TALK TO A
Established April 15, 1995
University of West Georgia Disclaimer
I am a 47 yr old female who lives in Maryland with her fiance' and chihuahua named Buttercup. I am now retired due to being disabled but before that worked over 25 years in the banking industry.
17 April 2004
In October, 1999, I had a giant Grade 3 subarachnoid hemorrhage aneurysm in the right posterior communicating artery . The surgeon who clipped off the aneurysm, said it was the largest he had ever seen!!
I was in West Virginia when out of the blue I simply passed out and was taken to a local hospital by ambulance. Their ER was able to determine that they were not equipped to handle me there so they prepped me to be flown to Charleston Area Medical Center. This was 1 week before my 43rd birthday.
I had the surgery but came out of it unable to walk without using a walker. Now, almost 5 years later I still have no balance and need to use a walker plus I have had severe spasticity set into my left leg and foot which causes me pain 24/7. I also find that I get upset very easily and that I have no patience. Is this normal?
I have tried physical therapy 3 times to try and regain my mobility but so far no luck. I am thinking about trying aqua therapy or massage therapy.
Would love to hear from someone who was able to overcome their mobility issue after brain surgery.
Thanks for taking the time to read my little story----
Update: 5 October 2004
October 6th will mark the 5 year anniversary of my giant brain aneurysm. I am still unable to walk without a walker and suffer severe spasticity in my left leg and foot. So far, the Baclofen pump that I had implanted in January of 2004 has done nothing to relieve this spasticity.
On October the 12th, I will have a "nuclear study" which will tell the doc if there are any pinholes in the catheter that delivers the baclofen from the pump to my spinal fluid area. If it is in fact leaking than I will have the catheter replaced for the 2nd time! I can accept the walker but not the pain as I am sure you all understand.
People say you are lucky to be alive but some days I wonder. :)
Update: 29 May 2005
My spasticity continues to get worse than ever in my leg and foot. It has gotten so bad that I am now finding it almost impossible to use my walker. My legs "bend" and my back leans over making it next to impossible to use a walker and I just cannot stand the thought of not getting out of bed.
I went to an E. R. yesterday and they gave me 15mg. of Valium (which I have been taking for just over a month now anyway) and they gave me some Dilaudid thru an IV. This has helped very little but on the up side I made an appt. with the pain medicine and rehab dept at Johns Hopkins in Baltimore and will be going there June 15th. So wish me luck and keep me in your prayers. I will update after my appt.
I also had a cat scan done last month and it was clear so thank God for that!
Update: 16 June 2005
My appointment at Johns Hopkins went very smoothly, even the drive was good going and coming back during what should have been the beginning of rush hour!
First I saw the doctors assistant, Dr Lin, yes he was a small Asian male, who asked me some preliminary questions but did not need to ask many because I copied from my files all the tests I have had and the facts of my brain surgery and gave it all to them to keep. I was prepared. He was so cute, he said I am going to touch your knee, ok? lol
Then the doctor came in and she did some tests on my leg to see how far I could lift it and stretch it and also some tests with my toes of which I can do very very little with my left foot and leg. Along with the doc came this drop dead gorgeous guy with the bluest eyes you had ever seen OMG I fell in love right away (sshhh do not tell Tony). Now this doctor says she felt no spasticity in my leg so the pump must be working, however I had something called stiffness of the leg (?) and too little movement and a contractured knee.
She recommends physical therapy for 6 wks, twice per week, to do the following:
1) Quadraceps strengthening
2) Hamstring stretches (owwwwwwwwwwwwwww)
3) Balance training or learning in parallel bars
4) After AFO (explained below) gait training in parallel bars
I have to get "extra depth shoes" which are shoes that have a large bottom like little old ladies wear. lol
Well then Mark, the drop dead gorgeous guy, is going to make me a custom boot to wear during the day. I go see him next WED at noon ( I think he just wants to take me to lunch), He will measure my leg with the shoe on and make my boot from that. Then I will have to go back to pick it up (The boot is the AFO by the way). It will straighten my foot back (my foot is turning to the left) and make it less dangerous for me to walk around. I just fell again 2 days ago which is like the 3rd time in 2weeks.
I just melted when Mark touched my leg, I felt I could get up and walk!! Thank God I had shaved my legs. LOL Then they talked in the foreign tongue that medical people do and that made me mad. But all in all they did not seem to think they could not help me, not sure what their plans are after this physical therapy but I go back to the doc on 7/6.
We left here at 12:00 for a 2:30 appt and got there like 1:30 and it took us till a little after 2 to find her in the building. But they pretty much took me right in and we left at 4 so she spent a lot of time with me but my attn was on Mark.
