Getting help and support

[followingHim]

I haven't posted here in quite some time.  My husband has a recurrence of an acoustic neuroma and underwent 6 weeks of radiotatic surgery last summer.  He has been experiencing very bad headaches and is now taking steroids.  I feel we could both do with some help and support but I dont' know where to go to get it.
I was wondering if he would qualify for a disabled badge as he now also has a heart condition and is getting so very tired.   Any ideas would be appreciated.

followinghim

[Jim Scott]

followingHim ~

Although it's good to see you back afrer all these months, I'm sorry your husband's headaches are the motivation for your return.  Because you and your husband are in the U.K., I would suggest checking out the BANA (British Acoustic Neuroma Association) website to find out if there is a local AN support group within reasonable driving distance of your residence. http://www.bana-uk.com/.  Of course, these forums can also be a source of support for you and your husband.  Although we cannot give you direct medical advice, we can offer practical advice and, just as important, extend empathy and friendship based on mutually shared experience with this somewhat rare condition (acoustic neuroma). 

I trust your husband's headaches will diminish soon and that both of you will avail yourselves of our willingness to share and support.  I look forward to seeing you post again - a bit sooner, this time.   

Jim

[followingHim]

Thank you for your response Jim.  It is much appreciated.  I had to contact the hospital this morning as Rob's headaches have come back even though he is still taking the streroids.  His dosage (Dexamethasone 2mg twice a day) has been increased, back to twice a day until we go back to the hospital next week and his condition reassessed. 

We have had a very busy and stessful year but it is good to be back here and I am trying to catch up with all the latest news.  The book club certainly looks interesting.  It would be lovely to have the time to sit down and read again. 

Blessings

Ley

[ppearl214]

Ley,

great to see you back  and so sorry to hear Rob is running into these issues.... hoping the dexmeth (steroids) helps as I ran into issues about the same time and had to also do a short term course of steroids to help.  I know I didn't get to meet you over the Christmas holidays (I met up with some AN'ers while in Dorset County over the holidays) and so sorry I missed you. 

Jim makes a great suggestion about BANA and they may be able to help out as well.

As for the ANA Book Club, I'm still waiting for them to recommend a good Danielle Steele Book before I join

Please hang in there and please tell Rob to hang tough... sending wellness wishes his way.

Cheers!
Phyl

[followingHim]

Hi Ppearl,

Rob was feeling so unwell this morning that I phoned the hospital.  They have suggested that he increases the steroids back to 4 mg today until he has his appointment at the hospital on Tuesday.  He seems to be a bit better but still has no energy.  The headaches seem to have eased up some too.

Dorset is some distance from us here in Gloucestershire, but it is good that people are able to meet up.   I have been in touch with BANA as Jim kindly suggersted but there isn't a support group in our area.  I think it might be a good idea to take out a membership with them.

So far I haven't come across the book list for the book club. Does anyone know what page it is on?  I like the classics like Austen and I like history.  It is years since I read anything like that and I am looking forward to being able to "switch off "for a while with a good book.  I think Rob might enjoy that too as we are both bookworms.

I don't think I have read Danielle Steele before but our daughter is an avid fan.  Rob has enjoyed some of the Wilbut Smith novels in the past.  He might still have one "on the go" at the moment.

Blessings

Ley

[CHD63]

Hi Ley .....

I'm not sure if there is a book list as such on this thread, but this includes some of the books being read:  http://anausa.org/forum/index.php?topic=5989.900  Hope this is what you were looking for.

I pray that Rob will have relief soon from his awful headaches and feel like reading again.

Clarice

[followingHim]

Hello Clarice,

Thank you for your reply. During these summer months I find there is not too much time for reading as the garden keeps me busy.  I need a book on growing orchids but I don't think that would count!!

Rob seems to have improved a little today but is still feeling very disorientated and slow.  The headaches have eased off though, which is a blessing.

Thank you for your interest.

Blessings

Ley

[followingHim]

Rob was admitted to a neuro ward yesterday for a CT scan and tests.  He has been getting more unsteady and confused.  The dr doubled his medication to 8 mg per day.

[Jim Scott]

Ley ~

I'm sorry to learn of your husband's worsening symptoms.  I truly hope that the CT scan and other tests will find the cause and that it can be addressed.  He'll be in our prayers.

Jim

[followingHim]

Thank you so much Jim and to all who hold him up in prayer.  That means such a lot to us.

We are still waiting for the results of the CT scan Rob had yesterday.  At the moment they are thinking that he may have developed hydrochephalus, (fluid on the brain), which will need surgery to insert a shunt).  His meds, Dexamethasone, have been increased to 8mg per day.

Again, thank you for your kind words

Ley

[moe]

Ley,
So sorry to hear of your husbands setbacks. That is truly discouraging and frustrating to have setbacks I'm sure.
I'll keep you guys in prayer. The hydrocephalus is treatable and will definitely cure the headaches, if that is what is causing them.
Take care of yourself too.
May not have time for the book reading, but I am currently trying to find the book The Time Traveler's Wife, as stated on the book forum post.
Can't seem to find it, still looking.
Maureen

[ppearl214]

Ley

I'm following along and keeping updates on this.. I'm so sorry to hear this is cropping up and hope that Rob is hanging tough.. and you too.

Sending those wellness wishes across the pond.... pleae hang in there.

Phyl

[followingHim]

You are all so very kind.  Rob is to have a lumbar puncture sometime today.  We should know more later.  He is in good spirits and looking a lot better.  I think the increase in meds has something to do with that!  He is also happier now that he is in hospital because he found the confusion etc very distressing.  Now that the drs have seen how he is for themselves he now feels that somthing is being done and that something can be done.
We have a lot of people praying for him and that is so encouraging, being so far away from home.
I will update you as and when I can.

My current book, when I can concentrate is: The Cambridge Companion to Evangelical Theology edited by Timothy Larsen and Daniel J. Trier.   

I also managed to find a knitting wool shop yesterday and had some presence of mind to bring a pattern with me, but not the yarn, so I am now embarking on a baby blanket for the times I can't focus on reading.

My grateful thanks to you all for caring.

Blessings

Ley

[CHD63]

Ley .....

Thanks for the update on Rob.  I'm sure both of you are relieved that something is going to be done soon to relieve his pain and confusion.  Just his being in a medical facility should bring some sense of relief for you ..... now they can worry about his care.

Not sure I could concentrate on something as heavy as "The Cambridge Companion to Evangelical Theology" during this time.  Knitting sounds more helpful ...... and would definitely be more relaxing for me.

My prayers continue for peace for both of you and successful treatment for Rob.

Clarice

[followingHim]

Hello Clarice,
Thank you for your interest.  Just a quick update as I can't get the laptop to work here and I am having to use a public computer.  Rob's lumbar puncture showed up that he has a blockage and he will have surgery on Thursday.  We have to wait awhile because of him coming off the blood thinners.  He is off the ward at the moment and staying with me in the apartment and I will take him back on wednesday.

Again, thank you for all your prayers.  I will look in when I can.

Blessings

Ley