergency and I have never minded. Dr. Wolfe knows that the way I look at things, I was an emergency once and would prefer her to operate on someone that is in a life or death situation in the moment, then to follow a schedule. As I recall, once was for a very young child, and once she was called in to assist for a woman who was in medical crisis. Both survived. And that makes me elated. Ms Helen the scheduler she used to have, told me once that besides my willingness to accept the fact that others may have more need of Dr. Q-W, I can be a bit more difficult case due to my aneurysm location so they like to book a bit more time in. The longest time was a bit over 7 hours for the rupture, the shortest time was around 4. I think that was the balloon assist. Either way, I usually take a book or my tablet, most times both so I can do things other than lay around getting more anxious. I also like to tease and joke around with the staff in pre-op. Time flies with laughter!

Remember to do some relaxation breathing, mindfulness, a walk about.

All the best,
Moltroub

HI Moltroub,
Well as luck would have it, Lauryn called yesterday around 3:30 pm and informed me she had called in an Rx for Plavix which I needed to pick up ASAP and take first dose as my procedure is scheduled for Monday, April 19th (which is now 9 days away). I am a bit overwhelmed that this is moving so quickly. I feel unprepared but also blessed that he is taking care of this as soon as possible. The growth is an unnerving piece of knowledge that I am glad we have, but very scary nonetheless. There is so much I need to show my husband as I am the bill payer, housekeeper, cat feeder, budget tracker, vacation planner, grocery shopper, cook, etc. I stopped working after my craniotomy so I literally took over everything. He sees patients (which is a huge job, donā€™t get me wrong), but I do the rest. You go into these things believing all will go smoothly, but I do not want my husband left in a lurch either. And there is my sonā€¦

My only experience is open surgery, so I am curious as to what your thoughts are on recovery? What is your own experience, and what have others shared? I am guessing fatigue from the anesthesia? Can I be running errands/driving after I go home? Has anyone had issues with bleeding/stroke in an unruptured aneurysm that was treated via endovascular procedure (this one I am concerned about)? Spetzler told us that recovery for a craniotomy is 6 weeks. Seriously? Try 6 months plus!!
Craniotomies are a tough recovery, not to mention pain from where one of the head holder screws was in the back of my head (they must have hit a nerve). I have to be on DAPT for 1 year. Has anyone on DAPT had TTP or any other major issues outside of bruising? Sorry for all of the questionsā€¦people keep telling me not to think about it. I do like your advice of trying to set aside specific time to think about this, but to try to keep oneself busy. My issue is I have a passion for researching things, so I have read every abstract, review article, clinical trial on blister aneurysms, on blister aneurysms with FRED FDS, on the MOA of flow diversion. etc.

I laughed when you said you joke around with the pre-op staff. I do that too! I really hope I get good nurses this time. Someone told me you are treated like a movie star at Mayo, so I hope that is true. Everything you have read about the Barrow ICU/nurses is true. It was an awful experience. I am a good friend of Natalie Niekro and she will be there with me. I do not know if you have heard of her, but she started the Joe Niekro Foundation in honor of her father, who died from a rupture in 2006. She has 2 brain aneurysms herself, and both are being watched at this point.

When I feel myself getting anxious, I try to close my eyes and focus on the ā€œthird eyeā€. This usually helps a lot.

I will keep you posted, and thank you!!
Kim

@phoenix33, you just reminded me I need to post something I found for my niece in dealing with her father, thanks!

I do know about Ms. Natalie! Several years ago I had reached out to the Niekro Foundation about anything they might have on multi-lobed aneurysms. Like you, I have an obsessional urge (I call it) to research as much as I can about things. Ms. Natalie was so very kind to answer back personally and then had someone else, I am sorry I forget her name, to reach out to me. They had asked me to join their support group, but I had more than I could do here and kindly denied the offer. But over the years I have suggested to many members on the West Coast to see if the Niekro Foundation has any support groups in their area as they have many. Iā€™ve also suggested the Niekro Foundation a few times to my Neurosurgeon for various reasons. When we lobbied for BA Awareness in DC, I had suggested the two Foundations join forces, but politics arenā€™t always good bed fellows I guess. If you remember, please tell her I have never forgotten her kindness and encouragement, it came at a much needed time. For those unfamiliar with the wonderful foundation, here is a link https://www.joeniekrofoundation.com/

As for recovery from coilings, for me itā€™s been varied. Letā€™s not count the rupture since that gave me a 26 day stay at what I call ā€œspa treatmentā€ where I didnā€™t even have to wipe my own arse. The wonderful RNs I had did everything for me and there are still several I hold dear to my heart. Obviously, Iā€™m still recovering from the rupture.

