Boston area treatment

General Success Stories
1

Here is my success story: After experiencing imbalance and a feeling of pressure and headache upon bending, imaging revealed I had a left paraclinoid ICA aneurysm of 8.5mm. After researching my options, I visited MGH and Tufts Medical Center and one other hospital for opinions, and my decision was an easy one. I was certain that Dr. Adel Malek of Tufts Medical Center was the doctor I wanted to perform the procedure. Besides Dr. Malek's outstanding educational background, training and achievements, my family and I were so impressed with Dr. Malek's compassion, humanity, and patience. I am so blessed to have found this exceptionally gifted doctor who gave me my life back.

After personally performing a diagnostic cerebral angiogram the day before the procedure to ensure that nothing had changed since the first angiogram done elsewhere two months earlier, Dr. Malek determined that the aneurysm would best be treated with stent-mediated coiling. He performed the procedure on August 10, 2011. Everything went well and as planned, and I quickly regained my strength and left the hospital Saturday morning, just three days post procedure and feeling great.

When patients seek medical attention in the Boston area, they may focus on the larger medical institutions that receive more press. While Tufts is smaller than MGH and other Boston hospitals, their neuro surgeons are tops in their specialties and the neuroscience equipment is state of the art. We actually felt that the size of Tufts was a huge advantage, as the feeling we got at Tufts was more personalized and less frenetic. I found my treatment at Tufts exceptionally professional and compassionate, and the level of attention and care at all levels was superior to the larger hospitals I visited. Scheduling, phone inquiries, call backs, pre visit counseling with Dr. Malek's outstanding staff was excellent. Every Tufts employee we encountered was professional and kind, from everyone in admitting, records, testing, and patient care. Even the transport gentleman insisted that he take my husband and me directly to our car in the garage to assist us beyond the door upon my discharge.

Tufts recently opened the new state of the art Michael Neely Neuroscience Center where I recovered from my procedure. The entire staff was specially selected for this critical care and step down recovery area. The nursing care that I received went well beyond my expectations. I was constantly monitored by caring and compassionate professionals.

http://www.tuftsmedicalcenter.org/Giving/enews_may2011_neuroscience

I highly recommend Tufts Medical Center and especially Dr. Adel Malek if you are seeking treatment in the Boston area.

Do your research, seek opinions, and ask the important questions. But after all of this difficult decision making, I have been reminded, once again, to trust my instincts in making important decisions. I thank God and my dear friend Diane S. for guiding me to Tufts and Dr. Malek.

Good luck to all, and I pray that you will experience a positive outcome as well.





2

Good to hear you success story. Thank God. wha type of aneurysm did u have

3

I had an unruptured 8.5 mm aneurysm on my left internal carotid artery.

4

Thank~you for sharing your story...!

Fondly, Colleen

5

L:ily, thank you for your success story...we need more and more of them...

Pat

6

Lili

What an awesome tribute to your docs and such success, good for you!! I am recently diagnosed, too, and am talking to Chris Oglivy at MGH, he suggesting the PED, not coiling, its all surreal to me. Tell me tho, what was your stay in the hospital, as far as after care, and how are you now? I would love to chat w/you if we could.

Thanks

Cynthia

7

Lily,

Thanks for sharing your story... it's great to hear good things about annie survivors!

Best wishes,

Linda

8

Hi Cynthia-

First of all, sorry for not getting back to you sooner. I did not get the usual email that someone had replied to the post. I understand the stress you must be feeling now regarding all the decisions you are about to make. I had the worst headaches until I got through that period of time and realized the path I wanted to take, and then the headaches miraculously abated.

The first doctor I saw said I was a perfect candidate for the Pipeline and he was very enthusiastic about it. I WAS intrigued because the technique/device seems do the job efficiently. My problem with the PED is that it is so new and thus has virtually no long term data. After I researched the Pipeline as thoroughly as I could, (and understand that I have no medical training) and reading the actual study that was submitted to the FDA for Pipeline approvaI, I realized that the testing was very limited (31 cases I believe) and these were patients in which other treatments such as coiling may have failed already or were not feasible.

When I met with Dr. Ogilvy at MGH, he had not yet studied my films with the team to determine which course of treatment he would recommend.

If your aneurysm is located on a branched area of an artery or has other challenges to treat, then the Pipeline may be indicated in your case. I would ask your doctors why they would not use the more traditional approach.

In my case, my aneurysm could be safely treated using coiling and a stent, so I felt, why take the chance. In a few years, maybe everyone will be using the Pipeline, but for now, I preferred to take the more conservative approach which Dr. Malek recommended.

My experience and care at Tufts was amazing on all levels as I stated before. Once you take those couple of breaths, it 's over before you know it and you are being wheeled to ICU. The toughest part for me was all the lying completely flat you have to do until the femoral artery is healed. As a precaution, one port was left open until the MRI was done the next morning to ensure that everything looked good. Then the process began for removal. That process involves stepping down the drugs, and can take a very long time. I was wheeled out of surgery around 3 pm on Wednesday and did not sit up until Friday morning.

