Hi All,

Kevin is doing better and especially since we have learned a couple of important things related to MMers who have had surgery.

Two things we learned, that are vitally important to a MMer who has had surgery (bypasses), is blood pressure and blood thinner.

These topics have been discussed in prior posts but I don't think we necessarily realize just how important blood pressure and blood thinner is to a MMer. At least I didn't. I knew the blood pressure needed to be higher than normal but didn't necessarily know the proper range or the consequences of not taking the blood pressure seriously.

A normal blood pressure for a MMer, who has had surgery, is 140 over 80 to 150 over 90. Kevin is an adult. What I don't know is if that blood pressure measurement is the same for a child with MM and having surgery.

Blood pressure at 140 over 80 to 150 over 90 is considered high for someone who does not have MM or who has not had bypasses but it is normal for MMers who have had surgery to keep their blood pressure higher to properly pump the blood.

In Kevin's case, his blood pressure was too low at 120 over 74.  As a result, not only was he extremely tired, it is the culprit for him having a TIA and the aura of a seizure (which is classified as epilepsy since he didn't "black out").

With such low blood pressure, for a MMer who has had two bypasses, Kevin's blood flow was compromised. Kevin's blood pressure medicine was cut in half to accommodate a higher blood pressure.

Additionally, most MMers, after surgery, take one 325mg aspirin a day as a blood thinner.  In Kevin's case, 325mg of aspirin a day was too much for him causing his blood to be too thin and if Kevin skipped his aspirin, because he didn't feel well, the blood was too thick. That also can cause TIA symptoms. Kevin will now take 81mg of aspirin daily.

Although each individual is different, meaning 325mg of aspirin a day may be fine for some, but not necessarily for everyone, I hope by sharing this information with you, it may help to avoid the symptoms Kevin sufferred (TIA and seizure acitivity) by closely monitoring blood pressure and blood thinner and staying within the recommended measurements for a MMer having had surgery.

Kevin and I will be flying home tomorrow feeling a lot better and feeling much relief knowing what we have learned during our visit to Stanford. Monitoring blood pressure and blood thinner are simple things to do to avoid a TIA and/or seizure.

Stay healthy and remember to closely monitor your blood pressure and blood thinner.

Thanks to all for your concern and support these past few weeks.

The MM family rocks!

Hugs,

Lore and Kevin (Cubbie)

Lore,
Thanks for sharing the information and new insights.  Most doctors outside of the moyamoya world do not have a clue about the blood pressure issues for moyamoya folks.

I'm not clear on the aspirin - blood thinner issue.  We are all told to take 325 mg.  If not taking the aspirin causes TIAs, why would one cut back to 81 mg?

Thanks, and good luck!

Hi All,

Hanginon - great question. I hope this explanation helps to understand why Kevin has issues with maintaining an appropriate blood thining level and what he experiences regardless of whether his blood is too thin or too thick and the reason for the 81mg of asprin for now.

Keep in mind, most generally 325mg of asprin a day is the norm but not for Kevin.  Everyone is different and this is just one example of Kevin having an issue with maintaining an appropriate blood thining level. He has a high sensitivity level to blood thining medicines, even asprin.    

The asprin, in Kevin's case, is that too much. or not enough, can be a problem for him in terms of TIAs.

In Kevin's case, too much aprin for him may not be too much asprin for another.  325mg of asprin a day for Kevin thins his blood too much to the point he feels like he did when he took Cumadin which caused him to have multiple TIAs everyday. Kevin took Cumadin prior to a diagnosis of MM. When he went off Cumadin, the TIAs stopped. However, after a while, without any blood thiner,not even asprin, Kevin began having TIAs again. His blood was not thin enough. He needed to find a balance that was appropriate for him.

Dr. Steinberg felt Kevin should be taking some aspirin to keep the blood thin but not too thin so he suggested Kevin take at least 81 mg a day.  That may need to be adjusted as time goes on and he is monitored.  Maybe Kevin will eventually take 162mg of asprin a day. Time will tell.

TIAs can be the result of a blockage. If the blood is too thick, it isn't going to flow properly and could possibly cause a blood clot. So for Kevin, regardless of whether his blood was too thin or not thin enough, he experienced the same symptoms which were TIAs.

For Kevin, it's about finding the right balance in an asprin dosage for his blood to flow properly to avoid the TIAs by thinning the blood but not too much.

At the end of the day, it boils down to a MMer needing to take a blood thinner. In Kevin's case, he simply has a sensitivity level to blood thinners and needs to find the righ balance for him. He certainly can't go without a blood thinner but yet he can't take 325mg of asprin a day because that is too much for hiim, hence the reason for at least taking 81mg a day and possibly working upward from there until he reaches a level that is a balance for him

Sorry to be so wordy. I hope this helps to better explain Kevin's situation with asprin, or not taking some dosage of asprin, to thin his blood. He's just different in that respect due to his sensitivity level to asprin or any blood thinner. He just has to find that balance. 325mg of asprin is too much for him on a daily basis and we may very well find out that 81mg is too little.  We'll keep monitoring both Kevin's blood pressure and blood thinner dosage.

It's late, I'm tired, and it appears I'm rambling. Sorry about that! I'll problably look at this tomorrow and say what on earth was all that? LOL!

Thanks to all for your concern and support.

