Hey everyone. I have not posted anything for a long time!

I just have a question, has anyone with MM (who has had their surgeries) been scuba diving or sky diving?

And/or has anyone been advised against these activities?

Cheers,
Emily

Hi Emily,
Destin was told NOT to do either.  While she has no desire to SCUBA she was disappointed that skydiving was also out of the question.  IF everything goes well at ehr next angio in November we plan to do a skydiving simulator for her one year anniversary.  They have one in Orlando...it's basically a giant fan that simulates what it's like to jump from a plane without the pressure changes.  Of course we'll ask her doctor if that's OK before we do it. 

Donna

Yup, I would imagine anything dealing with extreme pressure on the body would be a no-no.

Don't take the chance.

Stay Strong
Mark (Luca's Dad)

Hi Emily,

Good to hear from you. Hope all is well.

Stanford recommends no high speed roller coaster, SCUBA diving or sky diving or masks. No blood donation and no chiropractic adjustment on the neck.

I know the skydiving is an issue for a MMer due to the snapping/jerking that comes from sky diving and opening the parachute. This would also apply to a chiropractic neck adjustment and to Bungi Jumping .

If I remember correctly, the SCUBA diving has to do with the pressure placed on the incision/head by the mask and also the diving part.

As for the high speed roller coaster, well I think that speaks for itself.

Take care and don't be a stranger.

Lore

My nurologest said No to all for the reasons Lore has mentioned. I had a build up of pressure from too many in a row roller costers that caused the migraine before my stroke and discovery of my MM.
Becky

Hi,
So if MM people can't scuba dive in part because of the masks, does that mean no snorkeling with masks either?  (are they even the same kind of masks)  My older kids scuba dive, so that makes me sad my daughter won't be able to dive with them when she gets older!
Thanks,
Jody

You do use the same masks.  I always thought it was because of the pressure changes...never thought about the mask.  So I wonder also if snsorkeling is OK.  We are all SCUBA divers but fortunately Deestin has never shown an interest.  She does love roller coasters though and it's hard for her being so close to Bushc Garden, Disney and Universal Studios that have awsome coasters.  She also plays the Clarinet in the band.  I know it may not be the best thing to do but I am not going to ask her to give up everything she loves...she just takes it slow...she knows when she's played enough and just fakes it....you can get away with that in a large band.  :)

Good discussion.

I think the mask (any mask) for anything is an issue for a MMer. A mask can restrict.  My brother has difficulty with his glasses touching his incisions. Actually, we have had them adjusted so they are not too tight against his head above his ears. 

As for SCUBA Diving, I agree with the problems for a MMer are most likely blood pressure and the depth of diving pressure.

One of the possible dangers of SCUBA diving is a arterial gas embolism (AGE) where bubbles enter the blood stream and travel to the brain.  There are also what are called ear squeezes that can affect the ears and sinuses. There is also unequal air pressure associated with SCUBA diving. I suspect it is a combination of all the possibilites associated with the sport in terms of having MM.

I snorkle but I don't have MM. With snorkling, one doesn't go to the depths like in SCUBA diving but one does wear a mask. To be safe, I would consult a neuro about the possible issues of snorkling and having MM.

Lore

 

What a great response, we all learn something everyday around here...LOL  ;)
God Bless You All
Michele

I was a certified scuba diver and I really enjoyed diving. Luckly I never experienc any TIAs while diving.  I'm very disappointted when Dr. Steinberg told me I can no longer dive any more. :(

I was told that I could snorkel if I wanted to but if I felt any weird sensations of light headedness or if the pressure gets to me. I have not tried it yet.
Becky

Wow!  I had never heard anything about roller coasters.  Matthew rides them all the time.  I also hadn't heard anything about donating blood or chiropractic adjustments. 

As far as the mask -- wouldn't that become a non-issue once you are far enough out from surgery? 

I am overdue for my yearly update to Dr. Scott.  He did allow Matthew to play football . . . so I am curious what he will say about this.

It has always been my understanding that it was pressure changes alone that prevent mm'ers from doing these activities. 
In fact, there are hyperbaric chamber therapies that other stroke patients use to promote healing.  However, I was told specifically that Matthew could NOT attempt this.