Update: 21 June 2005
Well just got back from what was supposed to be my first physical therapy session at this new place today. But turns out they are not going to be able to help me because they have no parallel bars. So they referred me to a place almost across the street from them. We went over there to fill out the paperwork (2nd time today) and they cannot see me til next Thurs the 30th. Tomorrow we have to go up next to Baltimore to get fitted for my brace.
By the way, this weekend Dr. Barletta ( my pain mgmt doc) is going to a conference in New Orleans. He said they do round table discussions at them and I am going to be who he discusses. Sure hope he finds another doctor who has had someone like me (although I doubt it cause I am such an unusual case ). I am keeping my fingers crossed that he will call me next week with some good news!! So tomorrow I get to see blue eyes and I also may get to stop by my friend Chrissy's house (my online sis) and say hi to her if my father feels like it, it would just be to say hi but at least I would get to see her, right??
Update: 16 July 2005
I had appointments 3 days last week and it wore me out plus it was so hot here in Maryland.
Monday I went to my pain management doc just to talk to him about the medication recommeded by the doc at Johns Hopkins. She wanted me on Gabapentin (generic for neurontin) but she wanted me to take a certain amt each week for 5 weeks eventually ending up at 600mg 3 times per day. So we are just starting off at 300mg 3 times per day to see if it helps me and it is really helping with the pain however the stiffness in my leg just seems to get worse. I cannot even come close to stretching my leg all the way out!
Wednesday I started physical therapy (this guy was not as cute as blue eyes!! :) We did some stretching, strengthening and parallel bars. I like that they have a mirror on the wall right in front of you on the bars so you can watch how stupid you walk!! lol
Also on Wednesday I had a voucher to go shopping for clothes at the Salvation Army worth $100 issued to me by my county's health dept. They have a special program for the disabled and every year we get a "budget" that we can spend on things we need or want. I have gotten a computer from them, a printer, lots of printer ink, 2 walkers, 2 canes (which I want to eventually get to use) a wheel chair, a shopping trip to Walmart and many other things!!
It is a great program and my budget this year is $800.00 and my first request is for a portable exercise cycle. I have not been able to turn these pedals since my aneurysm but I am bound and determined to do it!! I am asking for a new walker because mine is stretched out from all my recent falls and barely goes thru the doors in my house. The last thing for my 1st quarter request is for a pager because my fiance stays downstairs and watches tv with his son and our dog while I stay upstairs on my computer. There was a time I would go downstairs and we would all play games but now it has just gotten to hard for me to use the stairs. I am hoping the physical therapy will help to strengthen my legs and get me back to walking with the walker with no problems!!Anyway we can never hear each other so this would help us to communicate with one another. I have picked out things for the whole year but only do so much each quarter. Everyone out there should check with their County Health Dept to see if they have this program. It is a great program as you can see.
Then Friday I went to my primary doc to get some blood work done and a prescription for something to help me with this edema. This swelling is the reason for all the weight gain, yeah that's it!! But seriously, I have never been this big in my life and my legs which people used to call chicken legs are more like elephant legs now.
Anyway that is how my week was and next week I just have PT on WED and FRI!! Oh and another thing, the doc at Johns Hopkins says she does not feel any spasticity in my leg but I have leg stiffness, and the difference is?? One way or another I am going to work my way to using the 2 canes I have by years end and drive again!! Wish me luck and stay off the roads in Southern MD.
Update: 5 September 2005
Found out at the end of July that I am diabetic, type 2. He did have me checking my blood sugar 3 times a day but on my last appt. (9/1) he told me he was very happy with my numbers (of course he has me on 3 pills) and was most happy with me for losing 9 pounds in one month! He is also going to reduce my pills from 6/day to 4/day.
Also, I am happy to report that my knees and back are no longer bending so I am no longer falling!! I guess the short leg brace and p.t. did what it was supposed to do. However, on the down side, I am still having lots of pain in my leg and especially in my foot.
Hope everyone has a safe and happy Labor Day!!
Update: 7 October 2005
Just a real brief update to let everyone know that yesterday (10/6) was the 6th anniversary of my aneurysm and tomorrow marks the 6th anniversary of my brain surgery-aneurysm clipping. Sadly, I must report that I am still suffering from a great deal of spasticity pain in my left leg and foot. And even sadder is the fact that my birthday is just over a week away and I will be 49. Soon I will be eligible for AARP!!
Update: 28 August 2006
As everyone knows I suffer from extreme pain in my leg and foot. Although I had a Baclofen pump implanted in 2004, it has not brought any relief to the stiffness I have. On Sept. 12th I will go to the hospital to have morphine put in the pump together with the baclofen and see if that brings me any pain relief. It is just an overnight stay! Please pray that this will bring me some relief.
