Regression after better months

Symptoms and Treatments Post Surgical Recovery
1

Hello all.. My mother had a SAH on Feb 23, 2014. Today actually marks 11 months.

When she first came home after 4 wks in the hospital, she suffered bad headaches and crazy elevated blood pressures for probably a month. After all she was fresh out of surgery, all that was expected.

After that initial settling down, she was definitely getting better for about 3-4 months. Progressing in slow baby steps, but nonetheless improving. She was going on long drives, doing physical tasks such as taking a shower, doing errands in house, all in all looked like her stamina was building.

BUT, (and here's where my concern lies), after that, the past 6 months she seems to be going backwards. She can't tolerate the things she could do months after the surgery. Even taking a shower results in SO much fatigue that its something she has to think twice about doing and mentally prepare herself for the resulting neurofatigue. Also she cant sit in a moving car for over 10 minutes now, meanwhile I had her going from NY to PA before. Her ability/stamina/energy/physical capacity has deteriorated. It seems like she came back from the hospital holding on to her previous energy from before the surgery, and then ran out after a couple of months.

It is just weird that she could do these things after the surgery. Not sure why she's having trouble now. We got a CT scan done in October because we were concerned. It was normal, besides showing an everrr so slight increase in ventricular size which the neurosurgeon and radiologist both said doesn't account for her symptoms since the symptoms of hydrocephalus are totally different (confusion/memory loss, incontinence, gait imbalance). They said it probably just looks a tiny bit bigger because we're comparing it to her last CT which was after the surgery- things were still swollen etc.

I wonder if it's just the mostly uncontrolled blood pressure, and once that resolves, will she not hit the wall so much from any little activity. She has been on such a variety of meds to control it- can't seem to find the right combination.

Anyone else here have a phase of months where they were bewildered at their standstill or reverse gear progression? Her biggest issue is this fatigue is getting worse rather than better, and the BP is not helping her overcome it. Any suggestions on what to eat/drink to boost energy?

2

What does your mom think it is? It might PTSD, Post Traumatic Stress Disorder. First time I heard that I thought are you kidding only soldiers or people who went through really stressful times get that way. After all I was improving. When I read about it did seem to make sense. Look it up. I’m sorry I don’t have an article to attach here.

3

Is your mom on beta blockers for her bp? They wiped me out.

4

I don’t have nutrition suggestions but I did experience similar symptoms. I had my surgery in Nov 2013 & besides the usual post-surgery issues I felt great. I felt great until February, by March I was on partial medical leave from work. I think its 2 fold, 1) I had a lot of numbness for months after surgery so I didn’t know I was in pain & 2) I was so excited that’d I’d survived but then I do feel I had some PTSD symptoms that set me back.
I hope your mom soon recovers. I have good & bad days, I think the emotional recovery is almost has important as the physical one.

5

I had one cerebral aneurysm coiled in 2007; another required a craniotomy and was wrapped in 2008. It took me a year to get back to what is now normal for me, but I don't remember fatigue being part of my after surgery issues.

However, 2014 was a rough year for me, fatigued much like you describe with your mother, and more. I couldn't walk through a grocery, I gave up driving because I knew I would be a danger to myself and others. Finally lab work showed I had become anemic, iron deficiency, and at my lowest point my hemoglobin was about half what it should have been. After numerous tests, minor surgical procedures, iron infusions, and receiving four units of blood, I finally felt great! I was able to go shopping, cooked Thanksgiving and Christmas dinners, baked Christmas goodies. I'm delighted to be driving again.

So my suggestion is don't assume your mother's problems now are solely related to her surgery. Make sure her doctors look for other causes for her symptoms. I hope your mother is better soon.

6

High blood pressure is really hard on the body. I have been on beta blockers for 25 years, but during cancer treatment, my BP was really going crazy and I ended up having to monitor it myself and adjusting my meds (I was on 3 different ones for a time). When I finished the treatment, my BP went back to normal - with the beta blocker I still am on, but a really low dose. I take Atenolol, an old BP med, but one I really like. Beta blockers do slow down your heart, which was good for me since I would have palpitations from high BP. My blood pressure was down really low right before my brain surgery and the hospital was close to cancelling it. A 2nd reading allowed me to have the surgery - my doctor did not want to take me off before the brain surgery because she said that Beta blockers helped protect the heart, especially during surgery. My heart rate is usually in the 60s which does not affect me - in fact I feel good at this rate.

