Introduction and our story- AVM in Left Temporal Lobe- brain

General
1

Hello all:

I wanted to relay how we discovered my husband's AVM to see if anyone had any similar stories with postive outcomes. This is all very new, only just having been diagnosed on Saturday, after a bleed in his brain. This is what happened through the stream of emails sent to friends and family. Read from the bottom up to get the chronology correct:

Hey all:

I've had the time to add quite a few people to the email chain this morning, so for those of you who are just finding out what's been happening the past 5 days- please scroll and read from the bottom up to see what has transpired.

The good news to report today is that Paul is home! I brought him home late yesterday afternoon, and as you'd expect, he's very happy to be back in his own home, with the cats and familiar surroundings and no bleeps and beeps and being awakened very few hours.

He was evaluated by a speech therapist yesterday before he was discharged, and although he is still quite fine in a number of ways, there are still significant deficits in speech, comprehension and memory.

Now medically, the neurologist has told me that the AVM is in a "quiet" part of his temporal lobe, so I am hoping that in time, as his brain heals, the fog will lift a bit and things will improve significantly. I have been told to measure his progress in weeks/months as opposed to days.

The earliest the Hopkins speech pathologists can see him is around Feb. 10th, but the inpatient s.p. gave me some exercises to work on with him until then. His mother and aunt are flying in from the UK today, so I will review it with them as well. They will also be able to take over watching him for short periods of time while I run errands and such.

As far as visitors, I will be sending a separate email out with a specific set of instructions on communicating with him if/when you come to visit (I'm going to shorten the list of recipients to locals and friends who might want to talk to him via Skype).

He does much better face to face, one on one rather than the phone, so if you have skype, please add me as a contact and maybe we can sit him down to see you.

So-that's if for now...

I'm going to keep it to 2-4 people/day, short visits (1/2 hour so so), but he is going to be bored stiff and has said that he will welcome the company. I think it will help his memory as well.

Thanks all, please keep all those positive thoughts coming in the general direction of Baltimore.

Talking soon,

Beth

PS. I had to send from this email address because yahoo has now temporarily tagged me as a spammer. ;-) Too many addresses… oh well…



--- On Sun, 1/30/11, Beth wrote:


From: Beth
Subject: Paul in hospital status UPDATE Jan 30 2011
Date: Sunday, January 30, 2011, 4:26 PM

Hey all:

First off, I've added a couple more people to this email chain, so for those of you just finding out, scroll all the way to the bottom. to see what's been going on.

As of today, they've moved Paul up to a regular room in the neuro ward, Meyer bldg, Johns Hopkins.

The plan was that he was going to be able to go home tomorrow or Tuesday to convelesce at home, with daily trips to the occupational and speech therapist, and then he WILL get BRAIN SURGERY here at Hopkins in the spring to remove the AVM.

Super strange coincidence, this being a rare condition (only 1 in every 250,000-300,000 people)- turns out my dad had the very same thing, back when I was 15, and had successful brain surgery here at Hopkins. This was the 80's- back in the day when they had to cut your whole skull open, instead of just a little access hole like they do now... anyway he recovered well from that as I am hopeful Paul will as well.

Attached is a picture of him today. Once he is allowed home, I will coordinate visits daily. He is going to be bored stiff and will welcome the company, I just want to spread them out so as to not tire him.

I'll keep ya'll updated as things develop...

Cheers,

Beth


--- On Sat, 1/29/11, Beth > wrote:


>
Date: Saturday, January 29, 2011, 4:15 PM

Hey all:

So Paul WILL be getting brain surgery after all, probably in the spring. I just spoke to his neurosurgeon and she said that since the avm is located in a "quiet" part of the temporal lobe, the best plan of treatment is just to go in and take it out, rather than the radioliogical therapy. It is the blood that has leached into his speech center, but that should improve in time.

She said he should be moving to a regular room later today or tomorrow and released to convelesce at home, with daily trips to the speech therapist, etc. for about the next month. Then in 2 months, he'll get another angiogram, and then in the spring he'll get the brain surgery.

As far as work, etc. He'll probably be out of commission for about a month now and then a month around his surgery.

This condition is congenital and fairly rare (1 in 250,000-300,000 in the US), although because this is Hopkins she's "seen a lot of them". People do travel from all over to get this particular condition treated at Hopkins.

More as I know it, keep the good vibes coming...

Beth



--- On Sat, 1/29/11, Beth wrote:


From: Beth >
Subject: Re: Paul in hospital status update
>
Date: Saturday, January 29, 2011, 2:03 PM

Hey guys:

We just got a prognosis from the angio results.

He has a small AVM that caused the bleeding:

http://en.wikipedia.org/wiki/Cerebral_arteriovenous_malformation

Next steps are to let the blood dissapate in his brain and then test again to see if the size of the avm has been reduced at all. Then, either radiological surgery or catheder surgery, or possibly even see if it resolves itself, rather than open cranial surgery.

They told him he should have few residual effects when all is said and done. That said, the healing process, then further treatment, then healing from that is going to take alittle while. But Paul is strong and healthy and is already showing signs of improvement, so keep those good vibes coming.

They hope to move him to a room in the regular neuro ward later tonight or tomorrow morning.

Please pass this new along as appropriate. Thanks!

Talking soon,

Beth

--- On Sat, 1/29/11, Beth wrote:


From: Beth >
Subject: Re: Paul in hospital status update
Date: Saturday, January 29, 2011, 9:12 AM

Hey everyone-

Well, the MRI yesterday did not provide much in the way of additional info, all they could see, like with the CT scan, was the "splotch", as I've been calling it. The blood, which will eventually get absorbed by the "garbage collector" cells, and be assimilated into the rest of his tissue.

This morning, they'll be doing an angiogram, which should allow them to see better what's going on and possibly even do some treatment, depending on what the malady is.