The steroids I was given to prevent post op swelling made me so wired I could not close my eyes and I did not sleep at all until Friday evening. By that time I had been moved to the regular recovery area with a more comfortable bed, but still I couldn't sleep so I was offered an Ambien or a Benedryl. I took the Benedryl and got my first decent sleep in a long time.

I left the hospital Saturday morning. I was wheeled to my car and actually went into a couple of stores before the trip home. I couldn't believe how well I was feeling, but we did take it very easy. Again, the steroids jazz you. You are put on a very regulated schedule to step down very gradually. As I stepped down, I experienced a little more tiredness.

My surgery was exactly one week ago. I have rested a great deal, but I have also showered, walked out to get the mail, cooked a little bit, and returned many phone calls. I slept well last night, and awoke this morning with a huge smile on my face. After all the dark clouds, I had made it through the storm and I felt like dancing a dance of joy. I pray that you will have that dance too, Cynthia.

Please feel free to ask me anything; you will have many questions. I will check the page more frequently now. I posted because there are good outcomes, too. Once you get through this part, and this stage can be paralyzing, you will come to a point of some clarity where you will be able to make your decision. In the end, you will have to trust your gut and go into this with the most positive attitude you can muster. God Bless.

9

Hey, I just read your story and wanted to say congratulations! I also wanted to ask a few ?s if you are up to answering… do not worry if not ,I realize you are just recovering! Here goes I have 2 paraclinoid aneurysms that are small on the right internal carotid artery. Have been seeing Dr olgilvy at Mass general and he is clear they have to grow to be treated. I have felt rushed and not completely comfortable, but it is hard to know if it is the office or the situation that makes this all so hard. I was wondering if you know exactly where your aneurysm was on the ICA, l, How old you are (not being nosey just realize age really affects outcome I just turned 60) what did they tell you about this paraclinoid location, (DR olgilvy has mentioned there is a stroke risk for me with surgery in this area. Did anyone mention that to you?), did you have any vision problems before surgery and anything else that might be helpful regarding your experience and paraclinoid aneurysms. You are the first person I have read about that had one in this area and was very curious. Again I wish you the best in recovery and am so glad you are doing so well and the dark clouds have lifted. Kelly

10

Hey Kelly, we're the same age!

Do you know the size of the aneurysms? Actually there is a study out there that suggests treatment can be more risky in some cases than doing nothing but taking a watch and monitor approach. I believe 6 mm is the cut-off point, but keep in mind that other factors besides size do come into play.

The best advice I have is to seek second and third opinions. And if you are still not sure, seek a fourth opinion. Go to different hospitals. Get a feeling for the differences and find the place where you are most at ease and have the most confidence in the doctor.

Whether your small aneurysms can rupture would be the first question I would ask your doctors.

I sought opinions from six doctors, which included four neuro docs including a neuro ophthamologist. The training and approach each doctor takes is important and may be different. What you want is not necessarily a neurosurgeon, but rather a neurovasular surgeon, a neurointerventionalist, or even a neuroradiologist. My doctor specializes in treating aneurysms, and has amazing training, experience and credentials in this very specific area. At Tufts, this is what he does, and others in that neuro department are specialists in other areas such as brain tumors, etc. At some hospitals, you may meet with traditionally trained surgeons who may not be as experienced with the vascular and radiological approach. At this point in time, everyone is pursuing this approach, so you have to look at how long they have actually been performing the type of procedure you need. Ask each doctor you see how many similar procedures he/she has performed, PERSONALLY, and what is the percentage of positive outcomes? My sister suggested a great question to ask, "If you had to have this procedure done, who would YOU have do it ?"

As an aside, I discovered that a group of NYU trained doctors wrote the paper that was submitted for FDA approval of the Pipeline (PED). They have been flying to key hospitals to train other doctors eager to learn how to use this new device. In fact, the first doctor I saw said I could be his first Pipeline patient while the training doctor from NY oversaw the procedure. Call me crazy, but I wasn't comfortable with that idea. I didn't want to be someone's first, and I'd like the product to have more of a track record unless it's the only device that can repair me. In the end, I decided that since I did not have a problematic aneurysm, the more traditional approach was the one I was most comfortable with.

Hope this helps get you where you need to go, Kelly, and good luck!

























11

Dr.Malek took care of me at Tufts . I was originally operated on by Dr.Schirmer at Baystate Medical Center. I had a sah and he did a crani with clipping. He trained under Dr. Malek before comming to Baystate. I started to vasospasm and Dr. Schirmer had me transferred to Tufts for an angio .After I arrived I developed a pulmonary embolism and I stroked.I am lucky that I have come back almost 100% . I have trouble remembering much about my stay there, but I have memory of Dr.Malek and his laughing voice . He made me feel safe . He also kept repeating everything to me , as many times as I needed to hear . I can't say enough . The nursing care there as you said was exceptional. I received all there patience . I know I needed it.