Does your mom get short of breath? That is something I still have from my annie surgery 3 years ago and makes me feel fatigued. I am breathless just bending over - it finally got better, but now is getting worse again. I have had heart and pulmo tests done with everything looking normal and have another appt. with my pulmo to ask for some tests on my trachea (I also have Relapsing Polychondritis, which can attack the trachea, but I don't think that is the primary cause and it may be from the anesthesia). I have been advised from fellow RP'rs to ask for a dynamic CT of the trachea.

Has your mother also had blood work done with her regular GP? My GP is the one who is following up on my symptoms and has been great on ordering bloodwork. My thyroid count was getting on the low side of normal (which can cause fatigue, etc.) and she now has me on the med Armour - my levels are now good.

I hope you have some answers soon. It must be so disheartening for both of you. Oh, another suggestion, my doctor did order an Echocardiagram at the beginning. If she has not had one, that might be a good test to make sure her heart is not causing any of this (not invasive - a pretty interesting test). Let us know if you find anything.

Sherri

7

Must say that I have experienced nothing but stability since experiencing a right PCA aneurysm nearly 20 years ago. Made a decision then not to proceed with radical surgery, but watch and wait per suggestion of Mayo Clinic.

8

I think you still need to work on healthy behaviors such as exercise and diet. I had a lot of deficits with activities which I used to do. It was depressing. Yes, I could walk and talk, but I used to do more and better.

My aneurysm was in 2012. By making myself do things that were awkward, I eventually fixed many of the deficits. Yes, these were minor compared to what some suffer, but I have a lot of active interests and sports. Being 'incapable' was hard.

The hardest part was all the people telling me I was now 'fine', but I wasn't.

9

If you are in the NYC area, take her to see a great cardiologist - I recommend Dr. Alison Spatz at Cornell. Google her, she’s great. She can help with the BP, diet and exercise. She was the one who got Rosie O’ Donnell back on track after her heart attack, plus she’s treated my father, and I’ve been to her as well. Good luck :slight_smile:

10

I also think diet could help. Not too much sugar/carbs…tho you get those sugar highs…you then crash…feeling fatigue. Like cereal and juice…it’s just carbs. Try egg and bacon or yogurt…maybe a smoothie made with yogurt for breakfast. Make sure she . Gets a snack. …tea or decaf coffee might be a pick me up. A short morning walk.
Have you asked her regular doctor what he might suggest? He might work with a dietician who might have suggestions. Good luck…

11

I have a similar situation, but on a different time scale. I just had a cooling on Dec 17 and when I came home I was doing great in the recovery. but 3 weeks ago I started suffering bad headaches on a daily basis. Definitely car motion is a factor. I am ok for a short distance only like 5 miles at a slow pace. Highways just about kill me. I do have a second aneurism that I will be getting clipped in the next six months and I worry about whether the pain and headaches are because of the second on.



Besides the car motion, other triggers are loud restaurants, subways and trains and certain white-noise. My sister brought me some pills from Barbados called Panadol and it has worked well. It is an over the counter pain reliever that we can’t get here in Canada. It’s much better than Tylenol though so if you can get your hands on some do it.

12

I went back to work after a couple of months, did great for 4-5 months. I then started having severe balance issues and fatigue was horrible. I was found in my office one day by one of the nurses, doc checked me out and sent me to hospital. They thought I had a TIA or seizure, went on meds for seizures, I am now unable to work or drive, miss them both so much. Balance is bad everyday, more so when it is rainy or windy. My physical therapist told us that this was normal after brain damage. There are days I do not have any energy and can do nothing. Yes, taking a shower drains me. It has been 3 and half years since surgery - I had annie rupture on operating table. I have some brain damage from this and it limits me from doing the things I once was able to do. I still question why I felt so much better after the surgery also. Keep supporting her, loving her and be understanding that this does happen. My family has gotten me through all of this!! Prayers for all of you.