Hugs,

Lore   

Hi Lore (and everyone),

I am a bit confused and need some advice based on the wonderful info that you have shared with us.  I am still not sure if Matt should be on the aspirin.  He had his bilateral surgery 10 years ago, doesn't ever really have TIAs anymore and only suffers from migraines.  His recent scans have been good.  We have moved since Matt was first diagnosed and the drs. up here in VT really are not that well versed on MM (they hold their own but I still confer occasionally with his old drs. in NYC).  I did once email his original neurosurgeon about Matt being on aspirin and he really didn't give me a straight answer - maybe he felt that he shouldn't since he doesn't see Matt anymore.  Do you think that I should still pursue this?  Are there MMers out there who  do NOT take aspirin at all?  I would really appreciate any insight into this that you could offer!

Thanks so very much!
Gretchen

Hi Lore,
Thank you for posting Kevin's status - what a relief! You both must be exhausted and elated. Hope you have a safe and as relaxing a trip home as possible given airline travel these days.

I'm on the 325mg of aspirin and think my recent TIA may have been associated with lower blood pressure. I do a pretty good job of monitoring it regularly (own my own BP cuff). I'm off the BP medication entirely now, though every once in a while for no reason I can pinpoint it spikes 160s-170s/90s. The greater pressure has to play havoc with the health of the arteries over time, yet if not kept high the lack of flow through the grafts will wreck havoc too - not much of a choice.

When I had the TIA a neurologist prescribed Aggrenox. It gave me crippling headaches during the few days I was on it! Teresa told me to quit taking it. I saw a new neurologist yesterday, one who has many Moyamoya patients. She told me that Aggrenox is thought to cause a "stealing effect"; stealing blood from those areas where MMer's need it the most. She too thought that was the wrong medication for me to take. I was wondering if anyone else has heard this.
Kim

mjmom wrote on Apr 15^th, 2009 at 8:01am:

Hi Gretchen,

Dr. Scott, a leading MM specialist states: With MMD, the walls of the internal carotid arteries become thickened. This gradually slows the flow of blood to the brain and increases the likelihood of blood clot formation, both of which can lead to strokes and TIA’s. Medicines, which prevent clot formation, such as aspirin, are essential in moyamoya disease, and we believe that all moyamoya patients need to be on the medication permanently.
http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P9.html

Mar

That's interesting that you should mention the blood pressure part, Lore.  I was having TIA's as well and it wasn't making sense because my blood flow in my scans looked real good.  So, Dr. S did the same thing to me and cut my atenolol (a beta blocker) in half.  I take this for my high heart rate and not for high blood pressure; however, it does tend to lower your bp as well.  Since I've cut it in half, I have not had any TIA's.  They even questioned whether I was having seizures and not TIA's. 

I'm glad that Kevin is feeling better and that you will be going home tomorrow.  It does feel weird that we aren't there with you guys.  I think Shane will be going in September and I guess I'll be going too if all goes well.  Please give a hug to Kevin from me and Shane.  Hugs to you as well.  We love you guys!

Michelle

Lore,
It was wonderful to finally talk to non-medical people about MM.  Running into you and Kevin at the apartments was a nice ending to our trip out there.

We did ask Teresa Wed. morning about the aspirin and BP.  For Jim, who just turned 36 and is in good overall health besides the MM, 120/70 is fine for now.  As he ages,  his BP may rise steadily.  Teresa said if this happens, we shouldn't let the dr. medicate him to the extreme that he would anyone else.  He shouldn't go all the way back down to 120/70...then he would want to stay at 140/80 or so.  This is because now the body is working against you in other areas besides the carotids as shown with the raised BP.

As far as aspirin goes, he will be on aspririn for the rest of his life.  Right now he will remain at 325mg per day.

Thanks again for the motivational talk on Tuesday!  We arrived home about 9:00 last night and Jim is still reeling from the time change, but he is overall feeling much better.

Shari K.

Hi Shari,

It was really nice to meet you and Jim too.  I enjoyed our chat.

Thanks for giving us "the rest of the story" and sharing blood pressure readings for older versus younger folks.

It is very important for all to know that if a person is young and has a blood pressure of 120/70 it's ok to stay there and not make it higher but for an older person, whose blood pressure is higher, to keep it at the higher level and not try to bring it down to a young person's level. Thanks for sharing that important information.

Kevin is about 16 years older than Jim and has had a much higher BP than what he has recently so for him, he needs to get his blood pressure up. He only wishes he were 36 again. LOL!

I'm glad to hear you made it home. There's no place like home. Let Jim know he is not alone. I too am reeling from the time change.

It was wonderful to meet and talk with you and Jim.

Don't be strangers and keep us posted on Jim's recovery. He really looked good for just having surgery.

Hugs,

Lore

Hi Lore,

I had not check in with the site for a while, I'm glad Kevin doing fine.
I was going to ER 4 months ago due to almost the same thing, my surgeon said that when blood pressure too low, it cann't pump blood to our brain and he took my blood pressure medication off my list. He told me to regular check my blood presure, and it good when the low number is in 90's and high number is between 130 to 155. My doctor also told me to be hydrated. I will have a bad day if I don't drink enough water.

Hug to you and Kevin
Kieu

Thanks for this interesting topic and discussion. This is some of the 'stuff' that makes life post surgery tricky. Why we have to be so careful to get  and keep the blood pressure up. and for me it's 51m of aspirin, and the water too. I too have had tia's before knowing how to keep the surgical site open and flowing. This information seems like a no brainer now -- The no brain part is why many of us have had to learn it the hard way!!!!  Thought I'd add my two cents, and bad jokes, to this great discussion. Feels good to be able to share and empathize.

Thanks

Linda A

Kieu~

I have been reluctant to mention salt  -- which I've found to be helpful...

I  take a little salt when I feel that low bp feeling. Just a dab. it helps me perk up mentally and physically.  It's also a good reason to eat potato chips!
Sometimes when I've had too much water during the day the 'salt' therapy also helps.

Thanks for sharing,

Linda (LA)