The more times I go under anesthesia, the more difficult it is for me. Dr. Quintero-Wolfe and I discussed it in depth. She always gives me the time I need, a rarity I have discovered here on this group. For coiling #3 with the balloon assist, she used very little anesthesia and I woke up in recovery bright eyed and bushy tailed. The recovery RN wasnā€™t so great, he had been asked to assist in a crisis and refused, he refused to tell BH I was awake. He bruised my wrist horribly taking my pulse which I told him repeatedly he was doing too hard. When we told Dr. Wolfe about it, she was none too happy. Apparently, he hadnā€™t told her staff either, so she didnā€™t know.

Coiling with the Neuroform Atlas Stent was a swift recovery as well. When I would get another repair, it was an overnight stay in Neuro ICU and home the next day. I have to have someone stay with me for 24 hours, this is not negotiable and donā€™t try to do otherwise. Besides the after effects of anesthesia, there are other risks as well. I am limited on the amount of weight I can pick up for what feels like forever but may be just a couple of weeks as she has always gone through the groin. The recovery time has been about the same as the recover time for just an angiogram. We found that it would start taking months for me, until the time she used less anesthesia. With the stent, I think she used less anesthesia and more pain meds.

I understand from Ms Ryann, the RNP, that the next time I have an angiogram Dr. Wolfe will go through my wrist and the time in hospital will only be an hour! I think she said no weight limits as well.

We were all concerned about the Plavix as I have developed dermatomyositis. Ms.Ryann reached out to my Rheumatologist for the ok prior to putting me on it. It wasnā€™t pretty, especially during a flare up. I forget what the Saran Wrap like seal is they use to cover the plug in the femoral artery but it has scarred me. The blood blisters that formed scared BH to no end. BH actually called the Resident on Duty who had never heard of such a thing. We didnā€™t know what we should do if they popped and started bleeding. We hoped that the pressure of the cover would keep them from opening up and it did, or at least they never popped.

I had a huge hematoma from one angiogram that kept me on light duty much longer than the others. So thatā€™s something to consider, if theyā€™re going through your groin. Because of the location in the femoral artery, it kept me from driving for about a month or longer. Because of my rupture, I have more limitations after a procedure than those who didnā€™t rupture. I think most of our members are back at it within two to four weeks. Some will experience migraines, which as you know from reading here, the doctors all say it canā€™t be from what they did. However, I think the correlation is rather high to ignore. Perhaps one day there will be studies done.

One thing I do know is you will improve faster if you stay hydrated and consume massive amounts of protein. Try for a minimum of 90 gms of protein a day, more is better if you can. In fact, my Rheumatologist, Dr. Jill McClory, just asked me a couple weeks ago what I do during a flare up. I answered same thing I do for my brain - hydrate, hydrate, hydrate and eat protein. She looked at me oddly but wrote it down smiling. Dr. McClory also gives me as much time as I need. My aphasia and past stutter made appointments a bit longer, but she is kind enough to wait and not try to give me words that may not be the one Iā€™m trying to say. When people do that, my brain just stops processing.

Luckily Dr. Wolfe only had to use one stent so I got off the Plavix. Iā€™m on 325 mg aspirin for a few months more and if everything goes right, they will drop me down to 81 mg for the rest of my life. When I inquired if they will be checking me for aspirin toxicity, they hadnā€™t heard of it. Itā€™s something I learned here. I will ask my PCP to do it when she does the yearly physical.

Did I answer all you questions? I need to find where I put the article from NIH on getting your affairs in order.

Thanks again,
Moltroub