Kim -- mom to Matthew, 17, diagnosed with moyamoya at 7, with three strokes, doubly rare with renal artery stenosis that led to loss of the kidney. 

Here is the link to Stanford's recommendations regarding non-constrictive devices and other recommendations post-op.

If the link doesn't work, go to the Stanford moyamoya site and then post-op.

http:/stanfordhospital.org/clinicsmedServices/COE/moyamoyaDisease/patientEducation.html/

Scroll down to non-restrictive devices. this addresses the risk of closing off direct bypass grafts (my brother had two STA-MCA direct bypass surgeries in 2005). He still has problems if his glasses are to snug against his head.

Scroll down to the bottom under other considerations. These are Stanford recommendations. I know about the chiropratic adjustment on the head/neck because a chiro wanted to adjust my brother's neck so before I would allow it, I called Stanford and they said no chiropractic adjustment to the head/neck. My brother did have chiropractic adjustment on his shoulder.

Lore

I did visit the site -- and now I understand. 


Quote:

Patients who have direct bypass grafts have a risk of closing off their grafts if they wear eyeglasses or other devices that fit too closely to their heads around the temple area.

Matthew, who received his surgery in Boston with Dr. Scott, received an indirect bypass.  I read that this is sometimes best in children because of their smaller vessels.  I am guessing that is the difference . . .

Kim

Kim -

That would be my thought too. That perhaps the difference in recommendations/restrictions depends on direct versus indirect bypass.

From what I have read, most generally children have the indirect bypass for the reason you mention and because they are still growing. Some MMers have had both a direct and indirect bypass.    

I am interested in Dr. Scott's thoughts/recommendations on restrictions and any other post-op considerations and if it is different having had an indirect bypass versus a direct bypass.

Lore

Hey Everyone, thanks for the responses!

Not really what I was hoping for, but admittedly I have been told pretty much the same things unfortunately, was just hoping perhaps there were different opinions out there!

NO to:
-  rollercoasters (which I haven't yet but I think I plan to, I do like them!)
- scuba diving (which I had never wanted to before but now I would really like to, just 10m maybe?)
- sky diving (which I can live without, ditto for bungy jumping)
- weightlifting (which i actually used to do, the dr's thought this would have been a joke.. lucky!)

I'd already decided without asking that chiropractic neck adjustments were a bad idea, and my osteopath agrees firmly, she stays well away from my neck.

I have been snorkelling plenty of times though (I live on the Great Barrier Reef!) I had 2 direct bypasses and I do have to be careful with my mask, make sure it is not too tight (which it should not be anyway - lots of people mistakenly wear masks that are too tight) and if I felt anything wrong I would take the mask off but I don't think that has happened yet. As far as I know though, other people have had bypasses that go in different directions to mine, so you'd have to judge it on where your incisions were.

As for pressure changes though, I am now an aerial acrobat, which I started less than 3 years ago (around 9 months after my second surgery) and am constantly upside down, falling from great heights (fwds, bwds and spinning) and also plenty of time in handstands etc.. So far I have had no problems with this at all. Admittedly I have not mentioned it to my neurosurgeon and I don't plan to in a great hurry! For these reasons I am pretty willing to give rollercoaster's a go. Will see...

Cheers guys!

I emailed Dr. Scott today with Matthew's yearly update.  Because Matthew is so close to 18, I asked about these activities.  After all, Matthew needs to be more aware of them than I do.  He will be soon making his own decisions.  (Look out world!!)

I will post his reply. 

Kim

You all will not believe the response I got from Dr. Scott!!

I asked specifically about:
1.  Scuba diving
2.  Skydiving
3.  Wearing a swimming mask to snorkel. 
4.  Riding fast roller coasters.  I was cringing as I asked this, because Matthew has ridden several.  But he hasn't ever had any issues during or after.
5.  Donating blood
6.  Chiropractic adjustments
7.  Weightlifting
8.  Any other restrictions he could think of that I had not mentioned . . .