13

I had a severe long standing (many years as it turns out B12 deficiency) this is how my annie was discovered - I had a brain scan to check for MS as I was displaying many symptoms. Most are now resolved with B12 shots apart from the dizziness. B12 deficiency causes dizziness, extreme fatigue, numbness, BP issues, heart arrhythmia, cognitive issues amongst many others. Surgery can often be a precipitator. Has she been checked for it? x

14

Your story of your mother sounds like my life. I am almost at a year since I had a SAH. The few months afterwards I had WAY more energy and stamina than i do now. For me, it was depression. A SAH is such a life changing event that Chris' suggestion of PTSD are not to be dismissed. I don't know about your mom, but I was in the ICU for 28 days, came home, back in the ICU for 7 days. There are actual physical and mental repercussions for such long ICU stays. I hope your mom gets better and better. I'm fairly young for this, 48. Just stay strong for her and don't forget to take care of yourself, also. Best of luck.

15

I wonder if the brain has a delayed reaction after something like this. Retains something in it’s cache as a form of protection? Then once things settles down after surgery, it starts to actually heal and realizes it’s been hurt and feels the effects.

16

Sorry, to hear about your Mother's condition. Observing deterioration in a love one is always alarming.

Not sure if my wife situation is similar but I will put it out there for consideration.

My wife at age 60, had SAH, was in a coma for 40 days until she started waking up. SAH did a lot of neurological damage that she never recovered from; could not talk, degraded swallowing ability, could not stand up nor walk (her balance was off). Due to her inability to talk and possibly recognize her needs, she was functionally incontinent.

Recurring Aneurysm

Six months later, the implanted plug of the aneurysm migrated i.e. leaked again causing degrading in her ability.. became very sluggish, less alert. Took two months to convince the doctor something was wrong. Did a CT but it was so messy the radiologist recommended sending her back to the hospital where her aneurysm was plugged because they would understand her history.. ie. prior MRI data. Since your Mom is not exhibiting moments of high blood pressure, a recurring aneurysm may not apply to her condition.

There are two other issues we encountered during the subsequent years that may apply to your Mom situation:

1. Dehydration:
My wife would easily get dehydrated and have UTI issues. Both lead to decline in abilities. UTI can be observed in the odor & color of the urine, and sometimes show an elevated temperature. After the third visit to ER over 18 month period, the medical staff advised installing a g-tube, feed tube directly to the stomach, so we could give her the daily requirement of fluids. That addressed the dehydration & UTI issues.

2. Elevated Sodium level in the blood -
On the last visit to ER, the medical staff also identified a condition caused by the SAH: My wife internal system was no able to keep her electrolytes; sodium and potassium in normal range. she typically would have elevated sodium levels: (hypernatremia) that would cause my wife to be very sleepy, uncoordinated, and less responsive. Since she could not talk, we had to guess at what was going on.

A normally functioning regulating system will signal the kidney to dump more water or hold water in order to maintain sodium levels in the blood. Totally automatic process was damaged by the hemorrhage (SAH). The only way we could manage it, was to see a kidney specialist who recognized the condition as SIADH - Syndrome of Inappropriate Antidiuretic Hormone secretion. One of the causes of SIADH is SAH.

My wife had weekly blood tests until we were able to determine the right dosage of daily sodium (salt) intake to maintain her internal sodium level. Note that if your Mom does have this that she will need to take two forms of sodium: Salt and Sodium bicarbonate to keep the acidity of her blood - neutral.

Both of the above conditions can be detected in the blood tests.

We (my wife caregiver and I) took care of my wife, for three years at home after a year in various hospitalized care. last her colon cancer returned and was declared terminal and too weak for chemo. So we let her go home.

Hope this information is helpful.

No matter what enjoy your Mom while she is still with you.

Sincerely,

Richard

17

My hubby is 13yrs post clip and has steadily deteriorated physically now 66yrs old. Two yrs post op he could climb stairs and walk round the village albeit slowly, now he needs my arm to get from the front door to the car and we have a downstairs bedroom and wetroom. His appetite is less and he has lost weight. Mentally he isnt too bad most of the time. He is asphasic but does his own speech therapy at the pub! :) He is also a controlled epileptic now