Caregivers => Caregivers => Topic started by: followingHim on June 18, 2009, 09:02:50 am
Title: Getting help and support
Post by: followingHim on June 18, 2009, 09:02:50 am
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
Title: Re: Getting help and support
Post by: Jim Scott on June 18, 2009, 02:49:44 pm
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/ (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
Title: Re: Getting help and support
Post by: followingHim on June 19, 2009, 09:22:58 am
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
Title: Re: Getting help and support
Post by: ppearl214 on June 19, 2009, 11:43:11 am
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
Title: Re: Getting help and support
Post by: followingHim on June 19, 2009, 02:05:43 pm
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
Title: Re: Getting help and support
Post by: CHD63 on June 19, 2009, 08:50:42 pm
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
Title: Re: Getting help and support
Post by: followingHim on June 20, 2009, 10:51:44 am
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
Title: Re: Getting help and support
Post by: followingHim on June 24, 2009, 06:56:34 am
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.
Title: Re: Getting help and support
Post by: Jim Scott on June 24, 2009, 02:30:25 pm
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
Title: Re: Getting help and support
Post by: followingHim on June 25, 2009, 03:25:41 am
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
Title: Re: Getting help and support
Post by: moe on June 25, 2009, 11:15:48 am
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
Title: Re: Getting help and support
Post by: ppearl214 on June 25, 2009, 01:35:05 pm
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
Title: Re: Getting help and support
Post by: followingHim on June 26, 2009, 07:50:55 am
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
Title: Re: Getting help and support
Post by: CHD63 on June 26, 2009, 08:07:40 am
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
Title: Re: Getting help and support
Post by: followingHim on June 29, 2009, 03:21:07 am
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
Title: Re: Getting help and support
Post by: CHD63 on June 29, 2009, 07:59:35 am
Ley ....
Thanks for the update on Rob. Hopefully this surgery on Thursday will bring an end to the misery he has been having. You take care of yourself, as well!
Can we put his surgery on the AN calendar? You can either do it yourself by following the link at the bottom of my signature (click on the date and then fill in the information) or one of the moderators can do it. *
Prayers continue .....
Clarice
*I've added Rob's surgery to the AN Treatment Calendar - J.S.
Title: Re: Getting help and support
Post by: moe on June 30, 2009, 06:53:38 pm
Rob's lumbar puncture showed up that he has a blockage and he will have surgery on Thursday.
So is he having a LP drain put in? Is that the surgery? Let us know, and prayers going your way for a successful surgery. Maureen
Title: Re: Getting help and support
Post by: followingHim on July 01, 2009, 03:55:27 am
Hi Clarice
I don't really understand about the surgery going on the calender. A senior moment on my part.
Not much reading or knitting happeneing at the moment.
Moe, Rob will have surgery tomorrow, Thursday, to insert a stent do to the hydrochephalus. We were warned about this possibility when the tumour was exised some 19 years ago.
Rob is very tired - he is not sleeping well in this heatwave we are having, but otherwise he is ok.
Thank you to you all for your prayers.
I wish I had the time to read through the other threads but I am using a public computer at the hospital and there is invariably a queue for it. You are all in my thoughts and prayers
Blessings
Ley
Title: Re: Getting help and support
Post by: followingHim on July 08, 2009, 03:05:03 am
A very brief update - Rob's surgery has been cancelled 4 times so far. It is now scheduled for tomorrow, Thursday 9th July. He is still having memory problems and confusion and is getting rather depressed. He is also getting quite weak, needing help to walk to the bathroom even though he is now using a walking stick.
Title: Re: Getting help and support
Post by: CHD63 on July 08, 2009, 07:56:38 am
Ley .....
So sorry Rob's surgery had to be postponed so many times. I wondered what happened.
My prayers for tomorrow that all goes well. Try to let us know when you have a chance.
Clarice
Title: Re: Getting help and support
Post by: ppearl214 on July 09, 2009, 04:56:51 am
Ley
I am SO sorry to hear the saga continues and that Rob is requiring assistance as such... but, let's hope today the docs get to do what they need to do and I continue to send wellness wishes and healing hugglez across the pond.... and don't forget to hold onto a few of my hugglez for yourself. Please try to hang in there.... we're here for you.
Phyl
Title: Re: Getting help and support
Post by: followingHim on July 10, 2009, 03:01:04 am
Dear Clarise and Phyl
Thank you so much for your kind words and encouragement.
I am pleased to report that Rob eventually had his surgery yesterday morning and the improvemrnt in him is amazing. It really is an answer to prayer. We have got the old Rob back again. ;D
Hopefully it won't be too long before we can go home.
Thank you so much for your prayers and kindness.
Blessings to you all
Ley- -
Title: Re: Getting help and support
Post by: ppearl214 on July 10, 2009, 05:00:16 am
Ley
If you could only see the smile on my face with this news!!!!!! Thank you for taking the time to post to let us know Rob's update.... I know you have your hands full and I fully appreciate the updates...... Please give Rob my very best wishes and continued prayers/hugglez continue! :)
Phyl
Title: Re: Getting help and support
Post by: CHD63 on July 10, 2009, 07:15:05 am
Ley .....
Thanks so much for finding the time (and a computer!) to let us know about Rob. And, thank goodness it is good news. What a relief!
My prayers now for continued improvement and early release to be able to go home!