Update: 6 October 2006
Today, October 6, marks the 7th anniversary of my brain aneurysm. I continue to suffer a lot of pain in my left leg and foot. The morphine trial did nothing to alleviate this pain.
I would like to clarify that I do not feel this pain is from the aneurysm but actually is a result of surgery I had in December of 2002 to lenghthen my achilles tendon. I had the aneurysm in 1999 but this pain did not start until around February of 2003, not long after that surgery. But of course, I cannot find a doctor who will admit that this surgery was messed up!
Update: 10 October 2007
Yesterday, 10/6/07, marked the 8th anniversary of my brain aneurysm. Nothing has changed although I now have a date for my spinal cord stimulator "trial" and that will be on 10/25! This stimulator will supposedly mask the pain I now have in my left leg and foot. The doctor says it is similar to laughing gas, when the dentist gives you that, although the pain is still there, you really do not notice it! I will let you all know if it worked for me or not after the 25th.
In case anyone else is interested your may email me for a link to the spinal cord stimulator website.
Update: 8 November 2007
On October 25, 2007, I went in the hospital to receive the spinal cord stimulator on a trial basis. They wake you up during this surgery so you can tell them if you are feeling the "sensation" where you normally felt your pain. He said I woke up and told him but I have no recollection of doing this. However, I do remember on the way to the recovery room, waking up and asking where I was and who were they?? This went on for a couple of minutes til I realized where I was and why I was there LOL This was on a Thursday.
The following Monday I went back to my doctor to discuss how it was working and also attending this appt. was a rep. from Advanced Bionics, makers of the stimulator. I told him how I was feeling it more in my right leg (the pain was in my LEFT leg and foot) So my doc told me that perhaps on the implant they could put another "lead" in beside the other one and then make sure I was not as doped up and more able to answer their questions during the surgery.
Anyway, I went in the next day, Tuesday, for the actual implant.This went much better and I actually remember being woken up and asking if I felt the sensation in my left leg and I did! I had my follow up appt yesterday and he said it was healing very nicely and I could come back next Tuesday and get the stitches removed.The rep was there again to make some programming changes and to direct the stimulator to go into my left foot and lessen it from above the knee. I have a remote that I can adjust the sensation up or down as needed.
I would recommend this stimulator to anyone who suffers from pain. Neither the trial or the actual implant involves an overnight stay at the hospital. If anyone has any questions about this procedure, feel free to email me!!
Update: 2 February 2009
I have made a decision to have all of the "stuff" removed from my back--the baclofen pump and the stimulator. The pump never did work very well and instead of having to go and get refills of the baclofen I have decided to start taking the oral baclofen. I am also now on a muscle relaxer to try to stop the tightness in my leg and foot. These 2 meds together seem to be giving me some relief and although I still have some pain my decision to remove the hardware from my body will stand!
Update: 9 October 2009
This week marked the 10th anniversary of the clipping of my brain aneurysm.Every year at this time, I like to go back over my medical records from that time as I have no recollection of the hospital, surgery, or recovery time. Only information I have is what I was told by family members or what I read in the medical records.
I am truly amazed that I survived the aneurysm after reading the report from the first hospital I went to. The paramedics found me to be completely comatose, showing decerebrate, and to be having some difficulty breathing. I had markedly clinched teeth and could not be intubated. They also said I was being bagged! This hospital also prepped me for the helicopter which took me to Charleston Area Medical Center which performed the craniotomy that saved my life!!
Update: 7 October 2010
Today, October 6, 2010, marks the 11th anniversary of my brain aneurysm. This update is very brief in that there is really nothing new to report. Hard to believe that 11 years have gone by and even harder to believe that in 9 short days I will be 54 years old!! So I just wanted to take a few minutes to say that I have met so many wonderful friends in this group and also to thank Susan and Jim for doing a great job on this site after we lost Bill. Hope everyone has a fun Halloween!!!
Update: 9 October 2011
Today I celebrate my 12th anniversary of my brain aneurysm surgery. Unfortunately this past month and a half have not been so good to me. First I went about 3 months unable to eat more than a biteful of food. Then I went into the hospital only to find out that I now have stomach cancer.First they implanted a feeding tube in my stomach which means no more food through the mouth. I go for my first chemo treatment this coming Monday, the 10th of October. Please pray that I will get through this rough time! Thanks so much.
Update: 24 October 2011
I almost forgot to let the family know that on September 30,2011 I married Tony, my sweetheart of almost 20 years!! :)
Update: 26 December 2011
We received news today that Joyce lost her battle and passed away December 22, 2011. Rest In Peace, Joyce.
© Copyright 2004 Joyce Willett
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