12

Joan-

Sounds like you went through some scary stuff. I am so happy to hear that you made it, and I think you were so fortunate to have ended up at Tufts Medical Center with Dr. Malek. I know what you mean about his lovely manner. Ultra professional with extraordinary humanity. I did not feel panicky about my treatment once I spoke with Dr. Malek; he made me feel safe, too, so that I felt I could trust in his good judgment.

Nice to hear another positve story about the exceptional care at Tufts. I grew up in the the Boston area, so I was initially drawn to the bigger Boston hospitals that are famous world wide for good reason. I am so glad I went for other opinions. I hope people will realize that there are other great treatment centers with state of the art imaging and exceptional doctors, and to explore to find the doctor with whom you have the best feeling.

Sounds like in your case, Joan, it was not your decision to go to Tufts and Dr. Malek, but someone else's. A higher power, or luck of the draw, who knows? At any rate, thank goodness you have recovered so well. Joan, I wish you continued good health. Thanks for sharing your story.

13

First I want to say that I LOVE Dr. Ogilvy. He did my surgery in 2003 (clipping, left MCA) and also my mothers a few months earlier (she also had a coiling at MGH a few weeks before my surgery). Everyone’s experiences are of course different. At that time I loved his staff, from the office to his residents. I also had him do a second surgery 2 1/2 yrs ago to remove some screws and plates that were causing a lot of issues and fix some of the sunken in section of my head while he was in there. He was great. And on Friday when I got news that a new aneurysm was found on a recent MRA, I immediately contacted one of his office staff. It’s a very small one on the rt ICA and I’m not sure what the recommendation will be. Given my history and family history (and I’m only 2 wks shy of 43yr old), his advice to watch and wait may be different. I’ve been trying to search here and am not finding people with a new aneurysms that also have a strong family history to see if advice to have it treated is different even though it’s small (3mm).

14

Thanks, Donna for the feedback. That was reassuring. Sorry about the new aneurysm. I have spoken with some people who have had multiple aneurysms with a family history and have done watch and wait on small ones. One of my right ICA aneurysms is also 3mm will be curious what they say… I know age impacts surgery as well as location. One of mine is on the posterior wall which may complicate risk,that is just a quess though. It has been 2 years since my cta and Dr olgilvy said I could wait up to 4 years before my next scan so I am trying to be patient,but it is not always so easy . How big was the first aneurysm ? Any symptoms with either? I do hope this news is not too difficult after already having a surgery . I bet there have been changes in the past 8 years. Maybe this pipeline might be an option down the road . I read it was for the ICA specifically,but at this point for large ones. Best of luck

15

The first one was measured on initial MRA 8x5x4mm (mulitilobulated) and was later said to be over 10mm. The new one is at “the origin of the cavernous menigohypophyseal trunk”. The only recommendation the radiologist made was to compare w prior CTA or MRAs (these scans weren’t at MGH). First one (in 2003) was discovered while I was in the hospital with a PE and woke up with loss of motor coordination. They sent me for an MRI and found it. It had not ruptured. The recent scans were done because I’m having horrible headaches, constant since 1st of July. I have a history of pseudo tumor so they wanted to rule out other things before doing a lumbar puncture and with the prior aneurysm and also lupus, we had to be thorough. (MRI order by PCP 2 wks prior w/o contrast showed nothing.) when the headaches started my rheumy said my blood pressure was up and maybe that was causing them, then the PCP saw me and said, no the BP was caused from the headache pain! Either way, having elevated BP with an aneurysm isn’t good. I’m hopeful I hear back from dr office. My regular neuro was on vacation this week so the call I got Friday was from someone else in her practice. So I may be hearing from her and MGH.

I’m really trying to remind myself that I’m not crazy or overreacting. I think when you’ve had or have serious medical things happen you tend to be more on guard. If i had read this report and it was my husband’s, i wouldn’t have been overly worried at all. I think though I might not feel comfortable unless I have an angio and really know what’s going on since things can be a little different with a clearer picture.

Thanks for the well wishes! I’ll keep you posted.

16

Donya-

I am really glad to hear you have had good rapport with your doctor because I think that having that feeling is important. I hope that the cause of the headaches you are having is uncovered soon- you have been through a lot, and waiting with headache is really tough. Please don't think for moment that you are over reacting. Trust your instincts, and keep making those calls to be seen. Summertime is a difficult time to get in to be seen, but please don't ignore those headaches. Good luck!

17

This is just the thread I needed to read. I am new to all of this. I have a 8.3 along the posterior wall of my right supracliniod ICA. So many big words! I also have subtle supervicial siderosis. They found this during an MRI for a possible vascular malformation on my right cheek. I do not have a malformation which is great but this news is overwhelming. I have my first consult soon. I have another consult lined up. Getting so many opinions sounds smart. Did you have to go through your primary or did you set them up yourself? Not sure my primary would be willing to set up several consults. Hopfully I will find out how risky mine is soon. I am a bit nervous about waiting for help if I am sitting on a time bomb. How long did you wait to get treatment?

18

Thanks Lynn for finding this old post! I need to close it. But you can always start a new topic by clicking on the “+” sign under “Support” or “General” on the home page!