Clarice
Title: Re: Getting help and support
Post by: Jim Scott on July 10, 2009, 10:08:37 am
Ley ~
Just wanted to pop in and let you know that I share your joy now that Rob is 'back'. Congratulations. I'm glad we could share this journey with you. :)
Jim
Title: Re: Getting help and support
Post by: followingHim on July 13, 2009, 09:55:25 am
Thank you for all your kind words of encouragement and your prayers. I brought Rob home on Saturday. We are so pleased to be home again. It seems we have been away for ages - much longer than 3 weeks. Rob is doing well but he is very tired. He is a little uncomfortable where his surgery sites are - behind the right ear and on the right of his abdomen. He has had a strata valve fitted and he says it feels very strange to feel the tube inside him - particularly when he moves his head. He is using a walking stick at the moment because he is so unsteady but I have told him he has to be patient - not to try and rush things. He is so much more alert with only a tiny bit of forgetfulness but I am sure that will improve too. The nurse will take out the 11 staples in his head on Friday. I think he sees that as more progress, which of course it is. A check up will follow in 6 weeks.
Thank you all for all your interest and concern
Blessings
Ley :)
Title: Re: Getting help and support
Post by: CHD63 on July 13, 2009, 11:12:52 am
Ley .....
So glad you are back home again ..... there is nothing like sleeping in your own bed again to speed up the recovery!! ..... and you take care of yourself, as well.
My prayers continue and let us know how you both are doing.
Clarice
Title: Re: Getting help and support
Post by: ppearl214 on July 13, 2009, 12:00:55 pm
Ley,
congrats to you and Rob! I'm soooo thrilled that he is now home and resting in your own bed. Please give Rob my continued wellness wishes... and maybe for you to enjoy a Radox Muscle Soak bath as you have most certainly earned it! :)
Hang in there and will check on you later!
Phyl
Title: Re: Getting help and support
Post by: followingHim on July 14, 2009, 12:36:49 pm
I showed Rob the posts here regarding him this morning and he said "what lovely people " :) He also sends his grateful thanks to you all for your prayers and your concern for him. Rob is going on fine. He gets very tired but he is making good progress. The staples come out on Friday morning. He has 11 in his head and I don't know how many in his abdomen, but he will be glad to have them out. The hospital even supplied a little gadget for the nurse to use to take them out!
Thank you again for all your support.
Blessings
Ley and Rob
Title: Re: Getting help and support
Post by: ppearl214 on July 15, 2009, 05:42:15 am
Ley and Rob....
ok, stand back....
HEY ROB!!!!!!! HOW YA DOIN'? GET WELL SOON!!!!!!!!!!!!
Ok, now I feel better! :D Hang in there, you 2 and continued wellness wishes coming your way! Phyl
Title: Re: Getting help and support
Post by: CHD63 on July 15, 2009, 07:30:38 am
Rob .....
DITTO!!!
Clarice
Title: Re: Getting help and support
Post by: followingHim on July 18, 2009, 08:12:49 am
Rob is so touched by the care and concern for him here and he asks me to pass on his grateful thanks. He is not a big computer fan but was bowled over by the messages you posted here for him.
The staples came out yesterday and he is fine but still very tired. I can see an improvement every day.
Blessings to you all
Sheila and Rob :)
Title: Re: Getting help and support
Post by: followingHim on July 27, 2009, 07:03:25 am
Rob has to go back to the hospital clinic tomorrow for a check up. He is getting some headache, particularly when he moves his head and he is starting to experience some disorientation also. He is decidedly tired and lethargic today and the hospital thinks it is worth the 300 mile round trip to check him and the valve/shunt.
I hope everyone else is doing Blessings
Sheila
Title: Re: Getting help and support
Post by: Jim Scott on July 27, 2009, 03:28:41 pm
Sheila ~
Our hopes and prayers for Rob will definitely continue. After-effects such as Rob is experiencing are not entirely uncommon and often resolve within a reasonable period of time. However, the medical check-up seems like a prudent course, even considering the 300-mile round trip involved. Please let us know the results of the consultation. We're all pleased that your husband is encouraged by our posts. We wish wellness for Rob and blessings for both of you. :)
Jim
Title: Re: Getting help and support
Post by: followingHim on July 28, 2009, 02:19:58 pm
Dear Jim Thank you for your interest in Rob. The consultation went well and everything seems to be working fine. This is rather a steep learning curve for us. It would appear that Rob is expecting a bit too much of himself and must take things more slowly. It is also thought that he is experiencing some side effects fromt he steroids. He will have to have another scan to check on the pressure in the ventricles in his brain and we know that the ventricles are slightly enlarged. At the moment we are not too sure if this will be an MRI scan or a CT scan. The CT scan can be done at the local hospital but we will have another trip if it is back to the other hospital if it is decided that he needs an MRI scan because he has a strata valve and has to be checked before and after every MRI scan. We are feeling a lot easier in our minds now.
Thank you again to you all for your prayers
Blessings
Sheila
Title: Re: Getting help and support
Post by: ppearl214 on July 29, 2009, 05:51:28 am
Sheila,
I'm glad Rob met with his physicians yesterday and yes... as many try to "expect" or "do" too much post-any treatment-in life.... I raise my hand as being one of the guilty party as well. "Day by day, inch by inch...." has always been the mantra for me and hoping Rob will not expect too much each day... and sending those continued wellness wishes his way... and hoping you are doing something special for yourself from time to time as well. You need hugz as well. Hang tough, please give Rob my best and pls remember to take time for yourself. Me thinks you need to indulge in a full box of Jaffa Cakes and a full bottle of Radox! :)
Hang in there! Phyl
Title: Re: Getting help and support
Post by: followingHim on August 06, 2009, 12:36:21 pm
Thanks so much Phyl, you are such a sweetie.
Rob hasn't been too well this week. We did the paramedics/ambulance/blue lights thing on Monday morning. That was a bit scarey but Rob is back home now.
We have been finding recently that there are facilities in place for help and support. We have already had a handrail fitted on the staircase and also a handle on the newall post part way up the stairs. :) Rob has found that he can fall up stairs as well as down stairs :o which tests my reaction times quite well. :D