Dr. Scott stated that he places no restrictions on his patients after two years of surgery.  Here is his exact response:

Quote:

This is a wonderful report about Matthew - I am thrilled to hear how well he is doing. I don't' restrict my patients in any way after that are more than two years out from surgery.  Certainly if he is playing football, I see no reasons for restrictions on any other type of activity.  I am not sure that all of the information on the moyamoya site is relevant to each and every patient with the syndrome, especially to those who have had operations and who are doing as well as your son. Please keep me posted about him from time - or tell Matthew that he should keep me informed with a note every year, OK? Dr. Scott

I feel the need to strongly encourage each and every person to consider:
a.  their present condition
b.  the corrective procedure chosen
c.  the effectiveness of that procedure
d.  TO CONSULT WITH THEIR INDIVIDUAL DOCTOR -- EVEN IF IT IS ALSO DR. SCOTT

Obviously, each case is different, as we have discussed at length.  Matthew did not have the direct bypass that Stanford performs.  He had the procedure that Dr. Scott has perfected, known as a pial synagiosis.  It is my understanding that this is an indirect bypass, of sorts. 

However, it is nice to know that Matthew will be able to attempt activities that appeal to him.  Though Dr. Scott stated that he himself doesn't believe in skydiving.  ;D I agreed.  After all, why do people jump out of perfectly functioning airplanes??   ;)

Kim

I had indirect (EDAS) bypass surgery Oct. 25th 2000.  I have been riding motorcycles the whole time since and always wear a helmet. (constricts the temporal region). I have had two crashes which rendered me unconscious and in the hospital for broken body parts. The last crash was at the race track which is where I primarily rode for the last four years. It prompted me to quit due to a 3 month recovery from a shattered hip. Of course this report is a single data point only and does not indicate what is acceptable as an activity. No one's ever accused me of being smart.

Russ

Kim

Besides the interesting info about activities, I'm really happy to see Dr Scott so positive about Matts recovery.

Stay strong
Mark (Luca's Dad)

My 11 year old daughter had her direct bypass with Dr. Steinberg two years ago.  She's been on a local swim team since 4 months after her surgery.  She swims with goggle and cap at least 4 times a week for about an hour to 1-1/2 per practice.  We're very selective of the goggles and how it fits near her scars.  So far, no noticeable impact/symptoms.  She's also been snorkeling and on roller coasters several times since her surgery.  Ever since her surgery, we've consulted with our neurologists and Dr. Steinberg with respect to activity restrictions and we've always been told that there were no restrictions other than being cautious about constricting or putting pressure on the surgery site.  My daughter recently expressed interest in scuba diving since I'm qualified, so its disappointing to read that even Dr. Steinberg recommended against these activities for some (all) for his patients.  I hope the recommendations are on a case by case basis.  Nevertheless, I'll have to ask the question again specifically for my daughter. 

Hi All:
Long time no chat.  I haven't been on in a while, but thought I would add my thoughts on the roller coaster issue.  I was told orginally that after a year it would be fine to ride them.  This past June I went to 6Flags in NorCal and was later told I shouldn't have gone on them. Of course I was a little concerned.  Apparently from the time I had my surgeries to the time I decided to ride, the restricition had been restated.  I haven't been on since, but I did not feel any side effects from it, except for the psychosomatic ones after I read everyone's warnings....a day too late ;-)

Mods, the above post is spam.   >:(

I had no idea about any of these things. I love roller coasters and never had any problems. The only problem I do have is when I spend too much time(over ten minutes) in a hot tub or hot bath. I even fainted once. Also very hot weather kind of makes me queasy from time to time. Lucky for me I live in a country where  we seldom have hot weather.
I just remembered that( and this is still unclear to me) a certain type of ventilation makes me feel like I am going to pass out. This almost happened to me once and ever since I avoid the store where this happened.

long time no chat guys/gals! I've been high speed roller coaster many times at 6flag in IL after my direct bypass in 2008 and 2009 without any problem. I also did snorkeling, but not scuba diving yet (even though I'm a certified diver before I was diagnosed). I'm going to skydiving next month! Yeepy!!! I'll report to you on how it feels on my incision area after my jump from 125000!

cherry

Just want to give adrenaline junkies like me an update: I did skydive last month, everything was great! I didn't feel any discomfort in my head or anything wrong near the bypass area in my temple. I'd say if you have stroke free for few years post surgery and you are really into sports, go enjoy it! Moyamoya shouldn't limit your life on the ground only! go scuba diving, go sky diving, have fun! :D :D :D