At this point they've ruled out aneurism, so the remaining possibilities are:

AVM or cavernoma (which are both blood vessel/vascular related) or tumor. He may or may not require additional surgery (as in brain surgery), but they will hopefully figure that out from the test.

Paul's aphasia (or speaking-word ability) is even noticeably better today, from yesterday, which was better than the day before, so that's good. Plus, he's able to eat normally now, and yesterday they did an assessment walk with him around the ward. They still need to test him on steps, but they're thinking he'll likely not physical therapy. He will need a little speech therapy, but like I said, his abilities in that area are improving each day (knocking wood!!).

As far as visitors, please coordinate through me via text or email. 2-3/day seems to be okay for now.

They will be hopefully moving him to a regular room in a neuro ward later today or tomorrow (I guess, depending on how the angio goes).

Thanks a bunch and keep those positive thoughts coming!!

Beth


--- On Fri, 1/28/11, Beth wrote:


From: Beth
Subject: Paul in hospital
Date: Friday, January 28, 2011, 5:20 AM

Hello everyone,

Sorry for the mass email but wanted to let you know that Paul was admitted into the hospital yesterday. He had been complaining of a headache since Sunday night, and I was taking him to a regular doc, when he told me and I noticed he was having trouble putting sentences together and using and pronouncing the right words correctly.

Took him to our local hospital up the road, and they then transferred him to Johns Hopkins. (One of the best hospitals in the world for brain conditions) He is currently in the NCCU (neurological critical care). he's had two CT scans and they see that the bleed occurred on his left side. They still don't know what caused it, so he is getting an MRI tomorrrow and probably more tests after that, and then they will develop a strategy for treatment.

When I know the prognosis, I will send out another email. In the meantime, please no phone calls or texts (family only is fine), emails only. Trying to keep the line free for family and I can't use my phone when I'm in his room anyway.

Please send positive healing thoughts his way.

More soon,

Beth

2

Today's update as told through the email that went out to friends and family:

Sent: Wednesday, February 2, 2011 2:28:27 PM
Subject: Paul at home UPDATE Feb. 2, 2011

Hey guys:

As you know from the below, Paul is home :-), and so very glad to be here. He has his 2 hour assessment session with the speech pathologist scheduled for Monday, Feb. 14th. I’ve also ordered a workbook from Amazon and a sampler CD of exercises as well so that we can get him started improving his speech, etc. immediately, in addition to the basic exercises the assessment speech pathologist left with me on Monday.

Two positive things to report: This morning I did the bills with Paul- well, actually he did them while I watched. ;-) He’s still quicker with Microsoft Money than I am, even with a brain injury ;-). Secondly, his mum and aunt have arrived, and just having them here- familiar people and voices he has known all his life- well the improvement in just the several hours they’ve been here has been noticeable to me. Plus, they’ll be here to see to things around the house while I go run errands and such as well.

Paul’s aunt and mum, both in their 70’s, said they can “barely notice a difference” (although I can of course) and they told him “Well, now you can get a taste for what life is like when you’re in your 70’s. ;-) (as far as remembering things, etc.).

Anyway, keep those positive thoughts coming and I will keep up the updates coming as things progress…

Cheers,

Beth

3

What a strange thing that your father had an AVM as well. Very glad Paul is home and you can already see an improvement with his speech and can still work on the computer! By the way welcome to the family. I hope you find the people here as helpful and friendly as I do.

4


Thanks, Jamie-

I'll have a look at your info/blog, etc. A bit later. I have a job interview, today, actually-- some freelance contract work, about a month's worth or so, that I'd be able to do at home whilst Paul recouperates, so fingers crossed...

Cheers and thanks for the welcome to you and all of you avm-ers! :-) Beth


Jamie Pantelis said:

What a strange thing that your father had an AVM as well. Very glad Paul is home and you can already see an improvement with his speech and can still work on the computer! By the way welcome to the family. I hope you find the people here as helpful and friendly as I do.
5

Beth,

The small "leaching" of blood is a benefit for your husband's recovery. The lesser amount of blood the better the recovery. The AVM can be fixed pretty easily even with craniotomy, which should leave few residual effects. My daughter had a scheduled craniotomy less than a year ago. Surgery on Friday, home Monday, back to school a week later.

Sounds like a great idea to work on speech with your husband. Books will give you some ideas. Online sites about SLPs (speech language pathologists) should help too. An appointment with a neuropsychologist would do wonders as well. That would tell you very specifically where your husband's deficits are from the AVM and the "leaching of blood," so you know what kinds of things to work on at home and to tell therapists.

Best wishes. Keep us updated!!

6


Thanks for the encouraging words based on your experience, and for the tip about scouting out SLP's websites.

Hoping to have a chill weekend doing a whole lotta nuthin', I think. Mum and aunt in law and I are thinking we'll take him out for a walk round the block, weather permitting.

He actually rang me himself to my mobile, from his mobile, which was a small victory, today. Friends have set up a meal train (www.mealtrain.com) for us next week, which is really nice.

Thanks all for being so welcoming! :-)


Tina White said:

Beth,

The small "leaching" of blood is a benefit for your husband's recovery. The lesser amount of blood the better the recovery. The AVM can be fixed pretty easily even with craniotomy, which should leave few residual effects. My daughter had a scheduled craniotomy less than a year ago. Surgery on Friday, home Monday, back to school a week later.

Sounds like a great idea to work on speech with your husband. Books will give you some ideas. Online sites about SLPs (speech language pathologists) should help too. An appointment with a neuropsychologist would do wonders as well. That would tell you very specifically where your husband's deficits are from the AVM and the "leaching of blood," so you know what kinds of things to work on at home and to tell therapists.

Best wishes. Keep us updated!!